2016 Winter - The Arc of Massachusetts

Transcription

2016 Winter - The Arc of Massachusetts
Advocate
Winter 2016
Governor allocates $5 Million in new
Family Support funding
The Governor’s proposed budget
for Fiscal Year 2017, released
on January 27, adds the highest
amount for family support from a
governor in two decades. An additional $5 Million appropriation
is a positive start for our efforts
to increase assistance to families.
We appreciate Governor Baker’s
decision.
As we went to press, staff at The
Arc were concerned about the
need for more funding in a number
of DDS accounts (Department of
Developmental Services) as well as
potential changes in Medicaid.
Leo Sarkissian, Executive Director,
noted: “We appreciate Governor
Baker’s support of families in his
budget blueprint. We will work
with House and Senate members
to more fully address the needs of
families, employment and adults
turning 22.
The “Supporting Families”
The Arc of Massachusetts
Celebrates 60 Years
our 60th
Anniversary
with more than
500 friends and
supporters. “We
are very grateful
for the generous
and enthusiastic
support we received from The
Arc community,
A gathering of some of the 60th Anniversary honorees
sponsors, our
donors, and local leaders,” said
On Thursday, November 19, 2015,
Executive Director Leo Sarkissian.
The Arc of Massachusetts celebrated
continued on page 4
Achieve with us.
campaign hopes to reach 5,700
families by the end of 4 years
through increases in Family
Support, DESE-DDS program
and the Autism Children’s Waiver.
Students turning 22 need
assistance through employment/
day, residential and transportation
line items after their first year. The
employment budget was short
nearly $11 million in the Governor’s budget – this not only affects
continued on page 21
Inside this issue...
Article
Page
Government Affairs....................13
Support Brokers.........................15
The Friendship Corner................16
Spotlight on: The Association
for Community Living................18
Education and Training..............21
News from the Chapters............22
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
Daniel Sullivan
President
Tracy Atkinson
Vice President
Deborah Norton
Treasurer
Kathy Ricciardi
Secretary
Frank Sally
Immediate Past President
Directors
Justin Bernard
Susan Lodemore
Martin Courage Seth P. Lopes
Jim Buss
Geoffrey Misilo
Katherine Craven Sean Morrissey
Tim Evans
Renald Raphael
Adam Hill
Kathy Ricciardi
Robert A. Hill
Janet Rico
Judi Kotanchik
Peter Tallas
Joe Andrade, Director Emeritus
The Arc of Massachusetts Staff
Leo V. Sarkissian
Executive Director
Maura Sullivan
Director of Government Affairs
Kerry Mahoney
Director of Education and Outreach
Charlie Fiske
Director of Public Policy
Katrin Aback
Director of Development
Christopher Jenkins
Financial Officer
Amelia Cordischi
Development & Digital Media Associate
2
In Memoriam: Florence Finkel
We celebrate the life and mourn the recent loss of Florence Finkel, who
passed away on November 9, 2015. The mother of two children, one
of whom was diagnosed with a developmental disability, Florence was a
founding member of The Arc of Massachusetts and remained an active and
contributing member for decades.
Known as a compassionate and outspoken advocate, Florence was a
member of both The Arc of South Norfolk and the Dever Developmental
Center Association. She was president of the board of directors of The Arc
of Massachusetts from 1966 to 1968 and served on a variety of committees over the years. Florence chaired the DMR Statewide Advisory Council
and was a member of the DMR Human Rights Committee. She also served
on the Massachusetts Commission on Mental Retardation. Her array of
accomplishments was recognized in 2001 when she received the Gunnar
Dybwad Leadership Award from the Commonwealth of Massachusetts and
again in 2005 when was honored at The Arc of Massachusetts’ 50th
Anniversary celebration.
Looking back at the early years of the Arc movement, Florence pointed
with particular satisfaction to her successful efforts to ensure quality control
of the parent-founded preschool nurseries when their future was in jeopardy (1962-65). She is survived by her son, Donald Finkel, and her daughter,
Marcia Hirsch and her husband Leslie, as well as several grandchildren and
great-grandchildren.
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TheArc
ArcofofMassachusetts
Massachusetts
The
The Arc of Massachusetts’ home for the future
Things are falling into place. The
Arc of Massachusetts will soon
be breaking ground on a new
headquarters and resource center, which will be built on the
site of the current headquarters
in Waltham. In order to make
construction possible, The Arc
will temporarily move to a rented
space and then return to the 217
South Street location later this year
when the new building has been
completed.
Construction is being funded by
the Home for the Future Capital
Campaign. At the end of 2015, we
had received just over $800,000 in
gifts and commitments toward our
goal of $1.6 million. In addition
to contributions from individual
donors, we were awarded grants
from the Salah Foundation and
Belmont Savings Bank Foundation.
The Arc’s current building is rapidly
aging. It serves an ever-expanding
array of needs and functions such
as meeting space and training
facilities for dozens of stakeholders
in the disability community, administrative offices, and a resource
center. A new building will allow
The Arc to remain at the forefront
of the struggle to build better lives
for all members of the community
and will help us better serve our
core mission.
During the course of a month,
dozens of meetings involving
hundreds of participants, with
our partners and others who are
part of the disability community,
take place in The Arc’s offices.
Groups such as Advocates for
Achieve with us.
Autism of Massachusetts call 217
South Street “home.” According
to Chairman Michael J. Borr, “The
Arc of Massachusetts has played
a prominent role in establishing
and partnering with Advocates
for Autism of Massachusetts and
has hosted AFAM since its founding more than 11 years ago. The
Arc not only provides a ‘home’
for AFAM but is aligned with us in
advocating on behalf of people of
all ages on the Autism spectrum.”
We are pleased to be able to
offer prominent recognition of
campaign donors. Naming opportunities include the conference
rooms, offices, outdoor patio, and
windows. Gifts of $1,000 or more
will be acknowledged on a plaque
to be located in the new building’s
reception area. In addition, The
Arc will recognize donors in print
publications such as the campaign
honor roll, 2016 annual report,
and an issue of The Advocate to be
published in 2016.
You can help to keep The Arc of
Massachusetts as effective and
dynamic in the coming years as
it has been for the past 60 years
by supporting the Home for the
Future Capital Campaign. Learn
how you can make a difference by
contacting Katrin Aback, Director
of Development at aback@arcmass.
org or 781-891-6270 x105.
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
tel (617) 277-1805
fax (617) 277-0106
www.specializedhousing.org
3
The Arc of Massachusetts Celebrates 60 Years
continued from p. 1
Celebrating The Arc’s 60th Anniversary
Casting bids at the Silent Auction
“Contributions from individuals,
corporations, The Arc chapters, and
human service agencies made the
Gala a huge fundraising success.
All told, the Gala raised a recordsetting $420,000 in support of The
Arc’s programs and advocacy.”
Tracy Atkinson, Executive Vice
President at State Street Corporation, served as Chair of the Gala.
“I was delighted to see so many
sponsors and donors participate
in this celebration. It truly is
a testament to
the incredible
impact that The
Arc has had on
disability issues
over the past
six decades
and how very
important The
A Commitment
that Lasts a Lifetime
• Special Needs
Planning
• Transition Planning
& Adult Services
Arc’s work remains,” said Tracy
after the event.
To mark this milestone, we aimed
to recognize the innumerable
advocates, families, public officials,
donors, human service agencies,
and friends who have worked
tirelessly to help individuals with
intellectual and developmental
disabilities and their families. To do
so, we honored 60 individuals and
partners, almost all of whom joined
us at the Gala.
Guests were treated to live entertainment from the Chenery Middle
School Jazz Combo during the
continued on page 5
• 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
508.459.8000 | www.fletchertilton.com
4
Advocate Ad-Spring '15.indd 1
Auctioneer Tom Weitbrecht
4/7/2015 10:17:22 AM
The Arc of Massachusetts
The Arc of Massachusetts Celebrates 60 Years
continued from p. 4
The Milorin family – honored by The Arc and by the House
of Representatives
reception. After guests were seated
for dinner, Master of Ceremonies
Bob Oakes, the host of Morning
Edition on 90.9 WBUR, Boston’s
NPR News Station, welcomed
everyone. He reflected on the
challenges faced by persons with
disabilities and all that The Arc of
Massachusetts has done to fight
for their civil rights. The night was
capped off by an energetic live
auction led by Tom Weitbrecht.
Attendees bid on an Instant Wine
Cellar, fighter pilot for a day, tickets
with backstage tours of Broadway
shows, and destination vacations.
“Tracy, along with her co-chairs
Sue Lodemore and Marty Courage,
worked tirelessly to make sure that
our sponsors know how important
Executive Director Leo Sarkissian and Board President Dan Sullivan
the work of The Arc is to people
with disabilities and their families,”
said Leo. “We were delighted to
have State Street join us as our Presenting Sponsor and have Deloitte,
Goldman Sachs, Harvard Pilgrim
Health Care, and Oliver Wyman as
Gold Sponsors.”
make a gift online or contact Katrin
Aback at [email protected] or
781-891-6270 x105.
Thank you to everyone who
celebrated with us and to
our generous sponsors and
supporters!
You can still make
a gift in honor of
The Arc of Massachusetts’ 60th
Anniversary and
support our advocacy on behalf
of people with
intellectual and
developmental
disabilities. Use the
donate button to
Emcee Bob Oakes of WBUR’s “Morning Edition”
Achieve with us.
5
The 60th Anniversary Spotlight Honorees
Tracy Atkinson
Tracy Atkinson
Tracy serves as Vice President of
The Arc of Massachusetts’ Board of
Directors. Since joining the board
in 2009, she has been a generous
contributor and provided thoughtful leadership on organizational
development. Through her participation, State Street Corporation,
where she is an Executive Vice President, has been one of the leading
donors to The Arc, strengthening
our advocacy on behalf of individuals with intellectual and developmental disabilities.
Michael J. Borr
Michael J. Borr
Michael is Chairman of the Executive Committee of Advocates for
Autism of Massachusetts (AFAM), a
nonprofit organization founded in
6
2004 to champion the individual
and civil rights of people of all ages
affected by an Autism Spectrum
Disorder (ASD). Since its founding, AFAM has been hosted by The
Arc of Massachusetts and the two
organizations have collaborated to
advocate for legislation and regulations affecting the lives of people
with disabilities. Michael and his
wife Nancy are founding members
of the Family Autism Center at The
Arc of South Norfolk.
