State Budget for 2016 is in play

Transcription

Advocate
Spring 2015
State Budget for 2016 is in play
By Charlie Fiske and Leo Sarkissian
(L to R) Alice Taylor, Liz Martineau and Gillian Buckley testifying on
behalf of The Arc and ADDP before the final legislative hearing of the
Joint Committee on Ways and Means.
The critical need
for funding
was effectively
articulated by
three families
who told their
stories for the
Joint Ways and
Means Committee of the State
Legislature. The
Arc and ADDP
coordinated efforts both for the
Campaign for the Future moves ahead
The Arc of Massachusetts’ first-ever
capital campaign, “The Campaign
for the Future,” is moving forward,
thanks to continuing support from
individual and corporate donors.
To date, contributions and pledges
have reached approximately
$720,000.
The primary goal of the campaign
is to raise $1,200,000 to build and
maintain a new headquarters
building for The Arc. Executive
Director Leo V. Sarkissian has
announced the appointment
of Group 7 Design, Inc. as the
Achieve with us.
architectural firm for the project
and Wayne Del Pico as construction manager. “Now that our
unusually harsh winter is over, we
hope to break ground early this
summer,” said Sarkissian.
The project will include demolition of The Arc’s present building
and construction of a new facility
on the same site on South Street
in Waltham. The new building will
be fully accessible and will have
expanded space for small meetings
and trainings, as well as improved
continued on page 3
hearing and for ongoing legislative
advocacy in the months ahead to
restore key funding while ensuring new programs move ahead on
schedule. Although the Governor’s
budget included key increases for
adult autism increases and residential supports, it also reduced
Family Support by $7.5 Million and
day and employment services by
$9.7 Million at the Department of
Developmental Services (DDS).
continued on page 4
Inside this issue...
Article
Page
Government Affairs .....................4
Operation House Call................11
The Friendship Corner................16
Education and Training..............18
News from the Chapters............20
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
Florence Finkel, 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
Christopher Jenkins
Financial Officer
2
Hoop Mountain and TD Garden host
basketball tournament to benefit The Arc
On Thursday,
April 9, 2015,
Steve Gibbs,
representing
Hoop Mountain, provided
The Arc of
Massachusetts
with $19,354
in donations
through a
basketball
tournament
co-sponsored
by TD Garden
Steve Gibbs of Hoop Mountain being thanked by Leo Sarkissian of the
and Hoop
Arc of Massachusetts for the donation.
Mountain.
Gibbs, together with Steve Nazro of TD Garden, played key roles in making
the charity event a reality. The proceeds from the event will advance
education and advocacy on behalf of individuals with intellectual and
developmental disabilities.
The charity event had taken place on Martin Luther King Day at the TD
Garden. The event featured teams from eleven private and preparatory
schools from across southern New England, including Pingree, Lexington
Christian Academy, Buckingham Browne & Nichols, Belmont Hill, Thayer,
Providence Country Day, The Rivers, Noble and Greenough, Brooks,
Lawrence, and Cheshire.
TD Garden has been supporting local high school athletic programs since
its opening in 1995, with the goal of giving young athletes the unique experience of playing in a famous and professional arena. The day managed
by Hoop Mountain served as a benefit for The Arc. Thank you also to the
Red Sox Foundation and Merrill Consulting who participated as sponsors
of the event.
The games also honored the memory of Dr. Martin Luther King Jr., whose
noble leadership in civil rights provided an inspiring message of social justice and equal opportunity. Members of the disability rights movement have
drawn inspiration from Dr. King’s leadership. Kathy Martinez who heads
disability policy at the US Department of Labor echoed such sentiments in
her posting: “There is no question that the civil rights movement led by
Dr. Martin Luther King and others inspired the disability rights effort.”
Host committee members of the event included Andrew Lawson, Jim
Lawson, Frank Zavaglia, Casey Maynard, Richard Berman, Jack Wier, Rob
Gibbs, Samantha Gibbs in addition to Hoop Mountain staff. TheArc
ArcofofMassachusetts
Massachusetts
The
Campaign for the Future moves ahead contd from p. 1
facilities for staff and visitors. The
new building will also allow The
Arc to hold meetings with our
dozens of partner agencies, host
legislators and donors in comfort, conduct efficient legislative
outreach through the use of the
latest technology, offer a venue
for workshops for family members
and professionals, and provide a
suitable work environment for our
team of staff, volunteers and workstudy students. A key component
will be the Daniel, Angela &
Michael Becker Center for
Advocacy, funded by the
generous donation of a total
of $300,000 by Angela Becker.
Board chairman Dan Sullivan
noted that “The Arc has helped
tens of thousands of people over
the years and it’s fitting that we
respond in kind to ensure a legacy
for the future.”
publications of The Arc of Massachusetts. Larger donations carry
additional benefits and forms of
recognition. Please contact Judy
Zacek (781-891-6270, ext. 102) to
arrange an appointment to discuss
your major gift. Donations can be
made in cash or securities, and
pledges can be paid over a threeyear period.
We recognize, of course, that
not everyone can make a Major
Gift. As a statewide organization
serving people of all ages with a
broad range of disabilities, The
Arc of Massachusetts would be
pleased to receive your support in
any amount. For example, a gift
of $5,000 would be a significant
Achieve with us.
Your contribution, payable to
The Arc of Massachusetts, can be
sent to us at 217 South Street,
Waltham, MA 02453. Remember also that many companies
have Matching Gift programs
for employees who contribute to
nonprofit organizations such as
The Arc.
Thank you for your participation!
At Cardinal Cushing Centers, we help individuals
with disabilities reach new heights.
• Elementary, Middle
and High School
Programs for students
ages 6-22
There are many ways you can
participate in The Arc’s capital
campaign, whatever your level
of giving.
Major Gifts are pledges or donations ranging from $10,000 to
$50,000 or even more. At each
level there are various benefits
and forms of recognition. For a
$50,000 donation, for example,
a room in the new building will
be named for you; for a $25,000
donation a window in the building will be named for you; and for
a $10,000 donation, your name
will be inscribed on a plaque in a
prominent location in the building.
For each of these, you will also be
recognized for various lengths of
time on all donor lists and major
contribution toward the purchase
of furniture; a donation of $1,000
could be used to create a fully accessible bathroom; a contribution
of $500 would help cover the cost
of signage outside and within the
new building; and a gift of $100
could be used to purchase works
of art by people with disabilities.
• Post-Secondary
Employment &
Educational
Programming for
students ages 18-22
• Adult Residential,
Employment
Programs, and Day
Programs for
individuals ages 22
and older
• Recreation and
Enrichment Programs
for our students,
adults and
community members
of all ages
Admissions Contact:
Michelle Markowitz
405 Washington Street
Hanover MA 02339
781-829-1205
[email protected]
www.CushingCenters.org
3
Government Affairs
State Budget for 2016 is in play contd from p. 1
support and day/employment
services cuts were restored. It appeared that the Ways and Means
budget provided $14 Million in
funding above the Governor’s budget. In addition, transportation was
given a much needed boost and
a new adult autism services line
item was established as requested.
Much appreciation and thanks to
Chair Brian Dempsey and his committee (Stephen Kulik, Vice Chair,
and Benjamin Swan, Assistant Vice
Chair). We also appreciate the
leadership of Speaker DeLeo and
his team.
Alice Taylor, Liz
viduals with intellectual
Martineau and Gillian
and developmental
Buckley provided
disabilities, Alice, Liz
heartfelt stories of
and Gillian helped the
the need for continlegislators understand
ued support services
that care and support
and the challenges
is really a family affair.
sometimes faced
Cuts in the line items
in caregiving. Over
would end up placing
20,000 individuals
pressure upon families
on DDS caseload
who have jobs and
are living with their
other responsibilities.
Representative Brian Dempsey
families. After relatIn many cases, the day
ing each of their
cut would mean that individuals
personal family stories, they asked
would be left without a program
the committee to both restore and
to attend during the day. The
increase funding levels for budget
family support cut would hurt
line items 5920-3000 (Family Supthose same families even though
port and Respite) and 5920-2025
the cost of these services saves the
(Day Habilitation and Employment
Commonwealth $50,000 or more
Services).
per year. With restored funding,
families can continue the care and
After the testimonies, a number of
support that offer stabilization.
committee members approached
Gillian, commenting on her
As we went to press, a preliminary
testimony and pledging support
review of the House Ways and
to ensure that the line items be
Means version of the FY 2016
adequately funded. Though the
budget (released on April 15)
testimonies focused upon indicontained good news as family
The budget process will continue,
of course, until both the House
and Senate agree on a single version and send it to the Governor
for his signature. Please use this
annual opportunity to help determine funding for services for
those with intellectual and developmental disabilities. Your stories
are essential in educating legislators. Go to thearcofmass.org and
choose “Take action” to share your
thoughts with legislators.
