2014 Spring - The Arc of Massachusetts

Transcription

Advocate
Spring 2014
The blueprint for success:
employment and community inclusion
By Leo Sarkissian
In November, the Department of
Developmental Disabilities released
the “Blueprint for Success,” with
the subtitle “Employing Individuals
with Intellectual Disabilities in
Massachusetts.” The Arc of Massachusetts supports the Blueprint
and partnered on its development
with ADDP (Association of Developmental Disabilities Providers).
The Blueprint reflects continuing
“cultural-societal change.” This
point was effectively shared by Bob
MacDonald, a provider executive
from western Massachusetts, who
helped explain the Blueprint to
families at a forum in Springfield.
The continuing “change” was
crystallized by the Americans with
Disabilities Act (ADA) and the
Get ready for the 4th annual
All Aboard The Arc!
scheduled for Wednesday, May 7,
2014. This year’s awareness campaign will be the largest ever, with
more chapters of The Arc from
all parts of the Commonwealth
participating.
Focusing public attention on the abilities
and needs of people with intellectual and
developmental disabilities
Plans are underway for the
fourth annual All Aboard The Arc!,
Achieve with us.
All Aboard The Arc! has moved
the central event to an exciting
new and very visible location: The
Boston Common! The Rally will
begin at 11 a.m. with hundreds
of people gathering on the lawn,
with our beautiful State House as a
backdrop. There will be an inspirational program including Justin
continued on page 14
Supreme Court’s Olmstead decision.
It is further reflected in Governor
Patrick’s and EOHHS Secretary
Bigby’s “Community First” policy,
eloquently framed in 2008. The
federal court further reinforced the
decision when Governor Patrick
decided to appeal Judge Tauro’s
decision on maintaining the
Fernald state school.
continued on page 8
Inside this issue...
Article Page
Government Affairs......................4
Operation House Call................10
The Friendship Corner................16
SUPPORTBrokers........................21
News from the Chapters............23
HealthMeet...............................28
Published by
217 South Street, Waltham, MA 02453
(781) 891-6270 • www.arcmass.org
Leo V. Sarkissian
Editor
Judy Zacek Associate Editor
Beth Rutledge
Production Coordinator
Carol Daly Layout and Design
The Arc of Massachusetts
Board of Directors
Officers
Frank Sally
President
Daniel Sullivan
Vice President
Tracy Atkinson
Secretary
Deborah Norton
Treasurer
Christopher Andry
Immediate Past President
Directors
Justin Bernard
Susan Lodemore
Elizabeth Bostic Seth P. Lopes
Jim Buss
Sean Morrissey
Katherine Craven Renald Raphael
Tim Evans
Kathy Ricciardi
Adam Hill
Peter H. Tallas
Robert A. Hill
Martha Ziegler
Judi Kotanchik
Joe Andrade, Director Emeritus
Florence Finkel, Director Emerita
The Arc of Massachusetts Staff
Leo V. Sarkissian
Executive Director
Barbara L’Italien
Director of Government Affairs
Brenda Asis
Director of Development
Christopher Jenkins
Financial Officer
2
In Memoriam: Donald Guilfoyle,
The Arc of Greater Plymouth founding father
The story of The Arc of Greater Plymouth begins at the
kitchen table of Don Guilfoyle and his wife Bette in 1966.
They were part of a group of parents wanting a better,
richer life for their children with developmental disabilities.
From this group, The Arc of Greater Plymouth was formed.
Until his death, on July 23, 2013, Don was a member of
The Arc’s Board of Directors. He was a past president and
Bette and Don Guilfoyle
served as treasurer for a span of over 50 years. At The Arc of
Greater Plymouth’s June 2013 Recognition Award Event, Don was given
Emeritus Status. Don and Bette, along with their son Jack were examples of
lifelong commitment to growth, continued learning, and giving back. Largely
through their dedication and hard work over the years, The Arc of Greater
Plymouth has become the multi-service agency that exists today. Bette, a
former English teacher at South Shore Vocational Technical High School in
Hanover, and their exceptional son Jack, both passed away in 2010. Their
lives are shining examples of our agency mission in action.
In addition to his work as an officer and director of The Arc, Don and Bette
could be found at most Arc events, be it wrapping holiday gifts at the Kingston Mall for fundraising purposes, seeking donations for the annual auction, or
dancing at the annual dinner. Don and Bette’s four surviving children remember their father’s dedication and their own participation in the organization.
Some fond memories include a 5-K race sponsored by the Arc and the Pilgrim
Food Cooperative operated by The Arc for many years as a job training facility.
In 2011, The Arc of Greater Plymouth established the Jack Guilfoyle Memorial
Scholarship for Reading Excellence as a tribute to their continuing commitment to lifelong learning. The scholarships are awarded yearly to Hanover
Public School students who have shown outstanding commitment to
improving reading skills.
Wayne Owen, past president and current board member of The Arc of Greater
Plymouth remembers: “Don’s financial experience and unwavering commitment assisted The Arc enormously through the challenging periods as well
as the better times. Don remains, without challenge, one of the kindest and
most loyal individuals I have ever met.” Jim Wallace, long time board of
member, adds “Don was a key member of the organization for over 52 years.
He earned the respect of everyone associated with The Arc based on his
professionalism, integrity, persistence, dedication and determination. The Arc has truly lost a remarkable person and friend.”
In gratitude and celebration of the irreplaceable contributions Don, Bette
and Jack have made to our organization, The Arc of Greater Plymouth
will dedicate our Conference/Board of Directors Room at our new site,
52 Armstrong Road, to the Guilfoyle family. It will be named the
Donald J. Guilfoyle Conference Room.
Much left to do: help us help others
By Leo Sarkissian
In March 2014 we read: Harrisburg
PA, “More than 13,000 families are
in line for benefits to help care for
someone with an intellectual disability.” One parent reports about
her limited employment options;
She is forced to take a low-paying
job “that allows her to adjust her
schedule around her son’s needs.”
We read again – this time about
“Hall v. Florida,” a death penalty
case on which we have reported
that sits at the Supreme Court. Peter
Berns, CEO of The Arc US, states,
“Florida is clearly violating the
Supreme Court’s Atkins v. Virginia
ruling and the Court must reaffirm
its commitment to the rights of
people with intellectual disabilities in
our criminal justice system. Freddie
Lee Hall has an intellectual disability,
and Florida’s effort to [flout] the
professional standards on IQ testing
to end someone’s life needs to be
stopped by the highest court in our
country. It is immoral and unjust.”
And now we read about the Maryland Commission for Effective
Community Inclusion of Individuals
with Intellectual and Developmental Disabilities, which met with the
public recently at The Arc of Frederick County, which provides services
for people with disabilities. It was
the fourth and final stop of the commission’s tour.
The commission was formed after
the death of Ethan Saylor, who died
last January while in the custody
of Frederick County Sheriff’s Office
deputies after refusing to leave the
Regal Cinemas Westview Stadium
16 movie theater. Saylor had Down
Achieve with us.
syndrome. Phyllis Liddell, an Arc
volunteer, shared stories that demonstrated the importance of considering people with disabilities when
setting policy and procedures, and
using a common-sense approach.
These news stories and others
show we live in fast-paced times
where various issues and needs of
children and adults with disabilities
can arise. The Arc and The Arc of
Massachusetts in particular have the
knowledge, history and network to
respond to issues and needs in a
substantial way. But our funding is
reliant primarily on private financial
contributions. It still requires an organization like The Arc to pass those
laws, obtain adequate funding and
update laws, regulations and policies as needed. Don’t take The Arc
for granted. We need your support!
The Arc leads the way in advocacy
for all people with intellectual
and developmental disabilities.
In Massachusetts we have a
history of accomplishments that
have touched the lives of tens of
thousands of children and adults:
The Arc of Massachusetts was one
of the three lead organizations
which brought about Chapter 766,
Special Education Law
The Arc of Massachusetts led the
efforts to establish Turning 22
(Chapter 688); in the years after, it
worked with officials to establish a
minimum formula for funding on an
annual basis
The Arc in its role in the Consent
Decrees (legal suit on state school
or institution conditions) ensured
that a “Community Plan” was included in the settlement
The Arc played a leadership role
in other legal actions, partnering
with attorneys or law centers – all
focused on wait lists or ensuring the
right to live in the community with
adequate support services
Boulet – the Wait List settlement
Rolland – Nursing home settlement
Mahoney v. Weld – to offset legislative attempts to delay institutional
closure
In the next eighteen months we
hope to get louder so more people
will come to know us and the value
of our work. But how about you?
Have you supported us lately? Do
you receive supports? Do you think
about the value of those supports
every year? What it takes in lean
years to minimize negative impact
and in good years to increase access
to services?