Leadership Award. In 2013, the
University of Massachusetts Boston
established the James T. Brett Chair
in Disability and Workforce Development, the nation’s only endowed
chair in disability and workforce
development.
James Lawson and Edward J. Joyce
James Lawson and Edward J.
Joyce, Ropes & Gray LLP
James Brett
James T. Brett
Jim became a supporter of The
Arc in the 1980s, when he was
elected a State Representative from
Dorchester. He recently served as
the Chairman of The President’s
Committee for People with Intellectual Disabilities and continues
to serve as a member, as well as
serving as Chairman of the Governor’s Commission on Intellectual
Disability. A tireless advocate for
the physically and mentally challenged, in 2014 he was awarded
the John “Jack” Brett Champion’s
Award from Special Olympics Massachusetts and was inducted into
their Hall of Fame. Also in 2014,
the Disability Law Center bestowed
upon him the Edward M. Kennedy
Ed and Jim have worked together
at Ropes & Gray LLP for the last
34 years. Jim has been involved
with The Arc since 1990, after his
son Andrew was born with Down
syndrome and started receiving
services from the early intervention
program at The Arc of the South
Shore. Jim served on its board of
directors for more than 20 years,
with two terms as board president,
during which he helped initiate a
capital campaign drive and started
a community-based inclusive recreational program. He also served
four years on the board of directors
of The Arc of Massachusetts and initiated the capital campaign efforts
for our new headquarters.
Ed has a passion for helping and
advocating for individuals with
intellectual disabilities. As an estate
planning attorney and trustee,
he has worked with Jim to secure
continued on page 7
The Arc of Massachusetts
The 60th Anniversary Spotlight Honorees
continued from p. 6
many grants, gifts, and bequests
over the years. The largest gift was
for $1 million, which was used to
support existing and new advocacy programs through The Arc’s
network in Massachusetts. He has
also helped with the current capital
campaign and has generated over
$110,000 for this project.
Massachusetts Developmental
Disabilities Council (MDDC)
The Massachusetts Developmental
Disabilities Council has collaborated
with The Arc of Massachusetts since
the Council was created in 1971.
Our true partnership began in 1979
with the co-hosting of a legislative
reception at the State House, which
has become an annual event. Over
the years we have partnered on
dozens of key policy and budget
initiatives, including supporting
Massachusetts Families Organizing
for Change and Massachusetts Advocates Standing Strong, the Tools
for Tomorrow project, housing
and education initiatives, systems
change grants, self-directed supports, and numerous funding priorities. Our recent successes include
the establishment and support of
the MA21 partnership for 21st century disability policy, which led to
the passage of the Real Lives bill.
Neil V. McKittrick
Neil, a shareholder attorney in the
Boston office of Ogletree Deakins,
Achieve with us.
Neil V. McKittrick
Frederick M. Misilo, Jr.
has represented persons with
developmental disabilities in several
significant lawsuits. The most prominent of these is Boulet v. Cellucci, a
class action filed in federal court in
1999 on behalf of approximately
3,000 adults with developmental
disabilities. After the court ruled
that Massachusetts had violated the
Medicaid Act, the Commonwealth
agreed to settle the case by providing $114 million worth of services
to the class members. Neil served
as the Class Monitor to ensure that
the Commonwealth complied with
its obligations under the agreement. Neil also has filed amicus
curiae (“friend of the court”) briefs
in the U.S. Supreme Court in other
leading disability rights cases. As
a result of his pro bono work, Neil
received the 2001 American Bar
Association Pro Bono Publico Award
and the 2001 Massachusetts Bar
Association Access to Justice Pro
Bono Publico Award.
PC. A former Deputy Commissioner
of the Massachusetts Department
of Developmental Services (19911994), he is a past President of The
Arc of Massachusetts (2008-2010)
and a member of the Board of Directors of The Arc of Cape Cod. He
currently serves as a member of the
Board of Directors of The Arc of the
United States and co-chairs its Public Policy Committee. Fred has been
a compassionate advisor and a
dedicated advocate on Beacon Hill
and Capitol Hill on behalf of people
with intellectual and developmental
disabilities (I/DD).
Frederick M. Misilo, Jr.
Fred has been involved with The
Arc both nationally and in Massachusetts for many years. As an attorney, he is Chair of the Trust and
Estate Department and the Special
Needs Planning and Advocacy
Practice Group at Fletcher Tilton
Susan and John Nadworny
John and Susan Nadworny
John and Susan Nadworny are
longtime supporters of The Arc of
Massachusetts. Their relationship
with The Arc began 24 years ago,
with the birth of their son James.
continued on page 8
7
The 60th Anniversary Spotlight Honorees
continued from p. 7
As chairperson of Massachusetts
Families Organizing for Change
(MFOFC), Susan has collaborated
with The Arc on advancing policies for individuals with ID/DD. In
2007 John and his business partner
Cynthia Haddad published The
Special Needs Planning Guide, which
assists families with long-term planning. Susan is a Gunnar Dybwad
awardee, and president-elect of
the Melrose Rotary Club. John has
served on the Governor’s Commission on Intellectual Disabilities, the
MDSC board and the Real Lives
committee.
study Left Out in the Cold: Health
Care Experiences of Adults with
Intellectual and Developmental Disabilities in Massachusetts (2008). In
her former role as Director of the
Family Nurse Practitioner program
at Simmons College, she advocated
for collaboration with The Arc in
setting up Operation House Call
to include nursing, nutrition and
physical therapy students.
State Street Corporation
Janet Sweeney Rico
Janet Sweeney Rico, MBA,
NP-BC, Ph.D.
A nurse practitioner and leader
in the field of nursing and health
sciences education, Janet has been
engaged in advocating for greater
support and health care access
for people with disabilities, as well
as the elderly, for decades. She
currently is Assistant Dean of the
Graduate Nursing Programs at
Bouvé College of Health Sciences
at Northeastern University. Janet
served on The Arc board from 2004
to 2010 and began another term in
2014. She also served on The Arc’s
Healthcare Committee, which oversaw the publication of the landmark
8
State Street Corporation has been
a substantial supporter of The Arc
of Massachusetts since 2009. Based
in Boston, State Street is one of
the world’s leading providers of
financial services to institutional
investors. The company provides
investment servicing and management, trading and research,
and data and analytics solutions
to institutional clients around the
globe, including asset managers,
pension plans, insurance companies, sovereign wealth funds and
foundations. State Street takes great
pride in contributing to the health
and stability of the communities in
which it operates, with a particular
emphasis on education and workforce development.
Editor’s Note: A more complete
description of each honoree can
be found by visiting our website
thearcofmass.org/honorees.
60th
Anniversary
Honorees
We are pleased to recognize these
individuals and organizations
whose many and varied contributions to The Arc of Massachusetts
have supported and sustained our
efforts over the past 6 decades.
Stewards
Joseph Andrade
Angela and Dan * Becker
Ronald and Elizabeth Campbell
Vibeke and Gustav Christensen
Mark Forziati
Donald and Ruth Freedman
Richard E. and Edith Frye
Sarah M. Gates
Philip Gloudemans
Dana Graves, D.D.S.
Simon Greisdoff *
Cynthia and Mark Haddad
Evelyn and Robert Hausslein
James and Tina Kerkam
Susan and David Lodemore
Raymond S. and Doris Nickerson
Susanna Peyton and John W.
Campbell
Donald and Elizabeth Stewart
Maureen and James Sullivan
Theresa and Harvey Varnet
Policymakers
Rosalie Edes
Commissioner Elin M. Howe
Senator Barbara L’Italien
Gerry Morrissey
Representative Tom Sannicandro
Senator Karen Spilka
Corporations and Foundations
The Boston Foundation
Burke Distributing Corporation
Comcast Business
Fletcher Tilton, P.C.
continued on page 9
The Arc of Massachusetts
60th Anniversary Honorees
continued from p. 8
Harvard Pilgrim Health Care
RhumbLine Advisers
TD Bank
Tudor Investment Corporation
UBS Securities, LLC
Volunteers and Family
Outreach
Chris Andry
Mary Ann Boulet
Lucie Chansky
Anne Fracht
Diane Glennon
Kerry Mahoney
Mary Ellen Mayo
Henry and Evelyne Milorin
Pat Pakos
The Eighteen Affiliated Chapters
of The Arc of Massachusetts
Brockton Area Arc (BAArc)
The Arc of Cape Cod
The Center of Hope Foundation/The
Arc of Southern Worcester County
Charles River Center
East Middlesex Arc (EMArc)
The Arc of Greater HaverhillNewburyport
The Arc of Greater Lawrence/
CLASS, Inc.
The Arc of Greater Lowell/
LifeLinks, Inc.
Minute Man Arc for Human Services
Northeast Arc
The Arc of Opportunity in North
Central Massachusetts
The Arc of Greater Plymouth
The Arc of South Norfolk
The Arc of the South Shore
United Arc
Greater Waltham Arc, Inc.
(GWArc)
Agencies
Bay Cove Human Services
Bridgewell
Justice Resource Institute
Nonotuck Resource Associates
Vinfen
* deceased
Editor’s Note: A more complete
description of each honoree can
be found by visiting our website:
thearcofmass.org/honorees
Berkshire County Arc
The Arc of Bristol County
The Arc of South Norfolk
Family Autism Center
is celebrating 20 years!
Serving over 700 families
throughout Norfolk County
and the surrounding communities
•
•
•
•
Education and Referral
Information
Support Groups for family
members
Specialized Social and
Recreational Programming
Resource Library
http://www.arcsouthnorfolk.org/familyautism-center.html
Brian Clark, Director, 781-762-4001 Ext.310
Achieve with us.
Are you or someone you
know in need of
assistance and/or
supervision of activities
of daily living?
If you are currently on
Mass Health, contact us
to find out if you are
eligible for Adult Family
Care or Personal Care
Assistance services.
