The Electronic Resource Guide For Supports Coordinators



The Electronic Resource Guide For Supports Coordinators
Electronic Resource Guide
For Supports Coordinators
and SC Supervisors
Pennsylvania Department of Public
Office of Developmental Programs
Message to Supports Coordinators
From the
Deputy Secretary
It is my pleasure to introduce you to the Pennsylvania Office of Developmental Programs’ the
Electronic Resource Guide for Supports Coordinators and SC Supervisors. The Guide is a
resource designed and customized for Supports Coordinators who work in the Pennsylvania
Developmental Programs system. The purpose of the Guide is to provide reliable and consistent
information to Supports Coordinators. The material in it is based on recommendations provided
to the Office of Developmental Programs through statewide forums and other feedback.
The Office of Developmental Programs has heard your request for a comprehensive resource
for Supports Coordinators that is practical, user-friendly, and flexible. A copy of the Guide is
( Electronic Resource Guide for Supports Coordinators and
SC Supervisors is one of many resources that Supports Coordinators can utilize in performing
their daily responsibilities.
We thank you for the important role you play in the lives of the people you serve. Your role is
imperative as people rely on you. You assist people in locating, planning, and monitoring
services and supports. You are the eyes and ears of our system, you help to ensure the health
and welfare of the people you serve, and you are the voice of reliable and consistent
We hope this Guide will assist you in performing your daily responsibilities, and will help you to
grow and succeed. Thank you for all of your endeavors and continuing contributions to the lives
of people with mental retardation and developmental disabilities.
Kevin T. Casey
Deputy Secretary for Mental Retardation
Please avoid printing the entirety of this Guide. Since information will be updated on a regular
basis, printed versions may quickly become out-of-date.
The most up-to-date
date version of this
Guide can be found at the Supports Coordination Information Center website:
Always refer to source documents, such as Department of Public Welfare Bulletins, for more in depth information.
If you experience difficulty with links contained in this
t his Guide, talk with your information/technology
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Thank you for using the Electronic Resource Guide for Supports
Coordinators and SC Supervisors .
Pennsylvania Office of Developmental Programs Supports Coordinators
What Supports Coordinators said about the need for this Guide
Support Coordinator’s Statement of Principles
Supports Coordinator’s Code of Ethics
Supports Coordinator Elements of Excellence Service Based on reflections from Supports
Ten Tips to Providing Excellent Customer Service
Office of Developmental Programs Mission, Vision and Values
ODP Customer Service Number
Everyday Lives
Everyday Lives: A Framework for ISP Planning
Self Determination
People First Language
Positive Approaches
Positive Practices
Positive Practices Resources Allocation Process - PPRT
The Office of Developmental Programs Consulting System (OCS)
The Partnership
Health Care Quality Units (HCQU)
College of Direct Supports
Supports Coordinator Roles & Responsibilities
Medication Monitoring: Helpful Questions to Ask
Dysphagia Checklist
Eating, Drinking and Swallowing Checklist
Prioritization of Urgency of Need for Services (PUNS)
What does PUNS stand for?
Why Do We Complete the PUNS form?
How often is the PUNS completed?
Who completes the PUNS Form?
Find out more about the PUNS process
SIS© and PA Plus (Standardized Needs Assessment)
Who is assessed?
What the SIS and PA Plus do and don’t do
What is the process?
What are the roles of the AE and supports coordination?
What is the PA Plus?
SIS and PA Plus Resources
Service Notes Standards
HCSIS: Home & Community Services Information System
HCSIS Data and Information Reports
The Learning Management System (LMS)
Rate Setting
Lifesharing Through Family Living
Supports Coordination Expectations
Expectations of Supports Coordinators
County MR Program/Administrative Entity (AE) Expectations (Supports Coordinator Role)
Medical Assistance for Workers with Disabilities (MAWD)
Work Incentive Planning and Assistance Projects (WIPA)
Independent Monitoring for Quality
The Waivers
What is a waiver?
Consolidated 2176 Waiver
Person/Family Directed Supports Waiver
OBRA Waiver
Independence Waiver
Regulations: An Overview for Supports Coordinators
Pennsylvania Advocacy and Support Resources
The Arc of PA
The Disability Rights Network (formerly “Pennsylvania Protection and Advocacy,” and, “The
Disability Law Project”)
Education Law Center – PA
The Institute on Disabilities
Mentor Parent Program NW Rural PA
Mentors for Self-Determination
PA Developmental Disabilities Council
PA Health Law Project
Parent Involved Network of PA
Parent to Parent of PA
PA Premise Alert System
PA Statewide Independent Living Council
PA Tourette Syndrome Association
PA Waiting List Campaign
Self Advocates United as 1
Speaking for Ourselves
Special Kids Network
Vision for Equality
Relevant Laws Relevant Acts
The Olmstead Ruling
What is Olmstead?
Why is Olmstead important?
Pennsylvania 1966 MH/MR Act
The American with Disabilities Act
ACT-13 OF 1997
ACT 28
The Health Insurance Portability & Accountability Act 1996 - DPW HIPAA Privacy Notice
The Family Educational Rights & Privacy Act (FERPA)
The Fair Housing Act
Domiciliary Care Program
Personal Care Homes
Representative Payee
Assistive Technology Devices and Services
Auxiliary Aids/Assistive Listening Devices
Medicare & Medical Assistance
Pennsylvania State Offices and Departments
Aging, Department of
Area Agencies on Aging (AAAs)
Child Development and Early Learning (OCDEL)
Infant and Toddler Early Intervention
Children, Youth and Families (OCYF)
Developmental Programs (ODP)
Bureau of Autism Services
Education, Department of
School to Adult Life Transition
Transition Map
Health, Department of
Income Maintenance
Rent Rebate
LIHEAP – Low Income Home Energy Assistance Program
Long-Term Living (OLTL, formerly, Office of Social Programs, OSP)
Medical Assistance Programs (OMAP)
Medical Assistance Transportation Program (MATP)
Mental Health and Substance Abuse Services (OMHSAS)
Public Welfare, Department of
Vocation Rehabilitation, Office of (OVR)
ODP Bulletins
Agency With Choice Financial Management Services (AWC FMS)
Clarifying the “30-Hour Rule”
Communication Supports and Services
Consolidated and Person/Family Directed Support Waivers Provider
Appeals Process
County to County Relocations
Disability Rights Network Access to Records and Joint Investigations
Domiciliary Care for Persons with Mental Retardation
Domiciliary Care Payments and Waiver Funding - Clarification
Due Process and Fair Hearing for Individuals with Mental Retardation
Elimination of Restraints through Positive Practices
Guidelines for Identifying Persons with Mental Retardation and Mental
Illness for State Mental Health Hospital Discharge
Home & Community-Based Service Eligibility / Ineligibility Change Form
Individual Eligibility for Medicaid Waiver Services
Lifesharing through Family Living
Administrative Entity and Provider Contracts
Clarifying Eligibility for Mental Retardation Services & Supports
Consolidated Waiver Service Definition Amendment Effective July 1,
Coordination of Treatment and Support for People with a Diagnosis of
Serious Mental Illness Who Also Have a Diagnosis of Mental Retardation
Employment, Office of Mental Retardation Policy
Incident Management
Individual and Provider Appeals – Clarification
Individual Education Program (Development of): Roles and
Responsibilities of County Mental Health/Mental Retardation Programs
Medical Assistance for Workers with Disabilities in the Community
Mental Retardation Program
Need for ICF/MR Level of Care
Person/Family Directed Supports Waiver Amendment to Allow for the
Provision of Respite Services in Contiguous States
Person/Family Directed Support Waiver, Approved Renewal
Person/Family Directed Supports Waiver Cap 2008-2009
Person/Family Directed Supports Waiver Service Definition Amendment
Effective July 1, 2009
Positive Approaches
Principles of the Mental Retardation System
P.R.N (Pro Re Nata) Medication Usage for Psychiatric Treatment –
Clarification of Interpretation
Provider Profiles for Mental Retardation Providers
PUNS Manual
Qualification and Disqualification of Waiver Providers
Representative Payee Function: Clarification of Payment
Service Definitions (in effect July 1, 2009)
Service Delivery Preference, Procedures
Services Requiring Third-party Insurance Review Prior to Consideration
for Waiver Payment
Service Review Protocol for Individuals in the Consolidated and P/FDS
Waivers (replaces obsolete bulletin 00-05-06)
Sexuality – ODP Guidelines
Sign Language / Interpretation Bulletin
Supports Intensity Scale SISTM and PA Plus Users Manual
Supports Intensity Scale© and the PA Plus (Overview)
Vendor Fiscal/Employer Agent Financial Management Services (VF/EA
OCS Bookmark
ODP Acronym Card
Pennsylvania Office of Developmental Programs
Supports Coordinators
What Supports Coordinators said about the need for a Guide:
“Have the handbook available to consumers and their families especially the Spanish speaking
populations. Why? So consumers and families know exactly what our job entails us to do.”
“Keep it online. Keep it current.
understandable language. “
Need to know what bulletins are most current.
Keep it
“Please it takes 3 months for a new Supports Coordinator to even begin to try and understand our
role. I had no clue what my role was as Supports Coordinator when I started and it was not clearly
defined by my supervisors.”
“Long overdue. Frustrations with position are largely due to lake of underst anding the job, lack of
written procedure and policy.”
“This would benefit the consumer who moves from one county to the next in regard to consistency
of care.”
“Clearly defined roles and responsibilities, include aspects of computer training with clearly defined
definitions of Waiver programs where the funding is coming from and what services can be
acquired by each type of Waiver program.”
“Information should
uld be useful for new Supports Coordinatorss as well as veteran Supports
“Definitely needed. In
In my
my county
county the
the role
role of
of an
an SC
SC changes
changes every
every year.
year. Some
Some consistency
consistency is
needed and if there is a handbook, something we can use as a guide, I believe our jobs can run
more smoothly.”
Table of Contents
Supports Coordinator Statement of Principles
Individuals and families must have ongoing access to effective, responsive, and reliable
individual service coordination as needed.
Supports should follow the wishes and needs of each individual utilizing formal and
informal supports.
The Supports Coordinator should represent and advocate for the individual promoting their
independence in a conflict free environment.
Table of Contents
upports Coordinator’s Code of Ethics
VALUE OTHERS Only when you value others, can other people see the value of your efforts.
BE CONFIDENT AND POSITIVE Confidence and a positive attitude from you will promote a
positive attitude towards you.
BE FAMILIAR People are more willing to trust
and try new suggestions from someone with whom
they are familiar.
BE THERE FOR THEM Being accessible for questions/concerns helps to maintain a positive,
constructive relationship.
DEMONSTRATE CONCERN Satisfaction with your efforts comes from the individuals and families
eeling that
that their
their needs
needs and
and con
concerns are heard and understood.
COMMUNICATION SKILLS Everyone involved in the communication
process must understand each other com pletely.
AGREE TO DISAGREE Turn conflict into a constructive exchange of ideas. Keep
eep energy
energy focused
on the desired outcomes.
SHOW COMMITMENT The number one expectation of people is that you will do wh at you say you
are going to do.
BE HONEST Set a realistic picture fo what
what the
the system
system can
can and
and cannot
cannot do
do and
and foster
foster aa common
Table of
of Contents
Supports Coordinator Elements of Excellent Service
(based on reflections from Supports Coordinators)
Make People Feel Valued (Only when you value others, can others see the value of your
efforts). During intake - and at each of your contacts with the individual or family…
 Be nonjudgmental and respectful.
 Put yourself in their shoes. Remember that one size (one service) does not fit all.
 Never allow them to feel like a “number.”
 Provide them with an incentive to return.
Be Confident and Positive (Confidence and a positive attitude from you will promote
confidence and a positive attitude toward you)
 Work with the person. Let them know you will work to find solutions and keep them in
the loop.
 Remember that it helps to have a friend on the “inside.” A Supports Coordinator can
be that friend.
 Demonstrate confidence and a positive attitude toward the county and providers.
Be Familiar (People are more willing to trust and try new suggestions from someone familiar)
 Provide face-to-face contact when possible.
 Provide a “personal touch.” Use their name and make eye contact. Include small talk
about their family or recent activities.
 Make sure they are comfortable when visiting agencies.
Be There For Them (Being accessible for questions or concerns helps to maintain a positive,
constructive relationship)
 Focus on the person and not on other distractions.
 Be on time and organized. Have the necessary information and paperwork ready.
Their time is as important as yours.
 Be accessible, responsive, and prompt in answering calls. Make returning calls for
individuals a priority. If phone access is problematic, provide emails, etc.
 Make sure they can talk to a live person, when needed.
 Provide your business card with extension or direct number. Include back up contacts
when you know you will be away or on vacation.
Demonstrate Concern (Satisfaction with your efforts comes from the person or family feeling
that their needs and concerns are heard and understood)
 Take the time to answer initial questions in a way that can be understood
 Make sure your responses are based on what the person or family wants, not what you
think they need.
 Identify alternative solutions and share options so that they can make an educated
 Aim to make them feel their needs have been understood.
 Give more than what was expected.
Good Communication (Everyone involved in the communication process must understand
each other completely)
 Listening skill: validate with the person/family what you hear.
 Be sure you have a shared understanding of outcomes.
 Keep everyone informed of the status or changes throughout the process.
 Use everyday language with no acronyms.
 Think of ways to say, “No.” You may want to say, “What can we offer to meet your
Agree to Disagree (Turn conflict into a constructive exchange of ideas; keep energy focused
on the desired outcomes)
 Let the person or family know it’s ok not to agree.
 Let them know who they can call if they don’t agree.
 Help them understand what you can do and what they can do to address issues.
 Provide information about the appeal process.
Show Commitment (The number one expectation of people is that you will do what you say
you are going to do)
 Recognize how much support may be needed. Get help when need. Understand
 Take responsibility and give correct information.
 Be honest. Do what you say you are going to do. Involve others when needed.
 If a mistake is made,
e, acknowledge it and provide a sincere apology.
Table of
of Contents
Ten Tips for Providing Excellent Customer Service
(Adapted from a document created by
 Be honest: Don’t make promises to customers unless you know you can deliver upon them.
To promise to remedy the situation, by saying you’ll call back with the next hour, and then fail to
do so will leave customers angry and dissatisfied.
dissatisfied. IfIf you
you can’t
can’t solve
solve the
the problem
problem immediately,
say so. Customers will tend to be more forgiving if you level with them.
 Be helpful: Try to get the problem resolved. Deal with it the first time (when possible),
speedily, and with the least amount
of hassle to the customer.
 Be friendly and polite in your dealing with customers: Be sure customers feel valued by your
agency and that their complaints or views are genuinely taken into consideration. Give
customers a chance to air their concerns rather
r ather than talking over them. Courtesy costs nothing
and will go a long way to building a sound and long-term
long term relationship with customers.
 Be responsive: Learn what is important to the person, resolve problems, answer inquiries, and
generally make the experience of working with you as easy, clear, and smooth as possible. It
is an opportunity to gain insight into the priorities, concerns, and opinions of c ustomers.
 Be Knowledgeable: Dealing with customer inquiries requires your knowledge of the system,
supports and services, available community resources, and other people they can connect to in
addressing important issues. It is imperative that those actually answering the inquiries from
customers know about the system and how to connect with other resources (including other
people and experiences that may be helpful).
 Be a Good Communicator: Effective communication means consistently telling c ustomers as
much as you can as soon as you can.
 Be Calm: There’s
There’s no
no point
point in
in getting
getting into
into aa heated
heated argument
argument with
with your
your customers
customers where
where itit can
be avoided. Never lose your temper, and always concentrate on the resolution rather than
focus on the nitty-grittyy of the problem. Sometimes you may need to back down when you
know they are not ready to consider the options you present.
 Be Available: Make it easy for customers to get in touch with you (or your supervisor). Find
out ways your customers prefer to get
ge in touch with you.
 Be Clear: Don’t use jargon, seek to simplify and explain what’s happening in plain, clear
language. If the customer feels he is being patronized or talked down to, he will be much les
likely to want to interact with you in the future.
 Be Prepared to Handle Conflicts: Customers will often call with a grievance, and they should
be allowed to air it. Once this is done, take the opportunity to direct where the conversation is
going. You should break the problem down into specific point s and summarize these back to
the caller to clarify the exact nature of the complaint and to show that you are aware of what he
problems are. Be clear about the actions
they need to take and what you have promised to do.
Table of
of Contents
Office of Developmental Programs
The Office of Developmental Programs’ mission is to support Pennsylvanians with
developmental disabilities to achieve greater independence and quality of life.
Our vision is to continue refining a system of quality services and supports
delivered in respectful, inclusive environments, to foster competent, evidence -based
practice, and to extend our reach to all Pennsylvanians with developmental disabilities
who need our services.
The values articulated as principles in the Everyday Lives document and the values
articulated in the Autism Task Force Report set the direction for the developmental
disabilities service system. They provide context and guidance
idance for policy development,
service design, and implementation, and decision-making.
In addition to the system values described above, the Office of Developmental
Programs adopts the following principles to guide the daily work of the Office. ODP
Stafff is expected to integrate these principles into the performance of their daily
Transparency – to continuously share information and talk with internal and external
stakeholders; to listen to individuals with developmental disabilities and their families,
caregivers, and friends;
Excellence – to embed best practices to consistently safeguard and support
individuals, families, and caregivers;
Accountability – to administer programs and allocate resources equitably; to be
fiscally responsible
sible for all stakeholders;
Collaboration – to work together with our partners to achieve our mission and vision
on behalf of the citizens of Pennsylvania.
Table of
of Contents
ODP Customer Service Toll Free Number
For General Information and Concerns
Toll Free TTY (telephone for hearing impaired)
People may call with questions or concerns regarding services, the waivers,
regulations, licensing, provider enrollment, fiscal management, trainings,
provider agencies, etc.
A Customer Service member will answer calls from 8:30 a.m. to 4:00 p.m ., Monday through
Friday.. Callers
Callers after
after these
these hours,
hours, or
or on
on holidays
holidays may
may leave
leave aa confidential
confidential message
message on
on voicemail.
Please speak slowly and clearly when leaving a message; include your name, telephone number
and area code where you can be reached, and the best time of day to reach you. You may also
include detailed
etailed information
information regarding
regarding your
your question
question or
or concern.
General questions will be answered by the ODP customer service team, but questions around
specific situations will be referred to the ODP regional offices. When calls are referred to the
regional offices,
ices, the caller will be contacted by the end of the next business day to obtain additional
follow-up information.
Individuals with immediate needs or emergency situations
s ituations should contact their Supports
oordinators or the county MH/MR office.
* The TTY phone number does not have voicemail
ble of Contents
Everyday Lives
In 1991, the Office of Developmental Programs convened a planning retreat with members of the
OMR Planning Advisory Committee (PAC) to develop an overall vision for Pennsylvania’s mental
retardation service system. The PAC, which was the first advisory body to the Office of
Developmental Programs to include people with disabilities and families as full participating
members, focused its work on what people with disabilities and families said was important to them
and what kind of support they needed. The result of the PAC’s efforts was Everyday Lives,
published by the Department of Public Welfare in 1991.
Since its publication the values and vision expressed in Everyday Lives have provided the
framework for planning, policy development, service design and all related activities in the mental
retardation service system. Everyday Lives has served as the foundation for both the
Pennsylvania’s Multi-Year Plan for the Mental Retardation Service System and the Plan to Address
the Waiting List. The values articulated as principles in Everyday Lives; Making it Happen, set the
direction for the service system. They provide standards for policy development service design and
decision-making. They articulate the outcomes in person-centered terms that our system should
achieve and they are a guide for personal action.
Choice – in all aspects of life including the services people receive, who provides supports, where
to live and with whom, where to work, recreation and leisure activities, vacations, planning
individualized day activities, and having support provided at home.
Control – over a person’s life including relationships, budgets and how money is spent, supports,
and services they receive, medical issues and planning.
Quality – of life determined by people. People want quality supports and services to enable them to
have the life that they want. When people pay for high quality supports, people expect to get high
Stability – feeling secure that all changes in their lives are made only with their input and
permission – “nothing about me without me.”
Safety – to be safe at home, work, and school and in their neighborhood, as well as in all other
aspects of their lives. People want services that ensure individual health and safety without being
overprotective or restricting them.
Individuality – being known for their individuality and being called by their name. Being respected,
by having privacy of their mail, files, and history and being able to choose to be alone at times.
Relationships – with family, partners, neighbors, community people such as pharmacists,
hairstylists and grocers, support staff and having friends they choose.
Freedom – to have the life they want and to negotiate risk. People want others to use ‘People First’
language and to have freedom from labels. People with disabilities have the same rights afforded to all
citizens. They want to exercise the freedom of choice, to associate with people they choose, to move
from place to place and to use complaint and appeal processes.
Success – freedom from poverty and having a chance to be successful in the life they choose. Living
independently with sufficient support to be successful and having expanded opportunities for employment
with supports provided as needed.
Contributing to the Community – being full citizens of the community, voting, working for pay or
volunteering, participating in leisure and recreation activities, belonging to a religious community, owning
or renting one’s own home, living among family and friends and not being segregated. People want to be
recognized for their abilities and gifts and to have dignity and status.
Accountability – State and county government, together with support workers, provide the services and
supports that people need when they need them and make sure that they don’t lose needed supports that
they already have.
Mentoring – people and families trained as mentors to help other people and families by providing
information and working with them until they can do things on their own; experienced Supports
Coordinators mentoring new Supports Coordinators; senior support staff mentoring new support staff; and
individuals and families mentoring support staff.
Collaboration – between the Office of Developmental Programs and other offices within the Department
of Public Welfare and other state and federal departments. People want collaborative planning during
times of transition. They also want a seamless system that bridges from education to
people/services/systems that are involved with them.
Community Integration – in all aspects of the person’s life. People want to be able to use community
resources, like banks and food stores, just as other people in the community do, without feeling left out
because of a disability. Integration means both being in the community and having the opportunity to
participate in all that the community has to offer; including generic resources that don’t label people as
Click to view the ODP Bulletin 00-03-05, “Principles for the Mental Retardation System”
Table of Contents
Everyday Lives: A Framework for ISP Planning
Everyday Lives: A Framework for ISP Planning is a resource for Supports Coordinators, individuals,
family members and providers to use to promote the integration of the Everyday Lives Values into the
planning process for individuals supported through the Office of Developmental Programs. The
Framework helps us to think about how the core values of Everyday Lives can be present in a person’s
life and guides us in capturing this information in the person’s ISP.
The instrument and process was developed for individual self-reflection or to reflect with others on the
connection between a person’s ISP and Everyday Lives. Understanding this connection will help the
team develop a plan to achieve outcomes that will help people get the life they want.
The development of the Everyday Lives: A Framework for ISP Planning started in 2004. Over the years
input was obtained from a wide variety of stakeholders on design, use and implementation. Stakeholders
included individuals receiving supports, family members, Supports Coordinators, Supports Coordinator
Supervisors, County Administrators, Providers and ODP.
The Framework was used twice to review two “real” ISPs. Reviewers included Supports Coordinators,
Supports Coordinator Supervisors, County MR Administrators, Family Members, ODP and OCS. Here’s
what people said after using the guide in a facilitated group process:
“Long overdue accountability for Everyday Lives”
“Refocus on person, not CMS requirements”
“Improves specifics for best practice documentation”
“Helps make person centered thinking tangible”
“Provides new learning - ah, hah moments”
How to use the Everyday Lives: A Framework for ISP Planning:
There are no prerequisites or requirements for use; familiarity with the ISP and the values of Everyday
Lives is strongly recommended. Use retrospectively at first; can be used proactively after having more
experience using the Framework.
 Supports Coordinators
 Self reflection - select an ISP for a person you support and review for personal growth
 Group Learning and peer support - in a group of Supports Coordinators and with the
supervisor, select one or more ISPs, review and compare arrow marking, strengths and
weaknesses (sample plans without identifying information are available)
 Plan Development - use proactively with supervisor or with the team to develop the ISP; bring
to the team meeting to generate new ideas and strategies
 Supports Coordinator Supervisors
 Supervision - select one or more ISPs and review with supervisee to identify areas of
strength and learning needs
 Group Learning and leadership support - in an entity with more than one supervisor or with
more than one county, select one or more ISPs, review and compare arrow marking,
strengths and weaknesses (sample plans without identifying information are available)
 Providers
 Group Learning - use with staff to bring together the Everyday Lives values with the ISP and
daily life
 Individuals and Families
 Plan Development - bring along to the team meeting to generate new ideas and strategies
The Office of Developmental Programs Consulting System (OCS) is available to provide training and
technical assistance prior to use. The Everyday Lives: A Framework for ISP Planning is available for
download from the OCS Website:
Table of Contents
Self-Determination is another way of saying freedom. It is a fundamental human right. It is a
right for “all people.” It means that people have authority over how their lives will be lived, where
and with whom. It means that people have control of the resources needed for their support, as well
as the responsibility for their decisions and actions.
The concept of Self-Determination has spread throughout the nation in recent years and it
is the basis for people having everyday lives. An everyday life is having a life that is typical of the
general population. Self-Determination is not just for a limited group of people. It is for everyone
including children, young adults and older adult whether they need a lot of support or they can live
on their own. It means having friends to play with as children, having jobs and serving in their
churches as adults, and choosing how to spend their time in retirement. Individuals and their
families want to have everyday lives. Parents, who are providing care for their sons or daughters
with disabilities, often do not have the opportunity to do ordinary things that other people in society
take for granted such as going to the movies or out for dinner together and attending community or
school meeting. As the person with a disability grows older, his or her life - consequently the life of
the family do not follow the typical path. In our society, children typically grow up to become
independent and then move out of their family’s home. Bus as many individuals with mental
retardation age, they continue to live in their family’s home relying on their aging parents and
siblings for support.
Excerpt from “Everyday Lives, Making It Happen”
Pennsylvania Department of Public Welfare
Office of Developmental Programs
Self Determination Principles for Action
People have the right to choose how they will live their lives, where and with whom. When people
need help, it is friends and family closest to them who assist them in broadening their experiences
and exercising their right to choose. It is essential that each person have a network or circle of
support chosen by them.
The relationships a person has with others are like precious gems and should be treated in that
way. A relationship must be treasured, nurtured, and protected. Those with who the individual has
real relationships provide the strength, assistance, and security which ensure each person’s wellbeing.
Everyone has the ability to contribute to their community in a meaningful way. Giving of ourselves
helps us establish a sense of belonging and identity. Community membership includes having an
opportunity to be employed, to have your own home, to be truly involved in the routines of the
community and to make a difference in the lives of others.
Individuals, as they take greater control
control and
and authority
authority over
over their
their lives
lives and
and resources,
resources, assume
greater responsibility for their decisions and actions. They are also responsible to contribute to their
supports if resources exist to do so. Professionals and staff work for the individual rat her than for
the system. Families, friends, and staff assist people to create more meaningful relationships, link
them with needed supports, remove barriers, develop safety networks, and help make dreams
come true – while never forgetting who is in charge.
People have the power to make decisions and truly control their lives. This includes authority over
financial resources, as well as the authority to determine what support is needed and how they will
be implemented and by whom. People also have control of hiring those who will provide support.
All people have hopes and dreams which guide the actions they take and are most meaningful to
them. A commitment to helping people determine their dreams, respecting those dreams, and
helping make
ake dreams come true is crucial.
All people have an inherent right to be treated with dignity and to be respected as a whole person.
Most of life’s greatest lessons are learned when we make choices that we later realize were
mistakes.. All people have the right to the dignity of risk. The network of support makes risk possible
by weaving a safety net which provides safety and supports growth.
Making things happen does not always require money. It is imperative th at alternatives to paid
supports be found. When support must be purchased, people will get what they need, pay only for
what they get, make real investments, spend money more efficiently, and make adjustments when
they are needed. To find the best quality for the most reasonable price, people are free to
purchase in and out of the system.
An attitude that nothing is impossible, as long as it is legal and causes no harm is required. “No, we
can’t” as an answer is replaced by “How can we make this happen?” Those who work in the system
become barrier removers.
Table of
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Center for Self-Determination:
Determination: http://www.centerforself
A Few Words About P
GE by Kathie Snow
Visit to see the original, full-length article.
People with disabilities constitute our nation’s largest group. It’s also the most inclusive: all ages, genders, religions,
ethnicities, sexual orientations, and socioeconomic levels are represented.
The difference between the right
word and the almost right word is
the difference between lightning
and the lightning bug.
Mark Twain
Yet the only thing people with disabilities have in common is
being on the receiving end of societal misunderstanding, prejudice,
and discrimination. And this largest minority group is the only
one that anyone can join, at any time at birth, in the split second
of an accident, through illness, or during the aging process. If and
when it happens to you how will you want to be described?
Words matter! Old and inaccurate descriptors perpetuate negative stereotypes and reinforce an incredibly
powerful attitudinal barrier – the greatest obstacle facing individuals with disabilities. A disability is, first and
foremost, a medical diagnosis, and when we define people by their diagnoses, we devalue and disrespect them as
individuals. Do you want to be known primarily by your psoriasis, gynecological history, or the warts on your
behind? Using medical diagnoses incorrectly – as a measure of a person’s abilities or potential – can run people’s
Embrace a new paradigm: “Disability is a natural part of the human experience...” (U.S. Developmental
Disabilities/Bill of rights Act.) Yes, disability is natural and it can be redefined as a “body part that works differently.”
A person with spina bifida has legs that work differently, and so forth. People can no more be defined by their
medical diagnoses than others can be defined by gender, ethnicity, religion, or other traits! A diagnosis may also
become a sociopolitical passport for services, entitlements, or legal protections. Thus, the only places where the
use of a diagnosis is relevant are the medical, educational, legal, or similar settings.
People First Language puts the person before the disability, and describes what a person has, not who a person
is. Are you “cancerous” or do you have cancer? Is a person “handicapped/disabled” or does she “have a
disability”? Using a diagnosis as a defining characteristic reflects prejudice, and also robs the person of the
opportunity to define himself.
Let’s reframe “problems” into “needs.” Instead of, “He has behavior problems,” we can say, “He needs behavior
supports.” Instead of, “She has reading problems,” we can say, “She needs large print.” “Low-functioning” or “highfunctioning” are pejorative and harmful. Machines “function;” people live! And let’s eliminate the “special needs”
descriptor – it generates pity and low expectations! A Person’s self-image is tied to the words used about him.
People First Lnaguage reflects good manners, not “political correctness,” and it was started by individuals who
said, “We are not our disabilities!” We can created a new paradigm of disability and change the world in the
process. Using People First Language is right – just do it, now!
Instead of:
Children/adults with disabilities
Handicapped, disable, special needs.
He has a cognitive disability.
He’s mentally retarded.
