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Advocate Fall 2017

Still miles to go…Addressing community needs By Leo V. Sarkissian

As we went to press, The Arc was hearing about reductions in employment and residential supports that have affected or will affect people’s day-to-day lives. Only through your active involvement can we hope to succeed in addressing cuts that will affect daily lives. At the end of September, the Department of Developmental Services (DDS) was working with provider agencies to reduce contracts by 2%, while the reductions relative to state-operated services may

result in a hiring freeze. The shortfall we have is in relation to keeping pace with the needs of people in our community. The challenge is to keep up with the 1,000 people turning 22 as well as older adults with increasing needs who may require in-home or residential services not presently being received. On top of this are the workforce challenges across human services, including nurses. In MassHealth, the effects of reductions in the AFC program are still being felt, while continuous nursing recipi-

It’s official! The Arc cuts the ribbon on the new headquarters By Katrin Aback

September 13 was a beautiful day, as the sun shone brightly on the official opening celebration of The Arc of Massachusetts’ new statewide headquarters. More than 80 friends of The Arc joined us to cut the ceremonial ribbon and celebrate the milestone. Board President Tracy Atkinson and Leo Sarkissian after being given Official Proclamation by Waltham Mayor Jeannette McCarthy

Achieve with us.

Secretary of Health and Human Services Marylou Sudders and continued on page 6

ents are unable to have their hours filled. Your family member or friend may be affected by the shortfalls in one or more ways. The Arc continues to appreciate the support received in regard to the Turning 22 formula from the House, Senate, and Governor. Starting with Gov. Baker in the beginning of the budget process last year and with solid support of Speaker DeLeo and Senate President Rosenberg, our constituents’ continued on page 7

Inside this issue... Article

Page

Government Affairs......................7 Operation House Call................12 The Friendship Corner................13 Education and Training..............16 The Becker Center for Advocacy..17 News from the Chapters............18


Published by

SUPPORTbrokers welcomes Kathy Kelly!

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

Tracy Atkinson President

Deborah Norton Vice President

Peter H. Tallas John Mallin Treasurer Secretary/Clerk Daniel Sullivan Immediate Past President

DIRECTORS

Subhadeep Basu Scott Borchardt Martin Courage Katherine Craven Kristin M. Hilf

Susan Lodemore Michael Maguire Geoffrey Misilo Sean Morrissey John Nadworny

STEERING COMMITTEE

Janet Sweeney Rico, Chair Justin Bernard Barbara Pilarcik Jim Buss Renald Raphael Christopher Fox Frank Sally Seth P. Lopes Hillary Dunn Stanisz Mary Valachovic

The Arc of Massachusetts Staff Leo V. Sarkissian Executive Director

Kathy Kelly has been working in the human services field for over 30 years. Her mission is to ensure that everyone has access to successful outcomes in life. She has developed and managed a variety of successful programs for chapters of The Arc and is currently working as Benefits Counselor with the Massachusetts Rehabilitation Commission. She serves on The Arc’s Government Affairs Committee and the Governor’s Autism Commission Sub-Committee for Transition. Kathy is an expert in transition and has provided guidance and support for students, families, and school systems. She particularly enjoys working with students and families as they prepare to make their transition to adulthood by helping them develop a realistic future vision and goals that are person-centered and focused on their individual strengths and needs. She understands the state, non-profit and private systems and knows how to navigate them to maximize planning. A graduate of Suffolk University, she received a Master’s Degree in Public Administration.

Save These Dates! Be sure to mark your calendar for these important events. Visit our website (www.arcmass.org) for details Wednesday, March 7, 2018 – T  he Arc/MDDC Legislative Reception – State House April 23-25, 2018 – Disability Policy Seminar, Washington, DC Wednesday, April 25, 2018 – T  he Arc of Massachusetts - Gala and Auction, Boston Marriott Newton

Maura Sullivan Director of Government Affairs Kerry Mahoney Director of Education and Outreach Charlie Fiske Director of Public Policy Katrin Aback Director of Development Jim Ross Director, Widening the Circle Rich Fagan Financial Director Christopher Jenkins Financial Officer Katerina Daley Development & Digital Media Associate

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TheArc ArcofofMassachusetts Massachusetts The


Our Constituents and the 2019 Budget – Intellectual disabilities, Autism and Developmental Disabilities By Leo V. Sarkissian