You
ma
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781-335-3023
[email protected]
www.arcsouthshore.org
9
The Arc of Massachusetts would like to acknowledge the following top sponsors of the
60th Anniversary Gala. We invite you to visit www.arcmass.org/gala to see the full list of Gala
Sponsors. Thank you very much for your generosity and commitment to The Arc’s mission!
Presenting Sponsor
Gold Sponsors
Silver Sponsors
10
The Arc of Massachusetts
Thank you for your support!
The Arc of Massachusetts would like to thank
everyone who showed their support of our
work by making a contribution in 2015. We
deeply appreciate their commitment to ensuring that all individuals with intellectual and
developmental disabilities have opportunities
to lead full lives in the community.
As we continue to celebrate our 60th Anniversary, The Arc of Massachusetts remains
committed to helping families across the
Commonwealth assure the well-being, safety,
and happiness of their loved ones. The Arc’s
advocacy has made an enormous difference in
the lives of the 200,000 individuals in Massachusetts who have disabilities. They are
living better, community-centered lives as
a result of The Arc’s 60 years of efforts on
their behalf. Our work is being made possible by hundreds of concerned individuals,
our 18 chapter affiliates, dozens of human
service agencies, corporations, and foundations which support The Arc with their gifts,
sponsorships, and grants. Thank you all!
Please consider supporting The Arc of Massachusetts in 2016. There are many ways you
can have an impact on The Arc’s work. Learn
more by visiting our website or contacting
Katrin Aback, Director of Development, at
[email protected] or 781-891-6270 x105.
SHARED LIVING
Sharing memories and experiences together!
For adults 22 and up
who are eligible for DDS
residential supports
Quality care from one
consistent and
qualified care provider
Enhances individual’s
skills through
powerful role models
within the home
Caregivers are given
case management,
training and support
Matches are available
for individuals of all
abilities and challenges
with caregivers who
share common
interests and lifestyles
Contact:
Tara Jordan, Associate V.P. for Adult Services
405 Washington Street
Hanover MA 02339
781-829-1240
www.CushingCenters.org
[email protected]
Achieve with us.
continued on page 12
11
Operation House Call: Jack’s Story
Operation House Call (OHC) is fortunate to have 170 families teaching doctors through our medical
school training programs in Massachusetts. We are especially lucky
to have the Dollar family.
issues. He is unable to communicate verbally, has a feeding tube,
and uses a wheelchair. Jack has had
countless hospital stays, doctors’
appointments and medical procedures over the years.
Robyn Dollar is OHC’s Family
Coordinator and has been a family
volunteer for many years. Jack is
her 7-year-old son who loves music, school, balloons, playing games
on his iPad, and taking walks along
the Charles River with his family.
Jack has loving and devoted parents and an energetic and adoring
4-year-old sister named Charlotte.
Jack has Down syndrome. He also
has a seizure disorder which has
caused him many medical issues
over the years, including chronic
gastro-intestinal and respiratory
When Jack was a baby, his family
began welcoming medical students
into their home as a part of Operation House Call. When students
visit the Dollar family, they get to
meet and play with Jack and Charlotte and learn about what life is
like for everyone in the family. They
get to talk to Jack’s parents about
their experiences with Jack’s health
care providers over the years, as
well their everyday joys, challenges, community supports and
resources. Through these home
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visits, Jack’s family provides medical
students with insight from a patient’s and a parent’s perspective, in
hopes that it will bolster students’
confidence and compassion as they
treat and interact with patients with
intellectual and developmental disabilities in the future.
The Arc was excited to highlight
the Dollar family and Operation
House Call on WBZ-TV on February 1,
expanding public awareness of the
day-to-day experiences of families
such as the Dollars.
If you are interested in learning
more about OHC or making a donation to help us sustain and grow
this program, please contact Maura
Sullivan, Program Director, at 781530-8274 or [email protected]
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The mission of the SUPPORTbrokers
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The Arc of Massachusetts
Government Affairs
Legislative Update – The Arc’s Bill Platform
The Arc has twenty-two bill priorities for 2015-2016. Each bill
has been heard by the appropriate Joint Committee. The hearings took place late into the fall
with excellent advocacy efforts in
standing-room-only sessions. The
Arc provided testimony for our top
priority bills, with comprehensive
knowledge and emotional and
personal stories to connect the
committee to the issues faced by
our community. Critical followup to each member of the Joint
Committees has been done and
The Arc has reached out to our
Government Affairs committee,
self-advocates, families and our
partner organizations to reinforce
our efforts with their respective
lawmakers.
Our priority bills will significantly
help support people with I/DD and
autism in the need for more highquality medical care, greater access
to medical care, flexible housing
options, more inclusive higher
education opportunities, civil rights
and community inclusion, transition to adulthood, and coordination of mental health services and
supports.
At present, the committees have
Supporting Families of Massachusetts:
One of The Arc’s budget priorities
As we move into “budget negotiation season,” The Arc is working
hard to prioritize our efforts to supporting families in Massachusetts
who have a loved one with autism,
I/DD living at home. We are working with leadership and lawmakers.
We have asked for increased funding to help almost 6,000 families
who have intensive needs. The
budget line items affected by our
“ask” are:
1. Family Support
2. DESE/DDS Program
3. Autism Kids Waiver.
Achieve with us.
The Arc, along with ten other
organizations in Massachusetts,
believes that helping families to be
strong and resilient pays off for our
communities. Supporting families
is the right economic solution and
the right thing to do. In this day
and age of community inclusion
and accommodations, residential
placements can be avoided.
For more information on the
Supporting Families of Massachusetts Campaign, and contact
information, please contact
Maura Sullivan at 781 891-6270
or [email protected]. You can
also visit our webpage and find us
on Facebook.
been receptive and there is movement in some of the proposed
legislation, but The Arc can still use
your help. You can view our bill
platform on our website (thearcofmass.org) under the advocacy tab.
We need calls, visits or emails to
your legislators to educate them on
the positive impact of these bills.
Ask them to encourage the chairs
of the respective committees to
pass these bills on favorably.
For more information on the bills,
and contact information for the
Joint Committee members, please
contact Maura Sullivan at 781 8916270 or [email protected].
Save These
Dates!
Wednesday
March 9, 2016
The Arc and MDDC 38th
Annual Legislative Reception at
the State House – 10:30 a.m.
Thursday
April 7, 2016
Autism Awareness and
Acceptance Day at the
State House – 9:30 a.m.
April 11-13, 2016
Disability Policy Seminar in
Washington DC
13
Government Affairs
Action begins on the Fiscal Year 2017 Budget
The legislative budget process is
in full swing. The Joint Committee
on Ways and Means, chaired by
Senator Karen Spilka and Representative Brian Dempsey, will hold
hearings in February as you receive
this news. The budget will work its
way through the House and Senate,
then a conference committee, and
finally back to the Governor for his
signature. This budget will cover
the fiscal year (FY) beginning on
July 1, 2016 and ending June 30,
2017, thus it’s the FY 2017 budget.
The debate on taxes -- with many
voters wanting them to be reduced
or stay level (federal and state)
-- means that “our community’s”
advocacy is more important than
ever. For example, every year, we
have 800 students graduating from
school and needing services (many
others graduate and go on without
DDS or other agency funding).
Another group of students will be
eligible through the new program
on developmental disabilities. Over
500 students applied thus far,
about 200 of them, however, still
in school and just registering for
eligibility. This may mean that the
total number of those turning 22
annually in the future who need
assistance will exceed 1000 adults.
Support to Families
The legislature has supported the
“family support” line item (59203000) in the past several years.
There are 18,000 families eligible
for family support and nearly
10,000 of them receive some support, but much of it is quite limited.
14
The “Supporting Families” Campaign has a goal of increasing the
assistance to families through three
different line items: family support;
and two line items dedicated to
families with children, DESE-DDS
(5948-0012) and the Autism
Children’s Waiver, (5920-3010).
Limited growth in Family Support,
DESE-DDS and Autism Children’s
Waiver means that more families
have chosen or will choose residential options. This neither supports
families nor is it cost effective. For
older parents (there are 3100 families where caregivers are 60 years or
older), the lack of additional family
support translates into health problems and emergencies. Younger
families who have children with
behavioral or medical conditions
face trying home environments.
Eventually those in the toughest
circumstances give up. Learn more
at Supportingfamilies.org
Support access to Adult
Services, Turning 22
Turning 22 students from the year
before require full year funding
each subsequent year. The Turning
22 line item which has NOT kept
up with the rise of those in need
only covers year 1 after graduation
which happens at different times
of the year when the student turns
22 years of age. In the following
year, funds need to be allocated
in line items such as employment/
day (5920-2025), residential
(5920-2000), and transportation (5911-2000) for a full year of
assistance. These three line items
need to grow annually as long as
there are new adults who need
assistance. 800 new people are
eligible each year and 210 of them
obtain residential assistance. The
employment/day line item needs
to support hundreds of students.
A shortfall there will affect anyone
hoping to obtain job training.
Students who are eligible and who
have developmental disabilities are
funded through the autism omnibus line item (5920-3020). In a few
years we will have better knowledge of how many of these young
adults will need adult services. Our
most recent snapshot suggests 250
will be in need annually.
Of course, older adults need
services too. There are adults who
need more adult services or approach DDS for the first time as
their parents age and can no longer
provide care at home.
Community services touch tens of
thousands of adults with intellectual
and developmental disabilities
(I/DD) throughout Massachusetts.
Individuals and families rely on
the Department of Developmental
Services (DDS) and MassHealth for
long-term services. The DDS caseload exceeds 32,000 constituents
and their families.
To see the specific requests to
legislators or review our analysis,
you can download information
by going to our home page
(thearcofmass.org), pick state
budget link under Advocacy and
scroll down to Governor.
The Arc of Massachusetts
SupportBrokers
Supporting life’s changes
By Kerry Mahoney, Director of Education and Outreach*
Sarah lived fairly independently
for 28 years in a wonderful home
located in Brookline, with 9 housemates. She was the first student
with Down syndrome to graduate
from Lesley College’s Threshold
Program. She took the T independently all over Boston, walked to
local shops to do errands, had a
special boyfriend, and worked at
Morgan Memorial.
In the spring of 2012, family members and staff became concerned
that she might be losing skills. A
diagnosis was reached that Sarah
was experiencing early Alzheimer’s.