Cotting SChool
“...special education, done right.”
~ Cotting Parent
Shine Jewelry is designed and handcrafted by individuals
with disabilities supported by Northeast Arc’s Heritage Industries.
On sale at:
ArcWorks Community Art Center • Peabody
Peabody Essex Museum, re-find & Salem Farmer’s Market • Salem
www.heritageindustries.org/shinejewelry
Lexington, MA
www.cotting.org
781-862-7323
School Year Program
September to June
Ages 3-22
Extended Year
Summer Program
Ages 3-22
HOPEhouse
Residential/Transitional
Ages 17-22
Elizabeth Russell ~ Director of Admissions ~ [email protected]
4
Government Affairs
Hundreds gather at the State House for
The Arc/MDDC Legislative Reception
Governor Baker presents Julie Fitzpatrick
(MDDC Board Chair) with proclamation of
March as Intellectual and Developmental
Disabilities Awareness Month
Part of the crowd at the State House
The 37th annual legislative reception, held at the State House each
year by The Arc of Massachusetts
and the Massachusetts Developmental Disability Council, was
honored by the attendance of
Governor Charlie Baker, Senate
President Stanley Rosenberg and
House Speaker Robert DeLeo, the
three leaders of state government.
Governor Baker not only shared his
commitment to disability services,
but spent several minutes shaking
hands and posing for pictures with
many of the attendees. He listened
attentively as one parent shared
her concerns about the loss of family support services. The Governor
commented on the wonderful
opening by Mary Ann Ziegler, who
Achieve with us.
sang the national anthem at the
start of the reception. Mary Ann’s
mother, the late Martha Ziegler,
was one of the early pioneers in
disability advocacy and she would
have been proud to hear her
daughter at the State House.
Mary Ann Ziegler sings the National Anthem
Senator John Keenan and Representative Sean Garballey were honored as Legislators of the Year for
their strong support of disability
legislation and budget. Speakers
included Governor Baker, Senate President Rosenberg, Speaker
DeLeo and members of the Rurak
family. Brian Leary served as moderator of the program.
Jim, Kathy and Rose Rurak shared
their story and and spoke about
Rose’s return to living at home
with them after some time at a
community residence. They explained how it’s critical to “listen”
even if there are no words – as in
the case of their daughter. Even
without words, family and friends
continued on page 6
5
Government Affairs
Hundreds gather at the State House for
The Arc/MDDC Legislative Reception cont’d from p. 5
can share their preferences. Jim, a former
mayor of Haverhill, noted this is important
whether a family member has a disability
or not. Kathy shared how DDS and their
local chapter of The Arc supported them to
develop in-home services so that they could
craft the right kind of support desired by
their daughter Rose at home.
Senator John Keenan, Legislator of the Year awardee, with some of his constituents
I am
New England Village.
The Rurak Family
At New England Village, program participants are in charge
of defining the direction of their own lives, and our job as
we all see it, is to find the best ways to support them as
they pursue their dreams.
We currently have openings and are accepting private and
state-sponsored referrals. We offer Residential, Employment,
Community Based Day Services and Day Habilitation options.
Call (781) 293-5461 x103 or email [email protected]
to schedule a tour or to request information.
New England Village
• Pembroke • Hanson
• Kingston • Plympton
Representative Carolyn Dykema and Leo Sarkissian congratulate
Representative Sean Garbally (center) on receiving a Legislator of the
Year award
www.newenglandvillage.org
6
Government Affairs
State House story
By Susan Senator
In February of 2015 a friend called
and asked me if I had any suggestions for speakers on Autism
Awareness and Acceptance Day at
the State House.
I had been a speaker on Autism
Awareness Day back in 2006,
which had been a great experience. But the most exciting Autism
Awareness Day I’d ever attended
by far had been in April, 2007,
when the guest speakers were a
young man and his mom. This
young man had a developmental
disability, perhaps autism, and he
had stood up at the podium with
his mom, a longtime activist. He
was in his early twenties. I don’t
remember if he actually spoke but
I do remember his stage presence,
his proud posture, his adult demeanor, and I remember thinking,
“Wow. How does that even happen?” I was, of course, wondering
what my son Nat would be like
when he was that age. There was
a small smoldering sadness kind
of behind my eyes, which back
then was so familiar. In those days
I was always looking at Nat with so
much worry about who he would
become. He was a young teen
then, and had accomplished so
much with his life – team sports,
bar mitzvah, comfortable traveler,
excellent student. But I was focused on grown-up Nat, unknown
Nat. Out-in-the-world Nat. And
most of the time when I thought
of him it was with the sweeping
protective despairing love of
Achieve with us.
Mrs. Jumbo THE ELEPHANT
(Dumbo’s mom).
But I put that pain aside and
went back into my life at the time,
raising my boys, writing books,
and attending and speaking at
events like this one. When I got
the call from one of the organizers
that winter day, I thought about
one young man I knew — Scott
Lentine, a poet, research assistant,
and self-advocate, who could speak
about his life for Autism Awareness
Day 2015.
As we were talking, though, the
organizer made it clear that they
were also looking for a speaker
who had fairly severe autism –
someone who represented the
end of the spectrum that is rarely
written about or talked about. I
thought of Nat right away and
volunteered him as a speaker, with
his caregiver (John) to round it out.
Why couldn’t Nat do it, after all?
He could answer questions as long
as they were shaped around specific information. And he could type
his answers. He could construct a
speech about Shared Living, which
was one of the topics scheduled
that day.
My husband, Ned, was a little
skeptical when I told him. This
was our old familiar pattern of my
big floaty dreams being met with
Ned’s rock solid sense of reality. “It
might be too much for him,” Ned
said. “I don’t know if he’ll be able
to focus.”
Nat Batchelder
I’d come a long way since those
days when he was 15. More important, so had Nat. The process went
just the way I thought it would—
a tribute to my deep familiarity
with Nat’s abilities and his favorite
pastimes. Typing answers to questions was something he felt strong
about, after all. I told him: “Some
friends have asked if you want to
talk about your life with John, for a
special day in the spring, in April.”
He said, “Yes” right away. So I told
him about how he would create
a speech and that by reading it to
the crowd he would be helping
others understand how to live in
an apartment and have a job, like
he did.
He eagerly sat with me, laptop
open, eyes strained as if to catch
the words I spoke. I asked him
questions like, “Nat, where do you
live?” And he would answer.
“Okay, type that,” I’d say. If he got
continued on page 8
7
Government Affairs
State House story contd from p. 7
lost I would repeat his own words,
and restart him. After about a half
hour we had 73 words about Nat’s
experiences with Shared Living.
Here is the speech:
Thank You
Living at Kelton Street.
by Nat Batchelder
Brought Bag up stars to apartment
at kelton street
At Kelton Street I eat Lunch go to
bed sope and shawor, get ready
pajamas go to bed
Jon coms, says get up
about his experiences with autism
families.
Then it was Nat’s turn. He seized
hold of the podium and began
almost immediately.
You could not hear a thing,
though his lips were moving correctly over his written page. One
of the speakers – an autism mom
who had created her own day
program and residence – got up
to push the mic closer to Nat. I
still could not hear him. Dammit,
I thought. Here I go. “Louder!”
I shouted.
Nat shouted into the mic for one
phrase, then went right back to
his whisper. And I sat there feeling
like an idiot because I had stepped
in like a pushy stage mom and
interfered with this young man’s
speech. But really, what would
anyone expect from me? That’s the
kind of mother I am, and I am the
kind of mother Nat needs.
In the end, I don’t believe Nat
cared. He finished his speech, in his
softest, quiet voice. But it was the
voice of one of our guys, and it so
roared like thunder within those
marble halls.
Brush teeth
Go to ASA Do meals on wheels
Back to Kelton Street. movies with
jon. Put plates in dishwasher. set
table. put datergent Lindre in drire
Feel happy
love nat
Better than most speeches one
hears at the State House, don’t
you think?