She has autism.
She’s autistic.
He has Down Syndrome.
He’s Down’s/mongoloid.
She has a learning disability.
She is learning disabled.
He has a physical disability.
He’s a quadriplegic/crippled.
She uses a wheelchair.
She’s confined to/wheelchair bound.
He receives special ed services.
He’s in special ed; a special ed kid.
People without disabled.
Normal or healthy people.
Communicates with her eyes/device
Is non-verbal.
Congenital disability/Brain injury.
Birth defect/Brain damaged.
Accessible parking, hotel room, etc.
Handicapped parking, hotel room, etc.
Used with permission. Copyright 2009 Kathie Snow, All Rights Reserved. You may print and/or make copies of this article to use
as a handout
other way (on websites, blogs, newsletters, etc.) and to comply with
24 (non-commercial use). Before using it in any 1/5/2010
copyright law, see the Terms of Use at While you’re there, sign up for the free Disability Is Natural
Positive Approaches
The Paradigm
Positive Approaches is a worldview in which all individuals are treated with dignity
and respect, and all are entitled to “Everyday Lives.” The purpose of Positive
Approaches is to help people with disabilities live lives similar to people without
disabilities. This means being able to make choices, face challenges, succeed and
sometimes fail, but nevertheless, to have the opportunity to lead their lives as they
The opportunity to achieve an “Everyday Life” is a challenge for individuals who receive services
and supports from county Mental Retardation offices, especially for those who are also perceived
as having challenging behaviors.
There are four major areas in the effort to support people with challenging behaviors to have
“Everyday Lives.” Environment, Communication, Assessment, and Hanging in There are the
cornerstones for providing supports. These concepts have been incorporated into the log
associated with Pennsylvania’s efforts to promote “Everyday Lives” through Positive Approaches.
The following is a brief summary of these four areas:
An individual’s perception of his or her environment and how that environment will meet needs may
influence behavior. When trying to understand an individual’s behavior, consider what part the
environment may play in meeting one’s needs.
Is there a condition or situation in the environment that could be affecting the person’s behavior?
Can the environment be altered to better respond to the person’s needs?
Communication is not just speech. An individual may use any of the following means to
communicate: gestures, eye contact, facial expression, body movement, patterns of behavior,
manual signs, vocalizations, writing, pointing to pictures, and natural or synthesized/digitized
Communication typically involves a variety of partners for a variety of purposes, on a variety of
topics. Effective communication is equally dependent on the sender and receiver of the message
(National Joint Committee for the Communication Needs of Persons with Severe Disabilities, 1992.)
In other words, it takes two to communicate.
Individuals whose speech is such that it requires careful listening to be understood are at risk of not
being understood or listened to by communication partners, and are as in need of communication
supports as are those for whom speech cannot be produced at all (OMR Planning and Advisory
Committee Report, 2004.() Therefore, assistive/augmentative technology is an important
consideration in supporting individuals with communication challenges.
Individuals with limited communication skills frequently use body language and behavior to
communicate with others. Positive Approaches recognizes behavior as an attempt to communicate,
and promotes assisting individuals to find ways to express thoughts in ways that can be more easily
understood. Understanding how an individual communicates requires collaboration with those who
know the individual best.
Addressing environmental and communication needs is not always enough. Some challenging
behaviors may be related to an existing physical or psychiatric illness, which can limited the
effectiveness of strategies focused on addressing environmental or communication needs. Positive
Approaches includes an ongoing search for other ways to help.
Prompt assessment, diagnosis and treatment are critical for other interventions to be effectiv e.
Positive Approaches takes advantage of the growing variety of tools to help individuals in distress.
Some of these tools include: person-centered
person centered planning, medical and full physical assessments,
functional analysis, dental exams, psychiatric evaluations,
evaluations , neurological evaluations, and
neuropsychological sensory integration evaluations (i.e., examining the effects of trauma and
negative environment.)
Hanging in There
Promoting positive changes in the lives of individuals with challenging behaviors can be dramatic.
However, solutions may not be as simple or readily apparent. It is essential that service and
support providers have the ability to “hang in there” while continually reevaluating environmental
and communication factors, and reassessing physical or psychiatric illness. Challenging behaviors
were developed and refined by the person through years of frustration and disappointment. It is
essential for those supporting the person to respectfully revise their approaches and support the
development of trust in their willingness to respond to the needs of the person.
Positive Practices
Positive Practices a longstanding philosophy with roots going back to the beginnings of Positive
Approaches and Everyday Lives.
Lives The Positive Practices movement is comprised
comprised of
of state,
and county workgroups whose focus is to explore and expand local capacity, training, resources,
cross system collaboration, and how to meet the needs of the local community, particularly for
those individuals who are considered
considere most challenging and thosee with
with aa dual
dual diagnosis
diagnosis (MH/MR.)
ODP Bulletin 00-06-06, “Elimination
Elimination of
of Restraints
Restraints through
through Positive
Positive Practices”
Practices” focuses on the core
philosophies of the Mental Retardation System:
an Everyday Life and person -centered
centered thinking
through Positive Practices. This bulletin was developed in conjunction with DPW’s Alternatives to
Coercive Techniques (ACT) initiative that is focused on the goal of eliminating the use of restraints
throughout the service system. While this bulletin does not prohibit the use of restraint it does state
that restraint should be considered as a last resort, when the person’s immediate health and safety
is in jeopardy. ODP set a goal of a 20% reduction in the use of re straint in each region annually;
each ODP Region
egion completed a Restraint Elimination Plan for their region.
Positive Practices Resource Allocation Process – PPRT
(formerly known as Mental Health Support Process – MHSP)
In July 2006, the Pennsylvania Department of Public Welfare initiated a part nership between the
Office off Developmental Programs (ODP) and the Office of Mental Health and Substance Abuse
Services (OMHSAS) to develop the Positive Practices Resource Allocation Process .
The purpose of the Positive Practices Resource Allocation Process is to identify and develop
system resources that may be dedicated to address issues pertaining to a person’s behavioral
health support needs.
System Resources:
The resources include, but are not limited to,
to staff from ODP State Centers, Central Office and
Regional Office; OMHSAS State Hospitals, Headquarters, and Regional Office; County staff;
Advocacy staff; ODP Consultant staff; Health Care Quality Units; families; and others as needed.
The system resources are combined to pull together a Positive Practices Resource Team (PPRT).
Criteria for Referral to PPRT:
The criteria for referral of an individual with
a developmental disability include demonstration of
escalating at-risk behavioral challenges and the support team’s determination that the individual
may be at risk of needing enhanced levels of support not readily available or known to the team.
 Referrals for assistance can be made from any number of sources inclu ding
ing families, self advocates, advocates, provider
agencies, the ODP Customer Service Line, OMHSAS Field
Offices, State Centers, and State Hospitals.
 Referrals for assistance are sent through the individual’s county
county of
of registration
registration and
processed through the ODP Regional Office.
 The ODP Regional Office is responsible to have the Positive Practices Resource Allocation
Analysis referral form completed from the referring entity.
 The PPRT Coordinators will assign a team to meet with the individual and his/her support
team. Based on the information gained from the meeting and review of the current
situation, a technical assistance plan will be developed and implemented.
 The PPRT plan provides technical assistance in the areas of supports for the individual, the
support staff, and local system development.
 Follow up is provided from the PPRT staff and the ODP Regional Office staff.
Further information may be obtained from :
Gretchen Hathaway, OMHSAS – [email protected]/717-772-7526
Ellen Wagner, ODP - [email protected]/570-372-5659
[email protected]/570
PPRT Process Overview – 7/1/07
More information is available:
ODP Bulletin 00-06-09, Elimination of Restraints through Positive Practices :
ODP Bulletin 00-04-05, Positive Approaches:
Positive Practices - Chapter 1 (posted to on 06-01-2006)
Positive Practices Resource Team (PPRT) Allocation Process: Chapter 2 in a Series of
Positive Practices Trainings (posted to on 01 -31-2007) Jan.2007.ppt
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The Office of Developmental Programs Consulting System (OCS)
The Office of Developmental Programs Consulting System (OCS) supports the Office of
Developmental Programs (ODP) in providing consistent statewide training. OCS also provides
local training and technical assistance to county MH/MR agencies to meet the needs of individuals
and families who receive supports and services through their local Mental Retardation Office.
OCS provides training
training and
and technical
technical assistance
assistance to
to counties
counties that focuses on the practice of person centered planning and support for individuals and families
families.. These efforts adhere to the principles of
Everyday Lives, the philosophy and vision statement created by peopl e with disabilities and their
allies that expresses their wants, dreams and beliefs; it is shared and supported by the Office of
Developmental Programs.
Training and technical assistance is based on an analysis of statewide data, needs assessments,
quality monitoring, self-assessments,
assessments, and relevant research. Self
advocates and families partner in
the development and presentation of training and participate in training events. Many OCS
consultants are also family members.
Training efforts by OCS focus on, but are not limited to:
Supports coordination
Supervision / Leadership
The Individual Support Plan and Outcome Development
Positive Approaches
Customer Satisfaction and Responsiveness
Professional Development
Consultants are certified and / or trained in Person-centered
centered planning
planning processes:
 Essential
ntial Lifestyle Planning (ELP)
 MAPS (Making Action
ction Plans)
 PATH (Planning Alternative
lternative Tomorrows with Hope)
OCS Collaborates with other Pennsylvania statewide training systems such as the
Pennsylvania Training and Technical Assistance Network.
To learn
learn more
more about
about OCS:
Log onto the OCS website for training resources, for
or timely news,
ODP updates, upcoming events, resources, links, contact information, and more.
Click here for the OCS Bookmark
Bookmark: Itemid=73
For more information, contact:
Lisa Meyer, Director
(800) 446-5607,
5607, ext. 6831
[email protected]
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The Partnership
The Partnership makes available training and technical assistance, developed and provided by
people with disabilities and
d families. The training is coordinated statewide yet regionally-responsive;
centered and culturally competent; attentive to capacity -building
building and supportive of
leadership development.
Since the earliest Association for Retarded Children (Arc) groups in the 1940s and the precedentsetting Pennhurst lawsuit in 1974, Pennsylvania has been breaking through legal and physical
barriers that keep people with intellectual disabilities from rea lizing full and fulfilling lives.
Now, with The Partnership, Pennsylvania breaks ground for people with disabilities and families,
offering knowledge, power, and assistance to citizens who are eager to belong and contribute to
their communities.
The Partnership is made up of these agencies:
Institute on Disabilities
Mentors for Self Determination
Advocates United as 1
Vision for Equality
To contact the Partnership:
TTY 1-215-204-1356
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Health Care Quality Unit
Units (HCQU)
Health Care Quality Units (HCQUs) were developed as part of the strategy to address both health
and safety needs and the need to build community capacity and competency around health issues
for people with mental retardation. HCQUs are units comprised of c linicians and others with
expertise in the area of mental retardation and health care. They provide training and technical
assistance to stakeholders
holders in the field including Supports
oordinators and provider staff in order to
help improve understanding of health issues and needs.
HCQUs also gather health related data from the population that is used to guide local and
statewide training and other initiatives to address health issues and risks facing the population.
Through technical assistance they can provide you with clinical health care expertise for an
individual with whom you are working. They also participate in risk management activities to help
analyze health indicators that put individuals at risk and use training to raise awareness about
these issues.
Health Care Quality Units [HCQUs] serve as the entity responsible to county MR programs for the
overall health status of individuals receiving services in the county programs. HCQUs work to
support and improve the state MR community system by building
bu ilding capacity and competency to meet
the physical and behavioral health care needs of people with developmental disabilities living in
Pennsylvania. The primary activities of HCQUs include: assessment of individual health and
systems of care; providing clinical
linical health care expertise to counties and residential an d day
program providers; health-related
related training; integrating community health care expertise with
counties and residential and day program providers; integrating community health care resources
with state and regional quality improvement structures and processes and health advocacy. The
ultimate goal of the HCQUs is to assure that the individuals serv ed by each county MR program are
as healthy as they can be, so that each individual can fully participate in community life.
More information
information on
on Health
Health Risk
Risk Profiles
Profiles and
and how
how to
to use
use them:
The Learning Management System (LMS) contains a Health Risk Profile Tip Sheet for Supports
Coordinators. It provides guidance on the information in an HRP, findings and recommendations,
how the information can be used to support individuals, and what S upports Coordinator
oordinators should do
with HRP information – as well as HCSIS navigation for HRP information.
The following is a list of the current HCQU’s:
APS Healthcare - SW PA HCQU
8775 Norwin Avenue , Suite 103
North Huntingdon, PA 15642
Toll Free - 1-888-321-5861
Office Phone - 724-864-0715
Fax - 724-864-3750
The Southwestern PA HCQU supports Westmoreland, Allegheny, Bedbord/Somerset, Cambria,
Fayette, Greene and Washington counties.
Community Health Connections
The Bantam Commons
120 Hollywood Drive, Suite 210
Butler, PA 16001
Community Health Connections supports Butler, Armstrong, Indiana, Beaver, Vanango, Crawford,
Clarion, Mercer and Lawrence counties
Central PA Health Care Quality Unit
Geisinger Community Health Services
100 North Academy Avenue
Danville, PA 17822-2412
570-271-7241 (Fax)
Email: [email protected]
Central PA Health Care Quality Unit supports, Northumberland, Blair, Center, Clinton, Columbia,
Huntingdon, Juniata, Lycoming, Mifflin, Montour, Schuylkill, Snyder and Union counties.
Eastern Pennsylvania Health Care Quality Unit
Eastern PA HCQU
The Advocacy Alliance
744 North 19 Street
Allentown, PA 18104
610-435-9398 (Fax)
Eastern Pennsylvania Health Care Quality Unit supports Carbon, Monroe, Pike, Berks, Lehigh, and
Northampton counties.
Northeast Pennsylvania Health Care Quality Unit
The Advocacy Alliance
846 Jefferson Avenue P.O. Box 1368
Scranton, PA 18501
570-558-3209 (Fax)
Northeast Pennsylvania Health Care Quality Unit supports Lackawanna, Susquehanna, Wayne,
Bradford, Luzerne, Sullivan, Tioga and Wyoming counties.
Philadelphia Coordinated Health
123 S. Broad Street
23 Floor
Philadelphia, PA 19109
Philadelphia Coordinated Health supports Philadelphia, Bucks, Chester, Delaware and
Montgomery counties.
South Central Pennsylvania Health Care Quality Unit
Geisinger Community Health Services
South Central Health Care Quality Unit
1126 Cocoa Avenue
Hershey, PA 17033
Phone: (717) 909-3854
Fax: (717) 909-3852
E-mail: [email protected]
South Central Pennsylvania Health Care Quality Unit supports Cumberland/Perry, Adams,
Dauphin, Franklin, Fulton, Lancaster, Lebanon and York counties.
Northwest Health Connections
2033 Pennsylvania Avenue East
Warren, PA 16365
814-728-8887 (fax)
Northwest Health Connections supports Clearfield/Jefferson,Forrest/Warren,
Forrest/Warren, Cameron/Elk/McKean,
Erie and Potter counties.
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College of Direct Supports
The College of Direct Support (CDS) is a nationally recognized web -based
based curriculum built
on contemporary best practices in the profession of direct support to people with developmental
disabilities. The curriculum includes information of importance to stakeholders
st akeholders throughout
Pennsylvania’s developmental disabilities system, including people receiving support, families, and
Supports Coordinators.
The Office of Developmental Programs performed a review process involving self advocates, families, county staff,
taff, providers and other interested parties and determined that the
courses also have relevance for Mental Retardation Supports Coordinators
oordinators and
and Early
Early Intervention
service coordinators. Therefore,
Therefore, the
the Office
Office of
of Developmental
Developmental Programs
Programs is making the curriculum
available free of charge to
to county
county staff,
staff, supports
supports and
and service
service coordinators
coordinators &
& supervisors
supervisors and
individuals and their families currently receiving support and services. Administration of the CDS for
these groups is provided through the
t he ODP Consulting System, with technological support through
the Tuscarora Intermediate Unit.
The CDS curriculum:
 Contains a course on the ISP, available only to people in Pennsylvania.
 Integrates the principles of respect, self -determination, person-centeredness,
nteredness, and
and inclusion
inclusion into
every lesson.
 Is based on nationally validated competency sets and ethical guidelines including:
 The Community Support Skill Standards
 The National Alliance for Direct Support Professionals' Code of Ethics
 Allows for self-paced
paced learning at times and places that are convenient for the learner.
 Meets specific ODP training requirements for Supports Coordinators and licensed programs.
 Includes courses designed for frontline supervisors, managers, and human resource
Each County/Administrative Entity has a CDS point person who can give you more
information on how to register to use the CDS Website.
For additional information on the College of Direct Support, visit the website:
Or contact:
[email protected]
Table of
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Supports Coordinator Roles & Responsibilities
1. Individual
Support Plan (ISP)
Completion of the
Assure individual, family and/or team’s participation in the ISP process.
Team members shall be given adequate notice to attend team meetings with 30 working days.
The Plan meeting shall occur between 60-90 working days prior to the expiration of the current Plan.
ISPs shall be entered into HCSIS within 30 working days prior to the expiration of the Plan.
Copies of ISPs shall be sent to the team members within 14 working days of the effective date of the Plan.
2. Service Notes
Documenting all
contacts with
individuals, families,
providers, etc…
3. Supports
Follow-up and track
corrective actions.
Service notes shall be entered into HCSIS within 5 working days.
Supports Coordinators shall respond to emergency inquiries with 24 hours of receipt of a call or email.
Supports Coordinators shall respond to non-emergency inquiries within 3 days of receipt of a call or email.
Supports Coordinator shall track appropriate corrective actions relative to:
- concerns resulting through Supports Coordinator Monitoring
- incident management
IM4Q and OMOC Reviews as they relate to the individual
4. Target Service
Locate, coordinate
and monitor.
Locate: Link, arrange for, and obtain services specified in the ISP including medical, social, habilitation,
education, or other community services the individual needs to live at home or in the community.
Coordinate: Ongoing management of services and support stipulated in the ISP in collaboration with the
individual, family and providers of service.
Monitor: Establish and implement a means to assure the individual is receiving the appropriate quality,
type, duration and frequency of services and benefits.
5. Monitor
Monitoring findings shall be entered into HCSIS within 10 working days of the date of monitoring.
Monitoring should occur in accordance with County/AE policy and meet the required standards of funding
sources received by the individual
6. Monitoring
Each monitoring
contact should
promote the spirit of
Everyone can and does make choices.
“Everyday Lives”
and Self
Everyone can and does have control over his/her life.
Everyone is different and there is value in difference, therefore supports need to be individualized.
Each Supports coordination monitoring activity with the individual will include a review of:
 Progress towards implementation of the ISP.
 Individual’s health and well being.
 Incidents
 Licensing citations of the residential home if applicable
 Individual’s satisfaction with services/supports.
 Quality of services/supports and cost effectiveness.
 Support outcomes and any barriers.
7. Monitoring
The outcome of the
monitoring process
is to identify,
document, and
resolution to Issues
or Comments
regarding the
Issues: any
situation that
warrants immediate
corrective action
and timely response
by an individual
providing supports.
anything unusual or
noteworthy that may
necessitate team
attention, but not
immediate action.
8. Monitoring
Individuals enrolled
in the Consolidated
Individuals enrolled
in the Person &
Family Directed
Supports (PFDS)
Issues are:
 Circumstances that negatively impact an individual’s quality of life.
 Where an individual is not receiving the appropriate quality, type, duration, and frequency of services
as identified in the ISP.
 If an individual is dissatisfied with the manner in which the services or supports are delivered.
For participants in the Consolidated Waiver who receive a monthly service, the supports coordinator shall
conduct a minimum of three (3) face-to-face monitoring visits every three (3) calendar months. Of these
 At least one (1) of the visits must take place at the waiver participant’s residence;
 One (1) visit must take place at the waiver participant’s day service; and
 One (1) visit may take place at any place agreeable to the waiver participant.
If a monthly service is not provided as per the conditions outlined, deviations of monitoring frequency and
location are not permitted. For these situations, ODP requires a face-to-face ISP monitoring visit by
supports coordinators at least once every calendar month during the period of time when a mont hly
service is not provided.
For complete information on monitoring requirements for the consolidated waiver, see the Approved
Consolidated Waiver Amendment:
For participants in the P/FDS Waiver who are receiving a monthly service, the supports coordinator shall
conduct monitoring at the following minimum frequency:
 For waiver participants living with a family member, the supports coordinator shall contact the waiver
participant at least once every three (3) calendar months and shall conduct a face-to-face monitoring
at least once every six (6) calendar months. At least one face-toface monitoring per calendar year
must take place in the participant's home.
 For waiver participants in any other living arrangem ent, including but not limited to their own home,
Personal Care Homes, or Domiciliary Care Homes, the supports coordinator shall conduct a face -toface monitoring at least once every three (3) calendar months and shall contact the waiver participant
at least once every calendar month. At least one of the face-to-face monitoring visits every six (6)
supported through
State (base)
calendar months must take place in the waiver participant's home.
For PFDS waiver participants who do NOT receive at least one waiver service each calendar
h, ODP requires the following monitoring frequency by the supports coordinator, regardless of
the participant’s living arrangement:
 Contact at least once every calendar month; and *A face -to-face
face monitoring
monitoring contact
contact at
at least
once every three calendar months.
month At least two of the face -to-face
face visits per calendar year must
take place in the participant's home.
For complete information on monitoring requirements for the PFDS waiver, see the Person/Family
Directed Sup port Waiver Service Definition Amendment Effective Jul y 1, 2009:
An annual monitoring meeting should be conducted as a minimum.
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Medication Monitoring Helpful Questions to Ask
What is the purpose and desired effect?
What is the response time?
What unwanted effects should be looked for?
Are there any possible interactions with other medications or foods, including over the
counter medications?
Is there a diagnosis or symptom present for each medication?
Are there special instructions for:
• Administration?
• Storage?
Is this medication a controlled substance?
What is the range of time before and after a prescribed dose of medication can be given?
What are the expectations of over the counter medications?
Dysphagia Checklist
The Dysphagia Checklist is a direct result of the Dysphagia Summit held in May 2004.
Representatives from the Southeast Region of Pennsylvania gathered to discuss Dysphagia and
swallowing related issues. The summit itself stemmed from a noticeable increase in Dysphagia related incidents
dents resulting in deaths across the region.
A task force convened after the summit and developed this checklist to assist direct care staff and
family members in recognizing the signs and symptoms of individuals who may be at risk for
Dysphagia-related incidents
The “Eating, Drinking and Swallowing Checklist” is the tool developed by the SE Region Dysphagia
Summit Task Force. Two speech language pathologists were on the committee that developed this
form. However, it was not developed as a “clinical” instrument, but rather, as a tool that could be
used by non-clinical
clinical personnel to assist in detecting the presence of swallowing problems for
individuals they support.
This checklist has been piloted in the SE Region through the use of some suburban
uburban Supports
Coordinatorss as well as some residential providers. It is currently being used as a part of the
annual QEST monitoring tool for all Pennhurst Class Members.
The main idea behind the checklist is for it to be combined with a person’s assessme nt/ISP and
repeated every year to account for changes in a person’s eating, drinking or swallowing habits
which could lend itself to a diagnosis of Dysphagia or an increase in Dysphagia -related
related incidents.
Results should be shared with a person’s primary care
c are physician to ensure appropriate follow-up
any condition noted.
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Eating, Drinking and Swallowing Checklist
Individual Name: ___________________________________
Instructions: The purpose of this checklist is to document information gathered about the eating, drinking
and swallowing habits of the person you support. Please circle Yes or No for each item, and give the
completed checklist to the person who coordinates medical care for the individual or the individual’s
primary care physician.
Type of setting where form is completed (i.e., home, day program, employment site, etc):
Challenging Eating & Drinking Habits: (consider behavioral supports if any are checked)
Yes/ No
Yes/ No
Yes/ No
Yes/ No
Yes/ No
Yes/ No
Yes/ No
Steals food
Hides food
Generally grabs food
Takes in too much food and or liquid at one time (i.e., doesn’t stop & take a
breath or unable to limit bite/sip size) *
Eats while moving around environment
Eats with a tablespoon
Excessive length of time to complete meal
Risky Swallowing & Eating Concerns
Yes/ No
Yes/ No
Yes/ No
Yes/ No
Yes/ No
Yes/ No
Yes/ No
Yes/ No
Yes/ No
Yes/ No
Loss of food or drink out of mouth during or after meals
Holding or pocketing food/liquids *
Swallow foods whole *
Inadequate chewing *
Repeated attempts to swallow *
Watery eyes/nose during or after eating
Difficulty swallowing medication (i.e., unable to swallow large or multiple pills
gags, spits out, pocket/hold pills in mouth) *
Poor positioning risk factor (tilts head back/leans forward while eating and
Yes/ No
Yes/ No
Yes/ No
Yes/ No
Episodes of coughing/choking during or after meals *
Wet/gurgly voice during or after meals (if possible listen to the person say
“ah” or vocalizing) *
Increased congestion/secretions following meals *
Excessive throat clearing *
Increased temperature of an unknown cause (temperature spikes) *
Frequent upper respiratory infections/pneumonia *
Yes/ No
Yes/ No
Yes/ No
Yes/ No
Yes/ No
Yes/ No
Vomiting **
Burping or indigestion (i.e., sour breath) **
Weight loss **
Regurgitation (during or following meals) **
Complaint or indicate discomfort when swallowing **
Shortness of breath while eating or drinking **
Other observations/comments:
Form completed by: _______________________________
Title(s): ___________________________
Date of completion: __________
***To Be Completed By The Person Coordinating Medical Care For The Individual*** (if applicable)
Living arrangement (i.e., home, residential agency, family living, etc): _____________________
Current diet/liquid level consistency: _______________________________________________
Dentition (i.e., edentulous, dentures, etc): ___________________________________________
Oral hygiene routine ___independent? ___ dependent? ___ with assistance? Type of oral hygiene
products used? (i.e., paste, mouth wash, toothbrush, swab,
Any aspiration precautions/guidelines? Yes/ No
Any adaptive feeding equipment used? Yes/ No if yes, what type(s)?
Current or past diagnosis of dysphagia? Yes/ No
Current or past diagnosis of GERD? Yes/ No
Other medical/psychiatric diagnoses: (list all)
Current medications, listt all including “over -the-counter”: (attach list if necessary)
Form reviewed by: _______________________________Title(s): _____________________________
Action Taken:
 Don’t forget to include any issues noted in the ISP
 Don’t forget to take completed form to PCP @Annual Physical
KEY: * indicates see PCP to consider possible tableside and/ or video swallow evaluation
** indicates see PCP for appropriate referral
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Prioritization of Urgency of Need for Services
What Does PUNS Stand For?
PUNS (Prioritization of Urgency of Need for Services for persons with mental retardation) identifies
the types of services an individual is currently receiving and services and supports that are needed.
Services and supports received can include mental retardation services and services available in
the community. The PUNS indicates the urgency of need for supports and services. The urgency
of the need is identified in one of three categories:
Emergency: Emergency need on the PUNS is for individuals who need services right now.
Services needed may be in the home or out of the home. For example: When there is a death
of a remaining caregiver and there is no other family member available to provide support.
Critical: Critical need on the PUNS is for individuals who need support within the next two
years. For example: When a person has an aging or ill caregiver who soon will be unable to
continue providing support or there has been a death in the family or some other family crisis
reducing the capacity of a caregiver to provide care.
Planning: Planning need on the PUNS is for individuals who need services more than two
years away and within the next five years. For example, when a person has expressed a
desire to move, the person is living in a large setting and needs community services, or the
person is “aging out” of another system (e.g. approved private school, etc.)
Why Do We Complete The PUNS Form?
After reviewing information gathered via the PUNS form, the County/AE and Office of
Developmental Programs are made aware of the number of people waiting for services and plan for
their needs. The PUNS also indicates the urgency of those needs. The PUNS is an important tool
used to assist counties in developing the county/AE plan and annual budget that is submitted to the
state. Budgets are developed two years in advance of the current year.
How Often Is The PUNS Form Completed?
The PUNS form will be completed by an intake/registration worker or Supports Coordinator during
the intake process upon confirmation of MR eligibility and only if there is a need for eligible services
or supports. The PUNS must be reviewed and updated annually thereafter by the Supports
Coordinator with the individual and the family or caregiver and/or the individual’s designated
representative (e.g. provider).
 The PUNS should be updated at least annually or anytime the individual’s needs and/or the
family member’s ability to care for the individual change. Individuals, families, or the
individual’s designated representative (e.g. provider) are responsible for contacting the
Supports Coordinator when the person’s need for support changes. An example of a
change in service needs may be when a student is in their last year of high school. The
service need would be for vocational services and the urgency of need would change from
Planning to Critical status.
 The PUNS information must also be updated when the service needs have been met. For
example, once the individual graduates and the vocational services have been coordinated,
the PUNS information would be updated to reflect that this need has been met.
 At the time of the annual update, if there are no changes in the person’s need for services, the
form does not need to be signed. It does need to be sent to the individual/family after it has been
entered in HCSIS. If the individual/family have concerns about the information on the PUNS
form, they should:
- Notify the Supports Coordinator
- If there are still concerns – notify the SC Supervisor
- If there are still concerns – notify the County/Administrative Entity
- Remember the PUNS cannot be appealed. Servi
ce determination (of which PUNS is a
part) can be appealed.
The individual and or family should always keep a copy of their PUNS form and all other forms they
complete with their Supports Coordinator
Coordinator.. A copy of the PUNS form that is entered into the Home and
Community Services Information System (HCSIS) must be sent to the individual, his/her family, and any
others who participated in the completion of the form. HCSIS is the statewide computer system that
stores information on individuals who are register
ed in the MR system. HCSIS is a secured site to protect
Who Completes the
he PUNS Form?
When an individual is registering for services for the first time, the PUNS will be completed by the
registration/intake worker or Supports Coordinator during
uring the intake appointment with input from the
individual and family/caregiver and, if appropriate, the individual’s desired representative (e.g. provider).
The Supports Coordinator will complete the PUNS each year during the annual meeting with the
ividual, the family member and/or caregiver. PUNS forms must be completed with the individual,
family, and/or caregiver. The PUNS information is then entered into HCSIS.