Shortly thereafter, The Department
of Developmental Services stepped
forward with a Priority One for
residential placement.
Support Brokers was called upon in
the summer of 2013 to locate an
appropriate residential placement
for Sarah. Her father lived in New
Hampshire and her mother down
on Cape Cod. Therefore, they
needed someone local to explore
possibilities.
It was the parents’ wish that Sarah
reside in a home -- properly cared
for -- where she could age in place,
where she could be with people
of varied abilities to encourage a
stimulating environment, and one
that could accommodate physical
and functional changes that may
be encountered with aging. The
parents wanted the staff to have an
understanding of Sarah’s interests
such as working with her hands,
Achieve with us.
drawing, coloring, and rolling yarn,
to be able to engage her in activities she enjoyed. They wanted her
to have opportunities to go out in
the community for recreational and
physical activities.
Sarah’s Support Broker, Pat Pakos,
went to work exploring statewide
programs with agencies that might
be suitable. Pat also worked with
the Service Coordinator from the
Department of Developmental Services and explored group homes
that had become available.
During the course of searching for
an appropriate residential placement, a decision was made to
search for a new day program also.
It took a while but success was
reached near the end of 2014.
Sarah started an extraordinary
day program operated by Hebrew
Life in Roslindale at that time. She
settled in immediately.
Moving day into her new residence was February 7, 2015. She
had met her three roommates
quite a few times out in the community and shared meals with
them. Her family had come to the
house a number of times, meeting
staff and decorating her room.
The family is extremely grateful to
their Support Broker, Pat, for the
work she did in finding the right
placements for their daughter. As
a post-script, we have just learned
that a fifth roommate has moved
into the house. She is a dear friend
of Sarah’s from grammar school
Sarah Moulton
and through high school. What a
wonderful reunion!
A testimonial from Sarah’s parents:
“As a family we cannot say enough
about the wonderful service we
received over a period of many
months from Support Brokers.
Words do not seem adequate to
describe what a profound impact
their efforts made in the life of our
daughter, Sarah, and, certainly, in
the lives of all of us who have loved
her so for close to 54 years.
“Sarah is thriving in her new environment because of the compassion, dedication and expertise of
our Support Broker, Pat Pakos, who
was determined to find the absolutely best available housing option for Sarah’s changing needs.
We were all blessed to have her as
Sarah’s advocate in this challenging
search”
*Editor’s Note: Kerry Mahoney is
director of The Arc of Massachusetts’
Support Broker program. For more information about Support Brokers, call
781-891-6270, ext. 109 or. email
her at [email protected]
15
The Friendship Corner
Why friendships between people with
and without disabilities matter
By Jim Ross
Right in the middle of one of our
presentations to a parents’ group,
one of the mothers who had been
listening attentively, stood up and
said: “All that talk about people with
and without disabilities being friends
sounds good, but why on earth
would someone without a disability
want to be friends with a daughter
like mine?”
As a professional, I was taken
aback. As a parent of two children
with disabilities, I was shattered.
That was not the only time our
message has been challenged.
We’ve also heard other comments
from family members and support
staff:
“Sam doesn’t want to meet
anyone in the neighborhood.
He only wants to hang out with
his roommates in our
group home.”
“We’re her parents and we love her.
She doesn’t need anyone else.”
“Have her meet other people in the
community? I don’t think so. I’ve
been Sally’s staff person for over 10
years. No one knows her better.
I’m there for her and she’s safe
with me.”
First, let us be clear. Relationships
between people with disabilities
and their family members are very
important. Relationships between
people with disabilities and paid
staff are very important. Relation-
16
ships between and among people
with disabilities are very important.
But why should relationships—
including friendships—be limited
to family members, paid staff and
other people who happen to have
disabilities?
Let’s explore the issues raised
above:
“Sam doesn’t want to meet
anyone in the neighborhood.
He only wants to hang out with
his roommates in our
group home.”
We believe that people should have
choice in their lives. That includes
being able to choose with whom
they are going to spend time.
But many people with disabilities
have been largely segregated for
all of their lives. They may have
experienced substantially separate
schooling, group homes, sheltered/
segregated employment, day habs,
“special” recreational programs,
etc. If someone’s life experiences—
determined by their service system
or society—have been segregated,
then it is likely that they won’t
recognize inclusion as an option
for them. “We”—parents, staff,
advocates, etc.—need to be sure
that we are extending invitations
to be part of the neighborhood in
ways that are enticing and positive.
I have half-joked sometimes about
what my life would be like if the
“system” conspired so that I could
only associate with others who,
like me, have titanium knees and
consume Lipitor.
“We’re her parents and we love her.
She doesn’t need anyone else.”
I’m the last person to deny the
importance of family. As the oldest of 12 children, the father of 7,
grandfather of 3 and proud uncle
of 28 nieces and nephews, I have
a wealth of family. But I will not be
around for my kids—including two
with disabilities—forever. And I am
not sure how capable my children
will be to help watch over each
other as their lives change. And I’m
not sure how responsive the future
human services system will be. The
more connections all my kids have
with others in the world, the better
off they will be. And the more restful I will sleep.
“Have her meet other people in the
community? I don’t think so. I’ve
been Sally’s staff person for over 10
years. No one knows her better.
I’m there for her and she’s safe
with me.”
Staff, especially staff of long duration, are very valuable. But few staff
are able to make lifelong commitments to all the people they
support. In our travels, staff often
acknowledge that they’ve held
multiple direct support jobs with
dozens (even hundreds) of individuals with disabilities. When pressed,
continued on page 17
The Arc of Massachusetts
The Friendship Corner
Dillon Chevrolet
Donates Van to
The United Arc
Why friendships between people with
and without disabilities matter
contd from p. 16
they further acknowledge that they
have maintained relationships with
few, if any, people they supported
from previous jobs. This is a pattern
we see over and over. There is a
clear danger in having staff identify
themselves as the primary friend
to someone they support. A much
more valuable role for staff is to use
their time to facilitate connections
between the people they support
and trustworthy individuals in the
community who freely give their
time and attention. These trustworthy individuals can include
family members and friends of the
staff person or people they know
through church, neighborhood,
clubs, recreational facilities, etc.
“All that talk about people with and
without disabilities being friends
sounds good, but why on earth
would someone without a disability
want to be friends with a daughter
like mine?”
Pairs or sets of friends often seem
very different to the casual observer. But people gravitate to each
other for all kinds of reasons. Often
it’s a shared passion for a certain
activity. It may be something
common, say rooting for the NE
Patriots. Or it may be something
fairly rare, perhaps an interest in
giant snakes. No matter what,
it’s pretty easy these days to use
social websites to find others who
share the same interests. Sometimes an individual has an interest
Achieve with us.
that seems inappropriate for their
age and unlikely to attract others. Those can often be modified
though; for instance, adult coloring
books are now a rage that both
satisfy the urge to color and do it in
a social setting with other similarlyaged people.
But sometimes people just click.
For some people, sitting quietly together in a room with good music
is enough to cement a friendship.
Or slow drives through the country
side. Or remembering each other
on birthdays. Or seeking each
other out when sad things happen
in life. There are an infinite number
of reasons why that mother, above,
should really be saying:
“Anyone would be lucky to be friends
with a daughter like mine.”
PLAN
(L-R) The United Arc’s Adult Services Director
Brian Ross, Executive Director, Lynne Bielecki,
and Tom Dillon of Dillon Chevrolet,
On November 18, the Dillon Chevrolet dealership at 54 Main Street
in Greenfield, MA donated a 2008
Hyundai Entourage van to The
United Arc.
At The United Arc’s main office
in Turners Falls, Dillon Chevrolet
co-owner Tom Dillon Jr. and his
daughter, Brooke Dillon, gave the
keys to Executive Director Lynne
Bielecki and Director of Adult
continued on page 20
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
17
The Association for Community Living is a pioneer
of innovative services for people with disabilities
In 1952, five young mothers of
children with developmental disabilities got together and founded The
Association for Community Living in
an effort to reject the limitations that
had been placed on their children. An
organization that got its modest start
in Hampden County, The Association’s reach now extends across all of
Western Massachusetts and even dips
into some central parts of the state,
and is guided by the idea that all
people with developmental disabilities should be welcomed, contributing members of their communities.
for people with intellectual disabilities. It was one of the first organizations of its kind in Hampden County.
It also established the first developmental day school in the area, the
first community residence in Western
Massachusetts, the first intermediate care facility in the state, and the
first foster care program for people
with developmental disabilities in the
state.
The Association now provides an
array of services to more than 830 individuals of all ages and 469 families.
Through programs including Community Resources for People with
Since its start, The Association has
Autism, Whole Children, Family Embeen a pioneer in innovative services
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18
riverbrook.org
The Association’s
A student at Whole Children in Hadley gets
ready to cook lunch, with help from his
teacher.
recreation and enrichment programs
include social skills training, performing arts, and social opportunities. The
sexuality education curriculum developed by the organization is used in
several local school systems. Through
a robust array of services, including educational workshops, support
groups, stipends and case management, The Association gives families
the tools they need to build a richer
and fuller life for their children.
The organization also provides a variety of housing options and a range of
supports to suit each individual. These
options include staffed arrangements,
shared living, supported living, and
home sharing.
In 1974, Specialized Home Care
created the model for shared living
used generally today out of a firmly
held belief that individuals thrive in
homelike settings within the strong
personal relationships of a home
life. In shared living, The Association
matches people with developmental disabilities, as well as those with
continued on page 19
The Arc of Massachusetts
The Association for Community Living
contd from p. 18
medical and personal care needs,
with families in the community so
that they can live with dignity, in a
more natural living situation. This
shared living arrangement allows
for individualized care and increased
support.
The Association’s work is a direct
reflection of its support for The Arc
of Massachusetts. Like The Arc, The
Association’s mission is to improve
the lives of not only the members
in its community with developmental disabilities, but to also educate
the community as a whole about
how they can better integrate and
understand those individuals with
developmental disabilities.
“We support The Arc because they
are so effective as a voice for people
with developmental disabilities and
their families,” said Barbara Pilarcik,
Executive Director for The Association. “They have a long history of
successful passage of important
legislation in Massachusetts, such
as the recent autism bill that has
enabled thousands of adults with
autism to finally receive community
based services.”