With your support we can do more
of the same – bring about additional
accomplishments that translate into
good outcomes for individuals and
families. If we grow the support we
can have more regional outreach to
families who are struggling to find
resources and empower them. We
can ensure The Arc is here tomorrow and in the future. The supports
we advocate for – whether they cost
$2,000 per year, $15,000 per year
or much more (residential) – require
continual nurturing and advocating.
So does The Arc. Help us be here for
you, your friends and others. Help
us now by going to Donate Now at
www.arcmass.org
3
Government Affairs
Huge turnout at State House for annual
Legislative Reception
Julie Fitzpatrick, Senate President Therese Murray, Senator Jennifer Flanagan, and artist
Anastasia O’Melveny
On March 5, more than 400 people joined The Arc Massachusetts
and the Massachusetts Developmental Disabilities Council at the
36th Annual Legislative Reception. Evelyn Hausslein provided the keynote talk for the event which was
titled, “Making Our Future Happen: Feeling Safe, Included and
Free.” In the process of sharing
two stories about her son and his
growth, she captured the theme
while highlighting positive policies that could advance the lives of
persons with disabilities. We’re looking for
a few exceptional
women!
Riverbrook women are exceptional…
not because of their developmental
disabilities, but because of their will to
succeed. At Riverbrook, we nurture that
spirit with a whirlwind of quality activities,
personalized care, jobs in the community,
cultural excursions and fun. The result—
women who are more accomplished and
confident with each passing day.
Stockbridge, Massachusetts • 413.298.4926 • www.riverbrook.org
4
Leo Sarkissian, Representative Brian Dempsey and Barbara L’Italien
Evelyn, Bob and Tom Hausslein
continued on page 5
Government Affairs
Huge turnout at State House for annual Legislative Reception
contd from p. 4
Representative Brian Dempsey and
Senator Jen Flanagan were recognized with legislators of the year
awards. Speaker Robert DeLeo and
Senate President Therese Murray
enhanced the event by leading
the presentation to the awardees – works of art by Anastasia
O’Melveny and Jamie Maxfield.
Brian Leary served again as emcee,
keeping the program on schedule.
EOHHS Assistant Secretary of Disability Policy and Programs’ Rosalie
Edes shared greetings on behalf
of Governor Patrick. Frank Sally,
President of The Arc, provided
welcoming remarks while Julie
Fitzpatrick, Chair of the MDDC,
ended the program with the “Call
Assistant Secretary Rosalie Edes, Mass. Rehab Commissioner Charles Carr and
to Action.” Attendees then had the
DDS Commissioner Elin Howe
opportunity to visit their own state
senators and representatives to encourage them to
support budget and legislative priorities that would
make a difference in the lives of people with intellectual and developmental disabilities.
A special thanks to the wonderful attendees who not
only added spirit and energy to the occasion but
filled the halls of the state house after the event. Your
participation is crucial to these events—Thank you! Specialized Housing, Inc.
Working with families to create innovative
independent living opportunities since 1983 –
home ownership and supported apartments.
Specialized Housing, Inc.
45 Bartlett Crescent
Brookline, MA 02446-2220
Achieve with us.
tel (617) 277-1805
fax (617) 277-0106
www.specializedhousing.org
Speaker Robert DeLeo
5
Government Affairs
Governmental affairs -- affecting your life
ment and ensuring the adequate
funding of residential services.
Hopefully you already have been
on our website: go to State House
Policy to find the budget fact sheet
and testimony; and to our Action
Center to send an email (on the
home page click the Take Action
bar). If not, you’re late but not
too late so please help us help you
and/or a friend or family. Emails
are a basic first step if you’re learning about advocacy or are “very
busy,” but always remember to
personalize them with a sentence.
This year in partnership with
If everyone sent an email who had
ADDP, Mass Families Organizing
a disability or was connected to a
for Change and others, The Arc
person with I/DD we would have
budget request touches children,
tens of thousands of them –what
adults, family support, employa difference it
would make.
The Arc of
Tailored Financial Services for
Massachusetts’
Families with Special Needs
website is
If you are responsible for a family member with a disability or
www.arcmass.
other loved one, you face unique challenges involving complex
financial situations. We understand.
org
As this issue of Advocate went to
press, The Arc of Massachusetts’
began its 60th year of policy advocacy on behalf of individuals with
intellectual and developmental disabilities (I/DD). Whether establishing special education or building
the foundation of the community
system by ensuring that the “Community Plan” was part of the Massachusetts Consent Decrees, The
Arc has been the leader in ensuring
supports and services for those
with I/DD and families.
For the last 15 years we have provided caring, experienced
financial guidance to special needs families, helping them
pursue long-term financial security for their loved ones through
informed estate and tax planning, investment and insurance
planning and special needs trust management strategies.
Please contact us for a free, no-obligation consultation. It would
be our privilege to serve you and your family and help you
pursue the long-term financial independence you deserve.
special needs
financial planning
A Division of Shepherd Financial Partners
Cynthia R. Haddad, CFP®
& John W. Nadworny, CFP®
1004 Main Street
Winchester, Massachusetts 01890
(781) 756-1804
[email protected]
www.specialneedsplanning.com
Securities and advisory services offered through LPL Financial, Member FINRA/SIPC
Most of our
requests
focus on the
Department of
Developmental
Services (DDS)
and we ask
that the Legislature hold
on parts of
the Governor’s
request while
asking for additional monies for several
line items. Please download our
fact sheet (or we will mail it to you
upon request) but in the meantime
here is quick list of line items for
which we ask for new monies:
• Autism Division -- $3 million
more, some for autism support
center staffing
• DESE-DDS - $2 million more
• Family support/respite – hold
Governor’s amount
• Employment - $6 million more
• Turning 22 - $8.7 million more
(total $15.2 M)
• Line items not here – hold funding as in Governor’s budget
Beyond the budget there are
several bills and one national
development which we report on
in this issue. In this article we focus
on the bill to expand eligibility to
those with developmental disabilities and the Real Lives bill.
The expanded eligibility bill is now
“An Act to Permit the DDS to Provide Services to Persons with Developmental Disabilities” and it has
a new number, H. 3715. It is now
waiting in the House Health Care
Finance Committee and hopefully
will proceed to the full House.
The “Real Lives” bill faces a less
clear path. The Senate Chair of
Children, Families and Persons
with Disabilities, Michael Barrett,
chose to draft a new bill. We appreciate the speed at which the
bill was drafted but it has some
continued on page 7
6
Government Affairs
Governmental affairs -- affecting your life
contd from p. 6
significant differences from the
initial bill.
We will work for passage of the
Real Lives bill and if a compromise
can be worked out, that would be
great. Self-determination is already
happening in Massachusetts and
we want to ensure we have a bill
that encourages its reasonable
growth instead of continuing a
system which is overwhelmingly
“slot” based.
In positive Social Security news
during the week of March 3, Senator Sherrod Brown (D-OH) and
Senator Elizabeth Warren (D-MA)
introduced the Supplemental
Security Income (SSI) Restoration
Act of 2014 (S. 2089; “SSI Restoration Act”). This addresses the
stagnant earned income and asset
limits which have discouraged
employment for years! Last year,
Representative Raul Grijalva (D-AZ)
introduced similar legislation in the
House (H.R. 1601; SSI Restoration
Act of 2013). S. 2089 proposes to
update and index to inflation the
SSI earned income and general
Berkshire County Arc introduces
new accessibility icon
The Arc of South Norfolk’s Family Autism Center
was created in 1996 by a dedicated group of parents
to meet the needs of people diagnosed with
Autism Spectrum Disorders and their families.
Today, Family Autism Center serves over 600 families
throughout Norfolk County by offering the following programs:
•
•
•
•
•
•
Outreach Services/Information & Referrals
Advocacy & Assistance
Family Support
Resource Library
Education and Training For Families and Educators
The ALEC Program (Autism & Law Enforcement
Education Coalition)- Specialized training for First
Responders
For more information and to become involved with Family
Autism Center, please contact The Arc of South Norfolk at
781-762-4001 www.arcsouthnorfolk.org
Family Autism Center is one of the 7 DDS-funded autism
support centers in Massachusetts
Achieve with us.
income disregards, update and index to inflation the SSI asset limits
(from the current levels of $2,000
for an individual and $3,000 for a
couple to $10,000 for an individual and $15,000 for a couple), and
make other improvements to the
SSI program that simplify administration and support beneficiaries.
The Arc strongly supports this important legislation to update and
strengthen SSI.