Find out more about the PUNS process:
ODP Bulletin 00-06-15, Prioritization
Prioritization of
of Urgency of Need for Services (PUNS) Manual
PUNS Manual:
PUNS Level 1 Course on the Virtual Training Center (registered username and password required)
Review the information on the ODP webpage by following this link Services and Supports:
Contact your AE PUNS Point Person
Call the Office of Developmental Programs Customer Service Line at 1 -888-565-9435
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Supports Intensity Scale © and the PA PLUS:
Pennsylvania’s Standardized Needs Assessment
The Office of Developmental Programs (ODP) has assured the federal Centers for Medicare and
Medicaid Services (CMS) that a statewide, standardized assessment would be adopted to
consistently assess the need of waiver participants. ODP determined the instrument of choice
would be the Supports Intensity Scale© (SISTM) as it is a reliable and valid needs assessment
developed by the American Association on Intellectual and Developmental Disabilities (AAIDD.)
The intent of the SISTM is to focus on the level of support needed by a person instead of evaluating
deficits in skills. It was developed to assess needs for individuals between the ages of 16 and 74.
Who is assessed?
The standardized needs assessment will be completed for new and existing waiver recipients,
according to ODP’s phased roll out schedule. In addition, ODP has established guidelines for
urgent requests for assessment. Reassessment occurs every three years, unless something occurs
in the person’s life which invalidates the earlier assessment. The assessment is a requirement of
participation in the waivers.
What the SISTM and PA Plus do and don’t do
Traditional assessments usually measure skills and deficits. The SISTM is measures how much
support is needed for the individual to successfully complete a task, how often the support is
needed, and what type of support is needed (e.g., monitoring, verbal or gestural prompting, partial
or full physical assistance.) The PA Plus, developed by a group of local stakeholders, asks
additional questions about capacities and supports.
The SISTM and PA Plus support the ISP process by prompting the team to discuss supports needed
to keep the person healthy, safe, and to help achieve personal outcomes. The assessments do not
indicate what specific types of supports are needed, or whether they are paid or unpaid. ODP has
pledged that assessment scores will not be used to determine individual budgets.
What is the process?
ODP has contracted with Ascend Management Innovations, LLC (Ascend) to administer the SISTM
and PA Plus in Pennsylvania. Ascend is responsible for scheduling assessments, while the Support
Coordinator makes the initial introduction of the process to the individual and family via distribution
of ODP-approved materials. The Supports Coordinator may or may not be a respondent for the
assessment, but it is ODP’s expectation that the Supports Coordinator attend the meeting. After the
interview, Ascend will enter the assessment and notes into HCSIS. The Supports Coordinator will
provide copies of the assessment summary to the ISP team for reference during the ISP meeting.
What is the role of the AE and supports coordination?
The AE is responsible to ensure assessments are completed according to ODP’s direction and to
monitor the process at the local level. In addition to assisting the vendor and individual in
completing the assessment, the Supports Coord inator is responsible to work with the team to
ensure all assessed needs are addressed in the ISP. This means that the ISP spells out how the
need is met, either through formal or informal supports.
What is the PA Plus?
The PA Plus was developed by stakeholders to be used concurrently with the SISTM. It consists of
nine (9) questions which provide additional planning information not covered in the SISTM
assessment. Topics include supports needed for mobility, transfers, vision, hearing, communication
and safety, as well as assistive technology, treatments, medications, and behavioral health. These
additional questions are designed to support the planning process and better serve the needs of the
More information is available from your local AE point person for SIS TM and PA Plus.
Please note: individuals’ health and safety needs must be met, even if they are awaiting (re)assessment
ODP Bulletin 00-08-11
11 Supports Intensity Scale© (SIS™) and PA Plus Users
ODP Bulletin 00-07-02
02 Oveview of the Supports Intensity Scale © and the PA Plus 169.aspx?BulletinDetailId=4063
Streaming events on the OCS website:
o ODP - Standardized Needs Assessment Update 07 -12-2007
2007 Presentation:
SIS ® - Supports
rts Intensity
Intensity Scale
Scale Ascend
Ascend Management
Management LLC
LLC 01
SIS™and PA Plus Course on the Virtual Training Center (registered username and password
SISTM Clarification Letter – Role of the Supports Coordinator – Deputy Secretary Casey –
May 14, 2008
Steps in the Standardized Universal Assessment Process
PA Plus
SISTM Fact Sheet
SISTM Helpful Information for Respondents
Supports Intensity Scale© SISTM Assessment Meeting Note Taking Worksheet
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Service Notes Standards
These standards will be shared with new Supports Coordinators, reinforced in orientation, and
training, monitored through the county/AE self-evaluation process, and as part of the Office of
Developmental Programs’ Oversight and Monitoring Process of counties/AE’s.
Service notes should describe and document contacts made and actions taken by a Supports
Coordinator on behalf of a specific individual to whom they are assigned. The information recorded
should be sufficient to communicate:
1. Who the Supports Coordinator contacted or saw and where,
2. What the Supports Coordinator observed, determined, or requested,
3. Any changes, issues or concerns affecting the person’s health and safety, need for
services, satisfaction with service(s) or service delivery.
4. Planned next steps or outstanding issues and target date for implementation,
5. Documentation that compliance requirements have been met and outstanding issues
General Do’s and Don’ts
 Be objective.
 Stick to the facts – avoid feelings, values and beliefs.
 Follow the basic rules of good writing - Be clear and concise and focus on how, what, hen,
where, how, why and how often.
 Capture and summarize information that is important in the event of an emergency, if there
is an Supports Coordinator change or a change in the person’s life that may affect the ISP,
health and safety status and/or living situation.
 Be timely - document immediately or as close as possible after the event or situation has
 For abbreviations…spell out what the letters stand for the first time it is used in each
separate note.
 Use “People First” language.
 Check for clarity: Would someone who doesn’t know the person, situation, or MR system
understand the note? For example, refer to an earlier note when following up on a
previously identified issue i.e. “As per service note dated 6/7/2006…”
Be sure to include activity such as the following:
 Describe the person’s general status whenever you visit or spend time with the
 Include efforts related to the conduct and organization of team meetings. This should
 Distribution of invitations;
 The team members present and the agencies they represent. This can be
documented in a separate sign-in/attendance sheet but only if the service note
indicates the presence of such a form/document;
 Requests for information made to help prepare or update an ISP, and
 Confirmation of the distribution of the approved ISP to team members;
 Contacts made with family members, advocates, current or potential providers,
community resources, the health care quality unit (HCQU), health care providers or
insurers, etc. to locate or coordinate services.
 Describe changes that occur in the individual’s
indivi dual’s situation or circumstances that are
included in an ISP general update or critical revision.
 Identify
ntify any new service requests and the date of the request, the reason for the
request and the action taken in response and whether the request required an update
to PUNS.
 Indicate the location and completion of monitoring. If an issue is identified, describe it
and track/document the resolution in subsequent service notes.
 Summarize information received from other sources such as incidents, IM4Q
rations, complaints, licensing, and the results of reviews conducted by the
county/AE and/or ODP.
O . Describe any actions taken to address the identified issues
and where follow-up
up or a plan of correction is needed, track the status of resolution to
assure that
at it has been completed as planned / promised.
 Record when the compliance related activities occur such as: completion, update, and
mailing of PUNS, discussion of feasible alternatives and offer of service delivery
preference, presentation and review of service options (including choice of provider)
and explanation of due process rights.
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Also see LMS instruction, “Using
Service Notes in HCSIS”
The Home & Community Services Information System
The Home and Community Services Information System, or, “HCSIS,” is an Internet application
which serves as the operational system for all Department of Public Welfare (DPW) program offices
that support the Home and Community Based Services Programs and Medicaid Waivers. HCSIS
includes information regarding people receiving services and quality of services, and provides
financial and reporting functionality. It interfaces with several DPW enterprise applications including
MCI (Master Client Index), MPI (Master Provider Index) PROMISeTM, and COMPASS
(Commonwealth of Pennsylvania Access to Social Services.) The individual support plan is the
authorizing document for HCBS claims for DPW and the Pennsylvania Department of Aging. Data
from HCSIS also supplies information to the Department's Enterprise Data Warehouse to support
management reporting, risk management and quality assurance.
HCSIS was initially implemented with the Office of Developmental Programs in January 2002 and
with the Office of Social Programs and Office of Medical Assistance Programs in January 2004.
Click to access HCSIS:
Help Desk Phone Number: 1-866-444-1264
Help Desk Fax Number: 717-540-0960
HCSIS Data and Information Reports
Below is a list of HCSIS reports that can be used by Supports Coordinators to make their jobs
easier. Reports are either offline, meaning they can be found in the request reports box within 24
hours of the initial request, or online, available immediately. Some reports below may require roles
other than Supports Coordinator, such as the SC supervisor role. Please check with your HCSIS
administrator. The HCSIS ODP Reports Guide, available on the Learning Management System (LMS),
has up to date information about all reports available through HCSIS.
Following are some offline reports a Supports Coordinator might find helpful:
Impact of Service Removal Report: Lists the individuals potentially affected by the removal of a
provider’s service from HCSIS. By selecting the provider and service that may be removed, the
report lists the individuals who receive that service from the selected provider.
ISP Plan Status Report: Is a detailed Individual Support Plan (ISP) report providing information on
individuals’ ISPs. The information in this report includes the following: Consumer Name,
County/Joinder, Plan Begin Date, Plan End Date, Plan Status, Waiver Type, Waiver Begin Date,
and Service Authorization Status.
Individual Support Plan Aging Report: Allows the Supports Coordinator to review ISPs that will
be expiring within a specified time period. In addition, the report will show whether or not the
individual has another ISP in process.
PUNS Detail Report: This report will pull the finalized PUNS (current or/and historical) depending
on the search parameters for an individual during a particular fiscal year.
Individual Monitoring Detail Report: This report lists all the current and past submitted monitoring
forms for an individual. Users must enter an individual and select a calendar year from the drop
down list. The report is prepared based on the comparison between the contact date for the
ividual monitoring and the year selected as the parameter. The report contains individual data
followed by questions and answers for each page of the report.
Consumer Corrective Action Report: This report is designed to consolidate issues and corrective
ctions from multiple HCSIS modules into one report for an individual, so that areas of concern can
be identified and addressed. The report selects data from Incident Management, Health Risk
Profile, and ODP Oversight and Monitoring of AE’s.
Claim Status Report: This
This report
report provides
provides information
information about
about paid,
paid, suspended,
suspended, and
and denied
denied claims,
including reasons why claims are suspended or denied. Additionally, the report provides a historical
trail of claim information, including the number of claim submissions be
fore a claim is accepted.
More information on navigating HCSIS:
The Learning Management System (LMS) contains a HCSIS basic navigation course that explains
the purpose of HCSIS, how to logon, the functionality of the system buttons and navigation through
HCSIS menus.
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The Learning Management System (LMS)
The Learning Management System (LMS) contains a variety of information regarding the Home
and Community Services Information System (HCSIS), Supports coordination,
coordination and Certified
Investigator Training.
The LMS allows you to:
 Register for training such as: Supports Coordinator statewide trainings, Supports Coordinator
Supervisor leadership sessions, and Certified Investigator trainings.
 The LMS is the best
best source
source for retrieving the latest information about HCSIS.
 View all the HCSIS training materials to refresh your memory on how to perform
functions in HCSIS.
 View the details of the changes made to HCSIS.
 View the Release Communication documents.
 Register for a certified investigator class and print your certificate.
 View certified investigator test results and recertification requirement notices.
If you do not know your LMS ID and password or have questions about your roles, please ask your
local LMS Administrator.
trator. To find who your local LMS Administrator is, click on the “ Forgot your login
id?”” link on the homepage of the LMS.
To access
access the
the LMS
LMS choose
choose Learning
Learning Management
Management System
System on
on the
HCSIS homepage:
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Provider Reimbursement and Operations
Management Information System in electronic
lectronic format)
PROMISe TM (the Provider Reimbursement
eimbursement and
and Operations Management Information
nformation System in
electronic format) is the Pennsylvania Department of Public Welfare’s system for processing of
certain human service claims. Currently, TSM service notes entered into HCSIS by Supports
Coordinators are then aggregated twice per month, converted into claims and sent to PROMISeTM
through an
an automated
automated process;
process; payment
payment is
is made
made by
by the
the Treasury
Treasury to
to the
the appropriate
appropriate supports
coordination entity.
Providers should be submitting claims to PROMIS eTM for authorized services provided to individuals with
approved ISPs. This process will produce utilization information in HCSIS, providing counties with
information on how spending compares with the cost and amount of services in ISPs.
Utilization information will be available to supports
support coordinators for individuals to whom they are
assigned as providers bill using PROMISe
. Utilization information is accessed within the Service
Details screen of the ISP by selecting the specific service.
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Rate Setting
Rate setting is the required process by which counties, administrative entities and provider
agencies calculate the individualized rates they will charge for providing services to individuals and
reimbursing the provider at that rate based on the actual number of units used. The rate setting
methodology must be completed in advance of each fiscal year. Through the use of rate setting the
Office of Developmental Programs is moving from “program funding” of ser vices to paying for
services that are actually delivered based on prospective rates. By doing this, funding is committed
to the consumer’s individual budget (available to support consumer and family choices) and not to
the particular provider.
This change not only increases the opportunity of choice for the individual to
o choose another
service providerr that better meets their needs, it also increases the financial risk of the providers
(they can no longer rely on “Program Funding” to support their budget s.)
Rate setting also limits the ability of an individual Administrative Entity (AE) or county from limiting
the number of providers. As long as the provider meets the qualifications established by the state
and uses the rate setting methodology outlined by the state, the AE is obligated to approve the
rate. This increases the choice of the consumer and their family. IfIf aa qualified
qualified provider
provider willing
willing to
provide an approved support or service within the established rate setting guidelines is located and the funding is available within the individual’s budget - the county/AE is required to contract
with that provider for that service.
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Lifesharing through Family Living
Lifesharing, also known as “Family Living” (55 Pa Code §6500), officially began in Pennsylvania in
1982 with a family in Berks County. To reflect the diversity of relationships in these living
arrangements, “Family Living” became known as Lifes
haring to better describe the lifestyles and
choices of the people being supported.
Lifesharing through Family Living means living with and sharing life experiences with supportive
persons who form a caring household. Lifesharing, recognized as both a cl ose personal
relationship and a place to live, offers an individual with a disability the opportunity to live with a
family or individual who will support his/her desires and needs for an everyday life. Individuals
supported in Lifesharing include childre
n and adults with a wide variety of needs and challenges.
Lifesharing has been shown to be a cost effective option for people who need residential support.
Numerous studies have suggested that the people in lifesharing have high levels of satisfaction
pared to
to people
people in
in other
other types
types of
of residential
residential service.
service. People
People benefit
benefit from
from the
the stability
stability and
inclusion that comes with Lifesharing. The matching and home study process, along with the
training and supervision that Lifesharers receive, helps to ensure t hat the Lifesharing arrangement
works well for all concerned.
Supports Coordination Expectations:
The Office of Developmental Programs has issued instructions for County/AE MH/MR Programs to
ensure that Lifesharing is considered first, before other types of out-of-home
home living arrangements
such as group homes and ICFs/MR. Registration and ISP expectations are as follows:
 People who perform registration/intake functions are expected to inform new persons
coming into the MR service system about Lifesharing a
ass part of the services provided for
people in the community mental retardation program.
 Supports Coordinatorss are expected to discuss Lifesharing with all persons who are
considering residential services or a new residential service, including persons in
community homes at their annual ISP meeting and people rreturning
eturning to the community from
state centers
enters and other ICFs/MR.
 Supports Coordinatorss are using the Lifesharing Button in HCSIS to document that this
information is being shared.
 Supports Coordinatorss are providing individualss interested in residential services the
opportunity to discuss Lifesharing with provider representatives, Lifesharing families,
people and families who using Lifesharing BEFORE they choose any other type of
residential service.
 Lifesharing Directory – overview of providers across the Commonwealth available from
Regional and County/AE MH/MR Lifesharing Point Persons
Lifesharing Through Family Living Brochure: -ff.pdf
Lifesharing Through Family Living Bulletin
 Regional and County/AE MH/MR Lifesharing Point Persons
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and Employment-Related Resources
Employment means a job in the community that the individual wants and can perform, with or
without accommodation and support. When we talk about employment today, we mean having a
job or vocation in the community that pays at least minimum wage. Whether the work is part-time
or full-time, in a plant, office or a start up business in the family garage, employment needs to
match the individual’s abilities, career goals and aspirations.
Employment is an essential part of self-determination for many people. Employment is a way for
people to achieve their personal dreams of success, respect and control. Having community
employment can be an important part of one’s self-identity and value in society. People enrolled in
the mental retardation program have choices in the types of jobs they obtain, and in the providers
who render their support and services.
Qualified job coaches and employment specialists are available to assist people in locating,
preparing for and successfully managing the job of their choice. Success is also supported by
government programs, which provide real incentives for people with disabilities to work, keep more
earned income for their personal use, and retain their needed benefits.
Expectations of Supports Coordinators:
The SC Toolkit Version of the Employment Manual should be used by Supports Coordinators for
employment information and resources. The toolkit contains information on practice and
procedures that should be followed as well as resources and contacts for additional information. A
copy of this manual can be obtained from your county/AE employment point person.
Supports coordinators are not expected to be experts in employment supports. Supports
Coordinators are expected, however, to offer employment to all people, promote employment
through the ISP process, and link interested individuals with employment resources (Office of
Vocational Rehabilitation [OVR] Benefits Planning Assistance and Outreach [BPAO], providers of
supported employment services, etc.). ODP expects that Supports Coordinators will:
Lead ISP processes that consider employment first before other types of vocational or nonvocational day supports.
Stay up-to-date with work incentives, such as Medical Assistance for Workers with
Disabilities (MAWD) employer tax incentives, and Social Security incentives. Agencies like
BPAO can help Supports Coordinators learn about and understand these incentives.
Support people based on individual circumstances.
Share information with people and families.
Develop and use your networks effectively. Supports Coordinators do not have to be
experts. BPAO, County Assistance Offices, and OVR are just a few of the agencies
available to help navigate employment supports.
Build on success one individual at a time. ODP understands that there will be barriers, and
that not everyone will be interested in employment. ODP expects that Supports
Coordinators will work with interested people to promote employment outcomes. The
county/AE and regional employment point people are available to help Supports
Coordinators with any questions/issues that may arise.
County MR Program/Administrative Entity (AE) Expectations (Supports Coordinator Role)
The following chart summarizes the role of the Supports Coordinator in the implementation of the
standard employment practices expected of all county programs/AEs, beginning in January 2006.
Supports Coordinators should use their county/AE and regional employment point people as
resources if there are any questions about these expectations.
Practices Beginning
January 2006
Supports Coordinator
discusses employment
options with
individual/family and
provides opportunity to
discuss options with
practitioners (e.g.
BPAO and providers)
Supports Coordinator
ensures completion of
page 7 of Employment
Supplement to ISP
Supports Coordinator
populates HCSIS with
individual’s employment
goal and OVR
Adults (age 18 to
65) Moving to the
Community from
a State Center
Youth and Young
Adults in
Transition from
School to Adult
Life (age 26 and
Adults in vocational
training considering
employment through
their annual ISP
18+ with
waiting list
funding for
new day
adults receiving
other MR
Coordination with the District Office of Vocational Rehabilitation (OVR) is a part of the Supports
Coordinator’s responsibilities when employment supports are needed for the individual.
Bulletin 00-05-07 and the Employment Manual offer guidance on how coordination with OVR is
expected to occur. Developing an ongoing relationship with OVR counselors to determine who
should be referred to OVR is recommended. Guidelines for referring individuals to OVR are
available by contacting your Regional or County/AE Employment Point Person.
Benefits Planning Assistance and Outreach (BPAO) Offices are an excellent referral source for
people who receive SSI or SSDI and want to work. A BPAO counselor will provide the
individual/family with information on how earned income will affect their benefits. A list of BPAO
Offices is contained in the SC Edition of the Employment Manual.
Employment-related resources
Medical Assistance for Workers with Disabilities (MAWD)
For people with disabilities, finding a job or returning to work can be a challenge. For a long time
one of the biggest obstacles to working was healthcare coverage. Earning too much money meant
risking losing healthcare benefits. Now there's a new option-Medical Assistance for Workers with
Disabilities (MAWD). MAWD lets Pennsylvanians with disabilities take a fulfilling job, earn more
money and still keep their full medical coverage. With MAWD an individual can keep Medicaid while
he/she works, even if earnings increase above the limits for other Medicaid programs.
To be eligible for MAWD, an individual must:
 Be at least 16 years of age but less than 65;
 Be employed and receiving compensation;
 Have a disability that meets the Social Security Administration's standards;*
 Have countable income below 250 percent of the Federal Poverty Level;**
 Have $10,000 or less in countable resources. (resident property and one automobile are
not countable assets.)
* Disabilities may include physical or developmental disabilities, mental health or mental
** Contact the local County Assistance Office (CAO) for
more information or apply online at
What's the cost?
An individual pays a monthly premium for coverage under MAWD, since it functions like health
insurance coverage for someone working. The premium is five percent of the individual’s countable
monthly income.
How does someone apply?
Contact the local County Assistance Office (CAO) or
caseworker to apply, or to find out more about MAWD. Call the Pennsylvania Department of Public
Welfare help line at (800) 692-7462 for more information. TTY/TTD users can call (800) 451-5886.
Apply online through the Commonwealth of Pennsylvania Access to Social Services (COMPASS)
Expectations of Supports Coordinators:
Supports Coordinators have MAWD related responsibilities for the individuals they serve (waiver
and non-waiver funded). The Supports Coordinator is responsible to:
 Advise the people they serve, who are or expect to be employed, about their right to apply
for MAWD and the benefits of the MAWD option for people who work. This includes both
waiver and non-waiver funded individuals;
 Adjust waiver and other registration and individual planning and budget practices as
necessary to accommodate MAWD referral and determination procedures;
 Disseminate MAWD information such as brochures and promotional material made
available by State agencies to local stakeholders, including individuals receiving services
and their families;.
 Advise people they serve when training on MAWD is available in their area;.
 In coordination with OVR district offices and other area agencies, continue to promote
employment for individuals in the community program who choose to work through the use
of MAWD and other work incentives.
Other Resources:
A supply of printed materials was sent to each county/AE in July 06. Follow this link to learn more
about MAWD on DPW website:
Work Incentive Planning and Assistance Projects (WIPA)
People who receive disability benefits from the Social Security Administration and are interested in
working or learning more about how working would affects benefits can get help from a community
organization known as a Work Incentive Planning and Assistance (WIPA) project.
What is a WIPA?
A WIPA local organizations that has arranged with Social Security to provide information and planning
services about work and work incentives to Social Security and SSI disability beneficiaries.
Click here to view WIPA information on the Social Security Administration website:
Who is eligible for WIPA services?
All Social Security and SSI disability beneficiaries age 14 and over are eligible for WIPA services. An
individual does not have to be working, or even have decided to work, to get WIPA services.
What can a WIPA provide?
A WIPA can:
 Answer questions about how part-time, full-time, or seasonal work would affect individual
disability benefits and other benefits from Federal, State, and local programs.
 Answer questions about how work would affect your health care.
 Answer questions about SSA work incentives and work incentives of other programs.
 Discuss individual employment goals, including possible barriers and the resources or services
needed to overcome any barriers. A WIPA can also help find those resources and services.
 Help plan how to use work incentives or other benefits for a successful return to work.
 Help individuals work with their local Social Security office to put in place needed work incentives.
 Help individuals use Ticket to Work and find an Employment Network (see web links below for
more information)
Where does someone go to get WIPA services?
In Pennsylvania, three organizations provide WIPA services:
AHEDD/Association for Habilitation and Employment of Developmentally Disabled
John Miller, Project Director
(717) 763-0968 ext. 191
Email: [email protected]\
Allegheny, Armstrong, Beaver, Bedford, Blair, Butler, Cambria, Cameron, Clarion, Crawford, Elk, Erie,
Fayette, Forest Fulton, Greene, Huntingdon, Indiana, Jefferson, Lawrence, McKean, Mercer, Somerset,
Venango, Warren, Washington, and Westmoreland
Goodwill Industries Keystone Area
1150 Goodwill Drive
Harrisburg, PA 17101-2400
Phone 717-232-1831
Fax 717-232-0115
Email: [email protected]
Adams, Berks, Bradford, Carbon, Centre, Chester, Clinton, Clearfield, Columbia, Cumberland, Dauphin,
Franklin, Juniata, Lackawanna, Lancaster, Lebanon, Lehigh, Luzerne, Lycoming, Mifflin, Monroe,
Montour, Northampton, Northumberland, Perry, Pike, Potter, S chuykill, Snyder, Sullivan, Susquehanna,
Tioga, Union, Wayne, Wyoming, York
Disability Rights Network of PA, Transition
Transition to
to Employment
Employment Program
Phyllis Hilley, Program Director
1414 N. Cameron Street, Suite C
Harrisburg, PA 17103
1-800- 692-7443 ext. 309
1-877-375-7139 [TDD]
1-717-236-8110 ext 309
Bucks, Delaware, Montgomery, and Philadelphia.
To learn more about work incentives, go to:
More information:
 Contact ODP Regional and AE Employment Point Persons
 The Employment Manual and other resources on the OCS website:
 Office of Vocational Rehabilitation Course on the Virtual Training Center (registered
registered username
and password required):
 Medical Assistance for Workers with Disabilities information on the DPW website:
 ODP Bulletins:
Medical Assistance for Workers with Disabilities (MAWD) in the Community MR Program
Office of Mental Retardation Policy on Employment
Employment for Individuals in ICFs/MR”
 Ticket to work and Employment Networks:
Table of Contents
Independent Monitoring for Quality
Independent Monitoring for Quality (abbreviated “IM4Q) is ODP’s independent, statewide system to
monitor the satisfaction and outcomes of individuals and their families.
IM4Q teams, composed of families, self-advocates and other interested citizens, conduct face-toface interviews with approximately 6,600 people each year, regardless of their living arrangement.
Participation in the IM4Q process is voluntary.
Based on these interviews, IM4Q teams develop considerations that are intended to improve the
quality of people’s lives. Considerations that have an affect on services and supports are usually
shared with the Supports Coordinator. When appropriate, service improvements based on IM4Q
considerations are included in the individual’s ISP.
Local IM4Q surveys offer Supports Coordinators an independent view of an individual’s quality of
life which may confirm what the Supports Coordinator already knows. At times, new issues, new
ideas, and new opportunities will result from the IM4Q process, which Supports Coordinators will
need to address. Supports coordinators should view local IM4Q program considerations as a
helpful perspective to what everyone wants – an Everyday Life for the people we support.
Supports coordinators can request copies of online and written IM4Q reports. Each year, the
County/AE receives an annual IM4Q Summary, a National Core Indicators Extract (which provides
information on County/AE performance compared to regional and state averages) and various
written State reports. Supports coordinators can also request provider IM4Q profiles from HCSIS to
assist people in choosing service providers.
The Supports Coordinator plays a key role in various aspects of the IM4Q process. With the
exception of completing pre-surveys themselves, these functions are all eligible for federal financial
participation (FFP) as part of targeted service management and include:
 Completing pre-survey information that the IM4Q team needs to set up the interview.
This information may consist of personal data that is not available in HCSIS, or other
information which is in HCSIS that needs to be checked for accuracy. This information may
include the individual’s preference for a man or woman interviewer, the name of the
individual’s residential provider agency, etc.
 Addressing team considerations. While some team considerations about an individual’s
satisfaction and outcomes can be handled outside the ISP process, some considerations
are best reviewed at a team meeting when possible changes to services and supports can
be discussed. The determination of what is handled in and outside of the ISP team
process should be made by the individual, family, and Supports Coordinator. When a
change or action is taken to the ISP team, it, the change/action should be monitored and
recorded as a case note in HCSIS.
 Addressing questions from an IM4Q team. Each IM4Q Program is expected to follow-up
with a certain percentage of individuals and families to determine if they are satisfied with
actions taken to address a concern or outcome. When an individual/family is not satisfied
that the consideration is being taken seriously, resolved or in the process of being resolved,
the IM4Q team is authorized to continue to pursue resolution of the consideration through
their MH/MR Program liaison. These consideration follow-up’s may come to the attention of
the Supports Coordinator.
Support Coordinators ARE NOT AUTHORIZED to select an individual for the IM4Q sample or to
determine if the individual does not choose to participate in an IM4Q Interview. People who
express reservations about participation still need to be referred to the IM4Q Program which is
responsible for asking the individual if s/he chooses to participate.
IM4Q information
information on
on the
the DPW
DPW website:
For more information on IM4Q, please contact your County/AE IM4Q Coordinator or local IM4Q
Program Director. Regional IM4Q Coordinators are also available to
address your questions
and concerns.
Table of
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The Waivers
What is a Waiver?
Waiver is a shortened term for the Medicaid Home and Community Based Waiver Program which
provides funding for mental retardation supports and services to help you to live in your home and
The name Waiver comes from the fact that the federal government waives Medicaid rules for institutional
care in order for the state to use the same funds to provide supports and services for people in the
community. The state must make specific assurances to the federal government when requesting a
Medicaid Waiver.
Federal and state funds are combined in Medicaid Waivers. The federal and state shares are not the
same in each state and they are adjusted each year. In Pennsylvania it is generally a 50/50 split.
In Pennsylvania, the Office of Developmental Programs (ODP), formerly the Office of Mental Retardation
(OMR) operates three waivers: Consolidated Waiver, Person/Family Directed Support Waiver and Infants/
Toddlers and Families Waiver. Each waiver has its own unique set of eligibility requirements and
Although the following section contains information on other waivers administered by the Commonwealth,
a person may only be enrolled in one waiver at a time.
To learn more about Pennsylvania’s Medicaid waivers, visit the DPW website:
Consolidated Waiver
The Person/Family Directed Support Waiver provides services to eligible individuals with
intellectual disabilities so that they can remain in the community. Individuals eligible are those:
 Eligible for Medical Assistance;
 Age 3 and older;
 Who meet criteria for an ICF/MR Level of care.
For specific information about this program, including detailed eligibility criteria, services, etc., see
the documents below:
Developmental Programs Bulletin 00-08-04, Individual Eligibility for Medicaid Waiver Services
Developmental Programs Bulletin 00-09-04, Consolidated Waiver Service Definition Amendment Effective
July 1, 2009
Approved Consolidated Waiver Amendment
Developmental Programs Bulletin 00
00-08-17, Service Definitions* letinId=4412
For specific information about this program, call (717) 783-5764
Table of
of Contents
*Please note: bulletin attachments are available on the DPW website
Person Family Directed Supports (P/FDS)
The Person/Family Directed Support Waiver provides services to eligible individuals
individual with intellectual
disabilities so that they can remain in the community. Individuals eligible are those:
 Eligible for Medical Assistance;
 Age 3 and older;
 Meet criteria for
or an ICF/MR Level of care.