Additionally, Pilarcik said that The
Association has always supported
the movements headed by The Arc.
In the past, it has participated in
a national data project started by
The Arc to help set up public policy
around health care for people with
developmental disabilities.
The Arc shares the same pioneering spirit as The Association, as The
Arc also fought for alternatives to
institutionalization. “They were one
of the primary voices around closure
of the institutions and filed as one of
the original members on behalf of
the plaintiffs,” Pilarcik added. “They support families with
eloquence and without hesitation.
In short, they get it done.”
How Special Needs Trusts help people
with disabilities
By the Planned Lifetime Assistance Network of Massachusetts and Rhode Island, Inc.*
Planning for the future can be particularly difficult for families caring
for young or adult children with disabilities. The extra time, energy, and
costs involved can leave caregivers
emotionally, physically, and financially depleted. As a result, arranging
for future care often takes a back
seat to meeting day-to-day needs.
Also, many families are unaware that
traditional methods of providing for
the next generation don’t adequately serve a person with a disability.
For example, an inheritance of as
little as $2,000 from a life insurance
policy or other means can jeopardize eligibility for public benefits, like
Medicaid and Supplemental Security
Income (SSI).
Achieve with us.
Protecting Benefits and Preserving
Assets
To protect access to public benefits
and to preserve assets, families caring for people with disabilities can
establish a special needs trust. A special needs trust is a legal document
that enables money to be set aside
for a person with a disability. It can
play an important role in helping
plan for a person’s future. Money in
a special needs trust is not counted
toward assets that can jeopardize a
person’s access to public benefits. It
allows a family to set aside money
for a loved one, while protecting his
access to public benefits.
The money in a special needs trust
can be used to pay for necessities
not covered by public benefits, such
as medical and dental care, companion and other social services,
and clothing. It also can be used for
many other purchases that enrich a
person’s life. These include transportation to visit others, movies and
other entertainment, and electronics such as computers and tablets.
These categories are just examples,
and are not a complete list.
People with a wide variety of physical and mental conditions may be
eligible to have a special needs trust.
These include loss of vision, spinal
cord injuries, autism spectrum disorder, Down syndrome, and mental
health challenges. Other conditions
also qualify.
continued on page 20
19
How Special Needs Trusts help people with disabilities
contd from p. 19
Funding Special Needs Trusts
balance of $500,000.
Special needs trusts may be created
for a person with a disability by
family or friends. This type of trust
is known as a “third-party trust.” It’s
important to know that relatives or
friends can contribute to the trust
now or even in the future, by leaving funds to the trust through an
inheritance or a life insurance policy.
Another option is a “pooled” special
needs trust. Pooled trusts are offered by nonprofit organizations.
The funds are “pooled” for investment purposes only. Each participant has his own separate account.
Pooling the funds for investment
helps reduce each participant’s
administrative costs and overhead,
because the fees are shared by all of
the trust accounts.
Special needs trusts also may be
set up by a person with a disability
using her own money. Trusts set
up this way are called “first-party
trusts” or “self-settled trusts.” For a
minor, first-party trusts may be created by a parent, grandparent, legal
guardian, or the court. The money
might come from an inheritance or
an award from a lawsuit.
Individual or Pooled Trust
Third- and first-party trusts may
be set up individually, with the help
of an attorney. These individual
trusts typically require a minimum
A carefully planned special needs
trust is a critical tool to enable
people with disabilities to enjoy
activities, services and goods that
would not be covered by their public benefits, and to live as well and as
independently as possible, now and
in the future.
Planned Lifetime Assistance Network
of Massachusetts and Rhode Island,
Inc. (PLAN of MA and RI)
The oldest and largest special needs
pooled trust in Massachusetts is
Dillon Chevrolet Donates Van
contd from p. 17
Services, Brian Ross. The van supports The United Arc’s Community
Service Program, which facilitates
community participation for adults
with intellectual and developmental
disabilities.
Tom first connected with The
United Arc through former executive director Ed Porter, who was a
customer at Dillon Chevrolet. Ed
approached Tom for help putting vans in The United Arc’s fleet
of vehicles. Tom, who has been a
20
member The United Arc’s Board of
Directors since 2012, says that it
has been “a great experience” and
that he wants to help in any way
he can.
Dillon Chevrolet was established
by Tom’s father in 1961. Tom appreciates the community supporting their business, the only local,
family-run dealership in the area.
“It is very important that we support the community that supports
us.” In addition to supporting The
Planned Lifetime Assistance Network of MA and RI, which serves
more than 800 people who have a
wide variety of abilities and challenges. Executive director Pamela
Tames says, “Trust participants and
their families depend upon us to
administer their trust accounts and
to disburse their funds with ease,
integrity and reliability. Our staff and
board are compassionate, dedicated
and experienced professionals who
help participants access their funds
to live well.”
*PLAN of MA and RI is a nonprofit
organization that proudly serves
people with disabilities throughout
Massachusetts and Rhode Island.
Since 1995, PLAN’s team of licensed
social workers, attorneys, and financial experts has overseen two pooled
special needs trusts that have served
thousands of people with disabilities.
For more information, please visit
PLAN at www.planofma-ri.org or call
617-244-5552.
United Arc with the van donation
and the Adopt-A-Family program,
during the holidays, Dillon Chevrolet also supports Toys for Tots and
Warm the Children.
Brian Ross, Director of Adult Services for The United Arc says, “The
vehicle donated by Dillon Chevrolet
is deeply appreciated as it takes into
account the mobility and safety
needs of the people that we serve.
This van allows our clients to go on
more group outings with friends
and to be more active in their community. We all really appreciate the
generosity of Dillon Chevrolet!”
The Arc of Massachusetts
Education and Training
Upcoming Webinars
To register, visit our website at thearcofmass.org/programs/webinars. The fee for attending a live webinar is
$25. If you need financial assistance to attend, please
contact Kerry at [email protected].
February 23, 2016, 12:00-1:00 pm
everyone strives to utilize PBS in every aspect of their
interactions with others. Webinar participants will take away from this presentation tools that they can begin to use immediately with
the individuals they support, with their coworkers, with
family and with others.
Are you confused about State Subsidized Health
Insurance Options?
Presented by Bob Harris, PhD. Bob is currently the
Beth Baker, Director Health Access & Wellness
Services, Boston Public Health Commission, will
present an overview of the current plans available,
including Mass Health and affordable options through
the Connector. The presentation will include information about Eligibility, Application Process, Benefits and
Services and where to find help with the process!
March 8, 2016, 7:00-8:00 pm
Pooled Trusts
Don’t have a trustee for your son or daughter? Pooled
Trusts can protect and administer funds for individuals
with disabilities. They offer the benefit of financial management from qualified agencies that have an expertise
in serving individuals with special needs. Learn how they
work, what they provide and how to access
Presented by Michael Andrade and Jennifer Sweet, The
Arc of Bristol County, and Maryann Hyatt, Berkshire
County Arc
April 12, 2016 7:00-8:00 pm
Positive Behavior Supports in Action
Positive Behavior Supports (PBS) In Action provides
staff with positive principles, guidelines and strategies
to use when supporting individuals. The primary focus
of the PBS Webinar is an emphasis on the five universal
principles; non-contingent, positive caring relationships,
structure and planning, positive contingencies, choices,
and positive language including positive behavioral
expectations. When families, programs and agencies embrace this PBS
approach and strive to practice the principles consistently, it transforms the environment into a culture where
Achieve with us.
Clinical Director and Director of Residential Services for
Minute Man Arc in Concord
Transition Webinar Series
The Arc will also be offering 6 webinars on the most
popular topics from our Transition Conference this past
October. Here is a sneak preview – more to come! March 29, 2016, 7:00-8:00 pm
An Overview of Basic Government Benefits
What are the federal and state benefits that adults with
disabilities may receive? Learn the differences between
SSI and SSDI and more!
Presented by Attorney Frederick Misilo, Group Chairperson, Special Needs Practice, Fletcher Tilton. April 26, 2016, 7:00 -8:00 pm
Autonomy, Decision Making Supports, and
Guardianship
What are the options? How do you evaluate the support
your child may need as they enter adulthood?
Presented by Attorney Frederick Misilo, Group Chairperson, Special Needs Practice, Fletcher Tilton. Governor allocates $5 Million
continued from p. 1
adults but the shortfall will delay employment. Over
800 students will graduate this year and need assistance during 2017. The Arc and partners hope to work
with the legislature to assure that no one is left behind
in transition.
21
News from the chapters of The Arc
The Arc of South Norfolk joins
Massport’s Operation Ready Drill
By Betsy Roche, The Arc of South Norfolk
boarded on a plane as part of the
drill on that cold and rainy morning,
including 18 participants, 9 of whom
were diagnosed with Autism and other
related developmental disabilities from
The Arc of South Norfolk
Volunteers from The Arc of South Norfolk disembark from the airplane
Through the ALEC (Autism & Law
Enforcement Education Coalition)
Program, The Arc of South Norfolk
has had a long-standing relationship
with Massport. Under the coordination of Bill Cannata, ALEC has been
hosting trainings for Logan Airport
personnel and First Response agencies
for the past three years. The training
entails an overview of Autism, including characteristics and mannerisms,
safety risks and concerns for people
with Autism at the airport, as well as
emergency intervention strategies
specific to First Responders.
In the early morning hours of Friday,
October 2, 2015, The Arc of South
Norfolk brought a team of participants and staff to Logan Airport to
volunteer in The Massport 2015
Operation Ready Drill. Massport Fire
Department Chief, Robert Donahue, wanted First Responders to be
prepared for the evacuation of passengers diagnosed with Autism and
related developmental disabilities, so
he reached out to Bill to ask for our
involvement.
The 2015 Operation Ready Drill was
a reenactment of the 2013 Asiana
Airlines crash that took place in San
Francisco. Over 180 passengers were
The drill was a success, and our volunteers got the experience of a lifetime!
They got to see what it would be like
to exit a plane in the event of an emergency, go through the triage process
of emergency medical care and evaluation, as well as be a part of an important educational exercise for local First
Responders. The First Responders on
the scene also received the invaluable
experience of what it would be like
to care for people with developmental disabilities in a crisis situation and
learned a lot about changing their
approach to best meet the needs of
passengers with disabilities.