Berkshire County Arc (BCArc) is excited to announce that the
accessible parking lot spaces in front of the Main Building
have been updated to reflect a new image! The new icon
displays a person with a disability in forward motion. The
introduction and implementation of this new icon, which is
a significant improvement over the previous image, which
displayed an individual in a static position, would not have
been possible without the efforts of advocacy of BCArc’s Brain
Injury Department. BCArc has become one of the pioneers
in advocating for
use of an updated
version of the icon,
which truly reflects
people with
abilities, not
disabilities. The
accessible parking
spaces at all BCArc
sites are in the
process of being
replaced to include
the updated icon.
Chris Moss gives his “two thumbs up” seal of approval on the new logo.
Pictured with him is BCArc’s Executive Director Kenneth W. Singer and Kara
Rogers, the Brain Injury Site Manager at North Main Street, Lanesboro.
7
Government Affairs
contd from p. 1
The present plan focuses on approximately 2,600 people who
are in facility based employment
services (“workshops”). Of those
1,251 attend workshops full-time.
Typically individuals in these settings work on piecework such as
packaging, mailings or putting
together small parts of a product. Much of the manufacturing
firms in the United States which
helped supply this work have
moved to other countries. Consequently there is less work and
more “down-time” which, if not
effectively addressed, results in
drawing or nap-time. The funding
for workshops is limited, with staff
ratios ranging from 1:10 to 1:16.
This doesn’t leave much room for
individualization.
Recently, the Human Services
Research Institute reported that
over 50% of individuals with intellectual/developmental disabilities
surveyed nationally would like to
have a paid job. Over 70% of the
same survey group didn’t even
have the goal of a paid job in
their Individual Support Plan. It
may take time to assist people to
obtain jobs, but it’s not going to
happen if the goal doesn’t appear
in one’s support plan.
There are two other aspects to
the workshops that are important to understand in relation to
the “cultural change” and legal
8
realities since the ADA. Workshops
can obtain special Department of
Labor certifications to pay people
sub-minimum or commensurate
wage. Time studies are performed
on each job introduced in the
workshop and attendees get paid
based on their work pace. Many
(most?) workshop attendees earn
less than $20 per week due to this
factor and the lack of sufficient
piecework.
A second issue is the fact that the
facilities or workshops are segregated. Perpetuating segregated
work settings is contrary to the
ADA and Community First policy.
We accepted this reality in recent
years due to funding limitations.
But with the advent of the Olmstead decision, people with disabilities recognize that segregated
settings shouldn’t be the norm
and advocacy organizations like
ours agree that it’s time to grow
inclusion in the community.
Although DDS asked providers to
develop 5-year workshop “conversion” or closure plans in 2011,
providers may have felt that these
plans were not realistic since new
funding was needed in most cases
to implement them. Over 10
years ago, the Berkshire County
Arc chose to close its sheltered
workshops using a number of
strategies. Others have started
including, Work Inc. based in
Boston.
Of course there will be “grieving”
over the old way of doing things.
But there is good news in the Blueprint for those who are grieving.
You will have individualized support
services that you don’t have today.
The Blueprint places the emphasis
on people’s strengths. It asks us
to take a new look at those with
whom we work and to develop a
career plan for each person that
emphasizes his/her strengths,
learning needs and interests. The
plan includes community-based
day supports (CBDS) which is
one way workshop attendees will
receive individualized assistance.
These supports or CBDS reflect
different relevant categories.
Some are for job or career enhancement such as travel training,
community safety skills, working
on resumes, small social groups
to help with expressing needs and
interests, trips to cafes to increase
social skills during non-work time
(lunch, breaks, etc.). Other activities may relate to both work and
community inclusion—internships
at a pet shelter, council on aging,
high school, store, office, coffee
shop, etc. Other CBDS or supports
may have nothing to do with
work but relate to inclusion and
growth – these include exercise
classes locally, trips to museums
or other community sites, science
groups and sign language.
continued on page 9
Government Affairs
contd from p. 8
The Blueprint covers key areas for
systematically addressing this significant goal! It includes outreach
to stakeholders, training for staff,
training for agencies to make the
transition and a method for continual improvement. For example,
DDS has offered providers funding to hire consultants to help
each look at their organization
not only in terms of staff training
(job coaches, curriculum development, etc.) but also in regard to
changing business models. Each
provider is different – some may
have 100 or more in their workshops while others may have only
25 to 40 people. The change to
their organizations will vary based
on that reality.
The plan also includes “Employment Collaboratives” where agencies will partner to find jobs for
those whom they serve. Staff at
the collaborative will outreach to
business on behalf of all agencies.
One staff member will approach a
Achieve with us.
big chain instead of five different
staff members from five agencies approaching it. This type of
combined marketing has worked
in two parts of the state. Funding
also has been set aside for benefits
training and individual consultation. Individuals will be able to
address their questions about
how their income will affect
social security, MassHealth and
other benefits.
The Blueprint is a 4-year, $26.7
Million dollar plan. It sets a
foundation for
future young
people entering the adult
employment
system funded
by DDS. The
first year funding needed is
$11.1 Million.
Your advocacy
involvement
can make a
difference in obtaining the full
funding needed.
The “Blueprint for Success” allows
Massachusetts to be proactive and
direct its own destiny for employment of persons with intellectual
and developmental disabilities. By
working proactively and responsibly, we can focus on what are
valued goals for all of us: employment and community inclusion.
See related article on “The
Friendship Corner” page.
9
Operation House Call
Meet Operation House Call’s
Parent-Instructors, Part 2
Editor’s Note: Part 1 of this article appeared in the Winter 2014 issue of Advocate.
One clear reason for the success of
Operation House Call – the innovative training program which each
year teaches more than 300 medical and graduate-level allied health
students essential skills to enhance
their health care of persons with
intellectual/developmental disabilities – is the dedication of the
parent-instructors who bring their
expertise and passion to their
classrooms.
The program, which began more
than 20 years ago at Boston University School of Medicine (BUSM),
aims to introduce third-year
medical and allied health students
to individuals with special needs
and their families. Its underlying
premise is that families can be the
best teachers when they share
their experiences with students.
In addition to BUSM, Operation
House Call is now offered at Tufts
University School of Medicine and
Simmons School of Nursing and
Simmons Masters Candidates
10
Health Sciences. At each of the
three educational institutions,
the program is anchored
by a parent-instructor and a
self-advocate.
Advocate spoke recently with
each of them: Melanie McLaughlin (Tufts University School of
Medicine); Maura Buckley (Boston
University School of Medicine)
and Ann Bersani (Simmons School
of Nursing and Health Sciences).
Melanie was featured in Part 1 of
this article. This issue highlights
Maura Buckley and Ann Bersani.
Maura Buckley and her family
have been involved with OHC
since they became a host family about 5 years ago. Two of her
three children – a 12-year-old son
and a 9-year-old son – have both
autism and mitochondrial disease,
presenting significant communication and behavioral issues. “I
think it’s important for the medical
students to have the experience of
dealing with kids who have a comorbid diagnosis,” she
says, “because it allows
them to see beyond
the behaviors and to
recognize the importance of a collaborative
approach to patient
care.” For example,
it’s often eye-opening
for the students to
confront the fact that
what may seem bizarre
behaviors may be related to a
specific medical issue such as pain.
Maura herself was a LEND Fellow,
and concentrated her capstone
research project on “autism plus”
– autism plus a medical condition.
(The LEND program is a graduatelevel interdisciplinary training
program that prepares students,
fellows, and other health professionals to assume leadership roles
in their respective fields, and to
ensure exemplary health care and
related services for children with
autism and other developmental
disabilities and their families.)
The home visits involved the
entire family, and Maura feels
her 15-year-old daughter has
benefited from them, since the
visiting students would often direct
questions to her and valued her
observations and her perspective
as a sibling. Because the OHC
program is mandatory for all thirdyear students at Boston University
School of Medicine – which means
a large number of students must
be accommodated each year – the
Buckleys still “pinch-hit” when
needed for home visits.
About two and a half years ago,
Maura’s primary role switched to
that of parent-instructor. Maura
teaches nearly 200 students a year
in 8 different sessions, with 20-24
students per session. The students
take the class prior to making their
SUPPORTING
THE ARC
AND ALL
YOU DO.
It’s what we do.
Over a decade ago, Commonwealth Care Alliance pioneered a model of care to help
people with disabilities live healthier, more independent lives. Today, we support the
vital work of The Arc of Massachusetts, and are proud to be part of the new One Care
program as an approved plan. Healthy is harder for some. That’s why we’re here.
If you or someone you know receives
MassHealth and Medicare, call 866-610-2273
or visit commonwealthcarealliance.org.
CCA030 (8/13)
Achieve with us.