For specific information about this program, including detailed eligibility criteria, services, etc., see
the documents below:
Developmental Programs Bulletin 00-08-04,
, Individual Eligibility for Medicaid Waiver Services
Developmental Programs Bulletin 00-09-02,
09,Person/Family Directed Support Waiver Cap
lopmental Programs Bulletin 00-09-03,
Person/Family Directed Support Waiver Service Definition
Amendment Effective July 1, 2009*
Approved P/FDS Waiver Amendment
Developmental Programs Bulletin 00-08-06,
Approved Person/Family Directed Support Waiver Renewal*
Developmental Programs Bulletin 00-08-17,
Service Definitions*
For specific information about this
thi program, call (717) 783-5764
Table of
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*Please note: bulletin attachments are available on the DPW website
OBRA Waiver
The OBRA Waiver is a Home and Community-Based waiver program that provides
services to people with developmental physical disabilities to allow them to live in the
community and remain as independent as possible.
Who is eligible?
Pennsylvania residents age 18 and older with a severe developmental physical disability
requiring an Intermediate Care Facility / Other Related Conditions (ICF/ORC) level of care.
The disability must result in substantial functional limitations in three or more of the
following major life activities: mobility, communication, self-care, self-direction, capacity for
independent living, and learning.
Functional Eligibility:*
 Developmental disability – onset prior to age 22
 Severe physical disability which is likely to continue indefinitely; results in
substantial functional limitations in three or more major life activities
 Require ICF/ORC level of care
 Primary diagnosis not mental health or mental retardation
Services Available:
 Adult day services
 Assistive technology/specialized medical equipment and supplies
 Community integration services
 Community transition services
 Daily living services
 Education services
 Environmental adaptations
 Personal Emergency Response Systems (PERS)
 Prevocational services
 Respite services
 Service coordination
 Support employment services
 Therapies (behavior, occupational, physical, speech)
 Transportation services
 Visiting nurse
Contact Information:
Consumers interested in applying for OBRA Waiver services or service providers
interested in providing waiver services, please contact the Administrative Entity at
the following locations:
1901 Olde Homestead Lane, P.O. Box 10485
Lancaster, Pennsylvania 17605-0485
(717) 397-1841 or (800) 995-9581
Counties Served: Adams, Allegheny, Armstrong, Beaver, Bedford, Blair, Butler, Cambria, Cameron, Centre, Clarion, Clearfield,
Clinton, Columbia, Crawford, Cumberland, Dauphin, Elk, Erie, Fayette, Forest, Franklin, Fulton, Greene, Huntingdon, Indiana,
Jefferson, Juniata, Lancaster, Lawrence, Lebanon, Lycoming, McKean, Mercer, Mifflin, Montour, Northumberland, Perry,
Potter, Snyder, Somerset, Union, Venango, Warren, Washington, Westmoreland, and York
714 Market Street, Suite 100
Philadelphia, PA 19106
(215) 634-2000 or (888) 634-2155
Counties Served: Berks, Bradford, Bucks, Carbon, Chester, Delaware, Lackawanna, Lehigh, Luzerne, Monroe, Montgomery,
Northampton, Philadelphia, Pike, Schuylkill, Sullivan, Susquehanna, Tioga, Wayne, and Wyoming.
Background: The OBRA Waiver was initially a pproved
pproved by
by the
the Centers
Centers for
for Medicaid
Medicaid and
and Medicare
Medicare Services
Services in
in 1992
1992 and
and was
renewed on July 1, 2006.
To view the OBRA Waiver Application, click here: -2011OBRA.pdf
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The COMMCARE Waiver is a Home and Community
Based program developed for
individuals with a medically determined diagnosis of traumatic brain injury (TBI).
COMMCARE prevents the institutionalization of individuals with TBI and helps them to
remain as independent
ependent as possible.
Who is Eligible?
Pennsylvania residents age 21 and older who experience a medically determinable
diagnosis of traumatic brain injury and require a Special Rehabilitative Facility (SRF) level
of care. The disability must result in substantial functional limitation
tation in three or more of the
ollowing major
major life
life activities:
activities: mobility,
mobility, behavior,
behavior, communication,
communication, self
self -care,
care, self-direction,
capacity for independent living, and cognitive capacity (judgment, memory and reasoning).
atic brain injury or TBI is defined as a sudden insult to the brain or its coverings, not
of a degenerative, congenital or post
operative nature, which is expected to last indefinitely.
Services under this waiver may be provided to individuals living iin
n community settings.
Services available:
Service Coordination:
Assist consumer to identify, coordinate, and facilitate waiver services, state plan
services, and other needed medical, social, and educational services, regardless of
the funding source, including: intake, needs assessment or advocacy.
Ongoing monitoring of services included in consumer's service plan.
Personal Care Services
Assistance with eating, bathing, dressing, personal hygiene, activities of daily
living. Provides limited prompting to initiate or complete daily activities. Hands -on
assistance can be provided, as appropriate. May include some housekeeping
Respite Care
Temporary services offered to consumers to relieve unpaid persons who normally
provide the care. Respite services may be delivered in an individual's home or
place of residence, Medicaid certified Intermediate Care Facility / Other Related
Conditions (ICF/ORC), licensed respite facility, or other community care residential
facility approved by the state that is not a private residence. Respite services may
also be delivered in a relative or friend's home if the consumer's home is not
Prevocational Services
Prevocational services are aimed at preparing an individual for paid or unpaid
employment, but are not job task oriented. Includes teaching such concepts as
compliance, attendance, task completion, problem solving and safety. Provided to
persons not expected to be able to join the general work force or participate in a
transitional sheltered workshop within one year.
Supported Employment
Paid employment for persons for whom competitive employment at or above the
minimum wage is unlikely, and who, because of their disabilities, need intensive
ongoing support to perform in a work setting.
Habilitation and Support
Habilitation and Support Services provide up to a full day (24 hour basis) of
services and/or supports which are designed to ensure the health, safety and
welfare of the individual, and to assist in the acquisition, retention and/or
improvement in skills necessary to support individuals to live successfully in their
Educational Services
Educational services consist of general adult educational services, including
community college, university or other college-level courses, classes and/or
tutoring to receive a GED.
Environmental Adaptations
$20,000 per consumer, per lifetime. Physical adaptations to the home, required by
the consumer's plan of care, necessary to ensure consumer's health, safety, and
well-being, or which enable consumer to function with greater independence in the
home, and without which consumer would require institutionalization. All services
shall be provided in accordance with applicable state or local building codes.
Includes minor modifications to vehicles which will allow the consumer to function
with greater independence in the community.
Non-Medical Transportation
Enables consumer to gain access to waiver and other community services,
activities and resources, specified by the service plan.
Specialized Medical Equipment/Supplies and Assistive Technology
 $10,000 lifetime maximum, prior authorization required.
 Devices, controls, or appliances, specified in the Personal Support Plan, which
enable consumers to increase their abilities to perform activities of daily living, or to
perceive, control, or communicate with their environment.
 Items necessary for life support, ancillary supplies, and equipment necessary to the
proper functioning of such items.
Durable and non-durable medical equipment not available under the State Plan.
Items reimbursed with waiver funds shall be in addition to any medical equipment
and supplies furnished under the State Plan and shall exclude those remedial
benefits to the individual. All items shall meet applicable standards of manufacture,
design and installation.
Chore Services
Services needed to maintain the home in a clean, sanitary and safe environment.
Includes heavy household chores such as washing floors, windows and walls,
tacking down loose rug and tiles, moving heavy items or furniture in order to
provide safe access and exit, and seasonal chores such as cutting grass and
shoveling snow.
Personal Emergency Response Systems (PERS)
 Electronic device which enables consumers at high risk of institutionalization to
secure help in an emergency.
 Limited to consumers who: live alone, or are alone for significant parts of the day;
have no regular caregiver for extended periods of time; would otherwise require
extensive routine supervision.
Extended State Plan Services
 Physical Therapy.
 Occupational Therapy.
 Speech Therapy.
 Part-time Nursing.
 Coaching/Cueing
 Provided to consumers needing minimal or no hands on assistance.
 Provides cues and prompts, facilitates environmental changes, and
provides training to enable consumers to perform daily living activities
Night Supervision
Includes intermittent or ongoing, awake, overnight supervision to a consumer in his
or her residence for a period of eight hours. Can include prompting and cueing.
Can provide assistance with routine functioning and personal care assistance as
may be required. In congregate living situations, staff person shall provide
assistance for up to eight consumers.
Structured Day Program
 Services take place in a non-residential setting.
 Services may include social skills training, sensory/motor development, and
reduction/elimination of maladaptive behavior.
 Services directed at preparing the consumer for community reintegration by
teaching concepts such as compliance, attending, task completion, problem
solving, safety, and money management.
 Physical, occupational, and speech therapy may also be provided if documented in
service plan.
Behavioral Specialist Consultant
Services of an expert who advises the members of the treatment team and
develops an individual behavior management plan for implementation by the family
and professionals working with the consumer.
Cognitive Therapy
The process includes attainment/re-attainment of skills through direct training,
use of compensatory strategies, and use of cognitive orthotics and prostheses.
Therapy will initially begin with individual sessions with the ultimate goal of moving
to a group setting.
Counseling (Consumer and/or Family)
 Provided to consumers in order to resolve intra-psychic
intra psychic or interpersonal conflicts,
family issues and conflicts
conflicts resulting from the brain injury, previous history of
substance abuse or mental health of the consumer.
 Counseling will initially begin with individual sessions with the ultimate goal of
moving to a group setting.
Community Integration
 Assist consumers
nsumers in
in acquiring,
acquiring, retaining,
retaining, and
and improving
improving self
self -help,
help, socialization, and
adaptive skills necessary to reside in the community.
 Enable consumers to plan for and engage in meaningful adult activities, including
domestic and leisure activities.
 Can include:
ude: cues, on-site
on site modeling of behavior, supervision (up to 24 hours a day)
to assist the consumer in maintaining maximum independent function.
Community Transition Services
One time, set-up
up expenses, for individuals who make the transition from an
institution to their own home, apartment or family/friend/foster care living
arrangement.t. Categories
Categories of
of expenses
expenses are:
are: eequipment,
quipment, moving
moving expenses,
expenses, security
deposits, set-up
up fees and personal/environmental health and safety. Expenses
cannot exceed
ed $4,000
$4,000 per
per consumer.
View the renewed COMMCARE Waiver on the web:
Contact Information:
Individuals interested in receiving COMMCARE Waiver services or providers interested in
participating in COMMCARE should contact one of the following organizations depending
upon their county of residence:
1901 Olde Homestead Lane, P.O. Box 10485
Lancaster, Pennsylvania 17605
(717) 397-1841
1841 or (800) 995
Counties Served: Adams, Allegheny, Armstrong, Beaver, Bedford, Blair, Butler, Cambria, Cameron, Centre,
Clarion, Clearfield, Clinton, Columbia, Crawford, Cumberland, Dauphin, Elk, Er ie, Fayette, Forest, Franklin,
Fulton, Greene, Huntingdon, Indiana, Jefferson, Juniata, Lancaster, Lawrence, Lebanon, Lycoming, McKean,
Mercer, Mifflin, Montour, Northumberland, Perry, Potter, Snyder, Somerset, Union, Venango, Warren,
Washington, Westmoreland,
and, and York
714 Market Street, Suite 100
Philadelphia, PA 19106
(215) 634-2000
2000 or (888) 634
Counties Served: Berks, Bradford, Bucks, Carbon, Chester, Delaware, Lackawanna, Lehigh, Luzerne, Monroe,
Montgomery, Northampton, Philadelphia, Pike, Schuylkill, Sullivan, Susquehanna, Tioga, Wayne, and Wyoming.
Table of
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Independence Waiver
The Independence Waiver is a Home and Community-Based
Community Based waiver program that provides
services to persons with physical disabilities to allow them to live in the community and remain as
independent as possible.
Who is eligible?
Pennsylvania residents age 18 and older with a severe physical disability requiring a
nursing facility level of care. The disability must result in substantial functional limitations in
three or more of the following major life activities: mobility, com munication, self-care,
selfdirection, capacity for independent living, and learning . The person must
require a
nursing home level of care, and not have mental health or mental retardation as a primary
diagnosis, and cannot be ventilator dependent.
Services Available:
Assistive technology/specialized medical equipment and supplies
Community integration services
Community transition services
Daily living services
Education services
Environmental adaptations
Personal Emergency Response Systems (PERS)
Respite services
Service coordination
Therapies (behavior, occupational, physical, speech)
Transportation services
Visiting nurse
Contact Information:
Consumers interested in applying for Independence Waiver services or providers interested
in providing waiver services, please contact the Administrative Entity at the following
1901 Olde Homestead Lane, P.O. Box 10485
Lancaster, Pennsylvania 17605-0485
(717) 397-1841
1841 or (800) 995-9581
Counties Served: Adams, Allegheny, Armstrong, Beaver, Bedford, Blair, Butler, Cambria, Cameron, Centre,
Clarion, Clearfield, Clinton, Columbia, Crawford, Cumberland,
Cumberland, Dauphin,
Dauphin, Elk,
Elk, Erie,
Erie, Fayette,
Fayette, Forest,
Forest, Franklin,
Fulton, Greene, Huntingdon, Indiana, Jefferson, Juniata, Lancaster, Lawrence, Lebanon, Lycoming, McKean,
Mercer, Mifflin, Montour, Northumberland, Perry, Potter, Snyder, Somerset, Union, Venango, W arren,
Washington, Westmoreland, and York
714 Market Street, Suite 100
Philadelphia, PA 19106
(215) 634-2000
2000 or (888) 634-2155
Counties Served: Berks, Bradford, Bucks, Carbon, Chester, Delaware, Lackawanna, Lehigh, Luzerne, Monroe,
Montgomery, Northampton, Philadelphia, Pike, Schuylkill, Sullivan, Susquehanna, Tioga, Wayne, and Wyoming.
View the Independence Waiver Application
Application: -2011Independence.pdf
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An Overview for Support Coordinators
The Department of Public Welfare (DPW) maintains a public information system consisting
of documents issued as regulations, statements of policy and notices. It is contained in the
Pennsylvania Code, Title 55 ( and is based in
the Mental Health/Mental Retardation Act of 1966. Within the code are instructions governing the
operation of all DPW programs, including many of those provided to individuals eligible for mental
retardation services.
Regulations give direction regarding health, safety and rights of people receiving services;
standards for how support is delivered and the ratios of support people to individuals served;
frequency of planning and review; eligibility, licensure, and proper care of facilities; content,
confidentiality and handling of records, and certain rules for agency administration. The regulations
implement and interpret law and prescribe policy as well as practice and procedure of DPW.
Why Support Coordinators need to know about regulations
Regulation is the foundation for promoting safe, effective, and quality services. The
Supports Coordinator is not responsible to ensure regulations are met; that duty lies with other
professionals, including providers and the Office of Mental Retardation licensing. However, a
working knowledge of regulation is vital as Supports Coordinator’s monitor for health and safety,
partner with providers in developing plans governed by regulatory expectations, and facilitate team
discussions to help people attain outcomes in less restrictive and inclusive environments.
Without an understanding of regulation, Supports Coordinator’s will not fully understand the
reasons providers do what they do. Confusion can lead to disruption in the team process,
difficulty collaborating with other professionals, missed opportunities for improvement and
problem resolution, and less than excellent service. Supports Coordinator ’s and providers must
collaborate to integrate regulations within efforts to support men and women they serve.
Regulations governing mental retardation services
The Regulations of the PA Code are divided into Chapters for each service provided through DPW.
The Chapters governing mental retardation services are:
Chapter 2380 (
Adult Training Facilities serve those 59 years old and younger who do not have a
dementia-related disease as a primary diagnosis. The Chapter addresses supporting
people in functional activities, assistance in meeting personal needs and in performing
basic daily activities. It applies to care provided for part of a 24-hour day, excluding care
provided by relatives.
Chapter 2390 (
addressing Vocational Facilities, guides professionals in assisting people to develop skills
necessary for placement in a higher level vocational program and ultimately into
competitive employment, or, to maintain existing employment services.
Chapter 6400 (
sets the foundation for providing service within community homes. The Chapter outlines
rules under which residential care is provided to one or more individuals within a building or
separate dwelling unit. Within the Chapter introduction is specific information about when
the regulations apply, depending on the number of people served and the amount of
support provided.
Chapter 6500 (
describes requirements and best practice for Lifesharing Through Family Living, when one
or two individuals live in a private home with others. The Chapter specifically describes how
the service can help foster lasting personal relationships in a home environment that still
meets standards for health, safety, growth and development
All Chapters contain the following common sections and elements:
These sections establish the purpose of the Chapter, define terms, and describe which services
These sections establish responsibility for reporting incidents, safeguarding funds and property,
appeal and grievance rights; program capacity, employee background checks and instruction about
program self-assessment. Also included in these sections are rights of men and women receiving
service, including civil rights as citizens.
In these sections, the minimum of support staff to people served is listed, as well as circumstances
under which people may be at home alone for periods of time and the connection to what is written
in the plan.
This section details the rights of people receiving services as well as listing the civil rights to which
all citizens are entitled.
Detail concerning the care and use of physical facilities is contained in Physical Sites sections: both
interior and exterior; the safety and comfort of environments and the need for accommodation for
special needs is included. Direction for storage of hazardous materials and the requirements for
first aid materials are listed. Information about furnishings, equipment, and adequate space for
people in community and Life-Sharing homes is contained here.
These sections are very detailed, and emphasize the importance of training staff and the men and
women they support in emergency response including: frequency of drills, evacuation times, and
people needing support to be safe. Fire safety sections list the equipment that must be present and
how often it is inspected, direction for exits and unobstructed egress, furnaces, fireplaces, and
smoking policies. Inspection and collaboration with local fire safety authorities is established.
The type of activities for each service are outlined in this section, including initial and ongoing
assessment and content of the Individual Program Plan (IPP) and Individual Written Program Plan
(vocational programs.) In this section, professionals responsible for gathering information for the
IPP will also find information on timeframes, content, who is invited, and frequency of review.
Vocational evaluation and minimum amount of work are included in the 2390 regulations.
The Health section includes requirements for annual physicals for people served, and (in certain
programs) for staff, as well. The issue of communicable diseases is discussed; the content of the
emergency medical plan is outlined. The general direction for medication administration during day
services is noted. Direction for supporting those who refuse treatment is included in this section.
In this section, professionals find direction on administration and self-administration of medications,
documentation, safe handling and storage of medications, as well as the requirement to involve
medical professionals in oversight and administration of certain medications, such as injectibles, in
this section. Response to adverse reactions and recording medical errors are outlined here.
This section specifies the strict parameters surrounding the documentation and use of actions that
restrict the freedom of individuals whose actions pose an immediate risk to self or others. It
delineates that restrictive procedures are used only when all other alternatives have been tried and
failed; that each use is subject to oversight by objective behavior review committees and trained
professionals, that seclusion, exclusion, and aversive conditioning are prohibited; and that chemical
and mechanical restraints are subject to additional oversight by medical professionals. Supports
Coordinators are responsible for promoting positive approaches for people with challenging
behaviors, assisting providers in meeting ODP’s goal of restraint elimination, using person-centered
planning techniques and the ISP to support people in living safely.
Direction for content and emergency information, location, access, and retention of records is found
in this section.
The following regulations apply only to services that support people in community homes:
This section describes parameters for accelerating the process of supporting individuals in homes
when circumstances warrant.
Requirements for residential facilities that also serve people in an intermittent fashion are outlined
Support to people needing less intensive support than community homes (whether the dwelling is
their own or owned by the agency) is outlined in this section.
The following regulations apply only to people participating in vocational services:
Vocational facilities rely on these guidelines when keeping people informed of admission, orienting
them to the service, and helping to place them in community employment.
When this service is offered to individuals being enrolled in vocational facilities, professionals are
guided by the regulations in this section of the 2390 regulations.
This brief section of the regulations for vocational facilities outlines the requirements to support men
and women who work independently enough to need less frequent program review and
Visit the PA Code home: Pennsylvania Code
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ennsylvania Advocacy and Support Resources
Founded in 1951, ACHIEVA is committed to excellence in lifelong supports and services for people
with disabilities. It is the largest nonprofit organization in Western Pennsylvania serving children
and adults with disabilities and their families. ACHIEVA a nnually supports nearly 7,000 children and
adults with disabilities through advocacy, community services, education, vocational training and
placement, special needs trusts, and family supports. Recently, ACHIEVA received a three -year
Accreditation with Distinction,
stinction, the highest possible ranking from The Council on Quality and
Leadership, an organization that evaluates agencies serving people with disabilities.
Telephone: 412-995-5000
Toll-free: 1-888-272-7229
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The Arc of PA
The Arc is the largest advocacy organization in the United States for citizens with cognitive,
intellectual, and developmental disabilities, and their families. The Arc of Pennsylvania is the state
chapter of The Arc.
The Arc's mission is to work to include all children and adults with cognitive, intellectual, and
developmental disabilities in every community. We promote active citizenship and inclusion in
every community. In conjunction
tion with its local chapters and the national organization, The Arc of
Pennsylvania works every day to carry out its mission -to
to work to include all children and adults with
cognitive, intellectual, and developmental disabilities in every community.
al chapters of The Arc focus on providing resources and individual advocacy services. The Arc
of Pennsylvania focuses on systems advocacy and governmental affairs, demonstrating leadership
and guidance among all disability organizations in Pennsylvania.
The Arc of Pennsylvania pursues its mission in the following ways:
Public Policy Advocacy
Family Training
Public Awareness
Community Resources
Executive House, Suite 8
101 S. Second Street
Harrisburg, Pennsylvania 17101
(717) 234-2621 (phone)
(800) 692-7258 (toll-free)
(717) 234-7615 (fax)
Stephen H. Suroviec
[email protected]
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Disability Rights Network
Disability Rights Network of Pennsylvania (DRN - formerly “Pennsylvania Protection & Advocacy
and the Disability Law Practice) ) is a statewide, non-profit
profit corporation
corporation designated
designated as
as the
the federally
federally mandated organization to advance and protect the civil rights of adults and children with disabilities.
DRN works with people with disabilities and their families, their organizations, and their advocates
to ensure their right to live in their communities with the services they need, to receive a full and
inclusive education, to live free of discrimination, abuse and neglect, and to have control a nd selfdetermination over their services. DRN works to ensure that people with disabilities have equal and
unhindered access to employment, transportation, public accommodations, and government
services; to enforce their rights to vocational, habilitative , post-secondary
secondary educational, health, and
other services; and to protect them from abuse and neglect. DRN identifies systemic issues which
are important to people with disabilities and seeks change and reform through litigation,
administrative advocacy, and
d public education.
Harrisburg Office
1414 N. Cameron St., Suite C
Harrisburg, PA 17103
7443 [Voice]
7139 [TDD]
(717) 236-8110
8110 [Voice]
(717) 346-0293 [TDD]
(717) 236-0192 [Fax]
[email protected]
Philadelphia Office
The Philadelphia Building
1315 Walnut St., Suite 400
Philadelphia, PA 19107–4798
(215) 238-8070
8070 (Voice)
(215) 789-2498 (TDD)
(215) 772-3126 (Fax)
[email protected]
Pittsburgh Office
429 4th Avenue, Suite 1901
Pittsburgh, PA 15219-1505
(412) 391-5225
5225 [Voice]
(412) 467-8940 [TDD]
(412) 391-4496 [Fax]
[email protected] [Email]
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Education Law Center – PA
For thirty years, the Education Law Center (ELC) has worked to make good public education a
reality for Pennsylvania’s most vulnerable students – poor children, minority children,
children children with
disabilities, English language learners, children in foster homes and institutions, and others.
ELC began as - and still is - a legal advocacy organization. Through our Help Line, we offer free
assistance to thousands of families each
e ach year. Our staff provides information on the legal rights of
public school students, help with problem -solving,
solving, written materials, and contacts. In some cases
involving large numbers of children, we provide legal representation (though we are, of course , able
to do this in only a relatively small number of cases). Our achievements include significant legal
victories for public school families.
But ELC is more than a law office. Over time, our strategies have come to include not just legal
work, but also training and information-sharing;
information sharing; advocating for children in Harrisburg and
Washington; and working with the media.
media. We're
We're especially
especially proud
proud of
of our
our growing
growing number
number of
collaborations with citizen groups around the state, with whom we are seeking change both l ocally
and at the state level.
ELC's goals have also evolved over time. In the early '90s, for example, we created the
Pennsylvania School Reform Network. PSRN was our route into a number of new projects,
including efforts to fix Pennsylvania's school funding
fun ding system and to narrow the "achievement gaps"
that affect poor children and other disadvantaged groups. Over time, PSRN has ceased to be a
separate project, but its priorities continue to be ELC's priorities.
ELC's services are free, which means that f und-raising
raising is
is always
always aa top
top concern.
concern. We
We have
have been
fortunate to have many generous funders.
Our Philadelphia office answers our Help Line (for all area codes except 724, 814, and 412) from 9
am to 2 pm Monday through Friday – Call (215) 238-6970.
Our Pittsburgh office (for area codes 724, 814, and 412) answers our Help Line from 8:30 am - 4:30
pm Monday through Friday – Call (412) 391-5225.
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The Institute on Disabilities
The Institute on Disabilities, located on the main campus of Temple University in Philadelphia,
celebrates 30 years as Pennsylvania's University Center for Excellence in Developmental
Disabilities. In keeping with its proud history of working to change system s so people can live,
learn, work, worship, and play in communities of their choice, the Institute is the coordinating and
support entity of the state-wide
wide Partnership. This office supplies technical assistance to create
written, audio, and graphic materials
materials to the Partners to ensure training curricula are available for all
audiences. Arrangements and accommodations are made through this office to ensure trainings
are accessible to all participants. And, perhaps, most importantly, activities of the Partners hip
agencies are coordinated through the Institute to ensure the state -wide
wide trainings offered to people
with disabilities, professionals, and family members are comprehensive and consistent.
Telephone: 215-204-3031
Toll-free: 1-866-865-6170
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Mentor Parent Program – NW Rural PA
The Mentor Parent Program, Inc. MPP is a community based grassroots parent project. Our
Mission exists to
to provide
provide support
support and
and services
services to
to the
the parents
parents of
of children
children and
and adults
adults with
with disabilities.
MPP was established in 1989 by parents who came together with a vision to create a program that
will keep improving the quality of the lives of children and adults with disabilities and their families.
One to one assistance for parents as related to special
specia education and information/technical
assistance to groups.
The purposes of the Mentor Parent Program are:
To provide assistance and training to parents and professionals.
To provide one-on -one
one mentoring and support.
To provide information and appropriate
To develop home-school
school partnerships.
To foster parent involvement with the early intervention & education systems.
To develop community awareness of the needs of children with disabilities.
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Mentors for Self-Determination
Mentors for Self Determination is aa statewide
statewide group
group for
for people
people with
with developmental
developmental disabilities
disabilities and
their families. The group shares a strong belief in self-determination
self determination and a commitment to helping
people live self-determined
determined lives.
We provide information through one-on-one
one mentoring and training that enables people and
families to expand their knowledge of and access to services and to navigate support systems.
With sound knowledge and solid support, people are able to make choices, improve
improve their
their quality
quality of
life, build healthy and helping relationships, contribute to the community, and gain control over
supports they need to have everyday lives.
We are a resource for people with disabilities and family members as they learn about the
principles of self-determination
determination with the goal of forming helping partnerships among people with
disabilities, their families, and support systems in their counties and throughout the state.
We are building a network of Self Advocates and Family Mentors in all counties. Mentors serve as
local resources for other people, family members, organizations, county/AE Mental Retardation
offices, and state level committees. Mentors are located throughout the state.
email: [email protected]
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PA Developmental Disabilities Council
The Pennsylvania Developmental Disabilities Council is a group made up of people with disabilities,
family members, advocates, and state department representatives who work to create favorable
conditions for people with developmental disabilities and their families in the Commonwealth.
Created under a federal act and Governor’s Executive Order, the Council is both a planning group
and a funding body. The Developmental Disabilities Council is charged with periodically creating a
state plan. It begins by learning
ning about the present situation for people with developmental
disabilities and their families in Pennsylvania. Next, the Council considers actions and strategies
that will lead to more integrated and productive lives for people with developmental disabili ties in
our state. These action ideas become the heart of the Council’s work plan over the coming years.
In order to achieve the goals in the plan, the Council
Council funds
funds proposals
proposals from
from groups
groups and
organizations through a competitive bid process. The Council’s w ork is broad and its activities are
many. The Council participates in creating a better future for Pennsylvanians with disabilities by:
Funding short-term
term projects that show new and innovative ways for people with disabilities to live,
learn, play, work and
d participate fully in communities throughout Pennsylvania.
 Involving, educating and supporting people with disabilities and their families in
leadership roles, insuring that they have a strong voice on matters in Pennsylvania
which affect their lives.
 Advocating for improved public policies and services so that people with developmental
disabilities may benefit from the opportunities and resources available to all other
citizens and community members.
 Encouraging communities to remove barriers and prov ide a welcome to children and
adults with developmental disabilities in the neighborhoods and communities in which
they live.
Harrisburg Office
Room 569 Forum Building
Commonwealth Avenue
Harrisburg, PA 17120
Pittsburgh Office
8500 Brooktree Road
Suite 100
Wexford, PA 15090
Advances the empowerment of citizens with disabilities
and offers grant funding.
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PA Health Law Project
PHLP is a nationally recognized expert and consultant on access to health care for low -income
consumers, the elderly,
y, and persons with disabilities. For more than two decades, PHLP has
engaged in direct advocacy on behalf of individual consumers while working on the kinds of health
policy changes that promise the most to the Pennsylvanians in greatest need.
PHLP provides free legal services to lower -income
income consumers, seniors, and persons with
disabilities who are having trouble accessing publicly funded healthcare coverage or services. If
you are denied or terminated from enrollment in a pub licly funded healthcare program or if you
have a service denied, reduced, or terminated, PHLP may provide you free direct representation on
your appeal. For assistance, please call 1-800-274-3258
PHLP also serves as a back-up
up center to local legal services and advises or offers
off ers co-counsel
attorneys or paralegals at all of the 18 legal services programs around Pennsylvania when, for
instance, a client's request for service has been turned down as "experimental" by an HMO, or
when a client has been cut off from shift nursing. PHLP publishes two bi-monthly
monthly newsletters and
manages a list serve so lawyers can read about the latest developments in civil health law for the
poor. PHLP convenes the Health Law Task Force four times a year for attorneys who need to get
together with advocates
dvocates and clients from around the state to share information about cases and to
develop strategies to resolve them.
PHLP monitors all legal and administrative developments that affect the disabilities community and
disseminates the information in newsl etters and bulletins to hundreds of disabilities advocacy
groups throughout the state. PHLP provides advice and direct assistance annually to thousands of
Pennsylvanians with developmental disabilities through its general toll free line.