Every year new students turn 22 years old and need supports to live in their community. Every year, some older adults who have lived with family experience a personal or family life change and need assistance. And every year, there are children whose medical or behavioral challenges require a response that is both effective and also prevents more difficulties in the future. Our constituents’ needs for assistance range widely, some just a little while others need 24/7 support. More often than not, families provide that help! We serve as a voice for a broad spectrum of those with intellectual and developmental disabilities, and The Arc’s campaign for 2019 has to respect that spectrum of need. Thus we have two approaches we wish to share with our readers for this campaign. 1. Budget requests for DDS (Department of Developmental Services) to address adults and families a. Families may need support throughout the lifecycle – it should be available The three tiers of family services at DDS, certain MassHealth services, and Early Intervention at DPH (Public Health) are examples of services that are cost effective and help maintain a balance so that children or adults can remain with family and learn within their communities. We discuss a specific MassHealth

Achieve with us.

program more in approach 2, but programs such as personal care attendant, adult family/foster care, continuous nursing, and ARICA, help – either by themselves or in unison with certain DDS or Mass. Rehabilitation Commission (MRC) services -- individuals with disabilities to live and work in their community.

a difference. DESE/DDS Request (5948-0012/7061-0012): add $2.5 Million, Total $9 M; Children’s Autism Request (5920-3010); Add $1.5 Million, Total $8 M. Family Support has many aspects to it, not just respite care. This service not only provides help at home or learning adaptive community skills, but can teach families about generic resources that are available. The service may help a family obtain a referral at the right time and age, so that a child’s

At DDS, Family Support/respite, the DESE/DDS program, and the Children’s Autism Waiver address very different needs. The latter two continued on page 8 are both preventative and therapeutic. If the services are Introducing timely, comthe Attainable munication Savings Plan. and other deSave money without impacting velopment will disability benefits. forestall more difficulties in the future such Learn more about the Attainable Savings Plan as behavioral 844.458.2253 | Fidelity.com/attainable challenges. This translates into a good Managed by: life and costeffectiveness, reducing The Attainable Savings Plan is offered by the Massachusetts Educational Financing Authority and managed by Fidelity Investments. Qualified ABLE the need for Programs offered by other states may provide state tax benefits to their residents or taxpayers that are not available through the Attainable Savings out-of- home Plan. If you are not a resident of Massachusetts, you should consider whether placement. But your home state offers its residents or taxpayers state tax advantages or benefits for investing in your home state’s qualified ABLE program before making an the services investment in the Attainable Savings Plan. Units of the portfolios are municipal fund securities and are subject to market have to be fluctuation and volatility. You may have a gain or loss when you sell your units. available in Please carefully consider the Attainable Savings Plan’s investment objectives, risks, charges, and expenses before investing. For this and other information, a timely and contact Fidelity for a free Disclosure Document or view one online. Read it carefully before you invest or send money. adequate Fidelity Brokerage Services LLC, Member NYSE, SIPC, 900 Salem Street, Smithfield, RI 02917 810366.1.0 way to make

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Partners: You and The Arc of Massachusetts By Katrin Aback

Collaboration. By working together, agencies, self-advocates, families, and organizations can improve the lives of people with intellectual and developmental disabilities (I/DD) and accomplish so much more than in isolation. You are a very important partner in our work. Gifts from supporters like you are crucial, and because thousands of people across the state stand with The Arc of Massachusetts we can push for positive change and greater inclusion.

we face potential cutbacks due to both shortfalls in state revenues and possible policy changes at the federal level

become law when we partner with legislators and concerned citizens; and defeating the ongoing threat to Medicaid requires that organizations across the country, representing myriad interests, come together to advocate effectively. And although we are still waiting for the final budget, we marshalled resources this spring to expand Turning 22 funding and protect services at Medicaid such as adult family/foster care.

Clearly, we have work to do. Be a part of our efforts to empower people with I/DD, educate the public and our leaders, and advocate for funding and services. Take two steps right now that will have an immediate impact. First, give a gift to make our work possible. Then, join our email list to stay informed about ways that you can make a difference. Simply visit www.arcmass.org and click on the subscribe button.

There is much more to be done.