After the drill was complete,
Massport Fire gave The Arc of South
Norfolk volunteers a tour of their Fire
House and everyone left with a tee
shirt for their participation. We are
grateful for the commitment Massport and Logan Airport have made
to ensure the safety and inclusion of
people diagnosed with developmental
disabilities and Autism.
The Arc of Massachusetts now has a Post Office Box!
Because we are moving to temporary office space while our present building is being demolished and a new one built, we have
arranged for a Post Office Box that you can already use. Here it is:
The Arc of Massachusetts, P. O. Box 541603, Waltham, MA 02454
We expect to move around March 1.Our office at 217 South Street, Waltham, MA 02453 will remain open until then and we will
continue to receive mail at this address. After that, mail will be forwarded from the street address to our new P. O. Box.
22
The Arc of Massachusetts
News from the chapters of The Arc
David’s new home
care providers,
setting up per
diem workers,
organizing a
move-in date,
contacting the
SSA, moving in,
and celebrating.
David enjoys a visit from family members
“Money Follows the Person” (MFP)
is a federal demonstration project
that assists elders and people with
disabilities who want to move from
facility-based care to a communityliving situation. The program
provides for a large array of services
from case management to home
modifications, all designed to allow
people to transition from long-stay
hospital settings to the community.
The Arc of Opportunity in North
Central Massachusetts has been
successful in moving people out of
nursing homes into the community. We are not going to kid you:
it is a lot of work. There is a long
list of stakeholders in every case
referred to us: the individual, family
members, nurses and therapists,
doctors, case managers, home
care providers, state agencies, case
nurses, etc. Often, each case comes
with a long list of things that need
to be done, e.g., locating a home
care provider in a desirable area,
certifying the home care provider,
negotiating for any needed home
modifications, transition meetings, locating community health
Achieve with us.
family in a way unencumbered by
regulations and rules. David invites
his grandchildren to his home.
David describes the visits from his
family as “more comfortable” than
when he was in the nursing home.
“My girls visit me in my home; it
feels a lot better,” David said.
Sitting with
“Living in his new home has afDavid in his new
forded David not only an increased
home that he
level of choice but also he has reshares with his Home Care Progained his dignity; a nursing home
vider, Matthew, it is all worth every
cannot do that by the very nature
second spent to make it happen.
of their supports,” explains Kathy
David recently experienced the
Kopitsky, Division Director for AFC
Christmas holiday for the first time
and Shared Homes.
in several years at home instead of
in a nursing facilLURIE INSTITUTE FOR DISABILITY POLICY
ity. The look on his
face is approachHelp Make Health Care Better for Mothers with Intellectual &
Developmental Disabilities
ing joy.
David has been living with Matthew
for several months.
In that time he
has watched the
home gain the
physical modifications needed to
assist his mobility,
he has been on a
vacation, he has
found new doctors, he is getting
stronger every day,
and his mobility issues are becoming
less and less.
David has also
been able to
connect with his
Sometimes self-advocates aren’t treated the same at
the doctor, especially if they are pregnant. We want
to make health care better for mothers with
intellectual and developmental disabilities. We need
help from self-advocates who are mothers.
If you are a self-advocate and a mother, we want
to talk to you!
! We would ask you questions about what it was
like when you were pregnant and had your baby.
! It takes about an hour to be interviewed.
! We would come to you.
! You would get $50 as a thank you.
! Your baby needs to be younger than 1 year old.
! Remember, it’s ALWAYS your choice to be involved in research.
You don’t have to do it.
Want to share your story? Want to learn more?
Call: (781) 736-3843
Website:
https://lurie.brandeis.edu
23
News from the chapters of The Arc
Meet Dylan Salmon
By Brenda Linden, The Arc of the South Shore
ness to learn has been incredible.”
Dylan Salmon
Dylan Salmon is a charming, delightful, and funny young man who
just started a new chapter in his life:
high school. When Dylan was five
months old he suffered from shaken
baby syndrome. Now that he is a
young man he needs full care; he is
visually impaired, has cerebral palsy,
requires a wheelchair, has academic
special needs and has hand splints.
But despite everything going against
him, he continues to be a funny and
loving high school kid.
Dylan was eight years old when his
now-foster mom took him in. Rose
Chermosino can only be described
as amazing. Over the years she has
taken in hundreds of foster kids,
many of them with disabilities. “It
is just second-nature to me,” Rose
said. “With Dylan it was no question,
watching him grow and his willing-
24
Dylan started his first year of high
school after the middle school
program was no longer age appropriate. Dylan has thrived in the new
environment, loving interactions
with every student. “The school has
a great program,” Rose said. “But
Dylan’s willingness to learn and try
anything he can makes it easy!”
Dylan has a Personal Care Attendant (PCA) at home who also goes
to school with him every day. She
assists with everything from arts --his
favorite -- to learning all the new
technology. “Dylan has a laptop, cell
phone and Ipad,” Rose said. “But his
favorite is the Ipad. He loves all music, but especially country music.”
While Dylan loves his new place at
the high school, he also loves being
home and interacting with all the
family. Taking in so many foster kids
and having kids of her own, Rose
has a very big family. “He loves
when everyone is home,” Rose
said. “He is such an interactive and
social kid that the more people the
better.” But when Dylan first got to
Rose there was one thing she had
to do right away, and that was to
get him to a feeding specialist to
help enhance his diet choices. “He
suffered from asthma and fatigue,
so my first thought was to double
his food intake.” It took time, but
after trial and error with different
foods Dylan’s asthma subsided and
his fatigue was gone. “He grew like
crazy!” Rose said. “It was such a
change; he finally had stamina and
was loving the energy he now had.”
Now Dylan loves food, the crunchier
the better.
“Food is hard for Dylan,” Rose said.
“But it has become one of his favorite things. On one of our first trips
to the movies, one of my other kids
wanted him to try popcorn. That
is when his love for crunchy, salty
foods began.” Rose explains that
since it is hard for Dylan to consume
different foods, he will always make
a face as though he is not enjoying it. “The lunch staff at school is
always worried he isn’t enjoying it,”
Rose said. “I had to tell them to not
look at his face because he loves
to eat and truly is enjoying it.” But
Dylan has a great attitude and sense
of humor and he is willing to try
anything.
High school and food aren’t the only
things Dylan loves: he also loves adventure. This past year Rose rented a
12-person van to bring some of her
kids down to Disney World. “Dylan
loved the ride as much if not more
than the park itself,” Rose said with a
laugh. “He looked out the window,
taking everything in with a big smile
on his face the entire ride.”
While Rose is a strong, independent
mother who has caretaking down to
a science, she turns to The Arc of the
South Shore for guidance. “The Arc
has always been so wonderful,” Rose
said. “They provide an annual report
to discuss his care and are always on
top of his development and changes.” As Dylan continues to grow, his
continued on page 25
The Arc of Massachusetts
News from the chapters of The Arc
Attleboro Library and The Arc of Bristol County
win joint grant
The Attleboro Free Public Library,
along with partner agency The
Arc of Bristol County, is proud to
announce its selection to fund
the project “Everyone Explores @
Your Library: Encouraging Inclusive
Creative Opportunities for Children
of All Abilities” for a “Curiosity Creates” grant through the children’s
division of the American Library
Association, made possible through
a generous donation by Disney.
According to the innovative Curiosity Creates website, “The Association for Library Service to Children
(ALSC) is thrilled to announce that
of over 400 applications received,
79 libraries have been selected to
receive up to $7,500 to support creativity programming. We have been
amazed by the robust response to
Meet Dylan Salmon
contd from p. 24
wheelchair and other supplies need
to be replaced, and The Arc is always
supportive. When Dylan started
high school, the morning routine
was changed. Dylan gets picked
up at 6:10 a.m. every morning, so
Rose gets up with him at 4:30 a.m.
because his care takes a lot of time.
“When Dylan started high school I
called The Arc,” Rose said. “I needed
help figuring out how much time I
would need in the morning, especially with feeding, which is always
the slowest.”
Dylan has had many different PCAs
work with him through the years.
Achieve with us.
our request for proposals and the
range of ideas that were submitted
will continue to inform our work.”
Library Director Joan PilkingtonSmyth states “The library’s efforts to
become a viable, community-based
resource for our community is the
driving force behind our services.
Children’s Services are key to our
Library and our community’s future,
thus key to our planning as a community institution. We envision a
fun, educational, skill-based approach to library services as the way
to introduce very young children to
literacy development, while enhancing older children’s educational experiences. Our ability to truly meet
the needs of Attleboro children will
be enhanced by this new partnership with The Arc.”
But Rose says it the PCAs who push
him that are the best. “Dylan loves
one of the PCAs who is ‘very pretty,’” she says. “But she is very taskoriented and pushes him.” But it’s
Dylan’s sense of humor that comes
through even during challenges.
Rose recalls moments when Dylan
needs to have his hand splints put
on, saying, “Oh no! Can’t I have the
day off?” But he always participates,
usually with a smile on his face.
Rose is very independent -- sometimes too much so, she says. But
whenever she has a question she
calls The Arc. “They are so accommodating,” she says. “When I have
questions about managing my team
The Arc of Bristol County’s President
and CEO, Michael Andrade, added,
“The Arc is delighted to have been
invited to collaborate with APL to
develop accessible and attractive
learning experiences for families
affected by Autism. APL wants the
entire community to feel welcomed,
and The Arc will advise on how to
make needed accommodations for
people with disabilities.”
Coordinated by Amy Rhilinger, Assistant Library Director, the Curiosity
Creates grant offers an opportunity
for developing programs, training
staff, providing an interactive play
station, and making the Children’s
Room a welcoming experience for
our diverse community. Descriptions
of activities funded by the grant will
be released in early 2016.
at home, I call them for advice.” The
nurses who come out to the house
have loved Dylan and he has always
bonded with them.
Dylan continues to be an inspiration.
A young man with a lot of heart,
charisma and a no-quit attitude, he
continues to do everything with a
smile on his face. “It’s hard but I love
it,” Rose said. “It is so wonderful to
watch him willing to try and grow to
be such an awesome guy.” Although
high school is this year’s newest challenge, Dylan continues to look ahead
to what he can do next. The next
chapter Dylan is going to pursue is
the Special Olympics, and there is no
doubt he is going to succeed!