11
Meet Operation House Call’s Parent-Instructors
contd from p. 10
Co-teacher Matthew Cullen with a Boston University School of Medicine class.
the class. By then, she says, the
students are really ready to engage, ask questions, and discuss
issues. She praises the courage of
the co-teachers she has worked
with, commending them for their
openness and honesty. Operation
House Call provides an abundance
of additional resources for the
students to expand their understanding. Following the class, for
example, the students participate
in an ongoing
chat room,
Lexington, MA
describing
www.cotting.org
their home
“...special education, done right.”
781-862-7323
~ Cotting Parent
visits and
sharing their
School Year Program
experiences.
September to June
Ages 3-22
Maura has
been deExtended Year
HOPEhouse
lighted to see
Summer Program
Residential/Transitional
Ages 3-22
Ages 17-22
OHC expand
Elizabeth Russell ~ Director of Admissions ~ [email protected]
beyond its
home visit, and they agree that the
class is an important component
in their preparation, giving them
a better idea of what to expect. As
part of the class, Maura screens a
video that shows her family interacting with the team of specialists,
both medical and behavioral, that
is so essential to the wellbeing of
her sons. She works closely with
a co-teacher – a self-advocate
who comes in toward the end of
Cotting SChool
12
original BUSM setting, and hopes
it will continue to do so. She notes
that the recent report of the Massachusetts Autism Commission
pointed to Operation House Call as
an example of a valuable program
that works to increase the number
of health care “providers who are
knowledgeable about autism and
other developmental disabilities”
and thus play a role in improving
the delivery of health care services
for these underserved populations.
Ann Bersani became involved with
Operation House Call through her
connection with Sarah Cullen, a
staff member at the Massachusetts
Down Syndrome Congress who
had been a host home volunteer.
Ann says she is always looking for
opportunities to educate people
about developmental disabilities, so she eagerly accepted the
Meet Operation House Call’s Parent-Instructors
contd from p. 12
invitation to serve as a host family
for OHC. Over the years she and
her family have hosted 10 or 12
medical students. More recently,
when Simmons College decided to
launch a pilot program through its
School of Nursing and Health Sciences, a graduate-level program,
Ann became its parent-instructor.
Her son, Brendan, who is now 20
years old, sometimes works as a
co-teacher.
result, the Simmons students are
able to get a picture of the lives
of people with disabilities when
they live outside their family home.
The students are often older than
those in the medical school OHC
courses and may have had more
experience with people with disabilities. The Simmons curriculum
also includes a new component on
“Inter-professional Competency,”
designed by Simmons faculty.
The Simmons OHC program differs
from the ones at Boston University and Tufts University in several
ways. Unlike the other two, which
are designed for medical students
and have a pediatric focus, the
Simmons program is a Masters
program for nurses, nutritionists
and physical therapists and focuses
on adults with disabilities. As a
Because the Simmons program is
interdisciplinary, the students learn
a great deal from one another.
Each has to write a blog of at least
400 words about their home visit
experience. Since Simmons is the
newest of the three OHC programs
and varies in the ways described
above, it has been interesting to
get feedback from the students.
OHC Dollar Matching Gift: Any
donation earmarked to OHC will
be matched dollar for dollar to a
maximum of $5,000 in matching
funds for this academic year. This
means a contribution of $50 will
equal $100 for OHC. With a maximum of $5,000 in matching funds,
we can reach $10,000 in additional
support for OHC if enough of our
readers participate. This total can
be reached easily given our reader
base of more than 8,000. If 100
people give an average of $50, we
would reach our goal through this
program (200 people at $25 and
so on!)
Matching Gift to Recognize Host
Families: This matching gift recognizes
the valuable contributions which host
families make to the program when
they allow medical and other health
graduate students into their homes. In
1994, John and Susanna opened their
home to OHC. They appreciate the effort families make when they take the
time to educate. Without our volunteer
families, Operation House Call would
not exist. The participation of host
families will be recognized with a gift
of $25 per home visit up to a maximum of $5,000 during this academic
year. With more than 300 students
every year, the program requires many
Achieve with us.
The feedback has been extremely
positive, and some have indicated
that the course has had a definite impact on their careers. One
student, for example, has taken a
job as a nutritionist with the Down
Syndrome Clinic at Massachusetts
General Hospital. Ann shared this
news with a subsequent OHC class
as well as with Simmons faculty
members with whom she collaborates, and they were excited to
hear it.
Ann and her family still participate
in OHC’s home visits from students
at BUSM and Tufts, a source of
great satisfaction. She was especially pleased when one student
commented that she expected to
see anger and resentment during
her home visit but instead, she
said, “You’re just a normal happy
family.”
home visits! Again: this grant
program will also run for three academic years beginning June 2013.
Please consider participating. Your
gift will be matched. You can give
online (please make sure you note
OHC) or call us and request an
envelope (781-891-6270, extension
100). And you can contact us if you
are considering becoming a host
family, too. Feel free to email us for
either reason at arcmass@arcmass.
org and put OHC in the subject
line. Learn more about OHC at
arcmass.org/ProgramsatTheArc/
OHC-HealthCareProject
13
Get ready for the 4th annual All Aboard The Arc!
contd from p. 1
Hines and Ash & Bloom performing their music live onstage. We
are delighted that Comcast
Business Class will once again
be our primary statewide partner
for this event.
Rally for Inclusion. We are
ALL meant to shine.
All Aboard The Arc! is a statewide
pledge event in which anyone can
participate – individuals, families, community members, local
leaders, supporters of The Arc,
students, and employee groups.
Please join with others from all
across Massachusetts in focusing
public attention on the abilities
and needs of people with intellectual and developmental disabilities
and their families. Come to Boston
Common on May 7th and join
the fun!
The 2013 All Aboard The Arc!
event raised nearly $250,000
The goal for the 2014 event is
$500,000. All Aboard the Arc! is
not only a great fundraiser and
awareness builder, but an opportunity for corporate partners to gain
extensive community visibility, as
well as network with new potential
partners, enhance team spirit, and
develop employee morale – all
while assisting people with intellectual and developmental disabilities
and their families across the
Commonwealth.
Don’t miss this inspirational event
supporting human rights and the
elimination of discrimination of
all people with intellectual and
developmental disabilities and
their families!
If you would like to take part in
the 2014 All Aboard The Arc!
event – as a participant, sponsor
or corporate partner – contact
(781-891-6270) or visit our
website: www.allaboardthearc.org
Please note: All participants who
raise $300 or more for All Aboard
are automatically entered into a random drawing to win one of 2 iPads.
For every additional $300 raised, an
additional entry will be made on the
participant’s behalf.
Economised
Time Services
Customized Software Applications
Developed Through 25 Years of Support
to Human Service Agencies
ETS offers data
processing systems
and services solely
for human service
agencies and nonprofit programs.
One Care program roll out has begun!
We are available to bill Fallon, CCA
and Network Health.
P.O. Box 2404 • Acton, MA 01720
tel (978) 635-9144 • fax (978) 635-0361
[email protected] • www.etime.net
14
Save These Dates
Be sure to mark your calendar for these
important events. Visit our website
(www.arcmass.org) for details
May 7 – All Aboard The Arc! Boston Common
11:00 a.m. Rally and Entertainment
September 20 – “Transition from School to
Adult Life”
All-day conference for families at Hogan Campus
Center, College of the Holy Cross, Worcester
October 23 – Dinner and Auction,
Westin Hotel, Waltham



Achieve with us.
15
Friendship Corner
Michael Briggs, 16-year-old with Down’s
syndrome, inspires while playing the sports he
loves for Andover High
By David Willis, Eagle-Tribune
his face as he
races back on
defense. “This
close,” he
says, holding
two fingers
close together
with a laugh
as he walks
off the court,
a teammate’s
arm over
Michael Briggs on the court
Michael Briggs races though the
pregame warm-ups lines effortlessly. Dressed in his blue and gold
Andover High warm-up jersey and
shorts, he fires up a shot, then
hustles to scoop up a rebound
from a teammate’s miss, receiving
high-5s along the way.
As the game progresses, Briggs
cheers on his teammates from his
seat at the end of the bench, next
to JV coach Alan Hibino, rising
during timeouts to pat a teammate
on the back and offer a word of
encouragement.
Finally, with just under a minute to
play, Briggs removes his warm-up
to show his white No. 45 jersey.
He positions himself in front of
the scoring table to check into the
junior varsity game between Andover and Methuen. Not long after,
Briggs receives a pass and takes his
only shot of the game. It rims out,
but that cannot erase the smile on
16
each shoulder.
For Briggs, who was born with
Down syndrome 16 years ago,
basketball is more than just a sport.
“His knowledge of basketball is
amazing,” said Michael’s father,
David Briggs. “If he isn’t playing
basketball or at a basketball game,
he is probably watching a game on
television or playing basketball on
X-Box. He truly loves basketball.”