On April 2, Autism Awareness and
Acceptance Day finally came. I
nervously awaited Nat and John’s
arrival at the State House. When
Nat entered the Great Hall, glowing in his dove gray suit and silver
striped tie. I gave him a kiss and
gave John a hug. Nat was wired,
but in a good way.
The Governor was ahead of Nat
in the order of the program, and
he gave a warm, sometimes funny
speech, more like telling us stories
8
Another perspective on Shared Living
By John Excellent
I have to admit going into shared living I was little scared – okay, a lot
scared. I remember thinking, am I ready to be responsible for another person? Would I lose my identity living with him? Would I lose the freedom to
come and go as I pleased? What if I wanted to leave Massachussetts, how
would that be possible?
Still, from having worked with Nat for a few years then, I thought it COULD
WORK. I knew that Nat had a voice and wasn’t afraid to speak up, Like
when he doesn’t like what I cook for dinner, he’ll say “no” and go to the
fridge and find something else and make it his own. How when he’s stuck or
needs help he’ll say “John I need help please.” I now, know that when Nat is
unsure he will hesitate or look away. Which is the cue for me to repeat and
give him time to process or offer something else. When you want Nat to
ask something and he is unsure, he will make eye contact until he gets my
attention. Like if when we were on our way to pick up pizza, he kept looking at me. I finally said “what?’’ Nat said “go get pizza” and when I replied
“well where do you think I am going?” and Nat said “the wrong way.”
What I did not know was how strong Nat and I could be together. Living
with each other has not only helped us to grow, but allowed us to create a
bond I never thought possible: the bond between brothers! Brothers, who
teach each other so many things, teach each other patience, teach each
other new skills. Brothers who not only get the chance to work together but
continued on page 9
Government Affairs
Real Lives: next steps
Simply said, “Real Lives” allows
individuals and families the authority to shape state-funded supports
the way they feel best fits their lives.
It is what we call self-determination.
The Department of Developmental
Services (DDS) has offered some
level of flexible supports since 1997,
starting with a grant from the
Robert Wood Johnson Foundation.
Having said that, the “Real Lives”
bill continues to ensure accountability in the use of public dollars.
In the present system, despite the
availability of self-determination options, most individuals are offered
“slots” at homes or day service
settings. This is related to two factors. First, funding is concentrated
in places as opposed to “money
following a person’s plan.” The second factor is the lack of staff awareness about self-determination. Staff
in educational and adult settings often don’t discuss such options with
individuals and families. This means
that individuals in need of services
often have limited ideas about what
is available.
Today DDS has developed an aggressive schedule to ensure that
self-determination is a clear option for all who obtain services.
An advisory board began meeting
in January 2015. A work plan was
released on March 4, 2015, to
address all the components of the
new law. Two examples include
the appointment of well-informed
regional liaisons at DDS, and a
training program for all DDS staff
with a target completion date of
this August 2015. The training also
will be provided to other organizations and
settings.
The work
plan can be
reviewed by
you via the
DDS website (Go to
mass.gov/
dds and
pick Self-determination under “Key
Initiatives” under list of Programs/
Services).
The elements of self-determination
included a person centered plan, an
individual budget, and mechanisms
to implement these through the ISP
(individual supports plan) and a financial management service. Those
elements already exist. Support
brokers, who are called “facilitators” in the law, are also available
through state and private entities.
We hope that the next year finds
many more individuals aware of
self-determination and taking advantage of this option.
Riverbrook
where exceptional women thrive!
Another perspective on
Shared Living contd from p. 8
play together. Who get to enjoy new experiences
together, like trying out a new restaurant. Or going
to the Halloween store the night before Halloween
and try on lots of costumes together while making
new friends.
Brothers who teach each other how to stop and
smell the roses on this journey of life. Now being
ten months in, I am beyond thrilled I did.
Shared living has been such a wonderful opportunity -- not only for Nat but for me!.
Achieve with us.
Community. Opportunity. Respect. Safety.
Trusted by families for over 50 years, providing unique residential and innovative
day services to exceptional women aged 22 and up. Not just a home…a life.
stockbridge, massachusetts 413 298 4926
riverbrook.org
9
Government Affairs
Families make a difference!
As a rule, families are the best
place for all children to thrive.
Our fast-paced technological
society has thought of nothing
better! Parents and families are
the most effective change agents.
By becoming strong advocates,
teachers and leaders, parents can
affect change among school teachers, extended family members,
neighbors and so on. The most
important impact parents can have
is upon their children; ensuring
children, including those with disabilities, develop a strong sense of
confidence, their highest abilities
and self-determination.
Why are “self-determination” and
maximizing one’s ability to selfdirect so important? Research has
shown that young people with
disabilities develop new skills regardless of the impairments which
limit functioning. As early as 1972,
Bingt Nirje, the man who helped
coin the term “normalization,”
talked about self-determination for
all. He realized that acting from
the perspective of the individual
with the disability -- whether verbally expressed by the individual or
not -- was essential in assisting all
with disabilities to enter the mainstream of community life.
The Guild for Human Services
Transforming lives, realizing potential.
If families
are essential
in helping
children thrive
and develop
self-determination, why
has funding
for family support
not grown to match the need for
20,000 families that we know of
on the Department of Developmental Disabilities rolls? Instead we
are facing a significant cut!
Family support services are a
package of essential tools to assist
families to do their job. Some examples include respite care, assistance obtaining medical supplies,
after-school programs for schoolage children and teens; and skills
instruction. Help families obtain
the tools and support to help their
child, regardless of disability, attain
valued goals. The right support
can lead to full, meaningful lives.
Editor’s Note: This article was
adapted from the Mass Alliance for
21st Century Policy informational
brochure entitled, “Family Support
and Self-Determination: Connections
to a Life in the Community,” 2013.
(You can learn more at
thearcofmass.org/PublicPolicy—
scroll down to 21st Century Policy).
How are we going to protect
them in the future?
By planning a legacy today!
If The Arc of Massachusetts is already in your will,
please let us know.
411 Waverley Oaks Road, Suite 104,
Waltham, MA 02452
Tel 781.893.6000 Fax 781.893.1171
www.theguildschool.org
[email protected]
10
Some people like to remain anonymous, while
others prefer a bit of recognition. Either way,
please let us know your intentions because it helps
The Arc plan for the future. Contact Judy Zacek at
781-891-6270, ext. 102 or [email protected]
Operation House Call
About Operation House Call
other and receive feedback from
the OHC team.
An Operation House Call class at Boston University School of Medicine
Operation House Call (OHC) at
The Arc of Massachusetts teaches
medical, nursing and other graduate level health sciences professionals about individuals with
intellectual and developmental
disabilities using families as teachers. This unique program addresses
some of the major barriers in
quality health care for people with
disabilities: lack of knowledge and
poor communication. In studies
throughout the country, these
barriers have been identified. OHC
addresses them effectively.
The program began in partnership
with The Arc of Greater Boston
and Boston University School of
Medicine (BUSM) 24 years ago.
Today it has expanded beyond
BUSM to Tufts University School of
Medicine and Simmons School of
Nursing and Health Sciences.
The course requires a 90-minute
class taught by an OHC parent
Achieve with us.
This innovative teaching program
currently reaches over 300 students a year. Its philosophy is that
families can be the best teachers
when they share their experiences
with students. The program is
funded in part by a charitable contribution from the Massachusetts
Down Syndrome Congress, and
contributions from each participating academic institution. It also
must rely on private donations
to cover full costs. Please see the
accompanying article about ways
that you can support this vital, effective program.
instructor, including 30 minutes
of co-teaching by a young selfadvocate with intellectual and/or
developmental
disabilities.
Each student
Tailored Financial Services for
also particiFamilies with Special Needs
pates in a twoIf you are responsible for a family member with a disability or
hour home
other loved one, you face unique challenges involving complex
financial situations. We understand.
visit to an
For the last 15 years we have provided caring, experienced
OHC volunteer
financial guidance to special needs families, helping them
host family
pursue long-term financial security for their loved ones through
informed estate and tax planning, investment and insurance
with a student
planning and special needs trust management strategies.
partner. To
Please contact us for a free, no-obligation consultation. It would
complete the
be our privilege to serve you and your family and help you
pursue the long-term financial independence you deserve.
requirements
of the course,
special needs
students share
financial
planning
their personal
A Division of Shepherd Financial Partners
and practiCynthia R. Haddad, CFP®
cal learning
& John W. Nadworny, CFP®
1004 Main Street
from OHC in a
Winchester, Massachusetts 01890
private online
(781) 756-1804
[email protected]
forum. In this
www.specialneedsplanning.com
way they learn
Securities and advisory services offered through LPL Financial, Member FINRA/SIPC
from each
11
Operation House Call: A Research Study
By Nicole Marden, RN and Rebecca Delande, RN
Over the past year, two Family Nurse Practitioner students
from Simmons College have been
conducting research to explore
why families volunteer to participate in the Operation House Call
program. Operation House Call is
a program offered through The Arc
of Massachusetts in which families
of children with an Intellectual/
Developmental Disability (I/DD)
volunteer to teach medical students. Medical students are taught
not only about providing comprehensive healthcare for this patient
population, but also the rewards
and challenges families experience
when raising a child with an I/DD.