1-866-236-6310 TTY
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Parent Involved Network of PA
Parents Involved Network of Pennsylvania (PIN) is an organization that assists parents or
caregivers of children and adolescents with emotional and behavioral disorders. PIN provides
information, helps parents find services and will advocate on their behalf with any of the public
systems that serve children. These include the mental health system, education, and other state
and local child-serving
serving agencies.
PIN assists parents of children who:
 Have
ave emotional or behavioral disorders .
 Are
re receiving mental health system services .
 Are receiving
ving special
special education
education services.
 Are
re in the juvenile justice system .
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Parent to Parent of PA
Parent to Parent of Pennsylvania matches parents and family members
members of
of children
children and
and adult
adult with
disabilities or special needs, to supporting parents, on a one-to-one
one basis according to condition or
concerns. Some of these include, but are not limited to: Physical Disabilities, Developmental
Disabilities, Special Health
ealth Care Needs, Behavioral/Mental Health Concerns, Foster Care or
Adoption and Educational Issues. 1-800-986-4550
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PA Premise Alert System
he Premise Alert System provides a uniform way for individuals living with disabilities or
challenges to notify Police about any special need they may have before there is a crisis. It links
already existing agencies and organizations to work in a new way that benefits all parties, without
adding significant cost (costs are copying the form and information management) or an additional
layer of government. It is a state-wide,
disability program that has the ability to benefit all
communities - rural, urban, poor and wealthy alike - regardless of available technology. The
Premise Alert System has a broad scope of impact that has been proven to be a win -win for
everyone. It serves every age and crosses all racial and economic barriers. It can be run in
i every
geographic area without compromising the system. It can assist during a personal or community
crisis or help locate an individual with a disability who may have wandered from home. It assists
local Emergency Management Services and First Responders
Responde rs in being more effective and
knowledgeable about the community they serve.
 The family receives the Premise Alert Form and instructions from a case manager or
community group.
 If they choose to fill it out, they then take a copy to their local police department.
 The Police Department keeps a copy on hand and informs officers at roll call and briefing
 The Police Department keeps a copy on hand and forwards a copy to the 911 center.
 The 911 center then puts the information into their database.
 If the family or individual calls 911 all of their information will be made available to whichever
First Responder is needed: Police, Fire-fighters
fighters or
or Emergency
Emergency Medical
Medical Services.
 The family or individual needs to update the information annually.
More information about the program (including instructions) can be found at:
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PA Statewide Independent Living Council
The Pennsylvania Statewide Independent Living Council (PASILC) promotes the development and
expansion of a statewide network of consumer-directed
Centers for Independent Living.
Living. There
There are
seventeen (17) individual centers throughout the state of Pennsylvania serving a total of sixty seven (67) counties. These centers were established to advance the rights of persons with
disabilities through the elimination of barriers that
at people
people with
with disabilities
disabilities experience.
Empowering people with disabilities to fully participate in all aspects of society is the guiding
principle of the centers. The centers offer services to people with disabilities as well as families of
individuals with disabilities, community service providers, government agencies, private businesses
and the community at large.
Each Center for Independent Living in Pennsylvania:
Follows the Independent Living Philosophy;
es in collective systems change;
otes the availability of Independent Living options
opt ions regardless of disabilities;
Conducts outreach to unserved and underserved persons .
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PA Tourette Syndrome Association
The Pennsylvania Tourette Syndrome Association, Inc. (PATSA) is a nonprofit agency that is
affiliated with the national Tourette Syndrome Association. PATSA was created to serve
Pennsylvania citizens who have Tourette Syndrome, a neurobiologi cal,
cal, genetic
genetic disorder.
disorder. A
A primary
goal of PATSA is to locate all residents with Tourette Syndrome and to offer assistance to them and
their families. To this end, PATSA has established knowledgeable, nonprofessional support groups
and chapters throughout thee state.
state. PATSA
is dedicated
dedicated to
to providing
providing cost
free information and nonnon
legal advocacy in the areas of education, community services, public accommodations,
employment, and housing.
(717) 337-1134
(717) 337-1960 (fax)
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PA Waiting List Campaign
The PA Waiting List Campaign was formed to end the Waiting Lists for community services for
people with mental retardation. The Pennsylvania Waiting List Campaign is working to end
devastating Waiting Lists for community services and supports for people with mental retardation
and their families.
The PA Waiting List Campaign
4540 Best Station Road, Slatington, PA 18080
Phone/Fax 610-767-2437;
2437; TTY 215-923-8898
x133; Toll Free 1-877-372-WAIT
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Self-Advocates United as 1
The newly-formed
formed SAU1 brings together people with developmental disabilities across the state to
break down walls and build bridges to an everyday life. Using
Using tools
tools of
of enthusiasm,
enthusiasm, ideas,
brainpower, information, and knowledge, members offer trainings statewide on how to dream big
and make real plans; how to make your own choices; how to f ight for your rights; and to provide
answers to your questions or tell you the right people to ask when we don't have the answers.
We take action on committees to make changes for all people with cognitive disabilities. We are
always learning more about the
he system
system in
in order
order to
to guide
guide others
others through
through the
the system
system to
to get
get what
what they
need. Members proclaim the right to an Everyday Life.
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Speaking For Ourselves
Speaking for Ourselves (SFO) was established in 1982 by and for people with developmental
disabilities. The agency provides and organizes leadership development and self -advocacy skills
and awareness. SFO members, known as self-advocates,
are found across the state. As members
take on leadership roles, they teach the public about the needs, wishes, and potential of people
with disabilities. One of their most important functions is to represent people with disabilities on
state and national policy committees.
Telephone: 610-825-4592
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The Special Kids Network
The Pennsylvania Department of Health’s Special Kids Network is a free statewide service
dedicated to assisting families of children with special needs in obtaining the services they need.
Services include:
Education and Training
Health Care Products and Services
Recreation and Leisure Activities
Social Services and Counseling
 Support and Advocacy
 Therapy
 Information and referral via a toll-free
telephone line that connects
onnects callers
callers to
to an
an Information
and Referral Specialist (see below.)
 A database containing thousands of referral resources including information about local,
state, and national agencies
agenci in the following categories (see below.)
The Special Kids Network:
 Offers callers access to health care coverage and other social service programs including
WIC, pediatric and pregnancy services, long-term
long term care,
care, and
and lead
lead poisoning
poisoning prevention
prevention to
name a few.
 Maintains six regional offices, each working with and within local communities to create or
improve services for individuals with
wit special needs and their families.
 Participates in, offers technical assistance, and facilitates activities for community
development, coalition building, and program
development and monitoring.
 Identifies community needs and assists in developing ser vices that are family-focused,
culturally competent, and community-based.
free helpline and information:
 Call our toll free helpline and speak with a certified Information and Referral Specialist at:
4550 or TTY 1-877-232-7640
7640 Monday through Friday from 8:00am to 8:00pm,
and Saturday from 9:00am to 3:00pm.
 Access our searchable database of local and statewide health and soci al services:
Or read about the Special Kids Network on the web:
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Vision for Equality
Founded in 1996, Vision for Equality, Inc. serves a mission of assisting and empowering people
with disabilities and their families to seek quality and satisfaction in their lives. We offer individual
assistance, training and monitoring to people with disa bilities
bilities and
and their
their families.
families. We
We advocate
locally, state-wide,
wide, and nationally for people with disabilities to have opportunities, equal rights,
access to quality services and supports, and to become informed, powerful, and respected
members of their communities.
ties. All of our work upholds our vision for all people, a vision grounded
firmly in community.
We welcome the opportunity to provide training, technical assistance, and mentoring through the
Partnership to people with disabilities, their families, and t heir caregivers across the
Our newly-opened
opened office in Harrisburg and our main Philadelphia office enable us to provide
training and assistance that allows people to achieve the quality of life that they dream of, desire,
and deserve as equall citizens in our communities.
Philadelphia: 215-923-3349
Harrisburg, 717-233-2424
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Relevant Laws and Acts
The Olmstead Ruling
What is Olmstead?
Olmstead is used here to describe the 1999 Supreme Court judgment in the case Olmstead v. L.C.
(US Supreme Court 1999). The case was brought against the Georgia State Commissioner of
Human Resources (Tommy Olmstead) on behalf of two women with developmenta l disabilities
(known as L.C. and E.W.) who were diagnosed with mental illness (schizophrenia and per sonality
disorder respectively.) They were voluntarily admitted to Georgia Regional Hospital for treatment in
a psychiatric unit (Atlanta Legal Aid Society 2004).
2004). After
After some
some time,
time, they
they indicated
indicated their
their preference
for discharge and the professionals working with them assessed that they were ready to move into
a community setting with appropriate support.
However, they were not successfully discharged from the hospital
hospital and
and in
in 1995
1995 the
the Atlanta
Atlanta Legal
Legal Aid
Society brought this lawsuit and it was eventually heard by the Supreme Court. The Supreme Court
ruled that under Title II of the Americans with Disabilities Act (ADA, 1990) the women had the right
to receive care
e in the most integrated setting appropriate and that their unnecessary
institutionalization was discriminatory and violated the ADA.
Why is Olmstead important?
The Olmstead ruling provides an important clarification about how states should comply with T itle II
of the ADA. The ADA applies to all public bodies and to the use of public funds and therefore has
implications for publicly-funded
funded Medicaid services to people with disabilities (Rosenbaum and
Teitelbaum 2004). The Olmstead decision confirmed that states
s tates must ensure that Medicaid -eligible
individualss do not experience discrimination by being institutionalized when they could be served in
a more integrated (community) setting (Rosenbaum and Teitelbaum 2004). This obligation is
sometimes known as the ADA
DA ‘integration mandate’.
The Supreme Court made limited recommendations for how states might ensure compliance with
the ADA in light of Olmstead. The Court indicated that states should make ‘reasonable
accommodations’ to their long-term
term care systems, but should not be required to make ‘fundamental
alterations’. It suggested that compliance might be demonstrated by ‘comprehensive, effectively
working plans’ (Olmstead Plans) to increase community-based
community based services and reduce
institutionalization, and by ensuring
ensuri ng that waiting lists for services move at a ‘reasonable pace’
(Smith and Calandrillo 2001). An analysis of rulings in community integration lawsuits after
Olmstead has shown that lower courts have generally decided that “evidence of active engagement
and slow progress” towards more community-integrated
term care satisfies the ADA
(Rosenbaum and Teitelbaum 2004).
To help states comply with Olmstead, the Federal government issued guidance based on the
opinions given by the
he judges. It has also provided: ongoing policy guidance encouraging review and
development of state LTC policy (e.g., Olmstead plans), promoted the increased use of existing
policy options for HCBS (e.g., encouraged states to apply for HCBS waivers) , and announced rule
amendments to enable
ble more flexibility in Medicaid HCBS (e.g., ability to provide retainers to
personal assistants) (Rosenbaum 2001).
While the Federal Government’s commitment to new initiatives (e.g., the New Freedom Initiative)
has been welcomed, it has also been critic ized on two counts; (1) a lack of an overall national
policy framework for community integration of people with disabilities, and (2) inadequate
stimulation of change in the long-term
long term care system to eliminate unnecessary institutionalization of
disabled people
ople (Gran et al 2003).
The Olmstead ruling stimulated lawsuits raising similar issues in other states on behalf of people
who are institutionalized or at risk of institutionalization because of a lack of community -based
services. These lawsuits often invoke
inv oke two different sets of Federal laws; (1) civil rights laws
(including the ADA, Olmstead ruling and the Rehabilitation Services Act 1973) and (2) Medicaid law
(US DOJ 2002). These lawsuits are the described in Table 2.
The ruling also led to complaints against
against states
states being
being filed
filed with
with the
the Department
Department of
of Justice
Justice regarding
community integration (Rosenbaum et al 2001, US DOJ 2005). One study found that by May 2004,
627 complaints had been filed against state agencies claiming that people had not received
vices in
in the
the most
most integrated
integrated setting
setting (Rosenbaum
(Rosenbaum and
and Teitelbaum
Teitelbaum 2001).
2001). In
In addition,
addition, aa recent
report from the Office of Civil Rights describes community integration complaints from
approximately 250 individuals across the nation which it has resolved (OCR, 2 005).
Given the importance of personal assistance services in supporting the community integration of
people with disabilities, the Center for Personal Assistance Services tracks these post -Olmstead
lawsuits and strategic developments (e.g., state Olmste ad plans).
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Pennsylvania MH/MR Act of 1966
The MH/MR Act of 1966 does not supersede Waiver rules. The Pennsylvania Department of
Public Welfare (DPW) is responsible for supervising a comprehensive mental health and mental
retardation program for citizens of the Commonwealth. The primary authority for this program is the
Mental Health and Mental Retardation Act of 1966 (1966 Act). This legislation calls for a
comprehensive service delivery system which prov ides a full array of treatment and rehabilitation
services in both institutional and community settings. The 1966 Act is interpreted in conjunction with
the Mental Health Procedures Act that governs voluntary and involuntary admissions to mental
health treatment facilities.
The major goal of the legislation was to transfer the treatment and "habilitation" of patients to the
maximum extent as possible from large, crowded and geographically isolated state mental
hospitals and retardation centers into community programs. The ter m "habilitation" refers to the
process of improving the level of functioning of individuals with mental retardation who have never
attained an adequate level of basic daily living skills.
The 1966 Act requires counties acting either individually
indivi dually or through joinders (joint programs by
more than one county) to establish Mental Health and Mental Retardation Boards and appoint
County Mental Health and Mental Retardation Administrators. Counties are required to establish
mental health and mental retardation programs to provide "diagnosis, care, treatment, rehabilitation
and detention of the mentally disabled" through nine mandatory services:
1. Short term inpatient services other than those provided by DPP;
2. Outpatient services;
3. Partial hospitalization
pitalization services;
4. Emergency services;
5. Consultation and education services to professional personnel;
6. Aftercare services for persons released from inpatient facilities;
7. Specialized rehabilatative
ative and training services, including sheltered w orkshops;
8. Interim care of individuals with mental retardation awaiting admission to state mental retardation
centers; and
9. Unified intake, placement and referral services.
Funding for community mental health and mental retardation programs i s provided from a variety of
federal, state, local and private sources. The primary sources of funding include Commonwealth
grants made pursuant to the 1966 Act, grants made by the Commonwealth from funds provided by
the Federal Drug Abuse, Alcoholism and Mental
Mental Health
Health Block
Block Grant,
Grant, Social
Social Services
Services Block
Block Grant,
Medical Assistance and Medicaid, county appropriations, private insurance reimbursement and
client contributions to the cost of services.
Neither the state nor a county is required to spend public f unds
unds under
under the
the 1966
1966 Act
Act until
until aa mentally
disabled person has exhausted benefits under all other existing private, public, local, state or
federal programs. In addition, the 1966 Act requires service providers and counties to collect the
costs of care and services
ervices provided from persons with a mental disability and from persons owing a
duty of support to these individuals to the extent they are financially able to pay for services. The
Department of Public Welfare has adopted regulations defining client liabi lities for mental health
and mental retardation services and has set forth billing and collection procedures.
Eligibility is determined according to standards set forth by the Department of Publi c Welfare and
the Office
Office of
of Income
Income Maintenance.
Maintenance. Medical
Medical Assistance
Assistance for
for children
children with
with severe
severe disability
disability regardless
of the parents’ income is an entitle ment in Pennsylvania. An adult who receives Social Security
Income for a disability or blindness that occurred prior to age 22 may have the right to Assistance
benefits depending on income and resources.
Applications for Medical Assistance programs (English or Spanish) can be obtained:
 On the DPW website: .
 At your local County Assistance Office
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The American with Disabilities Act
Public Law 101-336 contains the ttext of the Americans with Disabilities Act, Public Law 336 of the
101st Congress, enacted July 26, 1990. The ADA prohibits discrimination and ensures equal
opportunity for persons with disabilities in employment, State and local government services, public
accommodations, commerciall facilities, and transportation. It also mandates the establishment of
TDD/telephone relay services.
More information is available:
 Toll-Free
Free ADA Information
Callll to obtain answers to general and technical questions about the ADA and to
order technical assistance materials:
800-949-4232 OR
 View Public Law 101-336
336 on the web:
Table of
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ACT-13 OF 1997
Mandatory Abuse Report Form
Instruction Sheet
Background and process:
13 of 1997 requires an employee or administrator of a facility who has reasonable cause to
suspect that a recipient is a victim of abuse to immediately report the abuse. The effective date
was December 10, 1997.
Employees and/or administrators who have reasonable cause to suspect that a recipient is a victim
of any of the types of abuse described below shall immediately make an oral report to the Area
Agency on Aging (AAA). In addition to reporting to the AAA, oral reports must be made to the
Pennsylvania Department of Aging (PDA) and local law enforcement for suspected abuse involving
sexual abuse, serious physical injury, serious bodily i njury
njury or
or ifif aa death
death is
is suspicious.
Within 48 hours of making all oral reports, the employee or administrator shall make a written report
(on forms prescribed by PDA as mandated by Act 13) to the AAA. Additionally, within 48 hours of
making an oral report for an abuse involving sexual abuse, serious physical injury, serious bodily
injury and suspicious death, the employee and an administrator shall make a written report (on
forms prescribed by PDA as mandated by Act 13) to appropriate law enforcement officials. The
AAA will forward a copy of the written report to the Department of Aging within 48 hours for all
reports involving sexual abuse (not including sexual harassment), serious physical injury, serious
bodily injury and suspicious death.
NOTE: Sexual harassment is an abuse that requires reporting to the AAA; however, it is not sexual
abuse that requires reporting to PDA and local law enforcement.
13 mandates the following facilities to report: domiciliary care homes; home health
agencies; long-term
term care nursing facilities; older adult daily living centers; personal care homes. In
addition, the Pennsylvania Department of Health has defined home health care organization or
agency to include: hospices and birth centers, and
a nd the Department of Public Welfare (DPW) has
concluded that Act-13
13 reporting is applicable to all DPW -licensed and DPW -operated
operated residential
facilities for adults. The additional DPW facilities include: community residential rehabilitation
services, 55 Pa.. Code Ch. 5310; Long Term Structured Residences, 55 Pa. Code Ch. 5320;
community homes for individuals with mental retardation, 55 Pa. Code 6400; family living homes,
55 Pa. Code Ch. 6500; ICFs/MR (private and state), 55 Pa. Code 6600; state mental hospit als and
state nursing facilities.
Recipient: An individual who receives care, services or treatment in or from a facility. (regardless
of age)
Abuse: The occurrence of one or more of the following acts: (1) the infliction of injury,
unreasonable confinement,
nement, intimidation
intimidation or
or punishment
punishment with
with resulting
resulting physical
physical harm,
harm, pain
pain or
or mental
anguish; (2) the willful deprivation by a caretaker of goods or services which are necessary to
maintain physical or mental health; (3) sexual harassment; and/or (4) sexual abu se which is
intentionally, knowingly or recklessly causing or attempting to cause rape, involuntary deviate
sexual intercourse, sexual assault, statutory sexual assault, aggravated indecent assault or incest.
Serious Bodily Injury: An injury which create
createss a substantial risk of death or which causes serious
permanent disfigurement or protracted loss or impairment of the function of a body member or
Serious Physical Injury: An injury that causes a person severe pain or significantly impairs a
’s physical functioning, either permanently or temporarily.
Sexual Harassment: Sexual harassment is unwelcome sexual advances, requests for sexual
favors, and other verbal or physical conduct of a sexual nature.
Sexual Abuse: Intentionally, knowingly or recklessly causing or attempting to cause rape,
involuntary deviate sexual intercourse, sexual assault, statutory sexual assault, aggravated
indecent assault, indecent assault or incest.
Pennsylvania Department of State
The Bureau of Professional and
and Occupational Affairs in the Department of State licenses most
individual health care providers in Pennsylvania. Citizens can find out how to file complaints
against licensed medical professionals and information related to disciplinary action taken by t he
various health licensing boards by accessing the following links:
 For information on filing a complaint against
ag ainst a healthcare professional:|
 For information on disciplinary actions made against a healthcare professional :
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ACT 28
18 Pa.C.S.A. 2713
Neglect of Care Dependent Person
The Act is effective for conduct committed after September 6, 1995.
Who is protected by the Act?
Individuals, 18 years of age and above, who due to physical or cognitive disability or impairment,
require assistance to meet their needs for: food, shelter, clothing, personal care, or health care; and
who reside in either a nursing home, domicillary care home, community residential facility; or who
receive home health services in their residence; or who receive services from another who has an
obligation to care for the person for monetary consideration in either the care dependent person’ s
home or in one of the previously described facilities; or who receives services from an adult daily
living center.
Who is subject to prosecution under the Act?
Caretakers are subject to prosecution under the Act.
A caretaker is any person who owns,
erates, manages or is employed in a nursing home, personal care home, domiciliary care home,
community residential facility, adult daily living center, home health agency or home health service
provider whether licensed or unlicensed who has responsibility to care for a care dependent
person. A caretaker is also any person who has an obligation to care for a care -dependent
dependent person
in any described facility or the care-dependent’s
care dependent’s home and who receives monetary consideration
for the care.
A care-taker can be
e a natural support person,, a corporation, a partnership, an unincorporated
association or any other business entity. (This does not include governmental entities, boards or
What triggers prosecution?
(a) Intentionally, knowingly, or recklessly causing bodily injury or serious bodily injury to a care dependent person by failure to provide treatment.
(b) A caretaker may also be prosecuted if he intentionally or knowingly uses a physical
restraint or a chemical restraint or medication on a care-dependent
ent person, or isolates that
person, contrary to law or regulation with resulting bodily or serious bodily injury.
What must be observed in order to implement the provisions of the Act?
The care dependent person must have suffered either bodily injury or serious bodily injury.
Bodily injury is defined by the Crimes Code at Section 2301 as, “Impairment of physical condition or
substantial pain.”
Serious bodily injury is defined by the Crimes Code at Section 2301 as, “Bodily injury which creates
a substantial
tial risk
risk of
of death
death or
or which
which causes
causes serious,
serious, permanent
permanent disfigurement
disfigurement or
or protracted
protracted loss
loss or
impairment of the function of any bodily member or organ.”
Who must report?
Personnel of the Department of Aging, the Department of Health or the Department of Publ ic
Welfare when they have reasonable cause to believe that a care -dependent
dependent person
person residing
residing in
in aa
facility has suffered bodily injury or been unlawfully restrained in violation of the Act, shall report
immediately to the local law enforcement agency or to t he Office of the Attorney General.
The Departments must make these reports when they become aware of a care-dependent
dependent person’s
mistreatment in conducting regulatory or investigative responsibilities. (This would include
licensure visits and inspections base
on complaints).
Commonwealth of Pennsylvania
Office of Attorney General
Table of Contents
The Health Insurance Portability & Accountability Act
ct of 1996
DPW HIPAA Privacy Notice
This notice describes how medical information about you may be used and disclosed and how you
can get access to this information. Please review this information carefully.
The Department of Public Welfare (DPW) provides and pays for many types of health and social
services. We also determine persons' eligibility to receive those services. When we do these things,
we collect personal and health information about you and/or your family. The information we collect
about you and/or your family is private. We call this information "protected health information."
DPW does not use or disclose protected health information unless permitted or required by law.
DPW must follow new laws protecting the privacy of your protected health information. These new
laws are known as the Health Insurance Portability and Accountability Act (HIPAA) privacy rules.
When we do use or disclose protected health information, we will make every reasonable effort to
limit its use or disclosure to the minimum necessary to accomplish the intended purpose. This
notice explains your right to privacy of your protected health information and how we may use and
disclose that information. For more information on DPW privacy practices, or to receive another
copy of this notice, please contact us. For information on how to contact us, see the "Questions or
Complaints" section on page four of this notice.
We are required by law to follow the terms of this notice. We reserve the right to change this notice.
If we make an important change in our privacy policies or procedures, we will provide you with a
new privacy notice either by mail or in person.
What Is Protected Health Information?
Protected health information is information about you that relates to a past, present or future
physical or mental health condition, or treatment or payment for the treatment, that can be used to
identify you. This information includes any information, whether oral or recorded in any form, that is
created or received by DPW or persons or organizations that contract with DPW. This includes
electronic information and information in any other form or medium that could identify you, for
Your Name (or names of your children)
Telephone Number
DPW Case Number
Date of Birth
Social Security Number
Admission/Discharge Date
Medical Procedure Code
Diagnostic Code
Who Sees And Shares My Health Information?
DPW professionals (such as caseworkers and other county assistance office and program staff)
and people outside of DPW (such as employment and training contractors, health maintenance
organization (HMO) staff, nurses, doctors, therapists, social workers and administrators) may see
and use your health information to determine your eligibility for benefits, direct treatment or for other
permitted reasons. Sharing your health information may relate to services and benefits you had
before, receive now, or may receive later.
Why is My Protected Health Information Used and Disclosed by DPW?
There are different reasons why we may use or disclose your protected health information. The law
says that we may use or disclose information without your consent or authorization for the reasons
described below.
 For Treatment: We may use or disclose information so that you can receive medical
treatment or services. For example, we may disclose information your doctor, hospital or
therapist needs to know to give you quality care and to coordinate your treatment with
others helping with your care.
 For Payment: We may use or disclose information to pay for your treatment and other
services. For example, we may exchange information about you with your doctor, hospital,
nursing home, or another government agency to pay the bills for your treatment and
 For Operating Our Programs: We may use or disclose information in the course of our
ordinary business as we manage our various programs. For example, we may use your
health information to contact you to provide information about appointments, health-related
information and benefits and services. We may also review information we receive from
your doctor, hospital, nursing home and other health care providers to review how our
programs are working or to review the need for and quality of health care services provided
to you and/or your family.
 For Public Health Activities: We report public health information to other government
agencies concerning such things as contagious diseases, immunization information, and
tracking some diseases, such as cancer.
 For Law Enforcement Purposes and As Required by Legal Proceedings: We will
disclose information to the police or other law enforcement authorities as required by court
 For Government Programs: We may disclose information to a provider, government
agency or other organization that needs to know if you are enrolled in one of our programs
or receiving benefits under other programs such as the Workers' Compensation Program.
 For National Security: We may disclose information requested by the Federal government
when they are investigating something important to protect our country.
 For Public Health and Safety: We may disclose information to prevent serious threats to
health or safety of a person or the public.
 For Research: We may disclose information for permitted research purposes and to
develop reports. These reports do not identify specific people.
 For Coroners, Funeral Directors and Organ Donation: We may disclose information to a
coroner or medical examiner for identification purposes, cause of death determinations,
organ donation and related reasons. We may also disclose information to funeral directors
to carry out funeral-related duties.
 For Reasons Otherwise Required By Law: DPW may use or disclose your protected
health information to the extent that the use or disclosure is otherwise required by law. The
use or disclosure is made in compliance with the law and is limited to the requirements of
the law.
Do Other Laws Also Protect Certain Health Information About Me?
DPW also follows other federal and state laws that provide additional privacy protections for
the use and disclosure of information about you. For example, if we have HIV or substance
abuse information, we may not release it without special, signed written permission that
complies with the law. In some situations, the law also requires us to obtain written
permission before we use or release medical or mental health/mental retardation and
certain other information.
Can I Ask DPW to Use or Disclose My Health Information?
Sometimes, you may need or want to have your protected health information sent to
someone or somewhere outside of DPW for reasons other than treatment, payment or
operating our programs. If so, you may be asked to sign an Authorization Form for Use or
Disclosure of Personal Information allowing us to send your health care information.
The authorization form tells us what, where and to whom the information will be sent. You
may cancel or limit the amount of information sent at any time by letting us know in writing.
If you are younger than 18 years old and, by law, you are able to consent for your own
health care, then you will have control of that health information. You may ask to have your
health information sent to any person who is helping you with your health care.
See DPW’s Authorization for Use or Disclosure of Personal Information:
What Are My Rights Regarding My Health Information?
As a DPW client, you have the following rights regarding your protected health information
that we use and disclose:
 Right to See and Copy of Health Information: You have the right to see most of your
protected health information and to receive a copy of it. If you want copies of information
you have a right to see, you may be charged a small fee. However, you may not see or
receive a copy of: (1) psychotherapy notes; or (2) information that may not be released to
you under federal law.
If we deny your request for protected health information, we will provide you a written
explanation for the denial and your rights regarding the denial.
DPW does not receive or keep a file of all of your protected health information. Doctors,
hospitals, nursing homes and other health care providers (including an HMO, if you are
enrolled in one) may also have your protected health information. You also have a right to
your health information through your doctor or other provider who has these records.
 Right to Correct or Add Information: If you think some of the protected health
information we have is wrong, you may ask us in writing to correct or add new information.
You may ask us to send the corrected or new information to others who have received your
health information from us. In certain cases, we may deny your request to correct or add
information. If we deny your request, we will provide you a written explanation of why we
denied your request. We will also explain what you can do if you disagree with our
 Right to Receive a List of Disclosures: You have the right to receive a list of where your
protected health information has been sent, unless it was sent for purposes relating to
treatment, payment, operating our programs, or if the law says we are not required to add
the disclosure to the list. For example, the law does not require us to add to the list any
disclosures we may have made to you, to family or persons involved in your care, to others
you have authorized us to disclose to, or for information disclosed before April 14, 2003.
 Right to Request Restrictions on Use and Disclosure: You have the right to ask us to
restrict the use and disclosure of your protected health information. We may not be able to
agree to your request. In fact, in some situations, we are not permitted to restrict the use or
disclosure of the information. If we cannot comply with your request, we will tell you why.
 Right to Request Confidential Communication: You may ask us to communicate with
you in a certain way or at a certain location. For example, you may ask us to contact you
only by mail.
Who Should People Contact About Their Rights or to Ask Questions About This Notice?
You can contact the DPW HIPAA helpline, toll-free at 866-741-5719 to discuss your rights
or to ask questions about this notice. You can also contact your caseworker or health care
provider or write to DPW's Privacy Officer, 3rd Floor West, Health and Welfare Building, 7th
and Forster Streets, Harrisburg, PA 17120.
How Does Someone File a Complaint?
You may contact either office listed below if you want to file a complaint about how DPW
has used or disclosed information about you. There is no penalt y for filing a complaint.
Your benefits will not be affected or changed if you file a complaint. DPW and its
employees and contractors cannot and will not retaliate against you for filing a complaint.