This winter Michael, a sophomore
at Andover High, is a member of
the Golden Warriors JV basketball team, living out his dream of
playing the sport he loves for his
high school, a team that has truly
embraced him.
“I love playing with my team and
I love basketball,” Michael said.
“They (the team) like me a lot.”
Why wouldn’t they? Briggs’ smile
is heart-warming, his laugh and
energy infectious. His joy is natural,
without a hint of insincerity.
“Michael is amazing,” said Hibino.
“He brings such a positive energy
and enthusiasm to this team. He
has a love for this game and a love
for this team that is really inspiring.
He is here every day, working with
the kids and interacting with them.
“He loves the team and the team
loves him. He perfectly represents
what it means to wear an Andover
basketball uniform.”
Michael Briggs was born to fall
in love with basketball. The same
year that mother Kim gave birth to
Michael, his father, a lifelong basketball fan, first purchased season
tickets for the family to the Boston
Celtics.
“The first year I bought them was
the year Rick Pitino was hired as
head coach,” said David, who
played basketball at Lexington
High and whose Boston Cafe & Catering worked with the Celtics for
many years. “That didn’t work out,
but we have had them ever since.”
“By the time Michael was 3 or 4
years-old, we started bringing him
to Celtics games and he has been
going ever since. He goes to every
weekend game and we sneak him
into a few weeknight games. He
doesn’t miss a beat during the
game. He knows all the players
on every team and he does every
cheer.”
Friendship Corner
Working towards friendships
By Mary Ann Brennen and Jim Ross, The Real Friends Project
“Coming together is a beginning; keeping together is progress;
working together is success.” Henry Ford
The Massachusetts Department of
Developmental Services is working
with their day and employment
program providers to offer the
people they serve more full time
and part time employment and
day supports in the community.
Some benefits that can come from
this initiative are better wages, a
job or activity more suited to a person’s interests or skills, or working
at a place closer to home.
A good pay check and meaningful
work are important. But this initia-
tive is also an extraordinary opportunity for parents, individuals,
job coaches and others to seriously
think about the social aspects of
work and day supports. Planning
needs to include supporting people
to maintain current friendships and
develop new relationships in the
workplace and community. Community is a place where there is
interaction, fellowship and common interest. These are the characteristics that lay the foundation for
friendships and relationships.
Michael Briggs
As this initiative unfolds we encourage each individual/family to be
actively involved in the personcentered career plan with respect
to both employment and social
goals. This is an exciting time for
people with intellectual disabilities
who will now have new and better
opportunities to become part of
the workforce or to have a broader
range of day options. It is also fertile ground for new friendships and
relationships.
We Can Help
contd from p. 16
Early in Michael’s childhood, his parents placed a strong
importance on integrating their middle son into the
Andover community, where the family has lived since
1986. They found a perfect match for Michael in Andover’s Hooptown basketball camp, run by Golden Warriors
varsity coach David Fazio.
“We have always pushed for Michael to be in the mainstream because that is the world he will have to live
in when he gets older,” said Kim, a speech language
pathologist at the Professional Center for Child Development in Andover. “We felt like Hooptown would be a
perfect testing ground. Michael loved basketball, why
not start with Hooptown?”
Any early concerns David and Kim had about how their
son would be welcomed into the Andover basketball
community were allayed when Michael arrived at the
basketball school. “The kids were just unbelievable to
Michael,” said David. “You never know how anyone is
Achieve with us.
• Special Needs
Planning
• Transition Planning
& Adult Services
• Guardianship
& Considering
Alternatives
• Advocacy
For more information call our Special Needs Practice Group
leader, Frederick M. Misilo, Jr., at 508.459.8059 or email
him at [email protected].
Worcester | Framingham | cape cod
Visit our new website: fletchertilton.com
17
Friendship Corner
Singing his part
By Daphne Romanoff
Ben Chelminsky
Most parents think back on their
kids’ childhoods and it feels like a
blur — it goes by so quickly. It’s
like that with my daughters, but
not so much with my 23-year-old
son, Ben. Ben is autistic – not high
functioning, rather somewhere in
the middle of the autism spectrum. In his case, this means that
he lacks some basic social and
communication skills necessary for
him to function independently.
It’s been a very slow, constant,
incremental struggle to teach him
how to live in our world, not his
own.
Ben is at the tip of the large autistic population which has been
more included
in society than
ever before,
first in public
education,
now increasNew England Village that is!
ingly in the
Our Village was founded in 1972 by parents seeking an
workplace.
enlightened new model of community living for their adult
“Special” and
children with intellectual and other developmental disabili“inclusion”
ties. Today, 79 residents live on our Pembroke campus and
we serve more than 75 others through our day habilitation,
have been
employment and community programming.
pendulum
We currently have openings and are accepting private and statepoints all of
sponsored referrals.
Ben’s life.
Call (781) 293-5461 x103 or email [email protected]
Although
to schedule a tour or to request information.
some autistic
children can
New England Village
be successfully
• Pembroke • Hanson
included in
• Kingston • Plympton
regular classes,
www.newenglandvillage.org
Ben has needed intensive,
specialized
training in the
nuts and bolts
Come Home to
New England
issues of eye contact, attention,
behavior management, language,
academics, vocational training,
and more.
Ben has been trained and now
works independently in regular,
busy kitchens — not segregated
work enclaves. Working alongside
his co-workers, he can fill containers with mayonnaise, chop
carrots, follow a simple recipe,
and take out the trash. Ben loves
music and has always been very
attuned to auditory sensations.
In fact, music can be distracting
to him in some of the food prep
jobs he’s worked at — he’ll start
singing and forget to cut the
croutons.
Now that he has become an adult
and aged out of publically-funded
education at age 22, I’ve felt like
I can step back and reflect upon
Ben’s experience as a whole.
Although he has accomplished a
lot, poignant questions still loom:
How will he progress as an adult?
How will he find pleasure in life?
Where will he fit in? Where will he
find harmony?
He did not have to go far, as it
turns out. Ben’s ultimate inclusion
activity is singing with our local
community choir.
The Newton Family Singers is an
intergenerational group of singers
whose repertoire spans traditional
American folk through more
recent pop. The singers range
18
Friendship Corner
Singing his part
contd from p. 18
from age 5 to more than 70. They
are a neighborhood group, with
no auditions to join, yet they
took a gamble by admitting Ben
into their choir. We had visited a
number of choirs in search of a
place where Ben was most likely
to succeed and to push him to
that next step beyond his comfort
zone – and mine.
While the Newton Family Singers
have made no special accommodations for Ben, he has been
welcomed as a member of the
choir. Having a deep voice, Ben
sings in the bass section and his
fellow bass singers help him when
he needs it. They support him and
he’s learned to respond to their
prompts to pay attention and to
find his place in the sheet music.
I don’t think Ben can form friendships as such but I know he looks
forward to seeing the other basses. Furthermore, they’ve come to
accept Ben as one of their own.
Things aren’t perfect. I hear Ben’s
voice when he comes in too early
and I notice when he somewhat
subtly flicks his fingers – an old
autistic behavior of his. As part of
his disability, Ben does not understand that different people have
different perspectives. As a result,
he used to sing along with soloists, or the sopranos — whatever
part had the melody. He didn’t
recognize that people with different vocal ranges sang different
parts. Ben has been taught the
fundamental skill of imitation, and
Achieve with us.
he knows that applause is expected after performances. That’s why,
if you attend one of our concerts,
you will see one young man in the
choir clapping along with the audience at the end of every song.
Maybe one day he won’t clap
with the audience, one day he will
understand the different perspectives of being a performer versus
an audience member.
This past season, however, Ben
has learned that he is a bass and
sings from that perspective. He
listens to the other parts of the
choir and understands the harmony that makes beautiful music.
Maybe by singing in harmony,
Ben is learning perspective taking
through song.
I no longer come to rehearsals as
Ben’s aide; caught up in the music
and friendly faces, I’m now a
soprano singing with the Newton
Family Singers. I rehearse at the
opposite side of the choir, with
an eye on Ben from afar. We have
two entirely different parts to sing
and Ben learns his lyrics much
faster than I do.
Time continues to speed on, and
Ben’s progress still moves in slow
motion. But slow doesn’t mean
standing still.
He’s on stage, and he’s singing
his part. In harmony. With his
community. And with me.
For more information about
the Newton Family Singers,
visit their website http://www.
newtonfamilysingers.org
PLAN
of Massachusetts and Rhode Island
For over thirty years, providing peace of
mind to individuals with disabilities and their
families, through individual trust management
and social services.
PLAN administers a self-settled and a third-party
Special Needs Pooled Trust for the benefit of
people with disabilities.