Initially, the Operation House Call
program only included medical
students; more recently, however,
graduate students in the Physical Therapy, Nutrition and Family
Nurse Practitioner programs at
Simmons College School of Nursing and Health Sciences (SNHS)
have been involved in the program
as well. While the students participating in the program are able to
learn from these children and their
families and use this information
for their future practice, it was not
clear what the experiences of the
participating families were.
 Abel Therapeutic Center
 Family Autism Center
 Family Support Center
 Harbor Counseling Center
We are pleased to announce that we now provide:
Adult Family Care for adults with disabilities!
Please contact:
Deborah K. Wood, Senior Director of Family and Community Supports
The Arc of South Norfolk
789 Clapboardtree Street
Westwood, MA 02090
In order to find out
about the parent’s
perspective, research
was conducted via
SurveyMonkey, an online survey tool. A link
to a brief, 12-question
open-ended survey,
as well as background
information about the
research study, was
emailed to 166 families
that are currently par-
ticipating in the Operation House
Call program. The questions were
formatted in order to gain knowledge about why families participate
in Operation House Call, what
they gain from their participation,
and how they believe the program
could be improved or changed.
Of the 166 families emailed, 12 responded. All of the 12 respondents
completing the study were mothers of children with an I/DD. The
current age of the participants’ children with an I/DD ranged from 4 to
29 years, with a mean age of 18.75
years. Participants learned about
the Operation House Call program
from an array of sources including a
Down Syndrome Group, Massachusetts Down Syndrome Congress,
and Massachusetts Family Voices.
In general, the respondents to this
survey reported that participating
in Operation House Call has been
a rewarding experience for their
family. Many respondents reported
feeling that they were able to
“give back” to their community by
educating others about caring for
continued on page 13
Specialized Housing, Inc.
Working with families to create innovative
independent living opportunities since 1983 –
home ownership and supported apartments.
781-762-4001 Ext. 336
www.arcsouthnorfolk.org
Specialized Housing, Inc.
45 Bartlett Crescent
Brookline, MA 02446-2220
12
tel (617) 277-1805
fax (617) 277-0106
www.specializedhousing.org
Operation House Call: A Research Study
contd from p. 12
patients with an I/DD. Additionally, some respondents reported
that their child’s participation in the
program gave them a sense of purpose, taught them how to present
themselves to others, and that their
children were proud of their role as
a family educator.
When asked about health care for
their child with I/DD, many respondents reported feeling that the care
their child received was different
than that of patients without an I/
DD. Participants reported feeling
that generally medical providers
lack education on how to talk to
these patients and can brush off
symptoms based on the patient’s
diagnosis, which they feel is the result of a lack of education on caring
for this patient population.
Overall, the respondents of this survey were positive about their participation in Operation House Call,
calling it a satisfying experience.
The respondents reported that they
enjoyed the opportunity to help
educate and better prepare future
medical professionals to provide
competent health care to children
with an intellectual or developmental disability. The respondents were
proud of their accomplishments
in shaping the views of medical
providers about caring for children and adults with an I/DD. All
twelve respondents reported that
they would recommend Operation
House Call or a program like it to
other families with a child with an
I/DD.
Achieve with us.
To ensure a stronger future for Operation House
Call, donors John Campbell and Susanna Peyton have
generously created two matching gift programs. Their
family has supported OHC since 1994, starting out as host
family volunteers.
OHC Dollar Matching Gift: Any donation earmarked to OHC
will be matched dollar for dollar to a maximum of $5,000 in
matching funds for this academic year. This means a contribution of $50 will equal $100 for OHC. With a maximum of
$5,000 in matching funds, we can reach $10,000 in additional
support for OHC if enough of our readers participate. This
total can be reached easily given our reader base of more
than 8,000. If 100 people give an average of $50, we would
reach our goal through this program (200 people at $25 and
so on!) This grant program will run for three academic years
beginning June 2013.
Matching Gift to Recognize Host Families: This matching
gift recognizes the valuable contributions which host families make to the program when they allow medical and other
health graduate students into their homes. In 1994, John
and Susanna opened their home to OHC. They appreciate
the effort families make when they take the time to educate.
Without our volunteer families, Operation House Call would
not exist. The participation of host families will be recognized
with a gift of $25 per home visit up to a maximum of $5,000
during this academic year. With more than 300 students
every year, the program requires many home visits! Again:
this grant program will also run for three academic years
beginning June 2013.
Please consider participating. Your gift will be matched. You
can give online (make sure you note OHC) or call us and
request an envelope (781-891-6270, extension 100). And
you can contact us if you are considering becoming a host
family, too. Feel free to email us for either reason at
[email protected] and put OHC in the subject line.
Learn more about OHC at arcmass.org/ProgramsatTheArc/
OHC-HealthCareProject
13
HealthMeet findings:
What are we learning?
The Boggs Center -- New Jersey’s University Center
for Excellence in Developmental Disabilities Education,
Research, and Service recently evaluated assessments
of 258 participants with intellectual and /or developmental disabilities (I/DD) in Massachusetts. These
results are from year one and two. HealthMeet is in
its final year and partners throughout the state are
currently conducting reassessments. Funded by the
Centers for Disease Control and Prevention, HealthMeet brings together chapters of The Arc, health
professionals such as doctors and nurses, and others
who study health to help people with intellectual
and/or developmental disabilities live healthier and
longer lives.
MAKE
YOUR PLAN
BECOME
A REALITY
The mission of the SUPPORTbrokers
program is to assist individuals with
disabilities and the elderly to
achieve community
membership based upon
their personal vision
217 South Street
Waltham, MA 02453
Phone: 781.891.6270 EXT109
E-mail: [email protected]
www.supportbrokers.org
14
The mission of the HealthMeet project is to initiate
lasting, fundamental change at all levels of the health
care system.
Key Findings
•T
he proportion of Massachusetts HealthMeet
participants with a BMI representing healthy
weight (14%) was much lower than the proportion
of the US population with a healthy BMI (29%).
•W
hile the overall obesity rate among
Massachusetts HealthMeet participants (38%)
was slightly lower than the general population
(41%), the extreme obesity rate (9%) among
HealthMeet participants was 1.5 times the rate
in the general population (6%).
•T
he proportion of underweight Massachusetts
HealthMeet participants (14%) was seven times as
high as the proportion of the US general population
that is underweight (2%).
• F ruit and vegetable consumption reported by
Massachusetts HealthMeet participants was much
lower than that reported by the US population as a
whole. Only 4% of HealthMeet respondents reported consumption of more than five servings per day,
compared with 23% of U.S. adults reporting that
they consumed fruits and vegetables five or more
times per day.
•T
he rate of missing teeth was nearly three times the
rate among the general population – 29% among
MA HealthMeet participants, compared with 10%
in the US general population.
•T
he proportion of Massachusetts HealthMeet
participants who reported having fallen in the past
year (20%) was four times the proportion of noninstitutionalized older adults in the US who reported
having fallen in the past year (5%).
The Selma Connection
By Judy Zacek
On March 7, 2015, the U.S.
observed the 50th anniversary
of what came to be known as
“Bloody Sunday,” when citizens in
Selma, Alabama, began what they
intended as a peaceful 54-mile
march from Selma to Montgomery, the state’s capital, to press
for removal of Jim Crow laws and
practices that had deprived them
of their legitimate right to vote.
As the marchers started to cross
the Edmund Pettus Bridge over
the Alabama River, they were
met by a wall of state troopers
and a Dallas County posse, who
proceeded to attack the unarmed
men, women and children.
People were beaten, trampled
by horses, and left lying on the
bridge.
Photos of the vicious attack appeared on the front pages of
newspapers around the world,
and CBS interrupted its broadcast
of the film “Judgment at Nuremburg” to air a live report of what
was taking place. The ironic juxtaposition of a film about the horrors of Nazism and the live report
of the horrors of racism was clear
and helped awaken our nation to
the need for action.