As we look ahead to meeting our 2017-2018 programmatic and legislative goals, we will continue to find ways to collaborate to make sure that people with I/DD have the opportunities and means they need to thrive and be SHARED LIVING full members of Sharing memories and experiences together! the community. Unfortunately,

Our multi-agency efforts on the Supporting Families Campaign resulted in an allocation of $5 million in funding; bills such as Nicky’s Law, which will establish an abuse registry,

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 tjordan@cushingcenters.org

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All of us together can make a big difference in the lives of people with I/DD. With the tremendous challenges that are looming, we count on you to make our advocacy possible. Please give today.

Make a difference today! Please consider giving a tax-deductible contribution to The Arc of Massachusetts annual fund before the end of the year. You make it possible for us to be persuasive and effective advocates for individuals with disability and their families. The challenges are plentiful, so please be as generous as possible. Ways to give • Send your gift to: The Arc of Massachusetts, Attn: Development, 217 South Street, Waltham, MA 02453 • Make a gift online using our secure, PayPal site at arcmass.org/donate • Call our office at 781-891-6270 and use a credit card If you have any questions or need more information, please contact Katrin Aback, Director of Development, at aback@arcmass.org or 781-891-6270 x105.

The Arc of Massachusetts


Save the date for The Arc of Massachusetts 2018 Gala! By Katrin Aback

Scenes from our last Gala – join us in April 2018! Get out your calendar! The next Gala will be held on Wednesday, April 25, 2018.

more about sponsorships. She can be reached at aback@arcmass.org or 781-891-6270 x105.

The Gala will be held at the newlyrenovated Boston Marriott Newton. To kick off our evening, guests are invited to enjoy a cocktail reception and to bid on an array of fun silent auction items. This will be followed by a seated dinner and a spirited live auction featuring fabulous trips and prizes.

For Additional Information and Updates

Sponsorship Opportunities Sponsorship options range from $1,000 to $25,000, providing opportunities for corporations, individuals, and agencies to get involved and support The Arc of Massachusetts at a range of gift levels. Please contact Katrin Aback, Director of Development to learn

information about the Gala regularly. Visit www.arcmass.org/gala to get the latest details and to purchase tickets and sign up for our email list on our home page.

Save the date and make plans to In addition to sponsorships, we are attend today! See you on April 25, seeking unique and fun items 2018! for the live and silent auctions. To make an auction ALL PEOPLE WITH DISABILITIES – donation, LIFELONG AND AGE-RELATED – please contact SHOULD HAVE THE MEANS TO LIVE Community HEALTHY AND WELL Relations PLAN, a nonprofit organization, operates Manager special needs pooled trusts. Professional financial managers and social worker staff help Judy Zacek individuals: at zacek@ • Preserve financial assets arcmass.org • Protect public benefits or 781-891• Access personalized guidance with 6270 x102. the use of their funds We will update PLAN offers individuals with disabilities, including the elderly, a lower-cost approach to special needs trusts.

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It’s official! The Arc cuts the ribbon on the new headquarters continued from p. 1

The Plante Family takes the tour

James Nadworny cuts the ribbon to mark the official opening!

Waltham Mayor Jeannette McCarthy spoke about the impact that The Arc has had locally and across the state. Board President Tracy Atkinson and Executive Director Leo Sarkissian thanked the many donors and supporters who made this accomplishment possible: families, self-advocates, chapters, human service agencies, and foundations. After the speaking program and ribbon cutting, guests were invited in for tours and refreshments. The new 3,600 square foot building will allow us to expand our groundbreaking work on behalf of people with disabilities. “Over the course of the past 63 years, The Arc of Massachusetts has fought for better lives for individuals with intellectual and developmental disabilities such as autism, Down syndrome, and cerebral palsy and has worked to support their families,” Tracy told guests. “No other organization in our Commonwealth has had a comparable, positive impact.”

Board Member Sean Morrissey, Arc of South Norfolk/Lifeworks Executive Director Dan Burke, Board Member Dan Sullivan, and Carolyn Ferris Gombosi

Hundreds of contributors made gifts to help The Arc reach the $1.6 million campaign goal. Any additional funds received will be placed in a maintenance fund. You can find additional information about the campaign at: www.arcmass.org/campaign. Thank you to everyone who made the new building possible!