Pennsylvania Department of Public Welfare :
Department of Public Welfare Privacy Officer
3rd Floor West, Health and Welfare Building
7th and Forster Streets
Harrisburg, PA 17120
Region III U.S. Department of Health & Human Services
Office for Civil Rights
150 S. Independence Mall West - Suite 372
Philadelphia, PA 19106-3499
Table of Contents
The Family Educational Rights and Privacy Act (FERPA)
The Family Educational Rights and Privacy Act (FERPA) (20 U.S.C. § 1232g; 34 CFR Part 99) is a
Federal law that protects the privacy of student education records. The law applies to all schools
that receive funds under an applicable program of the U.S. Department of Education.
FERPA gives parents certain rights with respect to their children's education records. These rights
ansfer to the student when he or she reaches the age of 18 or attends a school beyond the high
school level. Students to whom the rights have transferred are "eligible students."
 Parents or eligible students have the right to inspect and review the student's
student education
records maintained by the school. Schools are not required to provide copies of records
unless, for reasons such as great distance, it is impossible for parents or eligible students
to review the records. Schools may charge a fee for copies.
 Parents
arents or eligible students have the right to request that a school correct records which
they believe to be inaccurate or misleading. If the school decides not to amend the record,
the parent or eligible student then has the right to a formal hearing. Aft er the hearing, if the
school still decides not to amend the record, the parent or eligible student has the right to
place a statement with the record setting forth his or her view about the contested
 Generally, schools must have written permission
ssion from
from the
the parent
parent or
or eligible
eligible student
student in
in order
to release any information from a student's education record. However, FERPA allows
schools to disclose those records, without consent, to the following parties or under the
following conditions (34 CFR § 99.31):
School officials with legitimate educational interest;
Other schools to which a student is transferring;
Specified officials for audit or evaluation purposes;
Appropriate parties in connection with financial aid to a student;
Organizations conducting
conducting certain studies for or on behalf of the school;
Accrediting organizations;
To comply with a judicial order or lawfully issued subpoena;
Appropriate officials in cases of health and safety emergencies; and
State and local authorities, within a juvenile justice system, pursuant to specific
State law.
Schools may disclose, without consent, "directory" information such as a student's name, address,
telephone number, date and place of birth, honors and awards, and dates of attendance. However,
schools must tell
ell parents and eligible students about directory information and allow parents and
eligible students a reasonable amount of time to request that the school not disclose directory
information about them. Schools must notify parents and eligible students an nually of their rights
under FERPA. The actual means of notification (special letter, inclusion in a PTA bulletin, student
handbook, or newspaper article) is left to the discretion of each school.
For additional information or technical assistance, you may call (202) 260 -3887
3887 (voice). Individuals
who use TDD may call the Federal Information Relay Service at 1 -800-877-8339.
Or you may contact us at the following address:
Family Policy Compliance Office
U.S. Department of Education
400 Maryland Avenue, SW
Washington, D.C. 20202-5920
(Info taken from: )
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The Fair Housing Act
Title VIII of the Civil Rights Act of 1968 (Fair Housing Act), as amended, prohibits discrimination in
the sale, rental, and financing of dwellings, and in other housing -related
related transactions, based on
race, color, national origin, religion, sex, familial status (including children under the age of 18 living
with parents of legal custodians, pregnant women, and people securing custody of children under
the age of 18), and handicap (disability).
HUD has played a lead role in administering
dministering the
the Fair
Fair Housing
Housing Act
Act since
since its
its adoption
adoption in
in 1968.
1968. The
1988 amendments, however, have greatly increased the Department's enforcement role. First, the
newly protected classes have proven significant sources of new complaints. Second, HUD's
ed enforcement role took the Department beyond investigation and conciliation into the area
of mandatory enforcement.
What Housing Is Covered?
The Fair Housing Act covers most housing. In some circumstances, the Act exempts owner occupied buildings with no more than four units, single-family
single family housing sold or rented without the
use of a broker, and housing operated by organizations and private clubs that limit occupancy to
What Is Prohibited?
In the sale and rental
ental of Housing: No one may take any of the following actions based on race,
color, national origin, religion, sex, familial status or handicap:
Refuse to rent or sell housing
Refuse to negotiate for housing
Make housing unavailable
Deny a dwelling
Set different terms, conditions or privileges
for sale or rental of a dwelling
Provide different housing services or facilities
Falsely deny that housing is available for inspection, sale, or rental
For profit, persuade owners to sell or rent (blockbusting) or
Deny anyone access to or membership
me mbership in a facility or service (such as a multiple listing
service) related to the sale or rental of housing.
In Mortgage Lending: No one
one may
may take
take any
any of
of the
the following
following actions
actions based
based on
on race,
race, color,
color, national
origin, religion, sex, familial status or handicap (disability):
 Refuse to make a mortgage loan
 Refuse to provide information regarding loans
 Impose different terms or conditions on a loan, such as different interest rates, points, or
 Discriminate in appraising property
 Refuse to purchase a loan or
 Set different terms or conditions for purchasing a loan.
In Addition: It is illegal for anyone to:
 Threaten, coerce, intimidate or interfere with anyone exercising a fair housing right or
assisting others who exercise that right
 Advertise or make any statement that indicates a limitation or preference based on race,
color, national origin, religion, sex,
sex, familial
familial status,
status, or
or handicap.
handicap. This
This prohibition
prohibition against
discriminatory advertising applies to single-family
and owner-occupied
occupied housing that is
otherwise exempt from the Fair Housing Act.
Additional Protection if You Have a Disability
If you or someone associated with you:
 Have a physical or mental disability (including hearing, mobility and visual impairments,
chronic alcoholism, chronic mental illness, AIDS, AIDS Related Complex and mental
retardation) that substantially limits one or more major life activities
 Have a record of such a disability or
 Are regarded as having such a disability
Your landlord may not:
 Refuse to let you make reasonable modifications to your dwelling or common use areas, at
your expense, if necessary for the disabled person to use the housing. (Where reasonable,
the landlord may permit changes only if you agree to restore the property to its original
condition when you move.)
 Refuse to make reasonable accommodations in rules, policies, practices or services if
necessary for the disabled person to use the housing. Example:: A building with a "no pets"
policy must allow a visually impaired tenant to keep a guide dog.
However, housing need not be made available to a person who is a direct threat to the health or
safety of others or who currently uses illegal drugs.
For Further Information:
 The Fair Housing Act and HUD’s regulations contain detail and technical information. To
view them, click here:
 To locate the HUD office nearest you, click here:
(Info taken from: )
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Domiciliary Care Program
According to the Pennsylvania Department of Aging website, the Pennsylvania Domiciliary Care
Program is:
A supervised living arrangement in a home-like
home like environment for adults who are unable to live
alone because of demonstrated difficulties: (1) in accomplishing activities of daily living; (2) in
social or personal adjustment; or (3) resulting from disabilities. The Area Agency on Aging is
responsible for assessment and placement of residents in domiciliary care homes. They also
certify domiciliary care homes. Residents are eligible for a domiciliary care supplement
payment if they are eligible for Supplemental Security Income (SSI) or h
have an income less
than the combined federal/state payment for domiciliary care and are not related to the
provider. People who are not eligible for the supplement may reside in domiciliary care homes
as private pay residents.
The providers in the certified
ied domiciliary care homes provide room, board and personal care to these
placed individuals. They are then reimbursed for the room and board and other expenditures they make
while caring for these individuals.
For information on the Area Agency on Aging closest to you, click:|6641|
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Personal Care Homes
Personal Care Homes (PCHs) are residences that provide shelter, meals, supervision and
assistance with personal care tasks, typically for older people, or people with physical, behavioral
health, or cognitive disabilities who are unable to care for themselves but do not need nursing
home or medical care. While available services vary and are based on the individual needs of each
resident, services provided at a typical PCH include assistance with:
Walking/getting in and out of bed or chair
Toileting/bowel and bladder management
Personal hygiene
Arranging for and managing health care
Making/keeping doctor's appointments
Assisting with or administering medications
Positioning in bed or chair
Doing laundry
Arranging for transportation
Shopping/managing finances
Using the telephone/writing letters
Caring for possessions
Participating in social/recreational activities
Using prosthetics
Getting and caring for seasonal clothes
PCHs are inspected and licensed by the Pennsylvania Department of Public Welfare. They are
usually privately-owned, although some are operated by local governments or non-profit agencies.
In Pennsylvania, homes may be licensed to care for as few as four people and as many as several
Choosing the Right Personal Care Home
Checking to be sure that a PCH is licensed is the best way to ensure that the home receives
regular inspections of its physical site and service delivery. Other major factors to consider include:
 Location: Proximity to family, friends, shopping, public transportation, church, library and
other community resources.
 Size: Both large and small homes offer advantages depending on the potential resident's
lifestyle and preferences.
 Cost: Monthly fees and service charges can range from several hundred to several
thousand dollars.
Once major considerations are decided upon, it is advisable to visit several PCHs, during various
times of day, before deciding on a home. When visiting a PCH, it may be helpful to:
Visit several times at different times of day and night.
Visit as many rooms as possible.
Ask about staff training and qualifications.
Ask how long staff have worked at the home.
Watch and listen to how staff talk to and interact with residents. Do they treat residents with
 Read and ask questions about the home rules regarding smoking, pets, visitation and other
 Review the activities schedule and watch activities in progress.
Speak to people who live there
ther and to the staff and the administrator.
Read the menu and observe a meal.
Review resident contract provisions.
Ask about optional services and additional fees, if any.
PCHs are inspected and licensed by the Department of Public Welfare (Department) under the
requirements contained in 55 Pa.Code Chapter 2600. These regulations include requirements for
fire safety; staff training and education; nutrition and meal preparati on; resident health and medical
care; personal care service delivery; physical site conditions; and other factors effecting the health,
safety and well-being
being of residents. The Department inspects each PCH annually and conducts
investigations into complaintss and unusual incidents.
Where to Get Help:
Talk directly to the Personal Care Home Licensing Administrator, he/she is certified and
responsible for the operation of the Personal Care Home (PCH). Each PCH is required to have a
system in place to address your concern and develop a plan to lead to a reasonable and
acceptable solution. Each PCH is required to post the PCH Complaint Hotline number (1 -800-2545164) and the phone number for the local Area Agency on Aging ombudsman.
Find the PCH / Licensing Administrator by clicking on your county on the PCH Directory: 6647.htm
The Department of Public Welfare is always here to assist you. Assuring health and safety for
personal care residents is our responsibility. Complaints may be lodged:
 Directly with the PCH Field Offices:
 By using the Complaint Hotline 1-800-254-5164 where complaints are taken and forwarded
to the appropriate field office for investigation.
 By calling the local Area Agency on Aging. The phone number is in the blue pages of the
phone book and should be posted in a conspicuous place in each licensed facility. A
trained professional will either help resolve the issue or cont
act the proper authority, if
Complaints are received in the division and the field by telephone, mail, fax. Monday through
Friday, from 8:00 a.m.- 4:30 p.m., during normal business hours. If you have an emergency
during non-business
business hours, one of our staff will respond to your call.
For more information see the PCH Frequently Asked Questions :
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 When an individual reaches the age of 18, regardless of any functional limitations or
disabilities, s/he has the legal right to make decisions on his or her own behalf.
 Only a court, after legal proceedings,
proceeding , may judge an individual to be incapacitated and
appoint a guardian to make decisions for him or her.
 Appointment of a guardian for a person with limited or impaired mental functioning may in
some cases be unavoidable - in order to protect the individual’s well -being.
 Guardianship proceedings can be costly and involve legal procedures that may be
inconsistent with the goal of maximizing a person’s independence.
 Alternatives
ives to guardianship may prove equally effective at a substantially lower emotional
and financial cost.
 Before initiating guardianship proceedings, it is advisable to fully explore the alternative s.
 The majority of persons with disabilities live in the community with the assistance of their
families and/or a system of support services without the need for guardians.
For a handbook regarding Guardianship in Pennsylvania contact :
The Disability Rights Network (formerly Disability Law Practice & Pennsylvania
Pennsylvania Protection
Protection &
1-877-375-7139 (TTY)
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Representative Payee
What is a "representative payee"?
A representative payee is the person, agency, organization, or institution selected to receive and
manage benefits on behalf of an incapable beneficiary. This includes a parent who is receiving
benefits on behalf of his/her minor child. Some beneficiaries
benefi ciaries are not able to manage or direct the
management of their finances because of their youth or mental or physical impairment.
For such people, Congress provided for payment to be made through a representative payee who
receives and manages benefit payments of the beneficiary. When a representative payee is
appointed, the SSA field office provides the payee with complete informat ion about the use of
benefits; i.e., proper disbursement and how benefits should be conserved or invested and ensures
that the payee understands the fiduciary nature of the relationship, that benefits belong to the
beneficiary and are not the property of the
the payee. The payee is informed about the penalties for
using the benefits other than for the benefit of the beneficiary and that an annual accounting is
required. Supports Coordinators are not permitted to act as a representative payee for people they
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Assistive Technology Devices and Services
What is assistive technology?
Assistive technology (AT) means devices that help people with disabilities maintain or improve their
independence and participation at work, school, and in their communities. Assistive technology
also means the services that are needed to select the right devices; obtain, maintain, repair and
customize those devices, and learn how to use them. Assistive technology devices and services
have great potential to improve the ability of individuals with mental retardation to live more
independently and to participate in “Everyday Lives” of their choosing.
Some examples of how AT can help people with intellectual disabilities include the use of:
 A phone with photos for each key and with the phone numbers corresponding to the photo
number (including 9-1-1) pre-programmed in each key;
 A computer with speech output, also known as an augmentative and alternative
communication (AAC) device or “speech generating device” that can be used by a person
who doesn’t talk or who can’t be understood by everyone. AT for communication, both “low
tech” and “high tech”, can help improve an individual’s opportunities to express choice and
control, and to be self-determined;
 A reminder system that provides subtle alarms to cue the user that it is time to take
medication, change activities, etc.;
 A pictorial layout to help a worker know how many items need to be bagged, to know what
supplies she needs to complete a task, or to know what activity comes next;
 A specially adapted remote control so an individual can change channels on the TV without
having to distinguish among many small buttons or independently operate a boom box;
 Adapted utensils that are easier to grasp and manipulate;
 Fire alarms with flashing lights in addition to loud-sounding alarms; and many more.
Assistive technology may also include modifications to the home or worksite, such as special
lighting, lowered counters, automatic doors, and adapted controls for household appliances.
Assistive technology can also include modifications to vehicles that enable an individual to transfer
in and out and ride safely.
What is the role of the Supports Coordinator regarding AT?
The Supports Coordinator should facilitate the team’s consideration of AT during the ISP planning
process by raising the question, is there assistive technology that may be able to help the individual
accomplish the task or participate more in the activity? If the individual currently has AT, ask, how
is the AT working? Is it helping? If not, why not? Are additional services needed, such as more
training for direct support staff in how to use and maintain the device(s)? If AT is needed, the
Support Coordinator should make sure the ISP Individual Support Plan includes the necessary AT.
Supports Coordinators should be familiar with resources for learning about the AT that can help
individuals with mental retardation. Supports Coordinators may need to learn about how needed
devices and services can be procured or purchased.
Where can a Supports Coordinator get started learning more about AT devices and
services, including funding?
Pennsylvania’s Initiative on Assistive Technology (PIAT), the Commonwealth’s program under the
Assistive Technology Act (the “AT Act”) of 1998 as amended and a program of the Institute on
Disabilities, Pennsylvania’s University Center of Excellence in Developmental Disabilities is a good
place to start. PIAT has a toll-free information and referral line (800-204-7428 voice; 877-375-7139
[TTY]), and staff can suggest the kinds of AT that may help when an individual needs assistance in
performing an activityy and refer to qualified evaluators. In addition, PIAT can:
(1) Provide or arrange for device demonstrations to help with individuals
individuals with
with disabilities and
those who support them explore and compare devices, so they can make informed
decisions about AT;
(2) link individuals and providers to Pennsylvania’s Assistive Technology Lending Library,
a free resource for borrowing and trying out AT;
(3) offer individualized assistance for funding, to identify and procure funding for AT devices
and services;
(4) direct teams to programs
ograms where “previously owned” AT may be available at lower cost or
even at no cost; and
(5) Provide training for service providers to increase their AT -related
related knowledge and skills to
better support individuals with mental retardation.
Learn more about PIAT:
Reused and Exchanged Equipment Partnership (REEP)
For more information about donating or obtaining used devices, contact the Institute on Disabilities
at Temple University at 1-800-20
204-7428 or call the ODP HOTLINE at 1-888-565-9435.
Contact PIAT:
 Contact PIAT’s central office by phone:
7428 voice
voice or
or 877
877-375-7139 TTY.
 Email PIAT [email protected]
PIAT also has a network off eight subcontracted Assistive Technology Resource Centers providing
regional services throughout the Commonwealth.
Auxiliary Aids/Assistive Listening Devices
What Exactly Is an Assistive Listening Device?
Assistive Listening Devices (ALDs) are amplification instruments that are designed to be helpful in
specific, but not all listening situations. Hearing aids, which also amplify sound, are instruments that
can be used in all listening situations. But becaus e a hearing aid is an all-purpose
purpose instrument,
instrument, itit
may not be as successful in each and every specific application. An ALD can increase the loudness
of a desired sound (a radio or television, a public speaker, an actor or actress, someone talking in a
noisy place) without increasing the loudness of the background noises.
There are many ALDs available today, from sophisticated systems used in theaters and
auditoriums to small personal systems. People with all degrees and types of hearing loss -- even
people with normal hearing -- can
can benefit
benefit from
from ALDs.
ALDs. Some
Some assistive
assistive listening
listening devices
devices are
are used
with a hearing aid. Some can be used without a hearing aid.
Various kinds of assistive listening devices are:
A. Personal Listening Systems: All are designed to carry so und from the speaker (or other
source) directly to the listener and to minimize or eliminate environmental noises. Some of
these systems, such as auditory trainers, are designed for classroom or small group use.
Others, such as personal FM systems and personal
pers onal amplifiers, are especially helpful for
one conversations in places such as automobiles, meeting rooms, and restaurants.
Direct hard wire connections between a microphone
microphone and
and receiver
receiver or
or infrared
infrared transmission
systems usually ensure confidentiality.
confidentiali ty. FM systems are not confidential if someone else is
on the same frequency and within range.
B. TV Listening Systems: Designed for listening to TV, radio, or stereo without interference
from surrounding noise or the need to use very high volume. Models ar e available for use
with or without hearing aids or cochlear implants.
C. Direct Audio Input Hearing Aids: Hearing aids with audio input connections, can be
connected to TV, stereo, tape, and radio as well as to microphones, auditory trainers,
personal FM systems and other assistive devices. Some connections are direct hard wire
and others are
are wireless.
wireless. A
A vari
ety of adaptors, e.g., neckloop, boot, etc., are used
depending on consumer preference and hearing aid or cochlear implant specifications.
D. Cochlear implants: A cochlear implant is an electronic device designed to provide sound
information for adults and children who have a profound sensironeural hearing loss (nerve
deafness) in both ears and show [little or] no ability to understand speech through hearing
aids. (Source: Issues and Answers--written
Answers written by the Cochlear Corporation, as of January
E. Telephone
one Amplifying Devices: Many, but not all, standard telephone receivers come
with an amplifying coil. This coil is activated when a person whose hearing aid is in the "T"
position picks up the telephone receiver. These phones are called "hearing -aid
and can be procured from the telephone company. Not all hearing aids have a "T" switch
so make sure that the aid has one before asking for a hearing aid compatible phone. In
addition, specially designed telephone receivers amplify sound. Also, speci al amplifying
devices can be purchased that attach to a regular telephone receiver. Most of these
devices have volume control dials. Some are recommended only for use where all
household members have hearing loss. Some return to standard sound levels
atically and can be used in homes for people with or without hearing loss.
F. Auditorium Type Assistive Listening Systems: Many major auditoriums and theaters,
churches, synagogues, and other public places are equipped with special s ound systems
for people with hearing loss. Essentially, they consist of a transmitting system, which uses
one of a variety of methods to send sound signals to an individual receiver. (Sometimes
there is a rental fee for the receiver.) Some systems must be used with a hearing aid; other
systems can be used with or without a hearing aid.
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Medicare and Medical Assistance
Medicare is the federal health program that provides health insurance for people 65 years of age or
older, certain younger people with disabilities, and people with certain chronic diseases like end
stage renal disease. It is managed by the Centers for Medicare and Medicaid
edicaid Services (CMS).
Medicare covers some, but not all of the cost of health care for people who qualify. As of January 1,
2006 there are four parts to Medicare labeled A, B, C, and D. The details of what each of these
parts covers are outlined in the specific sections below.
Medicare is financed by payroll taxes paid by both employers and employees. Additional funding is
obtained through the payment of premiums by the beneficiaries. All four parts may have premiums
and/or co-pays
pays associated
associated with
with them
them.. For people who have both Medicare and Medicaid (see
section below), or are dually eligible, these premiums and co -pays
pays may be paid by Medicaid
(except for part D). For some services and plans there are also co -pays
pays associated with Medicare
covered services.
ces. These may also be covered by the Medicaid program for people with dual
Eligibility for Medicare is determined by the Social Security Administration (SSA). A basic booklet
about Medicare is available from the SSA at the link listed belo w. This includes some of the
eligibility criteria as well as some of the Medicare services. Individuals must apply to the SSA for
Medicare and questions about eligibility should be addressed to them. The link below also contains
that information.
The telephone number for the SSA is 1-800-772-1213 (TTY 1-800-325-0778)
Or visit:
To contact the Medicare program directly or find out more information about it you can review a
booklet called Medicare and You on the Medicare website at or call 1-800MEDICARE (1-800-633-4227
4227 or
or TTY
TTY 1-877-486-2048).
The website
website also
also has
has additional
information about Medicare.
Medicare Parts A, B, & C
Part A
Hospital insurance that helps pay for inpatient care in a hospital or skilled nursing facility
(following a hospital stay), some home health care and hospice care .
Part B
Medical insurance (Part B) that helps pay for doctors’ services and many other medical
services and supplies that are not covered by hospital insurance.
Part C (“Medicare Advantage”)
Medicare Advantage (Part C) plans are available in many areas. People with Medicare
Parts A and B can choose to receive all of their health care services through provider
organizations under Part C. There may be a premium. For people with dual eligibilit y in
Medicare and Medicaid, there are special needs managed care plans that began in
January of 2006.
Part D
Medicare Part D is the name of the new Prescription Drug Benefit Program offered to all
Medicare beneficiaries as of January 1, 2006. Medicare part D covers most, but not all
prescription drugs. The benefit is managed through entities called Prescription Drug Plans
(PDPs) that are approved by CMS. Each plan has a drug formulary that lists the drugs that
they cover. As well each plan has a premium, deductible and copays associated with it.
Payment for Medical Assistance Services
What people will pay is dependent on their income and where they live. Information about
plans including some tools to identify plans to meet people’s medication needs can be
found at the Medicare website: .This site also has
information about
the continued implementation of this new program.
For people who only have Medicare insurance the drug plan is optional, but would help
them cover the cost of drugs that previously would have been their responsibility to pay.
For people who are dually eligible. Medicaid will no longer cover those drugs covered by
Medicare and they must participate in order to have the cost of their drugs paid. For these
individuals there will be no premium if they enroll in a plan that meets the CMS benchmark
(see website for details or call Medicare). Co-pays and deductibles are based on income
and where people live. People living in a long term care setting (e.g. nursing home or
Intermediate Care Facility for the Mentally Retarded (ICF/MR)) generally have no co-pays
or premiums. The amount of the co-pay differs not only between plans, but also between
drugs (brand versus generic).
For people with dual eligibility Medicaid in Pennsylvania will continue to cover the nonMedicare part D drug classes that were covered in the past as well as the eligible over the
counter drugs.
Contact your local Department of Public Welfare County Assistance Office for more details
about the Medicaid Program.
Medical Assistance
Medicaid is a joint federal and state program that helps with medical costs for some people with low
incomes and limited resources. Medicaid programs vary from state to state. In Pennsylvania, the
Medicaid program has mandatory managed care in certain geographic areas and fee-for-service in
others. Behavioral health services are provided in a similar manner depending on where a person
lives. Medicaid covers medical services including hospitalization, outpatient visits, and medications,
although the specific coverage is not the same for each recipient. For people that qualify for both
Medicare and Medicaid, most health care costs are covered by Medicare.
Eligibility for Medicaid is based on age, income, and disability. Information about applying for
Medicaid in addition to other social services through the Department of Public Welfare in the
Commonwealth of Pennsylvania is available at the COMPASS website
Additionally, Medicaid offers funding for services other than health care. Waiver services, ICF/MR,
and nursing homes are funded through Medicaid, which is administered through the federal
Centers for Medicare and Medicaid Services (CMS).
For additional information about the Pennsylvania Medicaid program consult the website at:
Orr contact your local Department of Public W elfare County Assistance office:
More detailed information about Medicare coverage:
You can get more detailed information about what Medicare covers in the publication
”Medicare & You” (publication
ublication No. CMS-10050).. To get a copy, call the Medicare
toll-free number, 1-800-- MEDICARE (1-800-633-4227), or go to If you
are deaf or hard of hearing, you may call TTY 1
For people who don’t qualify for Medical Assistance:
Information on insurance programs for adults and children whose resources exclude them
from Medical
al Assistance can be found at:
 The Children’s Health Insurance Program (CHIP)
 adultBasic
Table of Contents
Pennsylvania State Departments
and Offices *
The Pennsylvania Department of Aging was created in 1978 by the state legislature after years of
intensive lobbying by individuals and groups representing our rapidly growing elderly population. It is
charged by the Older Americans Act and the Pennsylvania General Assembly with being an advocate for
the interests of older Pennsylvanians at all levels of government. Although one of the smallest
departments of state government in terms of staff, Aging is one of the largest in terms of budget and its
impact on the lives of Pennsylvanians. It is the focal point of state coordination and planning for elderly
initiatives in Pennsylvania to include long-term care programs for the frail and chronically ill. The
department utilizes federal and state dollars, but most of our budget comes from the Pennsylvania Lottery
The department oversees many services and benefits to older Pennsylvanians - most provided through
the 52 Area Agencies on Aging, created in the federal Older Americans Act and Pennsylvania's Act 70.
The mission of the Department of Aging is to enhance the quality of life of all older Pennsylvanians by
empowering the diverse community, the family and the individual.
Click to see how the Department of Aging is organized:
Area Agencies on Aging (AAAs)
Pennsylvania’s 52 Area Agencies on Aging (AAA) are the source of information for the issues and
concerns affecting older people and their caregivers. Specific services at each agency vary throughout
the state, but each agency offers a wide array of programs to help older Pennsylvanians and their families
get the help and information they need.
Find your local Area Agency on Aging contact information:
* NOTE: This is not an all- inclusive list of Pennsylvania Departments and offices .
Contact the Department of Aging:
Commonwealth of Pennsylvania, Department of Aging
555 Walnut Street, 5th Floor
Harrisburg, PA 17101-1919
Office: (717) 783-1550
Fax: (717) 783-6842
Email: [email protected]
Table of Contents
Office of Child Development and
Early Learning (OCDEL)
The Office of Child Development and Early Learning (OCDEL) promotes opportunities for all
Pennsylvania children and families by building systems and providing supports that help ensure
access to high quality child and family services. The goal of OCD is to create the opportunity for all
of the Commonwealth*s youngest children to benefit from strong early childhood programs, and to
create an approach that unifies and recognizes the important contributions of all of the necessary
partners - parents, schools, child care, early intervention, head start, libraries, and +community
organizations. OCD recognizes the impact that early childhood learning, education, and care have
on school readiness and academic success. The focus on effective prevention strategies a nd highquality early childhood programs will help Pennsylvania mitigate the social and education
disparities of young children that influence their ability to attain economic independence and self sufficiency as adult citizens.
The following bureaus within
hin the Office of Child Development and Early Learning can be found on
the web at:
Bureau of Certification Services
Responsible for the regulation of all child care centers
Bureau of Early Learning Services
Develops strategies to support public -private
private collaborations that provide significant early
learning opportunities for children.
Bureau of Subsidy Child Care Services
Manages the policy, program operation, and information system associated with subsidized
Child Care.
Infant and Toddler Early Intervention
Early intervention in Pennsylvania includes services and supports designed to help families with
n with developmental delays, between the ages of birth to the start of school -age. Early
intervention builds upon the natural learning occurring in those first few years. It is a process that
promotes collaboration among parents, service providers, and others
oth ers significantly involved with the
For children from birth to age three, the Pennsylvania Department of Public Welfare, Office of Child
Development operates the infant/toddler early intervention program. DPW/ODP provides early
intervention services through county/AE mental
mental health/mental
health/mental retardation
retardation programs.
Legislative and regulatory guidance is provided through I ndividuals with Disabilities
isabilities Education Act
(IDEA) Part C, Pennsylvania's
Pennsylvania's Act
Act 212,
212, the
the Early
Early Intervention
Intervention Services
Services System
System Act
Act of
of 1990,
1990, and
Department of Public Welfare regulations at chapter 4226.
School Early Intervention
For children from 3 years to the age of beginners, the Pennsylvania Department of Education,
Bureau of Special Education operates the preschool early intervention pro gram. PDE/BSE provides
early intervention services through MAWAs (Mutually Agreed Upon Written Arrangements).
MAWAs are typically made with Intermediate
Intermediate Units
Units or
or school
school districts.
districts. Legislative
Legislative and
and regulatory
guidance is provided through IDEA Part B, Pennsyl
vania's Act 212, the Early Intervention Services
System Act of 1990, Chapter 14, and the Basic Education Circulars related
related to
to early
early intervention.
To learn more, follow these links:
 Idea Part B:
 Idea Part C:
 Basic Education Circulars:
 Early intervention visit the Department of Public Welfare web site:
Office of Children, Youth
and Families (OCYF)
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Pennsylvania is a Commonwealth comprised of sixty
seven (67) counties that cover 44,817 square
miles with approximately 12.2 million residents. It is the sixth largest state in terms of population.
Philadelphia is the state’s largest metropolitan area. The five (5) counties that
that compose
compose the
surrounding metropolitan region around Philadelphia include 31% of the total statewide population.
Allegheny County is the second largest metropolitan area, which includes Pittsburgh and its
suburbs. The large differences in population si
ze and the large size of the state create the need for
both flexibility and consideration of regional and other differences in the child welfare and juvenile
justice systems. Pennsylvania has an increasingly diverse population with a steadily increasing
Spanish speaking population.
Pennsylvania's child welfare system is county
county-administered and state -supervised.
supervised. Child welfare and
juvenile justice services are organized, managed, and delivered by county Children and Youth
agencies and county Juvenile Probation offices, respectively. St affs
affs in
in the
the county
county agencies
agencies and
Juvenile Probation offices are county employees. The Office of Children Youth and Families
(OCYF), Bureau of County Children and Youth Programs is the Pennsylvania State agency for child
welfare and Title IV-E
E funded
funded juvenil
juvenile justice services.