In the days that followed, President Lyndon B. Johnson called on
Congress to pass a strong Voting
Rights Act, and Congress – in a bipartisan move – responded. Hundreds of thousands of previously
disenfranchised African-Americans
were able to register, vote, run
Achieve with us.
for office and enjoy the same civil
rights as their fellow citizens.
As the 50th anniversary of
“Bloody Sunday” approached,
the call went out for people
concerned about issues such as
voter suppression to come back
to Selma, so along with thousands
of others I spent the weekend of
March 5-8, 2015 in Alabama. I
was privileged to meet veterans
of the 1965 Voting Rights
Campaign, to visit some of
the landmarks of that struggle
not only in Selma but also in
Montgomery and Birmingham,
and to hear eloquent speeches
by political leaders and sermons
by inspirational clergy of several
faiths. While honoring those
heroic marchers of 1965, they also
delivered an important message:
our work is not yet done. Indeed,
with voting rights under attack as
never before, we as a nation need
to renew our commitment to
assuring that all are treated
equally and fairly.
Being in Selma reminded me that
the Rev. Dr. Martin Luther King,
Jr. often remarked that “injustice
anywhere is a threat to justice
everywhere,” and that it is widely
acknowledged that the civil rights
movement led by Dr. King and
others also inspired the disability
rights efforts.
That’s what I call “the Selma connection” to the work of The Arc.
The specific focus may differ, but
both movements seek to remove
barriers to full participation in
society. Both are fundamentally
social justice movements – and
both depend on a commitment to
ongoing advocacy to achieve their
missions.
There have been many positive
advances since the civil rights
movement of the 1960’s, and
there have been many remarkable improvements in the lives of
people with disabilities and their
families since The Arc movement began in the 1950’s. Those
accomplishments came about
because people of vision and
determination were willing to
come forward and push legislatures – and society – to do what
was right.
In the year ahead, The Arc of
Massachusetts will celebrate the
60th anniversary of its founding.
This anniversary will provide an
opportunity to look back over six
decades and honor those whose
vision, energy and support have
brought about so many improvements in the lives of people with
intellectual and developmental
disabilities. It will also foster
awareness of how much more
needs to be done.
In the months ahead you’ll be
hearing more about The Arc of
Massachusetts’ plans for celebrating its 60th anniversary. I hope
you will join with us in renewing
your commitment to improving
the lives of those we serve.
15
The Friendship Corner
Strategies for Direct Support Professionals to promote friendships
between the people they support and unpaid people without
disabilities in the community
By Mary Ann Brennen and Jim Ross, Widening the Circle
Many people with intellectual and
developmental disabilities still live
in a world in which they are congregated together and segregated
from their peers without disabilities. Kids with disabilities may be
sent to specialized schools far from
their neighborhood. Even if they
go to their local public school, they
may be in substantially separate
classrooms. Recreational opportunities may be limited to activities
with other kids with disabilities.
Adults might live in group homes
or still in institutions. Work might
be in Day Habs or workshops or
enclaves.
Perhaps your most important
responsibility as DSPs is facilitating
relationships between the people
you support and unpaid people in
the community who do not have
disabilities. You may feel that helping people make these important
connections is too complicated
for you in your busy work, but
there are some things that YOU
can do to enhance the chances of
friendships developing and being
sustained over time:
1. Do not underestimate the influence you may have on people
you support. Be a good role-model
in the way you look and act.
2. Your relationship to the people
you support is important—maybe
critical—but do not “mistake”
your relationships as friendships.
16
True friendships are uncompensated. If you consider yourself as the
“friend,” you are less likely to help
the individual seek connections
with others in the community.
Be friendly, of course, and demonstrate other elements that are
inherent in friendships, like trust
and caring.
3. Get to know the person you
support really well. List the kinds
of things s/he likes to do and the
things s/he would like to try. It
helps to have a variety of interests that appeal to others, either
broadly (Patriots’ fan) or narrowly
(growing giant pumpkins).
4. Read local papers, tour your
town, talk to people to find out
the places where the individual
can do the things s/he wants to do
with other community members who
do not have disabilities. For some
ideas go to: http://thearcofmass.
org/resources/recreation/.
5. As the person who may know
the individual best, you may be
able to advocate at the ISP (and
elsewhere) that social/relationship goals be set that match the
individual’s interests. Include a
“relationship factor” within
other goals instead of listing it
separately. For instance, if losing
weight is one of the individual’s
goals, there are some ways to do
that that have clear social benefits
as well (see #9 & #10 below)
6. Poll your co-workers, your
organization’s Board members,
your family, friends and neighbors to find people who share the
individual’s interests. Find someone who is willing to introduce the
individual into that activity and to
support him to participate. (Your
organization may require some
formalities, like a CORI check.)
7. Help the person be as attractive as possible through
good grooming and hygiene and
dressing in clean clothes that fit
well. His/her appearance may be
“judged” through various cultural
lenses, so be tuned in to that.
8. Support the person to act in
ways that are as “socially appropriate” as possible. But do NOT
ever think that mastery of social
niceties is a pre-requisite for you
helping someone find friends. In
fact, being in a friendship is often
the best way for someone to practice those skills.
9. Support the person to participate in favored activities on a
regular basis. We are creatures of
habit. If the person you support is
trying to lose weight and belongs
to a fitness center, go there on
the same days and the same
times. Being a “regular” makes it
much more likely that s/he will begin to know other folks, and begin
to be known by them.
The Friendship Corner
Strategies for Direct Support Professionals to promote friendships
contd from p. 16
10. Help the person participate
in the activities in ways that have
the greatest possibility of making connections with others. If
the person is attending the fitness
center to lose weight, they could
do so on one of the treadmills, but
the people around him/her are
likely to be concentrating purely
on exercising, headphones on and
not interested in interactions with
others. But a “spinning” class—on
the same days and times each
week—may be a good way to both
lose weight and interact with fellow spinners. Or a Zumba class…
or yoga…or…
11. When the person you support
is in a friendship, it may take some
work to maintain it. “Reciprocity” is important in any friendship.
Help the person initiate some
activities instead of always waiting
for an invitation. Living in a home
that is welcoming to guests can go
a long way here. If the person you
support is a sports fan, and if s/he
has a big screen TV and a killer hot
wings recipe, it might not be too
hard luring fellow sports fans over
for an afternoon.
12. If more than one organization
supports the individual, get to
know people from the other
organization. It is likely that you’ll
need to coordinate your efforts
as new friendships spread across
the artificial boundaries of the
service system.
Achieve with us.
4. Wean from your organization’s job coach to a more natural
support from a co-worker ASAP.
If you work in employment settings, there may be other ways
to help people make (and keep)
friends at work:
1. Be sure to build relationshiprelated goals into the individual’s
Person-Centered Career Plan.
2. Help the individual understand
and participate in the workplace
culture, including knowing food/
drink routines, knowing where
and when workers gather during
breaks, what are popular topics of
“water-cooler” chats, figuring out
if co-workers celebrate birthdays,
are their special days (ie. casual
Fridays), etc.
3. Replace the agency van ride to
work with car-pooling with a coworker if possible.
PLAN
We know that helping people
build relationships and friendships is not easy. But it is certainly
worthwhile. People with friends
are happier, healthier and safer.
And we all want this for the people
we support.
For a broader review of this topic,
please read the latest Quality is
No Accident brief on “Friendships/
Relationships,” located at http://
www.mass.gov/eohhs/consumer/
disability-services/services-by-type/
intellectual-disability/newsroom/
quality-assurance/developmentalservices-quality-is-no-accident.
html to which Widening the Circle
contributed.
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
Education and Training
Transition from school to adult life:
creating a vision for the future
Back by popular demand, on
Saturday, October 3, 2015 The Arc
of Massachusetts will once again
sponsor a full-day conference on
Transition for parents of children
with disabilities between the ages
of 14-22. To accommodate a large
audience, the venue will be the
Best Western Royal Plaza in Marlboro. Our conference committee
--comprised of staff members from
the Department of Early and Secondary Education, Mass Advocates
for Children, HMEA, Northeast Arc,
EMARC, Brockton Area Arc, MDDC,
Federation for Children with
Special Needs, AFAM, MDSC and
Massachusetts Families Organizing
for Change -- are busy planning
the day which promises to be filled
with essential information on the
laws, processes, service options and
resources.