25
News from the chapters of The Arc
One man’s transition plan: The Doghouse Dog
By Bobbi Martino, The Arc of Greater Plymouth
John and his Dad with the Doghouse Dogs cart
John Shea, who turns 22 in March,
2016, is a young man with physical and visual challenges and many
interests and abilities. He loves
baseball, motorcycles, hot dogs,
McDonalds, cola, beaches, running
errands and Jurassic Park.
Planning for John’s future, his parents asked themselves how could
they make a vocation, a meaningful
day, and a future out of this list of
interests. When asked, John said he
wanted to sell hot dogs at Fenway
and ride motorcycles for a living!
John uses a walker or wheelchair to
ambulate, does not always stay on
task, requires assistance with most
activities, does not always speak
understandably, has transitional
anxiety and is legally blind, so they
had some “outside the box” thinking to do.
John’s dad came up with the idea
of a mobile hot dog cart that John
could take to events such as base-
26
ball games and motorcycle rallies, to
sell hot dogs, chips
and cola. A cart for
sale was located,
but John needed assistance to fund not
only the purchase,
but seed money for
the whole venture.
Working with DDS
and The Arc of
Greater Plymouth
Associate Director and Director of
Family Support, Malissa Kenney,
resources were found to help fund
not only the cart purchase, but
also other startup expenditures,
like marketing and an awning.
Using funds from The United
Way of Greater Plymouth County
Transition grant, The Arc of Greater
Plymouth offered to assist with
half the cost. Next, his family was
encouraged to help John apply
for the Kurt Giessler Scholarship, which gives money to help
students apply ideas and knowledge to businesses, research, and
volunteerism. Although recipients
are traditionally accomplished
academic scholars, the selection
team at the Kurt Giessler Foundation saw the value of John’s plan
and decided to fund this unconventional project. John received a
grant of $2,000 !
To prepare, John has been practicing at home with tongs, cook-
ing hot dogs on a griddle. At the
Perkins School, he is participating
in job training at the Perks Café
on campus. John had his debut at
a private party recently and was
happy to make hot dogs for his
guests – and eat them as well! The
public launch has been delayed
by a daunting list of licensing
permits and state and local training certifications that are required.
The Massachusetts Safe Server
and Allergen certification courses
have been completed and John
will have his hot dog cart ready
for business in March of 2016. He
will be the official hot dog vendor
for The Arc of Greater Plymouth
Buddyball season this spring and
has scheduled several community
and private events, including next
winter’s Halifax in Lights event.
John’s business is called The
Doghouse Dog.
Watch for him at The Arc’s Trik
or Trot Race next October and
around the South Shore. He will
be the young man with a smile on
his face shouting “ Hot dogs! Get
your hot dogs here!” John’s dream
for the future includes recruiting
some friends to work with him in
his business venture. We wish him
every success!
Editor’s Note: This is another in the
series “Creating Transition Plans
that mean business!” from The Arc
of Greater Plymouth. Two other
stories appeared in the Fall 2015
issue of Advocate.
The Arc of Massachusetts
News from the chapters of The Arc
Building community with China
Interest is stirring from the other side
of the world in The Arc’s work; China
is looking at CLASS/The Arc of Greater
Lawrence.
Ms. Lü Fei, the director of the Able
Development Institute (ADI) in Beijing, a supportive non-governmental
organization (NGO) dedicated to
assisting people with disabilities,
spent 30 days in the Merrimack Valley, observing several agencies, asking
questions and educating everyone in
those circles about what life is like in
China.
For Ms. Lü’s base of operations, The
Arc of Massachusetts and the National Committee on United StatesChina Relations (NCUSCR) selected
CLASS /The Arc of Greater Lawrence.
As a Professional Fellow in the National Committee’s program on NGO
capacity building, she went to work
daily at CLASS headquarters in Lawrence and met as many people as she
could to understand what services our
federal and state governments offer.
“The visit from Ms.Lü was an honor
for CLASS and we are so proud to
have been selected by The Arc of
Massachusetts and NCUSCR as the
agency to show what we do and host
her stay,” said CLASS President and
CEO Bob Harris. “We embraced the
opportunity for her to shadow staff
at CLASS and attend meetings with
other agencies and nonprofits. We
enjoyed sharing insights into how
American organizations supporting
people with disabilities function on
operational and management levels.
“This cross-cultural exchange was
Achieve with us.
a once-in-a-lifetime experience for
everybody at CLASS and The Arc of
Greater Lawrence,” he said, “and we
are grateful The Arc of Massachusetts
recommended us as hosts.”
During her fellowship placement,
Ms. Lü wanted to learn from CLASS
innovative ways that people with
disabilities become engaged as active
members of their communities and
land jobs. She and her colleagues
work to change attitudes in China and
improve awareness and understanding
of what people with disabilities are capable of doing, but it’s been challenging. Ms. Lü was particularly interested
in how American nonprofits operate
and how individuals with disabilities
receive direct financial support.
“It was difficult for her to grasp how
‘the money follows the person,’” said
Robin Ellington, director of marketing
at CLASS. “In China, the government
funds only some of the NGOs and it’s
up to the families and individuals to
find the right services, which are not
available everywhere.
“Lü Fei was a guest in my home for
the entire program visit,” she continued. “For communications at work
and at home, we relied on an app,
SayHi, to hurdle the language barrier and she schooled my family on
Chinese culture and Mandarin. She
also turned my adult son into a noodle
master, which we continue to enjoy
and thank her for. She is a joy to be
around, extremely charismatic and
optimistic.”
Lü Fei spent most of her time at
CLASS, shadowing Day Hab and Com-
Lü Fei, founder of Beijing’s Able Development Institute, presented CLASS CEO
Bob Harris with a gift of beaded coasters
handmade by people with disabilities living
in China.
munity Based Day Services programs
in Lawrence and Wilmington, but also
had meetings set up for her with Leo
Sarkissian, Executive Director of The
Arc of Massachusetts; the Department
of Developmental Services; Massachusetts Rehabilitation Commission;
Northeast Independent Living Program; and Fidelity House, at one of
their residences in Haverhill. She also
visited a CLASS group employment
site, Joe Fish restaurant, and met with
CLASS individuals working with community partners, including Ironstone
Farm Challenge Unlimited horseback
riding therapy, Express Yrself art
classes, the Andover/North Andover YMCA, and the CLASS Healthy
Balance fitness program designed
for youth with disabilities at Andover
High School, with Merrimack College
student volunteers.
“She went to work with me every day.
I planned out her 30 days and we attended all those meetings together,”
Ellington said. “We commuted,
worked and went home to dinner
every day, everything together, every
day, all day. Then all of a sudden the
continued on page 29
27
News from the chapters of The Arc
Greater Waltham Arc receives grant from
Music Drives Us
By Leah Igdalsky
Music Drives Us recognizes the
importance of music as a way to
inspire, communicate and connect
with others.
Tim Cohen, music therapist (right), at a session with GWArc participants
Music has always been a strong
component of GWArc’s programming and recent music initiatives
are allowing us to further develop
and expand our music offerings.
GWArc was thrilled to receive a
$4,800 grant from the Music Drives
Us Foundation to expand music activities in our Day Habilitation and
Community Based Day Supports
programs. These much-appreciated
grant funds will be used for ongoing music therapy sessions, as well
as to purchase musical instruments
and equipment for use during
programming. Additionally, James
Jones, a musician and educator, is
working with a group of GWArc
participants to create and record
improvisational music, with vocals
and instruments, which will be
made available on CD. Music Drives Us, part of the Boch
Family Foundation, was created
by Ernie Boch, Jr. to support music
in New England by funding music education programs, musical
instruments for schools and music
therapy programs. Like GWArc,
28
Music provides joy through creative
expression, and can serve as an outlet to redirect attention and alleviate
stress. Roz Rubin, Ed.D, Chief Executive Officer of GWArc, described the
impact of music on GWArc participants: “Music is the universal way
that we can all connect and be successful – you can’t do music ‘wrong’
and the enjoyment, relaxation and
communication skills seen during
any music activities are visible and
beneficial.”
Some of the grant funds will support music therapy sessions, an
important component of our adult
programming. Music therapist Tim
Cohen, who visits GWArc twice
a month, has designed a curriculum to meet the needs of our
participants through a variety of
songs, instruments and strategies
to reach participants, regardless of
their communicative abilities. His
goals for music therapy sessions
include enhancing group and selfawareness; enhancing self-esteem;
stimulating creativity; providing
emotional release; and improving
memory, speech, coordination and
motor skills.
The Music Drives Us grant is also
helping GWArc to increase music
in daily programming, beyond
scheduled music therapy sessions.
GWArc has converted a room at
our Chestnut Street location into a
music room. Groups of participants
gather throughout the day to sing
and play the piano, keyboard, tambourines, xylophone and drums.
The music room has also become a
gathering place for participants and
staff at the end of the day; singing
and playing together serves as a
period of relaxation before the transition to the next part of the day.
Instruments are also used for special
events. Prior to the December holidays, participants, staff and Bentley
Service-Learning student volunteers
gathered outside for a holiday singalong, accompanied by participant
Dianne A. on keyboard.
A new guitar, keyboard, ukuleles,
karaoke machine and microphones
at GWArc’s Woodland Road location have allowed staff to arrange
frequent music groups, rather than
offering only scheduled music sessions.
As an additional music initiative,
James Jones, a jazz musician and educator, has created a music ensemble at GWArc. Eleven participants
from GWArc’s Day Habilitation and
CBDS programs gather weekly to
rehearse, and will ultimately record
their music on CD. “The group is
creating improvised music with
vocals and instruments,” James said.
“Participants are having an ‘improv’
conversation.”
Elizabeth K. is one of three participants on vocals. “I really like
continued on page 29
The Arc of Massachusetts
News from the chapters of The Arc
Minute Man Arc opens accessible putting green
Minute Man Arc recently celebrated
the opening of an accessible putting
green. Designed to be accessible
for all types of abilities, the putting
green consists of six holes -- one “no
fail” hole designed to build confidence and five progressively challenging holes.