Information on the following bureaus within the Office of Children, Youth and
Families can be viewed at this webpage :
ureau of Budget and Program Support (BBPS)
rovides support functions for OCYF including: budgeting; personnel; management of
federal grants and revenue; fulfillment of needs
based budget mandates; and
administrative, financial
ncial and operational support.
Bureau of Juvenile Justice Services (BJJS)
BJJS is responsible for the management, operations, program planning and oversight of all
the Youth Development Center (YCD)/Youth Forestry Camp facilities. These facilities are
designed to provide state
art treatment, care and custody services to Pennsylvania’s
most at-risk youth.
Bureau of Child Welfare Services
The Bureau of Child Welfare Services (CWS) is primarily responsible for monitoring the
delivery of services by county and private children and youth social service agencies
throughout the commonwealth. The bureau conducts these functions throug
through the four
OCYF Regional Offices and its Division of Licensing.
Learn more
re about Child Welfare Services:
Bureau of Policy and Program Development
The Bureau of Policy and Program Development develops and publishes program
procedures and directives governing child welfare activities in the Commonwealth related
to: the administration of public and private c hildren and youth agencies; foster family care;
adoption; child residential and day treatment programs; and Child Protective Services.
The ChildLine Section operates a toll-free
toll free hotline for reporting child abuse known as
ChildLine. This hotline
line is for use by the public or mandated reporters, counseling and
referring callers to appropriate agencies for assistance. It refers reports of abuse to the
appropriate office for immediate investigation, including county children and youth agencies
or OCYF Regional Offices. It maintains a system of child abuse data that is current and
organized for use in required reporting documents, such as the annual Child Abuse Report,
and special child abuse studies. ChildLine processes over 100,000 calls per year.
Toll Free: 800--932-0313
TDD (hearing impaired) 866
Office of Children, Youth and Families
Health & Welfare Building
Room 131, PO Box 2675
Harrisburg, PA 17105-2675
County Children and Youth Directory
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Office of Developmental
Programs (ODP)
The mission of the Office of Developmental Programs (ODP - formerly the Office of Mental
Retardation) is to provide individuals with mental retardation, autism, and their families the services
and supports they need and the opportunity to make real choices about living, working and options
for social activities to enable them to live in and participate fully in the lif e of their communities.
Following are bureaus within ODP:
Bureau of Autism Services
About the Bureau of Autism Services
In recent years, the number of individuals in Pennsylvania diagnosed with Autism Spectrum
Disorder (ASD) has risen dramatically. State and local agencies responsible for providing care to
this population - especially the special education and the Mental Health/Mental Retardation
systems - struggled to meet their needs, but lacked appropriate resources, planning and vision. A
udy from
the federal Centers
Disease Control
( ) indicates that one in 150 chi ldren have some form of
In response to these challenges,
ges, Estelle B. Richman, then the newly appointed Pennsylvania
Secretary of Public Welfare, created the Autism Task Force in 2003. This Task Force, comprised of
over 250 family members of people living with autism, service providers, educators, administrat ors
and researchers, was charged with developing a plan for a new system for individuals living with
autism and their families that would make Pennsylvania a national model of excellence in autism
service delivery.
One of the most important strategic goals
of Pennsylvania’s Autism Task Force, which published its
final report in 2004 ( ) was to
create a program office within
hin the Pennsylvania Department of Public Welfare to focus on the
challenges faced by individuals with developmental disabilities. The creation of the Office of Autism
Affairs, which subsequently became the Bureau of Autism Services within the Office of
velopmental Programs, has helped the Department of Public Welfare take great strides towards
this goal.
The objectives of the Bureau of Autism Services for 2006 – 2007 address the need to establish
statewide diagnostic and assessment standards, promote innovative treatment practices and to
begin the process of training individuals at every level in the system to meet the lifetime needs of
Pennsylvanians living with autism.
Adult Community Autism Program (ACAP)
The Adult Community Autism Program (ACAP) is the Commonwealth’s delivery alternative to the
service system for persons 21 years of age or older with Autism Spectrum Disorders (ASD).
This service delivery model is designed to serve those individuals currently living in the community
using 16 or fewer hours of paid or unpaid services. ACAP ’s goal is to provide access to a
comprehensive set of services delivered and managed by a network of organizations that
understand the needs Medical
edical Assistance recipients with ASD age 21 or older and their
the families.
These services include physician services, facility-based
services, community -based
based supports and
behavioral health services.
Contact the Bureau of Autism Services: call 717-265-7760
7760 or toll free 866-497-6898.
To learn more, visit the Bureau of Autism’s webpage:
Other Bureaus within ODP: Information on the following bureaus within the O ffice
ice Developmental
Programs can be viewed at this webpage:
Bureau of Mental Retardation Program Operations
The Bureau of Mental Retardation Program Operations directs the fiscal and program
planning, management and oversight of all mental retardation program operations including
state operated facilities, community mental retardation programs and early interv ention
Bureau of Mental Retardation Program Support
The Bureau of Mental Retardation Program Support develops the state and federal funding
for needed services, prepares budgets and budget revisions, county/AE allocations, federal
re reports, directs the county/AE plan process, provides fiscal management of the
private ICF/MR program and Targeted Services Management (TSM) program, manages
the design maintenance and implementation of the DPW Home and Community Services
Information System (HCSIS), determines and prioritizes information system needs.
Bureau of Quality Improvement and Policy
The Bureau of Quality Improvement and Policy directs the quality management program for
Pennsylvania’s mental retardation service system, develops
dev elops and publishes policies and
regulations, develops applications for federal funding and evaluates the effectiveness of the
mental retardation programs in meeting goals and providing quality services.
To learn more about services available through he Office of Developmental Programs,
click this link: Topics
Help with Assistive Technology
What is Mental Retardation?
Dictionary of Terms Used in Mental Retardation Services
Mental Retardation Services and Supports (including Priority of Urgency of Need for
Services/PUNS information)
 Get Help with Support Services
 Paying for Services throug
through Medicaid Waiver Programs
 Links to Organizations Providing Mental Retardation Services and Supports
 The Advisory Committee for Mental Health and Mental Retardation
The Committee advises the Governor, Secretary of Public Welfare and the Deputy
taries for the Office of Mental Health and Substance Abuse Services and the
Office of Developmental Programs
 Independent Monitoring for Quality (IM4Q)
Independent Monitoring for Quality, also known as IM4Q, is a system of measuring
quality that relies on information gathered from individuals receiving services and
their families by people in the community who are independent of the services
being delivered.
 Intermediate Care Facilities for the Mentally Retarded (ICF/MR)
F/MR is
is aa funding
funding stream
stream emanating
emanating from
from Title
Title XIX
XIX of
of the
the Social
Social Security
Security Act
Act or
Medicaid. ICF/MR is financed by Federal and State funds. ICF/MR is specifically
designed to provide "active treatment services" to individuals with a diagnosis of
mental retardation with related conditions.
 Office of Developmental Programs Planning Advisory Committee
The Planning Advisory Committee was created in 1987 by the Office of
Developmental Programs (formerly the Office of Mental Retardation) to advise the
puty Secretary and the executive staff of the Office of Developmental Programs
on issues of planning, policy and program development. Participation on the
Planning Advisory Committee also provides members with the opportunity to learn
about major develo
pments and to keep the members of their organizations
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Pennsylvania Department of
Education (PDE)
Following passage and signing of the Free School Law on April 1, 1834, the Secretary of the
Commonwealth acted as head of the Common School System until 1837. In that year a separate
Department of Schools was created with a Superintendent of Common Schools as its chief officer.
In 1873, the title was changed to Superintendent of Public Instruction, and greater responsibilities
were assigned to that official and to the Department. In 1969, the name of the Department of Public
Instruction was changed to the Department of Education, with the title of Superintendent of Public
Instruction changed to the Secretary of Education.
The mission of the Pennsylvania Department of Education is to assist the General Assembly, the
Governor, the Secretary of Education and Pennsylvania educators in providing for the maintenance
and support of a thorough and efficient system of education.
In carrying out this mission, the Department of Education will:
 Develop and administer educational policies to improve the quality of education in
 Conduct programs to assess the achievement of basic and higher education goals
established by the General Assembly, the Governor and the state Board of Education.
 Provide advice and recommendations about education to the General Assembly, the
Governor and the state Board of Education.
 Administer the education laws enacted by the General Assembly and approved by the
governor as well as the federal government.
 Administer the regulations of the State Board of Education and the federal government, as
well as standards established by the Secretary of Education.
 Cooperate in the development of master plans for basic and higher education and
administer those plans.
 Manage a system of pre-service education and in-service professional development to
ensure high quality personnel in pre-school, elementary and secondary education.
 Plan and administer policies for the state library, public libraries, school libraries and
academic libraries.
 Plan and administer vocational training and retraining programs, in cooperation with the
state Board for Vocational Education and other state agencies.
 Develop and administer state policies concerned with public and nonpublic elementary,
secondary and higher education
 Compile educational research and/or development projects and use findings to make
informed decisions and policies
 Develop and administer joint educational programs with other state, federal, local and
private agencies
 Provide leadership in assuring equal education opportunity
 Collect and disseminate information about education in Pennsylvania
School to Adult Life Transition
Transition is:
A coordinated set of activities for a student that:
 Is designed within an outcome-oriented
outcome oriented process, which promotes movement from school to
school activities. Post-school
activities include post-secondary
secondary education, vocational
training,, integrated employment, continuing and adult education, adult services,
independent living and community participation.
 Is based on the individual student’s needs, taking into account the student’s preferences
and interests.
 Includes instruction,, related services, community experiences, the development of
employment and other post-school
post school adult living objectives and when appropriate, acquisition
of daily living skills and functional vocational evaluation.
For additional information, contact
contact the
the Pennsylvania Training and Technical Assistance
ssistance Network
Harrisburg Office
717-541-4960 or 800-360-7282
7282 (PA only)
King of Prussia Office
610-265-7321 or 800-441-3215
3215 (PA only)
Pittsburgh Office
412-826-2336 or 800-446-5607
5607 (PA only)
Pennsylvania Training and Technical Assistance Network
Pennsylvania Department of Education
Transition Map
A Roadmap from school to the future for students age 14 to 21 with developmental delay residing in
Pennsylvania and receiving special education services.This is the best -educated
educated generation of
teenagers with special needs to grow up in America.
Educated from
om birth, they have had more inclusive social and educational opportunities, and they
have broken down more walls of segregated classrooms than any previous generation of young
men and women with developmental disabilities.
They are confident that they will reside, work, and enjoy social lives in their community. And their
parents expect that dream to become reality.
But the transition from school to adult life is a winding road that many families who have a child with
mental retardation or developmental disabilities find difficult to navigate. "Where
"Where Do
Do We
We Go
Go From
Here" is
is your
your map
map to
to successful
successful transition
transition planning.
A virtual community of support for a successful transition from school to the future.
he Department also cooperates with independent groups concerned with public education
including the State Tax Equalization Board, State Public School Building Authority, Pennsylvania
Higher Education Assistance
tance Agency, Pennsylvania Public School Employees Retirement Board
and the Pennsylvania Public Television Network Commission.
Pennsylvania Department of Education
333 Market Street
Harrisburg, PA 17126
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Department of Health
The Department of Health was created by the Act of April 27, 1905, P.L. 312, and modified
subsequently through the Administrative Code of 1929. Of recent significance, Act 87 of July 2,
1996, P.L. 518, removed the requirement that the Secretary be a physician; the Act also
established the new position of Physician General.
The Department's mission is to promote healthy lifestyles, p
revent injury and disease, and to
assure the safe delivery of quality health care for all Commonwealth citizens.
The Department is responsible for planning and coordinating health resources throughout the
Commonwealth. It licenses and regulates a variety o ff health
health facilities,
facilities, such
such as
as hospitals,
hospitals, nursing
homes, ambulatory surgical facilities and other in -patient and out-patient
patient facilities. In addition, the
Department supports outreach, education, prevention and treatment services across a variety of
program areas.
reas. Grants and subsidies to community
based groups are used to provide essential
services to the Commonwealth's citizens including programs for women and children, nutrition,
immunization, diagnosis and treatment of certain blood and communicable disease s, cancer control
and prevention, and the prevention and treatment of substance abuse.
The Department is redirecting funding and programmatic activities toward outcomes -based
performance standards. Through its contracting and grants process, it strives to create durable
based partnerships that strengthen healthy families and individuals in their local
communities while enhancing the delivery of health care. Systems planning is dependent on input
from consumers, providers and industry stakeholders
stakeholders.. The ultimate goal of the Department is to
ensure access to health care while assuring quality of care.
The Department Of Health is committed to serving you better. Please visit the PA Department of
Health website ( ) or call 1-877
Mailing Address:
Pennsylvania Department of Health
Health and Welfare Building
7th & Forester Streets
Harrisburg, PA 17120
Click here to view the full PA Department of Health telephone directory :
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Office of Income Maintenance (OIM)
The Office of Income Maintenance is responsible for the administration of the Temporary
Assistance for Needy Families (TANF) cash assistance program, Medicaid/Medical Assistance
(MA), food stamps, child support, home heating assistance
stance (LIHEAP program) and employment
and training services. These programs are provided through County Assistance Offices, which are
located across Pennsylvania.
Other Bureaus within OIM: Information
Information on
on the
the following
following bureaus
bureaus within
within the
the Office
Office Developmen
Developmen tal
Programs can be viewed at this webpage:
Topics include:
Bureau of Child Support Enforcement
Describes the programs administered in the Office of Income Maintenance Bureau of Child
Support Enforcement.
Bureau of Employment and Training
Describes the programs and benefits administered by the Office of Income Maintenance,
Bureau of Employment and Training Programs.
Bureau of Operations
Describes the programs and benefits administered by the Office of Income Maintenance
Bureau of Operations.
Bureau of Policy
Describes the duties and responsibilities of the Office of Income Maintenance, Bureau of
Bureau of Program Evaluation
Describes the duties and responsibilities of the Office of Income Maintenance, Bureau of
Program Evaluation.
Bureau of Program Support
Describes the duties and responsibilities of the Office of Incom e Maintenance, Bureau of
Program Support.
County Assistance Office Contact Information
Addresses and phone numbers of County
Assistance Offices (CAOs):
Frequently Asked Questions (FAQ)
FAQ regarding public assistance programs including cash assistance, food stamps,
Medicaid and energy assistance:
Rent Rebate
The Taxpayer Relief Act helps seniors and disabled residents remain in their homes and make
ends meet through property tax relief and rental rebates. Claimants or spouses 65 years of age or
older; widows or widowers 50 years of age or older; and the perma nently disabled 18 years of age
or older may qualify for the Property Tax/Rent Rebate Program .
Income eligibility levelss and maximum rebates, as well as other information, is available at the
website below:|
Low Income Home Energy Assistance Program (LIHEAP)
The Pennsylvania Low Income Home Energy Assista nce Program (LIHEAP) helps low income
people pay their heating bills through home heating energy assistance grants and crisis grants. A
person does not need to have an unpaid bill to receive home heating energy assistance. People
can receive this money without
hout being in the Cash Assistance program. No lien is placed on a
person’s property if they receive this help.
For information about LIHEAP, including local contacts and eligibility guidelines:
 Visit
 Call the LIHEAP hotline at 1-866-857-7095,, Monday through Friday (individuals with
hearing impairments may call the TDD number at 1 -800-451-5886)
Contact your your local County Assistance
Assistance: Office:
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Office of Long Term Living
(formerly, “Office of Social Programs” or OSP)
The majority of people will need assistance with daily activities, such as bathing, dressing and meal
preparation, at some point in their lives, whether due to aging, injury, illness or disability. Knowing
what types of services are needed, available and how to obtain them is not easy. Whether you
need help now or are exploring future options for yourself or a loved one, services and supports
available through the Pennsylvania Office of Long Term Living can assist you.
The goal of this Web site is to provide you easy access to information about the services and
supports available, across Pennsylvania, thr ough the Office of Long Term Living. Helpful
information is available for those who provide care and for people interested in planning for future
The Office of Long Term Living helps Pennsylvanians find answers to these questions:
What types of services and supports are available?
Where can you find providers or caregivers?
How do I become a provider of long term living services?
How will you pay for the services?
Follow these links to learn more
ore about…
Long Term Living Services:
Support Services Waivers
State Supplementary Payment (SSP)
Medical Assistance/Medicaid for Older People and People with Disabilities
Medicare Official Web Site
Services for People with Disabilities:
Developmental Disabilities Council
The Council’s Vision and Mission focus on the creation of a Commonwealth in
which all people are linked together in mutuality and int erdependence. Our mission
is threefold: to empower people with disabilities; to ensure access to goods and
services, and to encourage freely given and unpaid relationships between
Pennsylvanians with and without disabilities.
Visit the Pennsylvania
ania Developmental Disabilities Council website:
Harrisburg Office:
Room 569, Forum Building,
Commonwealth Avenue
Harrisburg, PA 17120
Phone: 717-787-6057
Fax: 717-772-0738
Pittsburgh Office:
8500 Brooktree Road, Suite 100
Wexford, PA 15090
Phone: 724-933-1655
Fax: 724- 934-1344
The Community Services Program for Persons with Physical Disabilities (CSPPPD)
The Community Services Program for Persons with Physical Disabilities (CSPPPD)
provides services to people with severe physical disabilities. Individuals must have an other
related condition, physical disability, or traumatic brain injury. Individuals must experience
at least three substantial functional limitations in the areas of mobility, communication, self care, learning, self-direction,
direction, or capacity for independent liv
The CSPPPD includes:
the OBRA Waiver
Independence Waiver
CommCare Waiver
Community Choice and
Specialized Services
Follow this link to learn more about how to enroll, provider information, and program requirements.
CommCare Waiver
The COMMCARE Waiver is a Home and Community-Based program developed for
Individuals with a medically determined diagnosis of traumatic brain injury (TBI.)
COMMCARE prevents the institutionalization of individuals with TBI and helps them remain
Independent as possible.
Traumatic brain injury or TBI is defined as a sudden insult to the brain or its coverings,
not a degenerative, congenital or post-operative nature, which is expected to last
Community Choice
Community Choice is a new way to help older adults and people with disabilities of all ages
to enroll in Home and Community Based Services (HCBS) within three days if needed. The
Community Choice process allows people to stay in their homes and avoid going into Long
Term Care Facilities (LTCF) by giving them faster access to services. Community Choice is
also available to people who are moving from Long Term Care Facilities back into their
communities. Currently, Community Choice is available only in the following Pennsylvania
counties: Allegheny, Chester, Delaware, Cumberland, Dauphin, Fayette, Greene,
Lancaster, Montgomery, Perry, Philadelphia and Washington.
Independence Waiver
The Independence Waiver is a Home and Community-Based waiver program that
provides services to persons with physical disabilities to allow them to live in the
community and remain as independent as possible.
OBRA Waiver
The OBRA Waiver is a Home and Community-Based waiver program that
provides services to people with developmental physical disabilities to
allow them to live in the community and remain as independent as possible.
Specialized Services
Specialized Services available under the Community Services Program for
Persons with Physical Disability (CSPPPD) consist of training, encouragement, and
other tangible supports, which enable a person to acquire, regain, improve, or
maximize their skills and abilities.
Specialized services help nursing facility residents live more productive
satisfying lives as close to home as possible.
Contact Information: Office of Long Term Living
Office of Long Term living, DPW
PO Box 2675
Harrisburg, PA 17105-2675
Fax: 717-7834511
TTY: 717-705-2930
You may also call the toll-free Long Term Care Helpline at 1-866-286-3636. Counselors will
be able to provide information and refer you to the local agencies that can provide
assistance with planning and arranging long term care and services
Visit: Fifth floor, Room 533 of the Health & Welfare Building (corner of 7th St. & Forster St.) in
Harrisburg, PA.
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Office of Medical Assistance
Programs (OMAP)
The Office of Medical Assistance Programs (OMAP) administers the joint state/federal Medical
Assistance (also known as Medicaid) program that purchases health care for close to 1.9 million
Pennsylvania residents. Local County Assistance Offices determine eligibility for Medical
Medical Assistance purchases services through contracts with managed -care
care organizations and
under an indemnity, or traditional, fee-for-service
service system. Facility based services are reimbursed
under case-mix for long-term
term care for the elderly, while other fa cilities
cilities are
are paid
paid on
on aa prospective,
prospective, or
cost, basis. A medical provider is required to enroll in the program and must meet applicable
national, federal and state licensing and credential requirements.
The Office of Medical Assistance Programs is also res ponsible
ponsible for
for enrolling
enrolling providers,
providers, processing
provider claims, establishing rates and fees, contracting and monitoring of managed care
organizations, and detecting and deterring provider and recipient fraud and abuse.
Our mission is to provide responsive, timely, and quality service to consumers and stakeholders
(families, providers, advocates, employees and business partners).
We will recognize the needs of consumers and stakeholders through the use of open and public
input and feedback processes. We will
will be prudent and efficient in our use of public resources. We
will seek and adopt creative solutions to improve performance. We will value different perspectives,
and appreciate the contributions of all consumers, stakeholders and employees.
Resources on the OMAP website
The following services can be viewed on the web at this link:
How to Apply for Medical Assistance
Including links to COMPASS, and applications for various services in both English and
Physical Health Options and Mental Health/Substance Abuse Services Options
Information on HealthChoices and Fee-for-service
More Information on Health Care Services, including:
 Dental Services
 Breast and Cervical Cancer Screening and Treatment
 Healthy Beginnings for Pregnant Women
 Mental Health/Behavioral Health Services
 Medicare Part D Drug Coverage Information
 AIDS/HIV Information and Services
 Family Planning Services
 Help with Medical Appointments if your English is Limited
 Substance Abuse Services
 Influenza Pandemic Preparation
 Home and Community Based Services
 Long Term Care Services
More Information for Individuals
Individual and Families on Benefits
Including age and condition
condition-specific information
More Information for Individuals and Families on How Medical Assistance Works
Including using the ACCESS card, terms, HealthChoices, and more
General Information about Health Care/Medical Assistance in Pennsylvania
Including reports, communications, and the medical assistance handbook
See"What's New in OMAP” by visiting:
Information on insurance programs for adults and children whose resources exclude them
from Medical Assistance can be found at:
 The Children’s Health Insurance Program (CHIP)
 adultBasic
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Medical Assistance Transportation Program (MATP)
Pennsylvania's Medical Assistance Transportation Program (MATP) provides transportation to
medical services for Medical Assistance (MA) consumers who do not have other transportation
available to them. These transportation services are provided through cou nty governments.
Click this link to learn more about the topics listed below: esStakeholders/MATP/
 General Information
 MATP County-by-county
county phone Numbers
 MATP Eligibility - Quick Reference Guide
 Philadelphia MATP:
 Eligibility Requirements/PA State Code
 MATP Instructions and Requirements:
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Office of Mental Health and Substance
Abuse Services (OMSHAS)
Every county has a Mental Health/Mental Retardation (MH/MR) Office. Some smaller counties, or
those with smaller populations, might join with another county, but your county will have an
identified contact for MH/MR services. Always begin your search for s ervices at your local MH/MR
office. You can also find services in your county by using the Human Services Provider Online
icesPrograms/ChildCareEarlyEd/003670755.aspx in the
blue government pages of your phone book under "County Government."
After making an appointment, you will take part in an intake. A social worker will look at your needs
and refer you to an appropriate service provider to help you meet your needs, such as your local
County Assistance Office (CAO) or the local Social Security Administration (SSA) Office.
To learn more about the following topics, click this link:
Finding Services Near You
Homeless Assistance Program
Victim Notification Program
A Call for Change:
nge: Toward a Recovery
Oriented Mental Health Service System for Adults
Act 21: Helping Youth Offenders Receiving Treatment Transition to Adulthood
Act 21 Forms
Act 21 Frequently Asked Questions
Community Support Program (CSP)
Computer Theft Informatio
County Drug and Alcohol Agencies
County Mental Health Plan Guidelines: FY 2007
County Mental Health System
Student Assistance Program
Substance Abuse Services
There are a wide variety of substance/drug and alcohol abuse services available to child ren and
adults in Pennsylvania. Community substance abuse programs are administered through county
program offices called Single County Authorities (SCAs.) Find the one closest to you at:
The county SCA determines a person's eligibility for service funding, assesses the need for
treatment or other services, and makes referrals to appropriate programs to match treatment and/or
service needs.
Payment for Drug and Alcohol Services
The cost of these services will vary depending upon the type of service. Pennsylvania's Medical
Assistance Program, either through a managed care organization or the traditional fee -for-service
system, pays for many of these services for eligible individuals. Peopl
e who use services, but are
not on Medical Assistance and are without access to other insurance, will be assessed for their
ability to pay for services by the county SCA. If you need further assistance you may be referred to
your local County Assistance Of
fice (CAO), or the local Social Security Administration (SSA) Office.
Click here to view the OMHSAS Service
Service Area
Area Plan
Plan Resource
Resource and
and Networking
Networking Guide
Guide : -NetworkGuide.pdf
For a copy of the Office of Mental Health and Subst
Substance Abuse Services Access Manual,
call 717-772-7975.
Resources and information related to mental health and substance use disorders can be
found at:
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Department of Public Welfare (DPW)
The mission of the Department of Public Welfare is to:
Promote, improve and sustain the quality of family life; break the cycle of dependency; promote
respect for employees; protect and serve Pennsylvania’s most vulnerable citizens; and manage our
resources effectively.
The Department of Public Welfare is charged with numerous program areas that include all
children, youth and family concerns, mental health, mental retardation, income maintenance,
medical assistance and social program issues in the Commonwealth. They also license assisted
living facilities and day care centers.
Offices within DPW are listed below. You can access each office’s information on the web
Bureau of Administrative Services
Describes the duties and responsibilities of the Office of Administration, Bureau of Administrative
Bureau of Equal Opportunity
Describes the duties and responsibilities of the Office of Administration, Bureau of Equal
Bureau of Financial Operations
Describes the duties and responsibilities of the Office of Administration, Bureau of Financial
Bureau of Hearings and Appeals
The Bureau of Hearings and Appeals (BHA) is the Departmental entity charged with conducting
Administrative hearings and timely adjudicating appeals which are filed in accordance with State
and Federal regulations. The Bureau consists of a headquarters location in Harrisburg, two regional
offices and two satellite locations. BHA's jurisdiction is vast. It covers nearly 280 different areas,
including the denial, suspension, termination, or reduction of any DPW issued benefit (cash
assistance, medical assistance, food stamps, social services, durable equipment, etc.). BHA is also
responsible for adjudicating appeals regarding child abuse expunction, day care licensure, medical
assistance provider enrollment, medical provider audit findings, injured DPW employees (Act 534
benefits), Department of Aging actions, and nursing home intervention requests, etc. Client rights
are explained on notices used by DPW. If you require additional information, contact your local
DPW agency office or contact BHA.
Recipient Appeals
Recipient appeals are filed by applicants or recipients of cash assistance, medical
assistance, food stamps and social services and are governed by regulations at 55 Pa.
Code Chapter 275 and 1 Pa. Code Chapters 30,33 & 35 may also apply. Appellants may
choose either a telephone or a face-to-face hearing. Face-to-face hearings are held in the
BHA location based on the appellant's county of residence.
Non-Recipient Appeals
Medical providers or other persons or agencies that are not applicants or recipients of
welfare benefits file non-recipient appeals. Types of non- recipient appeals include appeals
from medical assistance providers (Diagnosis Related Group, Concurrent Hospital
Review and Retrospective Inpatient Provider Denial). Typically, the issue under appeal for
provider appeals is denial of payment for services rendered.
Denials are made for various reasons ranging from improper billing procedures to
administration of medically unnecessary services. These hearings are governed by 1 Pa. Code,
Chapters 30, 33, & 35. Approximately 90% of these hearings are held via telephone.
Formal Appeals - Formal appeals are also governed by the regulations at 1 Pa. Code,
Chapters 31, 33, & 35, but are generally more complex than non-recipient appeals. Issues
range from Child Abuse Expunctions to Medical Assistance Provider audit filings to
licensure issues. Hearings are normally held face-to-face with a stenographer present to record
the proceedings. These hearings take on a true court-like atmosphere. The Formal
PreHearing Appeals Unit, operating in the Harrisburg Headquarters Office, is responsible
processing of these appeals and scheduling hearings for them.
The procedures followed by the Formal Appeals Unit are set forth in “Standing Practice Orders"
and are available for review online at:
Learn more about the recipient appeals process:
Bureau of Human Resources Describes the duties and responsibilities of the Office of Administration,
Bureau of Human Resources.
Bureau of Information Systems Describes the duties and responsibilities of the Office of Administration,
Bureau of Information Systems.
Pennhurst Advocacy Services
Within the DPW Bureau of Administrative Services is the Pennhurst Advocacy Services. Advocates
meet/communicate with Pennhurst class members and/or their support teams to ensure that their rights
are protected and meet with county agencies and support providers to ensure that rights are maintained.
Other resources available on the DPW webpage:
About DPW:
DPW services:
Homeless Assistance Program
Integrated Children's Services Plan
Legal Services in Pennsylvania
Domestic Violence Crisis and Prevention
Rape Crisis and Prevention
Burial and Cremation Assistance
Estate Recovery Program
Human Services Provider Online Directory
Victim Notification Program
Family Planning Services
Alternatives to Abortion Program
Telephone Assistance Programs
The Human Services Provider Online Directory:
DPW hotlines:
DPW HelpLine:
Mailing Address
Health & Welfare Building
Room 515, PO Box 2675
Harrisburg, PA 17105-2675
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Office of Vocational Rehabilitation
The Pennsylvania Office of Vocational Rehabilitation is a division of the Pennsylvania Department of
Labor and Industry, providing services to persons with disabilities to prepare for, start, and maintain
employment. Vocational Rehabilitation is one of the oldest programs in which state funds are matched
with federal funds. In 1920 Congress passed the Civilian Vocational Rehabilitatio n Act encouraging states
to provide rehabilitation services to disabled veterans. Subsequent legislation has greatly expanded the
available services and those who can receive them. The Vocational Rehabilitation program now operates
under the authority of the Rehabilitation Act of 1973, the Rehabilitation Act Amendments of 1992 and the
Pennsylvania Vocational Rehabilitation Act.
Vocational Rehabilitation provides opportunities for people with disabilities to become productive and
independent in their communities.
nities. OVR’s first priority is to help people with the most severe disabilities
obtain or retain competitive employment.
Statewide there are 15 District Offices staffed with trained, professional Vocational Rehabilitation
Counselors which serve Pennsylvania
ania in
in all
all 67
67 counties.
counties. The
The Hiram
Hiram G.