The morning’s keynote will feature Beth Mount, who will speak
on Person Centered Planning and
Transition. Beth has worked for
four decades toward the ideal that
every person with a disability can
be a valued member of community
life. She has
practiced the
art of personcentered
planning with
thousands of
people with
disabilities
and their
families from
every walk of
life and from
every corner
of the World.
Her groundbreaking work
related to Personal Futures
Planning promotes the positive
futures and images of people with
disabilities throughout the globe,
and demonstrates that all of us
count and all of us fit somewhere.
She has received excellence and
service awards from virtually every
prominent national and New York
State disability organization. Participants will choose from 24
workshops including: An Overview
of Transition presented by the
Department of Elementary and
Secondary Education, College Options, Assessments, Developing the
Vision, Housing, Guardianship Options, Student Involvement in the
IEP, Financial Planning, Overview
of Department of Developmental
Services and Massachusetts Rehabilitation Commission, Surviving
the Transition Process and more!
Workshop sessions will be offered
for parents of sons and daughters
with Autism Spectrum Disorders,
Multiple Disabilities, and Behavioral
Challenges. Over 50 exhibitors will
be available to provide information
about services and resources available for transition age youth and
families.
Watch for registration to open on
June 1, 2015.
Target Your
Advertising
18
Education and Training
An important resource on relationships and
sexuality for people with disabilities
The Department of Public Health
and Department of Developmental
Services have developed the Healthy
Relationships, Sexuality and Disability
Resource Guide to assist young people living with disabilities (and those
who care about them) in accessing
the information and support needed
to achieve healthier outcomes when
navigating the developmental milestones of relationships and sexuality.
education on sexual development,
communication and relationships,
social support and safety, and other
topics that help people gain an
understanding and sense of control
over their own bodies, behaviors,
emotions, and experiences.
To obtain a copy of the Guide, go to
http://www.mass.gov/eohhs/docs/
dph/com-health/prevention/hrhs-sexuality-and-disability-resource-guide.
pdf Please share this information with
others who may benefit from this
unique collection of resources.
Webinars are now “On Demand!”
Webinars offered through The Arc are now available to view at your
convenience! Our On Demand catalog grows every month, so check
back often to see what you missed and what is scheduled! The website
also lists our current schedule of upcoming webinars webinars.
http://thearcofmass.org/programs/webinars/
If you have questions or need financial assistance to attend a
webinar, please contact Kerry Mahoney: [email protected]
Youth living with disabilities often
lack health education that is comprehensive or specific to their unique
developmental needs. The guide
provides medically accurate and
developmentally appropriate health
SAVE THE DATE!
BACK BY POPULAR DEMAND !
TRANSITION FROM SCHOOL TO ADULT LIFE
A statewide all-day conference for parents
SATURDAY, October 3, 2015
A Commitment
that Lasts a Lifetime
Best Western/Royal Plaza, Marlboro, MA
A statewide all-day conference for families, introducing state-of-the-art, best practices
around Transition, covering topics focused upon creating seamless, successful transitions into
the adult world. Workshops will cover education in the school system, employment, postsecondary education, community involvement, self-determination, independent living skills,
financial and legal considerations, eligibility for services and many others.
Here is what participants said about the 2014 Conference!
“I didn’t realize that there were so many resources and help out there!”
“Start early…..stay calm!”
“Hearing from other parents– success, frustration and encouragement!”
“Motivated me to think outside the box”
“My son can go to college!”
• Special Needs
Planning
• Transition Planning
& Adult Services
• Guardianship
& Considering
Alternatives
• Advocacy
For more information call our Special Needs Practice Group
leader, Frederick M. Misilo, Jr., at 508.459.8059 or email
him at [email protected].
“I need to get moving and get a plan going! Although it is overwhelming ………..
I can take it one step at a time!”
217 South Street, Waltham, MA 02453-2710 T: 781.891.6270 F: 781-891.6271
Achieve with us.
Achieve with us.
www.arcmass.org
Worcester | Framingham | cape cod
508.459.8000 | www.fletchertilton.com
Advocate Ad-Spring '15.indd 1
19
4/7/2015 10:17:22 AM
News from the chapters of The Arc
Ed Porter, Executive Director of The United Arc for
nearly 40 years, will retire in August
Ed Porter
The United Arc is preparing to
say goodbye to its first executive
director after 39 years at the post.
Ed Porter, who has served The
United Arc since 1976, performed a
variety of roles over the years as the
programs offered by the organization have expanded and adapted to
the changing needs of the intellectual and developmental disability
community. He leaves The Arc after
completing a long-awaited move of
its administrative offices and Family Support Center to Avenue A in
Turners Falls.
At the onset of his tenure at The
United Arc (then the Franklin
County ARC), the organization
employed 12 people supporting
individuals with intellectual and
developmental disabilities in Franklin County. The organization later
merged with The Arc of Hampshire
County to become The United Arc
of Franklin & Hampshire Counties,
and recently shortened its name
to simply, The United Arc, as its
programs expanded beyond the
two counties. The organization now
supports over 1,000 individuals and
families in the disability community
from Hampden County up through
the North Quabbin Area with over
130 full- and part-time staff. Now
operating four residential programs
and 15 supported living apartments,
two of the area’s Family Support
Centers, an innovative transitional
housing program and resource
center for parents with disabilities,
and two self-advocacy groups, The
United Arc has come a long way
from its humble beginnings. But,
Ed says, the numbers don’t tell the
whole story.
“The real story is the quality, individualized and customized nature of all
of the services that we provide,” he
remarked. “I have been blessed with
talented people who work for and
govern The United Arc. Together we
have collaborated in being creative
and brave in keeping the people we
serve at the center of our efforts. It
is a life’s work that I am proud of.
The foundation of the organization
is strong, our philosophy is clear and
our mission is well defined. I wish
to express my thanks to all of you
who have made my experience here
such a gratifying one. I will miss the
many relationships and friendship
that have been built over the years.
I will especially miss the vitality that
is part of this organization. It is with
the greatest sincerity that I wish The
United Arc, and each one of you,
continued success and prosperity in
the years to come.”
Ed’s work has shaped The United
Arc as it is today, and he will truly be
missed. However, the strong foundation he has laid will be a launching pad to continued success and
staff, individuals, and families are
ready to usher in the next chapter in
The United Arc’s history
Berkshire County Arc receives workplace wellness grant
Berkshire County Arc is the recipient of a grant from Health New
England, in partnership with
Berkshire Health Systems (BHS),
for the BHS Wellness at Work program. The grant provides employees with the opportunity to take
part in a variety of wellness activities in 2015, including biometric
20
screenings, health education
seminars/workshops (for example,
smoking cessation, blood-pressure
clinics and on-site fitness classes),
coaching sessions and one-on-one
nutritional counseling visits.
“We are excited for this opportunity to partner with Health
New England and Berkshire Health
Systems on this workplace wellness
initiative to offer fun and educational opportunities for health sustainment and improvement to our more
than 600 employees,” commented
Berkshire County Arc President and
CEO Kenneth W. Singer.
4 from The Arc of Greater Plymouth receive
shared living awards
This spring four Arc of Greater
Plymouth individuals were given
honorary awards at both the
Plymouth Area DDS Recognition
event and the Massachusetts DDS
Annual Recognition event at the
State House.
Elmer Mendes is an 81-year-old
man and Plymouth celebrity
who came to The Arc of Greater
Plymouth seven years ago with
significant support needs and
health challenges. The confidence to expand our services to
meet the complex needs that this
special individual presented truly
came from Elmer himself and his
desire to get his life back on track.
In these seven years, Elmer has
had a successful hip replacement,
established control of his diabetes
and accomplished sobriety – with
a little help from his support staff,
Barbara Bousquet, and for several
years prior, Scott Atton; his friend
and biggest fan, Executive Director Roger Monty; and the community connectors from The Arc
Shared Living Program.
Without Barbara it would be very
likely that Elmer would need to
be in a long term care facility
rather than the comfort of his
own home with people who know
and care about him. Elmer is a
jokester and he and Barbara enjoy
a light-hearted almost comedic
chemistry. She has been able to
introduce new options which
Achieve with us.
include participation in a day
program that he previously would
not consider. She continues to
make sure he enjoys time in the
community, especially bringing
him to the Plymouth waterfront
where he can visit from “his
bench” with his old friends.