Offices
1340 Centre St., Suite 102
Newton Centre, MA 02459
(617) 244-5552
28 Spring St.
Pawtucket, RI 02860
(401) 330-7456
www.planofma-ri.org
19
Friendship Corner
Michael Briggs
contd from p. 17
going to act. You never know how
the kids or the program are going
to react. But they accepted Michael
as a member of the family. Our
only regret is that we didn’t take
him to Hooptown earlier. But we
are glad we did because of all the
joy that it has brought to not just
our family but the entire basketball
community.”
Now a fixture at Hooptown — first
alongside older brother Christopher (now 19) and eventually with
younger brother Jonathan (10
years-old) — Michael had a new
dream when he arrived at Andover
High as a freshman last year. He
wanted to play basketball for the
Golden Warriors.
After some initial concerns there
might not be a spot for Michael,
David decided to be proactive.
David said, “So we went directly
to Fazio. Our older son had played
JV basketball for Faz, so he wasn’t
a total stranger.His reaction and
the reaction of the program were
beyond what anyone was expecting. Faz had no reservations about
making him part of the program.”
Briggs would need a coach to work
with him as a one-on-one aide, a
job that was happily taken by Sanborn Elementary School physical
education teacher and freshman
football coach Ben Gibson. “Mike
is such an awesome kid,” said Gibson, known affectionately as “Gibby” to Briggs. “His being here is
something that is great for Michael
and great for all of the kids on the
20
team. They all work together as a
team and learn from each other.
Mike is a goofy, likable kid. Plus, he
has been in school with these kids
since elementary school.”
sold-out crowd of more than 1,000
fans prepared to watch the varsity
game when Briggs took the court
in the closing moments of the JV
game.
As a freshman, Briggs played
on the Andover freshman team,
coached by Michael Votto, seeing
playing time at the end of games
already decided by lopsided scores.
“Freshman year was a great year,”
said David. “Michael had a great
time. In a game against Phillips,
I have never seen anyone get up
so many shots in such a short
time. But he showed his basketball
knowledge because he was keeping track of the clock. He made
sure to get a final shot off right
before the buzzer.”
Briggs then took a pass and
knocked down a short jumper,
sending the capacity crowd into
hysterics, with fans of both teams
rising to their feet and applauding
as if he had just won a state championship. The Andover student
section loudly chanted “Michael!
Michael!” and more than a few
spectators had tears falling down
their cheeks.
Once this winter arrived Michael,
now a sophomore, followed many
of his classmates to a new challenge on the court, playing for the
JV team. “He is a sophomore and
the natural move was for him to go
to the JV team,” said Hibino.“We
are thankful he wants to be part of
this program. He loves the game
and has worked so hard to earn his
spot on the team.”
The dream shot
As the ball left Briggs’ hands and
sailed through the net, the entire packed house at Dunn Gym
erupted into cheers.
It didn’t matter that the junior varsity game between Andover High
and archrival Central Catholic on
January 10 was well out of reach.
The gym was already stuffed with a
“It was unbelievable,” said his
mother, her eyes misting with
emotion.“You are already so proud
of what he did. But then the crowd
reaction and (the Andover High
student section) The Jungle chanting his name, it is just something
you never imagine. You knew he
had done something special.”
Michael’s father was equally emotional. “I still have goose bumps,”
said David, who coaches Michael’s
Special Olympics team. “This is
something we never expected.
Michael has scored in games before, but never in front of a packed
house like that. I was so happy for
him. It was really incredible.”
His family wasn’t the only ones
touched. “I know I saw a few tears
in the stands,” said Hibino. “I was
so proud to be his coach and the
kids were proud to be his teammates. For the entire Andover
Supportbrokers
Unsure what to do before your son or daughter
reaches age 22?
Transition is about planning for life.
The transition your son or daughter
will make from school to adult life
in the community is a long journey
beginning at age 14 through 22
years. Transitional services include
postsecondary education, vocational
education, integrated (and supported) employment, continuing
adult education, adult services, and
independent living or community
participation.
If you want one-on-one help from
a transition expert, sign up for a
problem-solving session provided
by SUPPORTbrokers of The Arc of
Massachusetts. A broker will help
you tackle problems and propose
solutions by brainstorming ideas
and giving you options, guidance,
Michael Briggs
contd from p. 20
community to support him like that was really special.”
One moment especially stuck out to Gibson. “One of
the best parts is that one of the other kids, D.J. Minor,
said to me after Mike hit the shot, ‘That is the best assist
I will ever have,’” he said. “To hear him make a comment like that really shows that he gets it. The kids fight
harder than ever to try to get Mike the ball so he can
take another shot.”
Briggs hasn’t stopped shooting since. Entering contests
when the game is out of reach, he recorded two baskets against Lawrence on January. 24, and on Friday he
sank a shot against North Andover. “There is no holding
him back,” said Kim. “We asked Faz how he felt after
his freshman year and he told us, ‘Michael is golden for
the next four years.’” For Michael, every shot counts. “I
love to shoot and when I can make a swish I am really
happy,” said Michael. “And being out there with my
friends is fun.”
For a video feature on Andover’s Michael Briggs,
visit eagletribune.com/sports or youtube.com/user/
theeagletribune Editor’s Note: This is an abridged version of a longer
story that first appeared in the Eagle-Tribune on
February 9, 2014. We are grateful to David Willis and
the Eagle-Tribune for permission to reprint it in Advocate.
Achieve with us.
and resources
geared toward
your child’s
needs, strengths,
preferences, and
interests.
One hour, individualized clinics will
be provided at The Arc of Massachusetts (217 South St. Waltham
02453) on a monthly basis. Clinics
will also be available in Central
Massachusetts beginning this
spring. Visit The Arc’s website for
the current Transition Clinic dates
and locations. Cost is $50 per hour.
Anyone who has a son or daughter
with an intellectual or developmental disability is welcome to register
for a session today by calling or
emailing Kerry Mahoney, Director
([email protected] or
781-891-6270 ext. 109).
MAKE
YOUR PLAN
BECOME
A REALITY
The mission of the SUPPORTbrokers
program is to assist individuals with
disabilities and the elderly to
achieve community
membership based upon
their personal vision
217 South Street
Waltham, MA 02453
Phone: 781.891.6270 EXT109
E-mail: [email protected]
www.supportbrokers.org
21
SupportBrokers
Who are the SUPPORTbrokers?
A Support Broker is someone you
hire to find supports you need to
help you at home, school, your job,
and community. Most people who
use Support Brokers are persons
with disabilities and/or families supporting someone with a disability.
Support Brokers know how to get
different kinds of help and support.
They can help you find transportation, a place to live, someone to
help you with daily living skills, or a
job counselor, or they can link you
with your community, help with
social security or health insurance,
and many more things.
A Support Broker will spend time
with you to learn about your needs
and goals. The Broker will help you
write a plan to get the supports
you need. First, the broker helps
you describe the supports you
decide you need. Then, the broker
helps you find those and put them
into place.
Here are two of our current
SUPPORTbrokers
Pat Pakos has dedicated her life
to educating and improving the
lives of individuals with disabilities, initially in her role as a Parent
Educational Advocate, then as a
school PAC president for six years,
a board member of the Federation
for Children with Special Needs for
five years, the founder of an afterschool program for children with
special needs, (Project STAR), and
as a member of a DDS Children’s
Advisory Board. As her daughter
reached the age of 22, Pat and
22
Pat Pakos
her husband entered into the first
public/ private partnership with
the Department of Developmental
Disabilities in the Merrimack Valley.
This innovative partnership allowed
her daughter to remain in her own
home with 24 hour supports provided by DDS.
Pat has worked as a consultant
to school systems and has been
employed by the Department of Elementary and Secondary Education
as an Inclusion Facilitator. She was
a facilitator on a supported work
pilot project on the North Shore
sponsored by the Department of
Developmental Disabilities and
Massachusetts Rehabilitation Commission. She recently completed a
three-year transition grant working
with three school systems and ten
families. Presently, Pat works for
The Arc of Massachusetts as a Support Broker focusing on Transition,
Person-Centered Planning and
the needs of the disability community. She sits on a DDS Adult
Advisory Council and the State
DDS Advisory Council. She earned
her M.S. degree in Severe Special
Needs from Simmons College with
Christine Shane, Ph.D.
a focus on Inclusion and her B.A. in
English Literature from the University of Maryland. Pat remarks “It is
very satisfying to assist families in
problem-solving and unlocking the
complexity of the human service
system, the disability world and the
special education system.”