“The accessible putting green project started with a simple idea and
snowballed from there, picking up
support along the way,” said Jean
Goldsberry, CEO. “We are so happy
to have this wonderful putting
green here at our new location, and
we are grateful for all the support
from the Rotary Club of Concord,
Spaulding Management and local
benefactors who made this possible
for us.”
“The Rotary Club of Concord has
enjoyed taking individuals from
Minute Man Arc to the driving
range and putting green at Stone
Meadow Golf in Lexington, but
logistically we were unable to serve
all adults at one time,” said Sharon
Spaulding, President of the Rotary
Club of Concord, MA. “Minute Man
Arc wanted to build their own accessible putting green at their new
location at 35 Forest Ridge Road
and the Rotary thought this would
be a great project to be involved in.
Now with an accessible and ability
friendly putting green, complete
with benches for onlookers, the Rotary can help Minute Man Arc serve
all of its participants.”
The project was made possible with
support from The Rotary Club of
Concord, Spaulding Management,
Minute Man Arc program participants, staff
and donors test out the new, six-hole,
accessible putting green recently built
at Minute Man Arc. (L-R) Zoe LoPresti
(LoPresti Contracting), Karen Bergen,
Christina Kakis, Jean Goldsberry, (Minute
Man Arc CEO), Nora McShane, Eric Boroush
(Director of Operations), Mary Blauvelt,
Sharon Spaulding (President, Rotary Club of
Concord) and Josh Weidenhamer (Director
of Day Habilitation).
Lenox, LoPresti Contracting, Northeast Synthetic Turf Company and
private donors.
Building community
with China
Greater Waltham Arc receives grant from
Music Drives Us
contd from p. 27
contd from p. 28
30 days were up and she was gone.
We communicate still by WeChat, but
it’s just not the same. She’s an amazing person and I miss her very much.”
The NCUSCR is responsible for
Chinese and Mongolian fellows’
work in the fields of legal aid, the
environment, support for community
building among marginalized groups
(primarily LGBT people, women,
children and youth, and the elderly),
and philanthropy in their home
countries. The Professional Fellows
Program is generously funded by the
U.S. Department of State Bureau of
Educational and Cultural Affairs.
Achieve with us.
singing,” Elizabeth said, when
explaining what she likes about the
music project.
“I really like playing an instrument,”
Brian D. said, as he played the
bongo drums.
In February, James will bring in
equipment to create a recording
studio at GWArc, and will record
the ensemble’s music. A percussionist drummer who has worked with
many well-known jazz musicians,
James is donating his time and recording equipment to capture and
mix the music, and will make a CD
that GWArc can distribute to GWArc
participants, family and friends, and
staff members.
In addition to his music background, James has past experience
as a case worker for individuals with
disabilities and has worked with disadvantaged youth and other groups
on similar recording projects. He
enjoys working with GWArc participants because “their minds are
open, they don’t have any inhibitions or restrictions with the music
they create.”
29
News from the chapters of The Arc
Alexander J. Tymchuck Award to Susan Jones
of The United Arc
role in developing a network of
coalitions for supporting parents
with cognitive challenges, which
led to the establishment in 2010
of The Association for Successful
Parenting. Over the past 20 years
she has organized conferences
and training workshops, bringing
together parents and professionals
concerned about parenting supports. She has conducted trainings
throughout the Commonwealth
and in other states and is currently
consulting with the Massachusetts Department of Children and
Families.
(L-R) Susan Jones received the Alexander J.
Tymchuk Leadership Award, Denice Mock
of Illinois received an award as Emerging Leader, and Lindsay Brillhart of Ohio
received an award for Parent Advocacy.
At the 2015 International Conference of The Association for
Successful Parenting, held in Memphis, TN this past October, Susan
Jones, Director of Positive Parenting at The United Arc received
the 2015 Alexander J. Tymchuk
Leadership Award for her significant contributions to the field of
supported parenting. Susan founded and directs The
United Arc’s Positive Parenting
Resource Center, which was cited
in 2012 by the National Council
on Disability as one of the nation’s promising practice programs
which prevent unnecessary removal and loss of children. This award
also recognizes Susan’s leadership
30
Tymchuk Awards are presented
annually by The Association for
Successful Parenting (TASP) to
honor the work of Dr. Alexander
J. Tymchuk, Emeritus Professor
of Psychiatry, UCLA School of
Medicine, considered by many to
be the “father of the supported
parenting movement.” Dr. Tymchuk pioneered work in the field
of supporting parents with intellectual disabilities and his work has
provided a solid foundation for
both researchers and practitioners
who work with parents and families. These awards honor his legacy
and recognize individuals who
have demonstrated excellence in
supporting parents with intellectual and other learning disabilities. In her speech accepting the award,
Susan said that Dr. Tymchuk’s
work “has been inspirational in
my own case work and that of our
program, The Positive Parenting
Resource Center. When I started
in this field 30 years ago, his work
was one of the very few resources
available for those working with
our families.”
Susan Jones has been with The
United Arc since 1985 and spearheaded work to support parents
with intellectual disabilities,
developing a program that initially
served a small handful of parents
who were experiencing termination of their parental rights to one
that works with more than 100
families annually throughout western Massachusetts, helping parents
and children remain together in
stable households. The United
Arc’s Positive Parenting Program
provides support to parents and
their families through an array of
services including individual case
management and parent skills
training, parent education and
support groups, transitional living
for families to achieve successful
reunification, mentoring support
from volunteers, and supervised
visitation which brings together
parents with children who are still
in placement. Among Sue’s recent
accomplishments was overseeing
the opening of The United Arc’s
new Positive Parenting Resource
Center in Holyoke, MA, which will
help the program better serve
families in Hampden and Hampshire Counties.
The Arc of Massachusetts
News from the chapters of The Arc
The United Arc opens new Positive Parenting
Resource Center in Holyoke
On Friday November 20th, The
United Arc held a Grand Opening
event at their new Positive Parenting Resource Center located at 208
Race Street, Suite 2, Holyoke, MA.
The United Arc provides services
to families through The Positive
Parenting Resource Center in
Hampshire and Franklin Counties,
and is excited to have this new
location in Hampden County. The
Positive Parenting Resource Center
provides parenting training and
skill development for parents with
learning differences and also offers
supervised visitation services.
Attendees at the Grand Opening
event included Holyoke Mayor
Alex Morse, State Representative
Aaron Vega, and Holyoke Chamber
of Commerce Executive Director
Kathleen Anderson. Also present
was John Moriarty, Aide to Massachusetts State Senator Donald
F. Humason. Representatives from
community service organizations
and businesses from the area included Easthampton Savings Bank,
Human Resources Unlimited, Multicultural Community Services of
the Pioneer Valley, and ServiceNet,
among others.
Welcoming remarks were given
by Representative Aaron Vega,
Holyoke Mayor Alex Morse,
Positive Parenting Program
Director Susan Jones, and The
United Arc Executive Director
Lynne Bielecki. The Grand
Opening ceremonial ribbon was
cut by Barbara Morrell, President
of The United Arc Board of
Directors, and Betsy Misch,
Positive Parenting Coordinator
for the Holyoke Positive Parenting
Resource Center, with assistance
from Mayor Morse and Representative Vega.
Jo Ann Simons named CEO of Northeast Arc
Northeast Arc for Simons, who early
in her career served as the organization’s Director of the Community
Division and Director of Family
Educational Services. During this
time, Simons started the first Family
Support Program in the state and
one of the first in the country.
The Northeast Arc has named Jo
Ann Simons, MSW, as its Chief
Executive Officer. Simons began her
new role on January 4th. Simons, who lives in Swampscott,
comes to the Northeast Arc from
Cardinal Cushing Centers, where
she has served as President & CEO
since 2008. This is a return to the
Achieve with us.
Simons has had a successful career
working with a variety of agencies
focused on serving people with
developmental disabilities. After
her first stint at the Northeast Arc,
Simons went on to serve as the
Director of Policy for the Massachusetts Department of Developmental
Services, The Deputy Facility Director of the Fernald Development
Center, and Executive Director of
The Arc of East Middlesex before
leading Cardinal Cushing Centers
in their master plan to create
intergenerational communities on
both the Hanover and Braintree
campuses.
“Finding the next CEO to lead the
Northeast Arc was a critical priority
for the board of directors, staff, and
individuals and families we serve,”
said Don Fournier, President of the
Board. “Jo Ann has had a highlyregarded career leading non-profits
dedicated to supporting people
with disabilities and we are thrilled
that she has accepted our invitation
to be part of shaping the future of
Northeast Arc,” said Fournier.
Simons currently serves as the
disability advisor to the Ruderman
Family Foundation and as a Trustee
of LIFE, Inc. of Cape Cod. She is a
continued on page 32
31
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Achieve with us.
Jo Ann Simons named CEO of Northeast Arc
contd from p. 31
past chair of the National Down
Syndrome Society, past president
of the National Down Syndrome
Congress, and a consultant to
Special Olympics. Simons is the
author of the Down Syndrome
Transition Handbook, and Footprints
for the Future. She also contributed
chapters to the books, Babies with
Down Syndrome and Treating the
Dental Patient with a Developmental
Disorder. She was on the Governor’s
Transition Committee on Health
Care and has been appointed to
the Governor’s Commission on
People with Developmental and
Intellectual Disabilities by Governor
Charlie Baker.
“This is a great opportunity for me
to return to an extraordinary organization where I worked in the early
part of my professional and personal journey,” said Jo Ann Simons. “The Northeast Arc has grown to
32
become the second largest Arc in
the country and I look forward to
helping build on the incredible
accomplishments they have made
over the last 61 years.”
Simons has two adult children:
Jonathan, who has Down syndrome and lives independently in
his own home and has a life filled
with meaningful paid work, important volunteer activities, and many
leisure pursuits; Emily is a litigator
with Ropes and Gray.
Simons received her Bachelor of
Arts degree in Urban Studies from
Wheaton College and a Masters of
Social Work degree in Policy, Planning, and Community Organization
from the University of Connecticut.
Simons succeeds Jerry McCarthy,
who retired at the end of 2015 as
CEO after thirty-six years in the role. List of Advertisers
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