Elmer Mendes is in many ways the
true embodiment of our mission
at The Arc of Greater Plymouth:
to provide individuals with the
opportunity to choose where and
how they learn, live, work and
play. This award to Elmer and Barbara recognizes his achievements
in making these choices.
Charles and Suzanne Emerson
have been involved with The Arc
of Greater Plymouth for many
years in many different positions,
from job coaching at our Employment program to becoming 24/7
Shared Living providers for two of
our individuals with complex support needs. Their passion for helping those with developmental and
intellectual disabilities is evident in
the quality of excellence in their
everyday work.
Charles and Suzanne have completely understood and captured
the true essence of the “Shared
Living” model. They have not only
opened their home and daily lives
to the two individuals who reside
with them, but have opened their
hearts to create a strong family
DDS award winners Barbara Bousquet,
Suzanne and Charles Emerson with Elmer
Mendes
bond that reflects the true meaning of “inclusion.” They have fostered great relationships between
the individuals and their extended
families, often hosting holiday
dinners all together in their home.
The Emerson family is the first to
step up in times of need, offering
respite staff a ride to their shift in
snow storms, covering job sites
and other events when staffing
absence would have prevented
our individuals from participating.
The Arc of Greater Plymouth is
very grateful for the work Charles
and Suzanne do across all programs of the agency. There is no
family more deserving of such
recognition. 21
Watch City Self Advocates going strong, giving back
disabilities. They use their
meeting time to become
better educated about
important topics. Speakers at the group’s meetings this year included
State Representative Tom
Stanley (D-Waltham),
who spoke about his
work at the State House
and the budget process,
and responded to member concerns; Rachel
Watch City Self Advocates members Joseline Ramirez (left)
and Pattie Fitzgerald (right) collect donations for Operation Hayward, Massachusetts
American Soldier at a GWArc event.
Advocates Standing
Strong Metro Regional
Members of GWArc’s Watch City
Coordinator; Pauline Bosma and
Self Advocates have had a busy
Susan Moriarty, Rainbow Support
and productive year as they visited
Group; a representative of the
legislators at the State House for
Waltham Fire Department on
self-advocacy activities, heard prefire safety; and a member of the
sentations from a variety of speakmilitary who spoke about his
ers, attended the Massachusetts
experiences.
Advocates Standing Strong conferMembers also continued their
ence and worked on a community
“giving back” goal of collecting
service project collecting donations
items for Operation American Solfor Operation American Soldier.
dier, which they have been actively
In recognition of their efforts and
accomplishing for more than three
activities, twenty members reyears. They collect donations of
ceived the “Self Advocates of the
Year” Award at GWArc’s Annual
Meeting in November. The award
was presented by State Senator
Mike Barrett, who encouraged the
group to visit his office every time
they are at the State House.
Watch City Self Advocates members set annual goals that include
becoming better self advocates for
themselves and all persons with
22
Members of Watch City Self Advocates
receive “Self Advocates of the Year” Award,
presented by State Senator Mike Barrett at
GWArc’s Annual Meeting in November.
food, toiletries and other needed
items from families, friends, GWarc
staff and others and deliver to
Operation American Soldier dropoff sites for shipment to military
members serving overseas. They
also write encouraging letters and
cards to include in the shipments.
Working on legislative advocacy is
also a key activity. Members travel
to the Massachusetts State House
to attend rallies and to speak to
their legislators. In March, members attended the 37th Annual
Legislative Reception sponsored
by The Arc of Massachusetts and
the Massachusetts Developmental
Disabilities Council. Annually
representatives of Watch City
Self Advocates attend the
Massachusetts Advocates
Standing Strong Conference.
Watch City Self Advocates is an independent organization composed
of participants in GWArc’s Day
and Employment Programs, and
other members of the community.
Its mission is to help members
become better self advocates for
services, benefits, legislation and
other needs which impact their
daily lives. Members join together
to learn how to make and how to
influence better choices in their
lives. Membership is voluntary;
those who join enjoy and learn
from activities at their monthly
meetings as well as attendance
at conferences and legislative
The Arc of South Norfolk honors the Ferrara family
On Friday, March 20, 2015 The
Arc of South Norfolk dedicated
the main conference room at 789
Clapboardtree Street to the Ferrara
family. In honor of their ongoing
support and commitment to The
Arc and Lifeworks, the conference
room will now be known as The
Ferrara Family Conference Room.
This dedication was made with
special gratitude and appreciation
to Ed and Flo Ferrara.
The Arc of South Norfolk is only
as strong as its volunteers -- the
hundreds of people who dedicate
their time and service to enhance
the lives of those we serve. We are
incredibly grateful to the Ferrara
Family and all of the volunteers
here at The Arc of South Norfolk!
Attendees of The Ferrara Family Conference Room dedication celebrated the support the
Ferrara’s have provided to The Arc of South Norfolk and Lifeworks over the years. Special
recognition was given to Ed and Flo Ferrara for their commitment to people with intellectual
and developmental disabilities.
Watch City Self Advocates going strong, giving back contd from p. 22
advocacy activities. The group is
led by an elected President, Vice
President, Secretary and Treasurer.
Officers are nominated and elected
by the members from within the
membership for one-year terms.
GWArc partners with Watch City
Self Advocates by providing a staff
member who advises the group
in setting goals and objectives,
provides support for meetings and
activities, and helps coordinate
transportation to meetings and
events. GWArc also provides
meeting space.
Watch City Self Advocates meetings are held monthly and members pay monthly dues. Following
Achieve with us.
their business meeting, members
socialize while having an informal
meal. New members are welcome
at any time. A small group of
volunteers assists with meeting
activities and dinner.
Watch City Self Advocates began
over 10 years ago as a way to support and empower GWArc participants and others in the community
who expressed a desire to actively
participate in advocating for their
needs, rather than depending
on others to speak for them. The
name Watch City is derived from
the Waltham location -- Waltham
is commonly referred to as Watch
City because of its association with
the watch manufacturing industry.
What members of Watch City Self
Advocates believe:
• Everyone has the same rights.
• Rights and responsibilities go
together • Everyone should be treated equally
• People should have the same
opportunities to make their own
decisions and choices
• People should have the support
they need • Everyone is important • We speak out for ourselves and
each other
23
Lynnsie and Nicole:
Independent Living success stories
Northeast Arc since they turned
22 years old. Because their birthdays are just days apart and both
had similar goals in mind, the
Arc paired them as roommates at
an Arc-supported apartment in
Peabody.
Lynnsie
Independence. It’s what our country was founded on. It’s what we
have gone to war for many times.
It’s what we teach our children so
they can head out into the world
and be productive adults who
contribute to society. What if the
child has developmental and/or
other disabilities? Does this lessen
their desire to be independent?
No! Just ask Lynnsie Sevoich or
Nicole Amelio. They are two of
the individuals Northeast Arc has
supported to achieve their goal of
independent living.
Lynnsie, 29, is deaf, has cerebral
palsy, uses a wheelchair, and
gets regular Botox injections to
help loosen her muscles. Nicole,
also 29, is deaf and has mild
cerebral palsy. Both women have
been receiving services from the
24
Over the years, the Northeast Arc
has helped them in many ways.
Initially, both received 24-hour
support. They also learned about
in-home safety, household maintenance, emergency planning,
Internet safety, how to navigate
in a social world, and community
safety skills.
Nicole and Lynnsie shared the
Arc-supported apartment for
seven years. During this time,
both expressed their desire to live
independently. It is the natural
next step in the lives of these
young women, both of whom
are engaged to be married. The
Arc assisted them by developing
a learning plan in order to help
reach their goals. Both women
needed to be able to show that
they were able to manage their
medications, understand basic
first aid, call the doctor on their
own, and make arrangements to
get to appointments.
A few months ago, both women
moved into apartments in Salem
– in the same building. They share
a staff person who comes in to
check on and assist them each
Nicole
day. When talking to them today,
both smile when asked what they
like about living independently. “I
like being alone,” said Lynnsie. “I
still have help from the Arc staff
when I need it for cleaning and
other support, but it is nice to
have a normal life. I’m looking for
a job and know I’ll get one soon.”
Nicole, who has worked at Petco
in Danvers for the last four years
and is responsible for caring for
the small animals there, likes being in her own home where she
can cook and spend time with
her fiancé, Jonathan. “The bus
is right outside the door and the
train station is down the street,”
said Nicole. “I love being part of
the community. This is the perfect place for me and the Arc has
helped me become successful.”