Christine Shane, PhD. has served
as an advocate for individuals with
disabilities and their families for
many years. She is currently Chairperson of the Behavioral Sciences
Department at Fitchburg State
University and serves as Chair of
the State Advisory Council of the
Massachusetts Department of
Developmental Services. Dr. Shane
specializes in the evaluation and
implementation of programs for
children and adults with disabilities
and currently provides consultation
and training to schools and nonprofit agencies. She earned her doctoral degree from the Heller School
for Social Policy and Management,
Brandeis University. During her
graduate studies, she worked closely
with Dr. Gunnar Dybwad and Dr.
Wolf Wolfensburger.
News from the chapters of The Arc
Attleboro resident’s new-found friends
help him get back home
By Rick Foster, Sun Chronicle Staff
Bob Deshetres unexpectedly spent
two days in Detroit recently when
a blizzard delayed the disabled
man’s diverted airline flight. But
staff members of The Arc, a nationwide advocacy organization,
worked together across hundreds
of miles to make sure he got home
safely.
Deshetres, 68, of Attleboro, is intellectually disabled and had flown
to Florida in December to spend
time with his mother and sister. He
was due to leave on his return trip
on January 6, but his initial flight
was delayed and a substitute plane
was diverted to Detroit, where the
airport was soon shut down by
snow.
“I had to stay overnight in the airport,” said Deshetres, one of about
2,000 intellectually disabled persons served by The Arc of Bristol
County. “I had a blanket covering
me, but it was cold.”
Deshetres, who stayed in regular
phone contact with local Arc President and CEO Michael Andrade
and team supervisor Sandy Boyer,
quickly became the target of a
rescue effort linking Arc offices in
two states. Airport security personnel also got involved to help the
Attleboro senior.
Local Arc officials, unable to
find alternate transportation for
Deshetres, reached out to The Arc
Achieve with us.
of Dearborn Director Lisa Nygord.
Nygord went to the airport as
soon as she heard, and contacted
Deshetres. She and her husband
brought the 68-year-old to eat
at Chili’s and found him a hotel
room. They also returned the
following morning to shuttle the
weary traveler to his early morning
flight back to Providence.
Later that day, Deshetres arrived
safe back in New England. “It
seemed like it was a long time
since I’d seen my apartment,”
said Deshetres, who added he was
grateful to his Arc protectors.
The Arc of Bristol County Director
of Development Patricia Kirby said
the interstate effort on Deshetres’
behalf was heartwarming, but not
surprising. “People who are in this
work are in it because they care,”
she said.
Boyer said she found Deshetres’s
safe return and cooperation between agencies hundreds of miles
apart particularly rewarding. “I’m
just proud that the agency I’ve
devoted so much time to, being a
national organization, was there to
help halfway across the country,”
she said.
Deshetres said that in several trips
to visit Florida, this was the first
time he’s ever been marooned
in an airport. He said he doesn’t
harbor any fears about flying
again. “Probably not in the winter,
though,” he said. Editor’s Note: This story was originally published in the Sun Chronicle on January 31, 2014 along with
the photo by Mark Stockwell. We
are grateful for their permission to
include it in ADVOCATE.
There were several things that led to a positive resolution of what
might have been a dangerous situation for Bob Deshetres. First
and foremost, of course, was the kindness and resourcefulness of
so many people. But another important factor was the good sense
displayed by Bob himself. When Lisa Nygord first met up with him
in the Detroit airport, he said “I’m not going with you, I don’t know
you,” showing that he had mastered the lessons he had learned in
The Arc’s safety classes.” It was only when Lisa showed him her business card with The Arc logo that he relaxed, saying “Oh, I know The
Arc. I can go with you.” He also had Michael Andrade, President and
CEO of The Arc of Bristol County, confirm over the phone that this
was a safe person for him to go with.
23
Good training, skills building, education and
self-determination create opportunities for
self -advocate at The Arc of Greater Plymouth
(AEAC) organized and functioning.
The group meets weekly and their
mission is to find jobs for themselves and others while giving back
to the community. Leigh Ann’s
enthusiasm is contagious.
Leigh Ann Barry
Leigh Ann Barry came to The Arc
of Greater Plymouth looking for
meaningful work that would give
her lots of “people contact.” Leigh
Ann is friendly, energetic, ambitious and determined, and she is
an insatiable learner, committed to
earning her GED through the Plymouth Public Library tutoring service.
She has participated in paid internships at Old Navy, Chartwell’s at
Massachusetts Maritime Academy,
the Chamber of Commerce, and
Plymouth Fitness. Following her
internship at Plymouth Fitness, she
was hired part-time. Leigh Ann
is a natural leader and has taken
an active part in getting the Arc
Employment Services Committee
24
In June 2013 Mass Advocates
Standing Strong came to The Arc
of GP to present a workshop/training for self-advocates. In August,
the team, Explore-Prepare-Act, led
by Coordinator Ed Bielecki, sent a
letter requesting new team members for the Southeast Region Team
and Leigh-Ann responded. After
an initial interview with Ed Bielecki
and a second interview with members of the Explore/Prepare/Act
team, Leigh Ann was accepted and
began further training to prepare
presentations for speaking engagements throughout the Southeast
Region. The team’s mission is to tell
their personal stories and help others with developmental disabilities
find their own voice to speak up for
what they want and need.
Leigh Ann has always been very
passionate about advocacy on
behalf of herself and others and
participates in a self-advocacy
group at The Arc of Greater Plymouth. Noticing an unsafe section
of parking lot within Plymouth’s
Cordage Park, Leigh Ann began
writing letters to the management
company to ask for a crosswalk to
be put in place. After many letters she was indeed successful. A
crosswalk was installed making the
entire office park safer. With a peer,
Leigh Ann has been petitioning the
building management for a ramp
to be installed on one of the sidewalks heading towards a gazebo
that is used as a gathering place for
fire evacuation at Cordage as well.
Leigh-Ann and other individuals
have also visited the State House to
thank the legislators for their past
support as well as writing a letter to
the Governor about what disability
supports and services are important
to everyone in the group for the
2015 Budget.
Congratulations Leigh Ann. You
will be an exceptional addition
to the Southeast Region
Explore-Prepare-Act Team!
Target Your
Advertising
Minute Man Arc board leader
wins prestigious award
The Board President of Minute Man
Arc for Human Services in Concord was honored for outstanding
leadership by the Middlesex West
Chamber of Commerce on January
23rd. Nancy Graham, a Vice President of Middlesex Savings Bank
Commercial Lending, received this
prestigious award at the Chamber’s
annual Awards Dinner and Scholarship Fundraiser.
(L-R) Jean Goldsberry, MMA Executive
Director and Nancy Graham, MMA Board
President
“I am both honored and humbled
to receive this award,” said Nancy.
“Minute Man Arc is a wonderful
organization that works hard to
improve the lives of individuals
with developmental disabilities.
The agency is integral to the
wellbeing of our community and
I’m delighted to assist them in
improving lives of an underserved
but joyful population.”
Each year, individuals and businesses are recognized by the Middlesex
West Chamber for their outstanding
volunteerism, best business practices, dedication to those in need
and commitment to excellence
both personally and professionally.
The Chamber comprises an eight
town service area and more than
325 members. The Arc of Bristol County Launches Pooled Trust
In collaboration with Bristol County
Savings Bank’s Financial Advisory Services (FAS) division, The Arc of Bristol
County has announced a new financial solution for families of persons
with intellectual and developmental
disabilities and the elderly. The Arc of
Bristol County Pooled Trust is a very
useful estate planning tool to protect
an individual’s public benefits and still
save significant amounts of money
for their future use. By pooling funds,
each individual account in the pooled
trust yields more productive dividends for investments purposes in
accordance with the value of their
account balance.
“The Pooled Trust is a great option
for families of moderate income,
who wish to provide for their family
member’s future needs,” said Michael
Andrade, President and CEO of The
Arc of Bristol County. “Families do
Achieve with us.
not have to be associated with The
Arc to participate in the Pooled Trust.
We are happy to offer this service to
whoever needs this safe and affordable financial tool.”
Families are often faced with a
dilemma trying to assist a relative
who is dependent on government
assistance. Individuals with disabilities and the elderly may have needs
beyond what is covered with government benefits, but have few ways
to fund those needs without risking
disqualification from benefits. The
Pooled Trust offers a safe way to fund
supplemental needs without risk,
ensuring disbursements are made as
the family has instructed and compliant with MassHealth regulations.
The Arc of Bristol County and Bristol
County Savings Bank’s FAS, in its role
as Financial Trustee, will work closely
with individuals and family members to provide the guidance for
responsible life financial planning.
The Arc’s experienced staff extends
all stages of advocacy with individually focused support, and enrollment legal advice. The Arc’s Pooled
Trust ensures the needed reporting
and recordkeeping are completed,
so families can have be more at
ease regarding the supplemental
needs for their relatives.