G. Andrews
Andrews Center
Center in
in Johnstown
provides vocational training and comprehensive rehabilitation services to people from across the state.
OVR’s Bureau of Blindness and Visual Services provides services to the blind and visua lly impaired
designed to increase their independence and employability. OVR's central administrative offices are
located in Harrisburg.
OVR provides a wide range of services to eligible applicants. Some services can help you overcome or
lessen your disability;
bility; others can directly help you prepare for a career. The services you receive will be
arranged to meet your individual needs. Not everyone will need every service. OVR services include:
Diagnostic Services, Vocational Evaluation, Vocational counseling, Training, Restoration Services,
Placement Assistance, Assistive Technology, and Support Services.
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Office of Developmental Programs Bulletins
An Office of Developmental Programs Bulletin is a formal document issued by one of the Department’s program
offices that transmits information, makes an announcement, transmits a regulation interpretation or issues a
policy guideline to affected individuals and organizations outside the Department. A bulletin is not a m eans to
communicate within the Department, but rather is intended to communicate with external individuals and
organizations. A bulletin is a public document.
Listed below are only some of the many bulletins available . This information below is only a brief
synopsis of
information intended to help locate the correct Bulletin for research. Always read the entire bulletin to fully
understand the content.
To search bulletins issued by the Pennsylvania Department of Public Welfare – in addition to the bulletins listed
below - click on the website listed here:
Bulletins are listed alphabetically by title; a direct links to the Bulletin and attachments follow each
Administrative Entity and Provider Contracts
The bulletin reinforces that the title to property in which services are provided, under Chapter 4300 \fiscal
regulations, will remain with the provider. It reinforces that AE’s must use standard contract language developed
by DPW verbatim and may not alter the language in any way .
Agency with Choice Financial Management Services (AWC FMS )
This bulletin clarifies ODP policy on provision of the Agency with Choice (AWC) Intermediary Service
Organization and establishes that individuals may choose to assume responsibility for arranging and managing
their own services by choosing AWC as their Fi nancial Management Service option (“FMS.”) The bulletin
outlines specific programmatic, legal and financial responsibilities of individual/surrogate, agency, AE, and ODP
in providing service through this model.
Attachment: Cover letter from Deputy Secretary Kevin T. Casey:
Clarifying the "30-Hour
This bulletin clarifies in which settings and under which circumstances homes must be licensed when services
are provided on premises.
Clarifying Eligibility for Mental Retardation Services & Supports
This bulletin clarifies eligibility for mental retardation services, based on the DSM and other statutes and
regulations. It includes definition, clarification of age of onset, assessment areas, and adaptive functioning. It
also states that these criteria are distinct from eligibility standards for wai ver and Medicaid services.
Attachment: Diagnostic and Statistical Manual (DSM) IV quotation
Table of Contents
Communication Supports and Services
This bulletin establishes ODP’s policy on accessing communication supports and services for people in the ODP
service system, founded on the right of all persons with communication challenges to receive needed supports
and services so that they can effecti vely and more fully communicate. The bulletin outlines the responsibility of
ODP and its service system partners to ensure that all individuals registered for and receiving services, even
those with significant communication challenges, have:
 The assistance
ce they need to improve their ability to communicate across all aspects of their life, for a
variety of purposes, with different people and in different contexts.
 Access and choice to services that best match their current and future communication needs and
The bulletin also outlines:
 Requirements for a Communication Profile within the ISP, including services, technologies, or support to
the individual and
nd his or her communication partners;
 Access and choice to services that best match current and future communication needs and interests;
 The seven outcome indicators for progress measurement;
 Responsibilities to ensure access
ccess to relevant resources avai lable for instruction, technical assistance,
and other information ; for the provision of communication services and support;
 Cost-effectiveness
effectiveness and use of strategies and devices in the context of the Service Definitions and other
services an individual re ceives, and
 Donating or obtaining used devices through the Reused and Exchanged Equipment Partnership (REEP.)
( .)
Attachment: Cover letter
Consolidated and Person/Family Directed Support Waivers Provider Appeals
This bulletin specifies procedures that Consolidated and P/FDS Waiver service providers must utilize to file an appeal with
DPW, Bureau of Hearings and Appeals for rates effective July 1 and after. It does not affect individuals receiving waiver funded services or their right to Fair Hearing and Appeal or appeals relating to services funded through County -based Mental
Retardation Programs.
Consolidated Waiver Service Definition Amendment Effective July 1, 2009
This bulletin transmits ODP’s approved Consolidated Waiver Service Definition Amendment, effective July 1,
2009,, to
to which
which all
all AEs,
SCOs and
and providers
providers of
of Consolidated Waiver services must comply.The
primary purpose
of the amendment was to revise the service definitions to more clearly outlined the scope and when applicable ,
the limits of service and support the implementation of a consistent reimbursement methodology for waiver
services. Supports Coo rdination Organizations and other Consolidated Waiver providers hould also retain a copy
of the Consolidated waiver and any future amendments during the renewal period.
Cover Letter
CMS Approval Letter to Secretary Richman
Approved Consolidated Waiver Fiscal Year Amendment
Addendum 1, Consolidated Waiver
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Coordination of Treatment and Support for People with a Diagnosis of Serious
Mental Illness Who Also Have a Diagnosis of Mental Retardation
This bulletin and attachments, jointly issued by ODP and the DPW Office of Mental Health and Substance Abuse
Services (OMHSAS) underscore the ne ed to develop and implement comprehensive and coordinated activities
to support people with diagnoses of mental retardation and serious mental illness. The bulletin finds the
traditional model of support being the responsibility of one system or the other as inadequate, and emphasizes
the need for a closely coordinated response by both MH and MR systems to provide individualized, timely, cost effective and integrated services in keeping with Everyday Lives and OMHSAS Community Support Plan. It
requires written
ten procedures and protocols and collaborative individualized plans, encourages specialized
providers, cross-system
system training and planning, and includes an attached comprehensive review document.
County to County Relocations
This policy was developed to ensure that Medicaid waiver requirements continue to be met and to provide
direction to counties regarding how to consistently implement standardized, statewide procedures when an
individual relocates from one county to anothe r. The bulletin applies when an individual enrolled in or waiting for
waiver or base services moves from one county to another, when an individual is relocating from a state center
to a county in which they hae not previously lived, and children in custodi al care placed in foster care in another
county. The bulletin establishes the parameters for funded services (waiver and base) eligibility, and county
responsibility to accept transfers. The bulletin discusses continuity of services, timelines, the respons ibility for
joint planning between counties and accuracy of HCSIS data, changes in costs or service needs, monitoring,
PUNS, and appeals. Attached to the bulletin is the “Individual Relocation Form.”
Disability Rights Network Access to Records and Joint Investigations
This bulletin communicates the merger of Pennsylvania Protection and Advocacy, Inc., (PP& A) and Disabilities
Law Project (DLP) to create the Disability Rights Network (DRN), clarify procedures for site visits and access to
records by DRN, and to issue the ODP and DRN joint investigation protocol. A
A protection
protection and
and advocacy
advocacy agency
has the authority to investigate incidents or complaints of abuse and neglect of persons with disabilities if there is
probable cause or if incidents or complaints are reported to the agency, as well as the right to access facilities,
individuals receiving services, and individual records under certain circumstances.
DRN has the right to:
 investigate incidents or complaints of abuse and neglect and pursue legal, administrative, and other
appropriate remedies to ensure the protection
protection of,
of, and
and advocacy
advocacy for,
for, the
the rights
rights of
of individuals
individuals with
developmental disabilities;
 reasonable, unaccompanied access to public and private facilities that provide services, supports, and other
assistance for individuals with developmental disabil ities;
 meet and communicate privately with individuals by telephone, mail, and in person, and
 have access to the records of an individual with developmental disabilities .
Domiciliary Care for Persons with Mental Retardation
This bulletin outlines collaborative relationships between the Area Agencies on Aging (AAAs) and County
MH/MR programs when individuals with mental retardation reside in domiciliary care homes. The County MH/MR
program is responsible for planning and provi sion of any necessary community mental retardation services for
individuals with mental retardation in domicilary care, based on assessment and the ISP developed by the
Supports Coordinator and team, subject to availability of funds. Service planning, impl ementation and review can
be a shared responsibility between the AAA and the County MH/MR program or delegated by one agency to the
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other. In addition, the bulletin states County/MR programs are authorized to use Medicaid waiver funding for
home and community services provided to eligible individuals in domiciliary care homes while he or she is
receiving the domiciliary care supplement. Habilitation and other waiver services provided by the provider of
ary care
care can
can be
be reimbursed
reimbursed under
under the
the waiver
waiver as
as aa difficulty
difficulty of
of care
care payment.
payment. 73169.aspx?BulletinId=4332
Domiciliary Care Payments and Waiver Funding - Clarification
This bulletin clarifies payment for domiciliary care payments for individuals eligible for or receiving MR services.
Due Process and Fair Hearing Procedures for Individuals with Mental
This bulletin disseminates ODP’s policy on due process for individuals who register for or receive base -funded
Waiver) mental retardation services. It clarifies the due process and fair hearing and appeal processes and
reinforces the requirement for written County Mental Health and Mental Retardation (MH/MR) Program public
procedures for appeals of decisions related to base -funded (non-Waiver)
Waiver) services. This bulletin also delineates
ODP’s policy on fair hearings
rings for
for individuals
individuals who
who apply
apply for
for or
or receive
receive services
services through
through the
the Consolidated
Consolidated and
Person/Family Directed Support (P/FDS) Waivers.
A. Kevin T Casey Deputy Secretary Due Process letter
B. Attachment 1 - DP 458
C. Attachment 02 BHA Agency Appeal Coversheet NON -CAO
D. Attachment 02A BHA Agency Appeal Cover Sheet Instructions 2008
Elimination of Restraints through Positive Practices
This bulletin outlines core strategies essential to implement a restraint elimination initiative, and provides
guidance to consumers, families, providers, advocates and county agencies with specific directives, techniques,
and recommended practices built on Positive Approaches and person -centered
centered planning. ODP’s goal is to
reduce and eventually eliminate restraint , except in situations of immediate jeopardy danger and when utilized as
a last resort – not as as aa behavioral
behavioral intervention.
intervention. This
This Bulletin
Bulletin does
does not
not eliminate
eliminate the
the use
use of
of restraints
restraints as
as an
emergency safety intervention.
Attachment: Cover Letter
Employment, Office of Mental Retardation Policy
This statement of policy affirms that an individual with MR of legal working age should have access to
employment and support and training to sustain it. Services include transitional work, job finding and job support,
as defined in the most recent service definitions. The bulletin also identifies youth and young adults as a high
priority, and promotes close coordination with OVR and development of local employment coalitions.
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Guidelines for Identifying Persons with Mental Retardation and Mental Illness
for State Mental Hospital Discharge
The purpose of this bulletin is to formalize the procedure of identifying individuals
s with
with mental
mental retardation
retardation and
mental illness (dual diagnosis) for state Mental health Hospital discharge. It includes step -by-step
procedures for
counties, state hospitals, ODP and OMHSAS to identify potential candidates for discharge, communication, roles
and responsibilities, and development of the discharge plan from the state hospital to community supports (when
sufficient supports are available in the community.) Attached to the bulletin is a form to capture information.
Home & Community Based Service Eligibility/Ineligibility/Change Form
The purpose of this bulletin is to disseminate and explain the use of the “Home & Community Based Services
(HCBS) Eligibility/Ineligibility/Change Form” (PA 1768). The PA 1768 used by HCBS agencies statewide to
inform the County Assistance Offices (CAOs) of applicants’ and recipients’ eligibility, ineligibility or other changes
for HCBS programs. The PA 1768 is the only form that CAOs will receive to document medical eligibility for
HCBS programs. It does not eliminate the requirement for program offices to document program eligibility for
their HCBS programs on their customary forms, but it eliminates the need for program offices to submit multiple
forms to CAOs. ODP continues to use the “Waiver Eligibility Application Cover Sheet” (MR 54), the “Financial
Application Release Form” (MR 55), the “Eligibility Determination Form” (MR 250) and the “Annual
tion of
of Need
Need for
for ICF/MR
ICF/MR Level
Level of
of Care
Care Form”
Form” (MR
(MR 251).
251). =1205
Attachment: HCBS Eligibility/Ineligibility/Change Form (PA 1768 ) 69.aspx?AttachmentId=1151
Incident Management
This policy statement specifies guidelines and procedures for the incident management process, and describes
the larger risk management and quality management processes to which it relates. The Bulletin, addressing
procedures vital to the health, safety, dignity and rights of individuals receiving services, details incident policies,
procedures, training, timely response, reporting, investigation, and development / implementation of corrective
tions. All providers of MR services, including private and state -operated
operated ICF’s/MR, AE’s, and supports
coordination entities are reporters and required to adhere to this policy. The Bulletin also outlines contingency
plans for filing incidents when HCSIS i s not available.
Individual and Provider Appeals - Clarification
Pennsylvania statute states that non -waiver
waiver applicants and recipients have the right to appeal under the Local
Agency Law when services are denied, reduced, or terminated. The appeal process is outlined in the bulletin.
Individuals applying for or receiving private or public ICF/MR services can appeal to the Bureau of Hearings and
Appeals. This is in accordance with Mental Retardation Bulletin 00 -02-13
13 entitled “Need for ICF/MR Level of
Care.” Also see OPD bulletin 00 -08-05,
05, “Due Process and Fair Hearing for Individuals with Mental Retardation.” 3169.aspx?BulletinId=4032
Individual Education Program (Development of): Roles and Responsibilities of
County Mental Health/Mental Retardation Progr ams
This bulletin outlines agreements among DPW, the PA Departments of Education, Labor and Industry and
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Health governing participation of county MH/MR staff and designees in a child’s IEP process . County funding for
services is outlined, as is what should be communicated at IEP meetings by county representatives (which may,
at the county’s discretion, include supports coordination.
Individual Eligibility for Medicaid Waiver Services
This bulletin supersedes bulletin 00 -99
99-14. The bulletin issues procedures for the initial determination and annual
determination of
of individual
individual eligibility
eligibility for
for services
services and
and supports
supports provided
provided under
under the
the Consolidated
Consolidated and
and P/FDS
waivers for individuals with mental retardation aged three and older. ( This bulletin
ulletin does
does not
not apply
apply to
to eligibility
procedures for services in ICFs/M.) These procedures apply to responsibilities carried out by AE’s, County
MH/MR programs, Supports Coordinator
oordinators, Supports Coordination Organizations,, and
and County
County Assistance
Assistance Offices
(CAOs). It applies to eligibility determinations for Waiver services when Waiver funds become available for an
individual as well as re-determinations
determinations issued on and after the effective date of this bulletin
A. Kevin T. Casey Deputy Secretary Letter
B. Attachment 1: Waiver ICFMR LOC Documentation Nee ded letter
C. Attachment 1A: Form MA_51
D. Attachment 2: DP 250
E. Attachment 3: Waiver 2nd Request ICFMR LOC Documentation Needed letter
F. Attachment 4: No ICFMR LOC Documentation Received Lette r
G. Attachment 5: Waiver Determination of ICFMR LOC letter -- MEETS
H. Attachment 6: Waiver Determination of ICFMR LOC Letter -- DOES NOT MEET 69.aspx?AttachmentId=4262
Attachment 7: PA_1768
Attachment 8: PA_600L -SG 3
K. Attachment 9: I-PA_4
L. Attachment 10: Waiver ICFMR LOC redeterm ination needed letter
M. Attachment 11: DP 251
N. Attachment 12: Waiver Re-Determination
Determination of ICFMR
LOC letter -- MEETS
O. Attachment 13: Waiver Re-Determination
Determination of ICFMR LOC letter -- DOES NOT MEET entId=4269
P. Attachment 14A: Legal Aid Network Word Document chmentId=4271
Q. Attachment 14: DP 458
Lifesharing Through Family Living
Through this bulletin, ODP supports and encourages expansion of Lifesharing based on the quality of the model
and cost-effectiveness. Direction to Supports Coordinators includes
includes discussing
discussing Lifesharing
Lifesharing at
at key
key points,
points, such
such as
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when someone is choosing residential options, at annual plans, and transition from school. Also included are
instructions for counties around start up costs, payments, creating a Lifesharing strategic plan and including it in
their annual plans. The assignment of regional point people is noted in this document. 25
Medical Assistance for Workers with Disabilities (MAWD) in the Community
MR Program
This bulletin outlines the responsibility to provide information and referral to the Medical Assistance for Workers
with Disabilities program (MAWD) to individuals who are or expect to become employed. Under MAWD,
individuals with disabilities can receive Medicaid Assistance, while working, even when their
their earnings
earnings increase
above the limits for other Medicaid Programs. The Bulletin encourages employment through coordination with
other service providers (including OVR) by disseminating information on work incentives such as MAWD.
Attachment: Operations Memorandum - Medicaid OPS031010
This bulletin describes qualified Microboards and Self -Directed
Directed Support Corporations (SDSCs) and the
responsibilities of AE’s to contract with them. SCSD’s are small non -profits
profits comprised of people who have a
relationship with the individual and who are committed
mmitted to
to his
his or
or her
her needs
needs and
and desire
desire for
for self
self -determination. The
individual chooses the SDSC model and its members, who develop services for one individual and follow
regulations and procedures of other providers while retaining control on behalf of the person, including
responsibility as employer-of-record. =4084
Attachment: Cover Letter
Need for an ICF/MR Level of Care
This bulletin outlines the responsibility of County MH/MR Programs to make the initial level of care determination
for individuals seeking admission to ICF’s/MR. Criteria, outlined in the bulletin, comply with federal Centers for
Medicare and Medicaid Services (CMS) requirement that only individuals requiring ICF/MR level of care receive
it. This bulletin does not apply to ICF/MR level of care determinations related to application for the Consolidated
or P/FDS waivers.
P/FDS Waiver Amendment to Allow for the Provision of Respite Services in
Contiguous States
This amendment allows for the provision of respite services in New York, Maryland, New Jersey, Ohio, Delaware
and West Virginia. Providers of respite services in these states are required to meet the standards and
certifications as outlined in Pennsylvania’s P/FDS waiver.
Person/Family Directed Supports Waiver, Approved Renewal
This bulletin transmits ODP’s approved Person/Family Directed Supports Waiver effective July 1, 2007, to which
all AEs, SCOs and providers of P/FDS services must comply. The attached approved P/FDS Waiver establishes
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the design, policies, procedures, and requirements for the provision of P/FDS Waiver services during the
renewal period.
This renewal adds Supports Coordination as a Waiver service, but establishes that it is excluded from the
individual cost limit of $23,200
0 per person per fiscal year. P/FDS services are not available to individuals living in
Personal Care Homes where 10 or more people live, if the move -in
in date to the home is July 1, 2008 or after.
Pennsylvania's Home and Community Based Services (HCBS) Person/Family Directed Support (PFDS) Waiver
(CMS Control #0354.02.00)
Application for a §1915(c) Home and Community-Based
Services Waiver
Office of Developmental Programs Detailed Work Plan To Fulfill Requirements Related to the Consolidated and
Person/Family Directed Support Waivers
Letter to Administrators from Kevin T. Casey
Person/Family Directed Supports Waiver Cap 2008-2009
This bulletin communicates the increase in the approved individual cost limit or waiver cap for the P/FDS waiver
from $23,200 to $26,000.
Person/Family Directed Support Waiver Service Definition Amendment
Effective July 1, 2009
This bulletin transmits ODP’s service definition amendment to the approved Person/Family Directed Support Waiver; AEs,
SCOs, and other providers of P/FDS Waiver services must comply with the outlined requirements and procedures. The
primary prupose of the amendment was to revise the service definitions to clearly outlined the scope and, when applicable,
limits of services, as well as implement a consistent methodology for waiver services. Please note the cap is amended in
Bulletin 00-09-02. SCOs and other P/FDS
/FDS Waiver
Waiver provider
provider should
should retain
retain aa copy
copy of
of the
the P/FDS
P/FDS Waiver
Waiver and
and any
any future
amendments during the renewal period.
Cover Letter:
CMS Approval Letter to Secretary Richman:
Approved P/FDS Waiver Amendment : rts/NewslettersBulletins/003673169.aspx?AttachmentId=4502
Positive Approaches
This bulletin emphasizes the concepts and promotion of Positive Approaches and encourages and promotes the
use of Positive Approaches in all programs serving people with Mental Retardation.
 Positive Approaches is a movement which emphasizes the dignity and respect to which every individual
is entitled.
 It requires striving to know and understand each person, his/her unique qualities, living environment,
relationships, communication, activities and personal dreams in or der
der for
for him
him or
or her
her to
to attai
attai an Everyday
 Positive Approaches assumes all behavior has meaning and that it is vital to clearly and honestly
ne the reasons and adaptive qualities the person is expressing through behavior.
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 In addition to examining the individual and the reasons for the expression, Positive Approaches
emphasizes a holistic approach to physical and mental health, environment, and history as avenues to
better understanding.
 Positive Approaches offers viable alternatives to aversive methods and measures satisfaction of the
person being served and improvement of his or her quality of life.
Principles for the Mental Retardation System
This Bulletin reaffirms ODP’s Everyday Lives Values, first published in 1990. The
The values,
values, articulated
articulated as
as principles
in Everyday Lives: Making it Happen, set the direction for the service system. They provide standards for policy
development, service design and decision-making.
decision making. They articulate the outcomes in person-centered
terms that
our system should achieve and they are a guide for personal action.
Contributing to Community
Community Integration
P.R.N. - (Pro Re Nata) Medication Usage for Psychiatric Treatment Clarification and Interpretation
In this clarification, ODP reiterates that PRN's may be used when the proper guidelines are in place.
place Included is
a detailed discussion of the appropriate use and supervision, as well as correlation to regulations .
Provider Profiles for Mental Retardation Providers
This bulletin provides information on provider profiles av ailable on the DPW website. The rationale for the
profiles is federal statute requiring that
that Medical Assistance recipients have free choice of willing and qualified
providers, as well as the choice and control of individuals and families in comparing and s electing providers
across services. The bulletin states that individuals and families are encouraged to communicate directly with
providers and visit their websites, and meet and interview provider staff.
Provider profiles can be accessed from the DPW we bsite ( ) by clicking on “Information for
Families and Individuals” and “MR Service Provider Profiles” under the Mental Retardation Services heading.
Visitors are then linked to the HCSIS Service a nd Support Directory (SSD) to search statewide for services and
providers and the Provider Licensing Directory, which contains licensed provider demographic information. Also
on this page are “Recommended
Recommended Questions that Families and Individuals Receiving S ervices May Ask
Providers" with suggested questions that individuals/families may use when interviewing providers. The
"Recommendations for All Provider Websites" lists basic information recommended for inclusion on provider
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Attachment: Cover Letter
PUNS Manual
This manual contains complete information on the PUNS process, including signature requirements, addressing
disagreements, related HCSIS reports, and ODP PUNS contact people.
A. PUNS Manual
B. PUNS Disagreement Form
Qualification and Disqualification of Waiver Providers
This bulletin outlines the standardized process, beginning January 1, 2008, for qualification and disqualification
of provider agencies, individual professionals, and vendors that provide licensed and unlicensed Medicaid
Waiver services, to individuals in the Consolidated and Person/Family directed Support (P/FDS) Waivers .
Supports coordination s ervices are
are not
not included
included in
in this
this bulletin.
bulletin. This statewide process promotes consistency,
opportunity for interested providers, statewide availability of qualified providers, and consistency with federal
Attachment: Disqualification and Qualification Process Letter
Representative Payee Function: ODP Clarification on Payment Source
This bulletin establishes parameters for payment to certain entities for providing representative payee service.
While the Social Security Administration does allow organizations to collect a fee for the representative payee
function in certain circumstances, ODP does not allow a fee to be collected from individuals receiving services in
licensed or unlicensed agency owned, rented, leased, or operated residential homes. The management of
personal funds is included in the rate that the provider re ceives for the care of the individual. Money
management must be provided to any person that could potentially benefit from the service and should be
reflected in the person’s Individual Support Plan (ISP) whether or not the person has a representative paye e.\
Attachment: Cover letter
Service Definitions (in effect on July 1, 2009)
During the CMS review of the P/FDS Waiver renewal application and Consolidated Waiver amendment, ODP
began to work with a small group of family members, advocates, and professionals regarding the service
definitions. The aim of this group was to identify recommendations for revisions to the service definitions that
would improve the clarity of the definitions, promote consistency of their application across the State, promote
integrated service options, and strengthen compliance
compliance with
with federal
federal guidelines
guidelines related
related to
to service
service delivery.
delivery. The
recommendations were used by ODP to develop service definition amendments to the Consolidated and P/FDS
Waivers. CMS approved the amendments on September 4, 2008.
Table of Contents
Cover Letter:
Consolidated Waiver, Person/Family Directred Support (P/FDS) Waiver, Administrative
Administrative Services,
Services, and
and Base
Base-Funded Services
Chart ntId=4423
Service Definitions Narrative for Consolidated Waiver, Person/Family Directed Support Waiver, Administrative Services, and
Base/Waiver Ineligible Services
Service Delivery Preference, Procedures
This bulletin supersedes Bulletin 00-00
00-09 (“Service
Service Preference in Medicaid Waivers for Individuals with Mental
Retardation”) and disseminates ODP’s policy regarding an individual’s preferred choice of service delivery
preference for either Home and Community -Based
Based Waiver or Intermediate Care Facilit y for the Mentally
Retarded (ICF/MR) services prior to Waiver enrollment. It outlines procedures to meet federal requirements in
determining individuals’ preference between home and community -based
based (HCB) v. ICF/MR services. It also
outlines who must be given
en service preference, when; the need to explain feasible HCB services; the role of
individuals or representatives; application for HCB services; appeal and fair hearing, assistance in application for
Medicaid; the role of the QMRP; priority for waiver fun ding; and the relationship to the PUNS and county
A. Home and Community-based
based or ICF/MR Application and Service Delivery Preference Form
B. Waiver Service Preference Indicated
C. ICF/MR Service Preference Indicated
D. Chose to not Indicate Service Preference
E. Letter from Kevin T. Casey
Services Requiring Third-part
Third part Insurance Review Prior to Consideration for
Waiver Payment
This bulletin outlines ODP’s policy that waiver funding cannot be used to supplant the cost of services that are
compensable through private insurance, Medicare, or Medical Assistance. The kinds of services, obtaining
denials and the role of the county are discussed.
Service Review Protocol for Individuals in the Consolidated and P/FDS
Waivers (replaces obsolete bulletin 00-05-06)
This protocol establishes consistent application of ODP policies to create a more timely appeal resolution
process when waiver services are denied, reduced, suspended, or terminated. It supplements the current
requirements of bulletins 00-00-09, “Service
“Service P
Preference” and 00-04-07, “Procedures for Individual and Provider
Appeals.” This bulletin outlines responsibilities and the circumstances when counties and their designees are
required to explain fair hearing rights, including when individuals are asked to sign approval of their ISP and
changes to the plan. 529
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Sexuality – ODP Guidelines
In 1993, the Office of Developmental Progams - recognizing that sexuality is an important aspect of personal
health, safety and expression - established a subcommittee of individuals with disabilities, parents, educators,
therapists and advocates to study and provide advice on education, training an d policy development on human
sexuality and people with mental retardation. The subcommittee developed “Guidelines Concerning Sexuality”
as first step toward helping men, women, and children and those who support them address this important
aspect of life. These guidelines provide a framework to help agencies develop policies that support the rights of
people with disabilities and to assist self advocates in obtaining information and education and considering
personal responsibility, as well as serving as a reference for families on rights and protections.
Attachment: Guidelines Concerning Sexuality
Sign Language / Interpretation Bulletin
This communication provides updated information on interpreter and/or transliterator registration and payment.
AEs are required to pay for necessary interpretation and/or transliteration services; however, services are not
funded under the Consolidated and P/FDS Waivers.
TM) and PA Plus Users Manual
ODP Supports Intensity Scale (SIS
The purpose of this bulletin is to describe the rollout and implementation strategy of the SIS and PA Plus.
Included are instructions on the use of the SIS and PA Plus in the development of ISP as it relates to the Waiver
requirement that all ISPs address assessed needs. Effective with this bulletin, all Waiver participants must
receive a SIS and PA Plus assessment through the multi -year
year rollout strategy managed by ODP. AEs will
continue their current
urrent assessment
assessment practices
practices for
for Waiver
Waiver participants
participants until
until the
the individual
individual has
has been
been identified
identified to
receive an initial SIS and PA Plus.
SIS and
and PA
PA Plus
Plus Users
Users Manual
Manual was designed to accompany this bulletin to provide guidelines for
implementation. This manual
nual provides information useful for individual planning for all stakeholders affected by
the assessment implementation (Waiver participants and families, Supports Coordinators, Support Coordination
Organizations, AEs, Providers, the SIS and PA Plus Vendor , etc.).
Final Cover Letter:
SISTM and PA Plus – Overview
This bulletin outlines the reasons for the SIS©, why the instrument was chosen, it’s focus, and how it is
administered. Also discussed is the correlation of the instrument to the ISP (services and supports included in
the ISP must match the needs demonstra ted through the assessment process.) The bulletin emphasizes that the
SIS© and PA Plus assessment is not a budget tool, but rather is used to help guide conversation and to help
identify services and supports to meet needs in the individual planning proces s.
Attachment: What the Supports Intensity Scale(C)(SIS(C)) and the PA Plus Are and Aren't for the MR System
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in Pennsylvania msReports/NewslettersBulletins/003673169.aspx?AttachmentId=4070
Vendor Fiscal/Employer Agent Financial Management Services (VF/EA FMS)
The purpose of this bulletin is to clarify the ODP’s policies on the provision of the Vendor Fiscal/Employer Agent
(VF/EA) Intermediary Service Organization option available to individuals or their surrogates in the Pennsylvania
Developmental Programs system who reside in their own private residence or in t he
he home
home of
of their
their family.
Participant-directed services affors individuals and their surrogates choice and control over the services and
supports they receive, in keeping with Everyday Lives and Self -Determination principles.
Such organizations are more r ecently known as Financial Management Service (FMS) organizations. While
there are two FMS options selected by ODP (Vendor Fiscal/Employer Agent and Agency with Choice), this
bulletin focuses on the provision of VF/EA FMS services. Pennsylvania’s Guide to Participant Directed Services
(PA Guide to PDS), developed by ODP, has detailed fact sheets and agreement forms that describe the
differences between the two FMS options.
Attachments: Cover Letter
Participant Directed Services information on the OCS website:
Table of
of Contents
OCS Bookmark
Office of Developmental Programs Acronym Card
ODP Acronym Card, side 1 of 2
ODP Acronym Card, side 2 of 2