Fitness strengthens friendships in Andover
By: Robin Ellington, Director of Marketing, CLASS /The Arc of Greater Lawrence
When the 2:30 p.m. bell rings at
Andover High School, eight kids
excitedly start packing up their
things and hurry out of the classroom – not to go home, but to go
to their fitness class. They make a
beeline for the high school yoga
room, gather up their mats and
join about a dozen students from
Merrimack College, two of them
recreation coordinators hired for
this pilot program.
Thanks to a grant from New
Balance, CLASS/The Arc of Greater
Lawrence is funding both this
fitness program designed for
young people with disabilities
and the rec coordinators to run
it, a collaboration among CLASS
in Lawrence, Merrimack College
in Andover, and Andover High
School.
Parents are thrilled. “Andover
parents can’t believe they are
lucky enough to participate in
this,” said Jean Tarricone, M.Ed.,
CAGS, head of the Special Education Program at the school. “I had
been looking for a way to integrate fitness in our after-school
program and when one of our
seniors, Molly Manuel, said CLASS
called, asking if we’d be interested, we jumped on it. We are
all super excited.”
Since 1998 New Balance has supported CLASS/The Arc of Greater
Lawrence with grants for physical
fitness and community inclusion
Achieve with us.
programming. This year the entire
New Balance grant was allocated
to this Andover High pilot.
“We are investing the grant in a
single, successful program which
has measurable outcomes and
delivers maximum benefit, rather
than multiple individual programs
that have limited or no long-term
effects,” said Erin Henry, director
of development at CLASS. “New
Balance has been extremely generous to CLASS over the years and
truly believes in our mission.”
The program includes some oncampus activities, with tours and
a ball game in the mix, which
keeps interest high and bodies busy. Since the first week of
March the young students with
disabilities have been working
on their fitness and mobility, and
they all show progress. “We are
so proud of them and are looking
forward to seeing their continuous improvements and, of course,
to continue to hang out with
them three times a week!” said
rec coordinator Kayla Breton, a
sports medicine student at Merrimack College, Class of 2016. “It
has been such a joy to be able to
work with every individual in the
program.”
The two rec coordinators, Kayla
and Tara Daly, a health sciences
student with a concentration in
nutrition, Class of 2016, lead the
classes, inspire the participants
Ian concentrates on standing tall while he
is measured during the pretest held in the
Merrimack College gym.
and track their progress. Pretesting and post-testing, volunteer
coordination and weekly progress reports are part of their job
descriptions.
“This week, for the first time,
Jamie performed calf raises, an
activity going from standing to
tippy toes,” Tara said. “This was
done through modifications with
a rolled-up mat underneath the
heel throughout the first weeks
that has helped her to build the
flexibility required for the activity.
We are proud of everyone’s
accomplishments.”
For about an hour participants
run through a set of 15 individual
exercises, and they’re beginning
to memorize the sequence, thanks
25
The Arc of the South Shore
celebrates renovations
On Monday, April 13, 2015,
The Arc of the South Shore
hosted families and friends,
as well as three town officials
from the Weymouth Planning
and Community Development
Department. A ribbon-cutting
ceremony was held to celebrate the recent renovations
of the restrooms at The Arc of
the South Shore’s Day Program
space. With Community Development Block Grant funding,
The Arc of the South Shore was
granted $112,000 to complete
all of the renovations. The
Daryl Cook-Ivan and Anne Holton present James
Clark with a framed drawing done by one of the
town has also funded a winclients of The Arc of the South Shore.
dow replacement project in
the past. The Arc of the South
Shore is extremely grateful to the Mayor of Weymouth and the Planning
and Development Department for their continued support.
Fitness strengthens
friendships in
Andover
contd from p. 25
to the mentor approach by 25
Merrimack College students
assigned to the project, as part of
their health sciences course led by
Dr. Zi Yan. Students also are gathering data for a research project.
But the biggest dividends from
the pilot have been the bonhomie
and friendships developing
among the participants and
students. “Relationships between
25 Merrimack volunteers and
eight amazing high school students continue to strengthen,”
Tara said. “We have noticed over
and over again that Merrimack
volunteers and Andover students
have been having a blast working
alongside one another!”
o YES! I will support The Arc of Massachusetts with a tax-deductible gift.
Name: ____________________________________________________________
Address: ___________________________________________________________
Amount: $_________________
Phone: ____________________ Email: ________________________________
Please make checks payable to The Arc of Massachusetts and mail to:
The Arc of Massachusetts, 217 South Street, Waltham, MA 02453
To donate by credit card, go to: www.arcmass.org and click on Donate Now
26
For more Information:
www.arcmass.org
781-891-6270
[email protected]
Berkshire County Arc’s Down Syndrome Family Group hosts eighth
annual Sprout Film Festival and Photography Show
A reception catered by On a Roll
Café followed the Film Festival,
featuring photography from local
artists with disabilities. All proceeds
from the event support children,
adults and families of Berkshire
County residents with and impacted by Down syndrome.
Sprout Executive Director Anthony Di Slavo; Berkshire Courty Arc President and CEO Kenneth
W. Singer; and Aaron Robb, President of the Berkshire County Down Syndrome Family Group
On Saturday, March 28th, 250
moviegoers attended the 2015
Berkshire County Sprout Film
Festival at Berkshire Community
College in Pittsfield, Mass. The
event, which was hosted by
Berkshire County Arc’s Down
Syndrome Family Group, featured
13 films about individuals with
various disabilities, their lives and
personal achievements.
The Down Syndrome Family Group
currently supports 40 Berkshire
County residents with Down
syndrome and their families. For
more information about Berkshire
County Arc’s Down Syndrome
Family Group or The Sprout Film
Festival, contact Jessica Dennis
at 413-464-7262, ext. 12 or visit
www.bcarc.org/dsfg.
2015 SUMMER
LEADERSHIP INSTITUTE
JULY 20-22
EMBRACING THE FUTURE
PROVIDENCE, RI
Treading water or making waves
with smart change?
JOIN US IN RHODE ISLAND TO NETWORK, LEARN & HAVE FUN!
FEATURED SPEAKERS
» Alternatives to Traditional Residential Services
» What Great Managers Do Differently
» Supported Decision Making and Alternatives to Guardianship
» World Café discussions of HealthMeet®, NCCJD, TalentScout™, and other
national initiatives
» Open Dialogue on Sheltered Workshop and Subminimum Wage
» Journey through the senses with an Italian Dinner and wine pairing in
Historic Federal Hill
» Tour of the magnificent famed Gilded Age mansions, concluding with a
delicious clam bake dinner overlooking Newport’s prided Easton’s Beach
Kirk Kramer, Bridgespan (Keynote)
Facing the Future: How Successful Non-Profits Link
Strategy to Successful Leadership Development
Catch the earlybird registration rate now at www.thearc.org/sli-2015-register
Not an NCE member? Join now—NCE members save $100 on registration!
Visit www.thearc.org/nce/join-now for more information
Jim Triandiflou, Relias Learning
What Great Managers Do Differently
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Michele Berard, The Rhode Island Foundation (Keynote)
Fundraising in the 21st Century
Jill Houghton, USBLN
Understanding Business Views on 503 Regulations
Chris Littlefield, AcknowledgmentWorks
Culture of Appreciation and Recognition
27
Non-Profit Organization
U.S. Postage
PAID
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217 South Street
Waltham, MA 02453
(781) 891-6270
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Minute Man Arc attends abuse prevention summit
List of Advertisers
(L-R): Executive Director Jean Goldsberry, Valerie Lessa, Nora McShane, and Self-Advocacy
Coordinator Kimberly Huxley
Self-advocates from Minute Man
Arc participated in a state-wide
conference on March 20, 2015,
on preventing abuse of people
with developmental disabilities.
Sponsored by Triangle and held at
UMass Boston, the summit included
28
an open discussion where advocates and staff shared stories about
experiencing abuse. They also outlined what is needed from society
as a whole to stop those situations
from happening. By raising awareness and support, self-advocates
The Arc of South Norfolk
Berkshire County Arc
Cardinal Cushing Centers
Cotting School
FletcherTilton PC
The Guild for Human Services
New England Village
Northeast Arc
PLAN of Massachusetts
and Rhode Island
Riverbrook
Special Needs Financial Planning
Specialized Housing
SUPPORTbrokers
Our advertisers help support the
mission of The Arc of Massachusetts.
like those from Minute Man Arc will
be better able to effect change in
the future.

State Budget for 2016 is in play

Transcription

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