“We look forward to continuing our
work with The Arc of Bristol County
as we enter the next stage of this
program,” said Patrick J. Murray,
Jr., President and CEO of Bristol
County Savings Bank. “As Financial
Trustee of the Pooled Trust, we are
excited about getting started and
helping local families gain peace of
mind about the financial future of
their loved ones.” 25
Go Outside!
By Brian J. Clark, Director, Family Autism Center, The Arc of South Norfolk
developmental
disabilities.
The term “naturedeficit disorder” was
coined by author
Richard Louv in his
book “Last Child in
the Woods” to describe what happens
to young people
who become disconThe Arc of South Norfolk’s Family Autism Center & Family Support nected from their
Center offer hiking programs, family campfires and outdoor-based natural world. Louv
activities
links this lack of nature to some of the
Spring arrives each year in New Engmost disturbing childhood trends,
land to cure the inevitable cases of
such as the rises in obesity, attention
Cabin Fever (or CF). CF typically ardisorders, and depression.
rives in November and can gradually
What better time to take advantage
worsen the condition of the afflicted
of what nature has to offer than
over the course of 4-5 months. Yet,
Spring in New England? A beautieach year Spring comes to the resful time of year. One of rebirth and
cue. It is up to each of us to fill the
prescription and take our medicine… renewal.
get up and Go Outside!
We have all spent what seems like
We live in a very technologically
driven society, especially in a country such as the United States. With
advances in technology, there have
come many benefits and innovations. However, these advances have
inadvertently led to the reduction
of time spent outdoors, especially
within nature. Many children and
adults spend more and more time
in front of a screen and less and less
time exercising or simply being in a
natural setting. We all could benefit
from more time enjoying the great
outdoors. This can be especially true
for individuals with ASD and other
26
a particularly brutal winter, holed
up in front of our tv, tablet or smart
phone, waiting for the temperature to rise. And that’s ok! I use my
smartphone all the time - a fabulous
invention. Technology has also been
extremely beneficial to individuals
with Autism and disabilities in general. It can help with communication,
learning, processing of information
and of course, provide entertainment. This should not be dismissed.
However, in my opinion, technology is taking up too large a portion
in the lives of our children. It is far
too convenient. There needs to be a
healthier balance between
technology and nature. There is
room for both.
Living in Massachusetts and New
England in general, we have the
benefit of many protected natural
spaces and parks within a short drive.
So, how about striking a technology/
nature balance? Go on the Internet,
use google maps, type in your home
address and take a look at all the
green spaces within 10 miles of your
house. You will be surprised. The
Department of Conservation and
Recreation in MA has a great website
where you can search for a park near
you. A simple walk in the woods will
do you wonders. Turn off your ringer
and just let your mind wander. And
it’s FREE!
For those with kids, you will be
amazed at the fun they can have by
just going in the woods. Let them
get dirty and tired. Let them spend
an hour of their lives not hearing a
car or seeing a house or building. For
those with physical disabilities, there
are a surprising number of parks
with paved pathways, as well. Being
in nature will allow our children to
relieve stress, heighten their senses,
lead to an appreciation of their world
and allow their mind to work in a
different way.
Then, if they want to watch some tv
after dinner, you won’t feel so bad.
That’s balance.
Go outside…no walls, no cars, and
no screens. Unplug for a little while,
its good for you!
Donna Jay: A passion for helping other people
By Susan Ring Brown, Northeast Arc
How important is independence?
“It makes me just like everyone else.
Not disabled. Like everyone else here,”
self- advocate Donna Jay said, gesturing around a coffee shop near her
Salem condo during a recent interview.
Donna’s determination and Northeast
Arc’s support of her goals have led to
a rich community life for the 57-yearold woman. She worked hard from an
early age to build the kind of life she
wanted.
“I was living at Hogan and I heard
that The Arc was opening a house
in Gloucester. I knocked on the door
and said I wanted to go. I got out of
there (Hogan) when I was 17,” Donna
recalled.
Once connected with Northeast Arc’s
residential services, Donna began
developing independent living skills,
learning with her Gloucester housemates how to be safe in the community and in the kitchen, budgeting and
other daily living skills. She tried her
hand at several jobs, including work
at a department store and a hospital
before her 27-year career at a plastics manufacturer in Salem. Donna
explored and developed her artistic
talents through ArcWorks, the art program offered through Northeast Arc’s
Recreation Department.
Today, Donna has her own condo,
with independent living supports from
Northeast Arc; has begun a second
career as a mentor; shows her paintings in local exhibits; serves as First Vice
President of Mass. Advocates Standing
Strong and raises money for people in
Achieve with us.
need. “I have my own
place and I love it. I’m
happy in the community. I got what I
want,” said Donna.
Her work as a mentor and with North
Shore Self Advocates
(a group she founded)
helps her neighbors
with disabilities get
what they want as
well. She has been
New Friends – Donna Jay (front row, third from right) with traveling
companions and new friends in Senegal. “The kids cried when I left.
a popular speaker at
I’m going to go back. You’re never done seeing things in Africa. ”
Salem High School
and for the Northeast
sweater off of her back. “They all need
Arc’s Transition Program, supporta friend,” Donna said of the children
ing students with disabilities on their
she met. “We’re rich compared to
journey to adult life. What advice does them. They have nothing.”
she give? “They need to think about
The trip provided Donna with a
what they want to do and ask queschance to utilize the skills she has
tions.” She says. If they are looking at
learned through The Arc and gave
a housing option with other roomher a chance to learn about a differmates “they should visit and see how
ent culture. Because of the health
they like the house. Go for dinner,”
care training she’s received from The
Donna recommends.
Arc, she was the only member of her
Donna speaks out on issues affecting
party not to get sick on the trip. She
people with disabilities at the State
enjoyed learning about her hosts’
House and is planning a trip to Washreligious customs and attending a
ington D.C. this spring. “I help people prayer service. “They wear scarves on
to have a voice,” she said.
their heads and long sleeves. It was
an honor to be invited to participate,”
Donna’s interest in helping other
said Donna.
knows no geographical boundaries. Last year, she raised money for
school, medical and personal supplies
for poor children in Africa. Then she
travelled with a group of neighbors
to Senegal to deliver the donations.
In addition to the supplies, Donna
brought four pairs of sneakers for the
children and literally gave them the
Like many of her fellow baby-boomers, Donna now finds trips without a
volunteer component less interesting.
In the future, she hopes to visit Haiti
with a relief organization. “That’s
what I love to do. To help other
people and still have a good time,”
concluded Donna.
27
Non-Profit Organization
U.S. Postage
PAID
Permit #121
Pittsfield, MA
217 South Street
Waltham, MA 02453
(781) 891-6270
www.arcmass.org
Achieve with us.
Bay Cove Human Services partners with The Arc on HealthMeet®
The Arc is pleased to announce
that Bay Cove Human Services, Inc.
(BCHSI) is becoming a partner on
the national project called HealthMeet®. The goal of HealthMeet®
is to reduce health disparities and
increase the longevity and quality of
life for people with intellectual and
developmental disabilities (I/DD)
by providing free community-based
health assessments and individualized recommendations for
follow-up care.
The project is part of a national
effort led by The Arc of the United
States, in partnership with the
Centers for Disease Control (CDC).
Through this project, five states or
regions of the United States have
the opportunity to pilot local health
assessments, provide assistance
with health care navigation, and
lead health promotion activities for
people with I/DD. “With cuttingedge technology and a network of
top-notch partners, this project has
the potential to uncover eye-open-
28
ing information about the health
of the millions of people with intellectual and developmental disabilities in this country,” said Peter V.
Berns, CEO, The Arc of the U.S.
“We are very excited that Bay Cove
Human Services is joining this collaborative,” said Leo V. Sarkissian,
Executive Director of The Arc of
Massachusetts. “It is a well-respected human service agency and its
work will advance the project.”
Mary Jo Cooper, Vice President
DD Services, BCHSI added. “We
are overdue for a comprehensive
study to determine, quantify, and
plan for the health needs of this
growing and aging population. It
is exciting and encouraging to be
part of this project.”
HealthMeet® in Massachusetts
is working across the Commonwealth from Berkshire County to
Boston. Nationally the project’s
additional partners are in North
Carolina, Pennsylvania, California,
and New Jersey.
List of Advertisers
The Arc of South Norfolk
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Commonwealth Care Alliance
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Economised Times Services
FletcherTilton
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New England Village
PLAN of Massachusetts
and Rhode Island
Riverbrook
Special Needs Financial Planning
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SUPPORTbrokers
Our advertisers help
support the mission of
The Arc of Massachusetts.

2014 Spring - The Arc of Massachusetts

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