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(L-R) Henry and Evelyne Milorin, Kerry Mahoney, and Tina and Jim Kerkham

The Arc of Massachusetts


Government Affairs Still miles to go…Addressing community needs continued from p. 1

need for adult and other services was recognized. The shortfall in revenue set us back as Ways & Means Chairs Spilka and Dempsey and colleagues attempted to minimize the impact on our constituents’ daily lives. Most recently, the legislature has been restoring cuts in our services by overriding gubernatorial vetoes. The highest priorities in supplemental concerns at The Arc focus on the hard DDS services which

took deep reductions: Residential (both Community and State operated), the Olmstead-related changes in Day and Employment Services, and Transportation. In MassHealth we continue to be concerned about the AFC and Continuous Nursing services. You are the difference as The Arc approaches state legislators and the administration to submit a supplemental budget for 2018 and consider recommendations for

Request FY'18  Supplemental FY'19

The Arc of Massachusetts Line Item

Description

Supporting Families DDS 5911-1003 DDS 5911-2000 DDS 5920-2000 DDS 5920-2010

Service Coordination, Admin. Transportation Community Residential State Operated Homes

DDS 5920-2025

Community Day/Work

DDS 5920-3000 DDS 5920-3010 DDS 5920-3020 DDS 5920-3025 DDS 5920-5000

Respite and Family Support Autism Waiver Children Adult Omnibus

63,779,097 6,474,349 13,403,338

Aging w/DD Turning 22

DDS 5930-1000 5948-0012 & 70610012 Other line items

2019. In the chart you can see we are requesting increases for some line items and level funding for others. We will utilize social media in a variety of ways (including FB live) to answer questions and educate further about the civic process. Your participation is the only way your legislators can fully appreciate the services for which we advocate. See the accompanying article on the 2019 budget.

House

Senate

www.thear

Conference Committee

Supp Request FY'18

FY'2019 Request g

State Schools DESE/DDS Family Preservation

69,797,140 23,838,463 1,170,331,170 216,612,361

69,797,140 67,753,226 23,838,463 22,201,781 1,170,331,170 1,164,904,714 216,612,361 208,097,398

23,838,463 1,170,331,170 216,612,361

26,443,000 1,210,331,170 216,612,361

205,139,405

205,139,405 $202,120,152

205,139,405

$221,095,152

63,779,097 6,474,349 13,403,338

63,532,818 6,474,349 $13,338,362

63,779,097 6,474,349 13,403,338

70,079,097 7,974,349 $15,403,338

24,191,670

150,000 24,191,670

$100,000 $23,102,218

24,191,670

$150,000 $24,191,670

106,970,644

106,220,644

103,956,247

6,500,000

6,500,000

6,500,000

6,500,000

9,000,000

Protect and  Mass Health Long Term Supports Ensure Access      Total FY18 Conf. reduction of $24.3 Million due to revenue shortfall doesn't include regulatory cut in MassHealth Adult Fam/Foster Care  Note DDS request consistent with previous years with T22 annualization ‐full year funding for future years MHEALTH

Budget Chart Notes: The amounts noted in Conference Committee could change if there is a 9C budget cut—we hope not. We list 2 columns of requests for the legislature – the first for more funding this year (known as “supplemental”) to assist those in need for DDS, including changes in day/employment services, and the second for the fiscal year beginning in July 2018. The governor’s team is now working on that year’s budget while managing the present fiscal 2018. Only participation from you will increase the likelihood of progress in both these requests. Stay connected year-long through “Notes from The Arc” and our e-mailing list.

Achieve with us.

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Government Affairs Our Constituents and the 2019 Budget – Intellectual disabilities, Autism and Developmental Disabilities continued from p. 3

early adolescent behavior is better understood or connects them with an after-school program so a parent can continue at her or his job. Family Support-Respite Request (5920-3000): Add $6.3 Million, Total $70.1 M; Aging with DD Request (5920-3025): Add $50,000, Total $150,000. b. Families with adult children may need support after they graduate high school When adults continue to live with family, supports for the person can make a big difference in adapting to life after school. Over time, parents can’t maintain a role as driver (and sometimes social planner). Siblings may live out of town or state. By helping a little, the state may save a lot, while maximizing a person’s independence. In turn, that individual and all family members are likely to be more active in their community and societycommunity builders. Turning 22 Request (5920-5000): Continue new formula: $24.2 Million; Adult Omnibus Request (5920-3020): Add $2 Million; Total $15.4 M; See above for family support request. c. Adults may require additional assistance after high school The Governor initiated a change in the formula last year and, as he mentioned in Southbridge recently, he hopes it will be a permanent one. So do we! Most students with disabilities across the state do NOT

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tance combining Turning 22 funds need funding for adult life at all or with MassHealth and/or MRC will on a long-term basis. Others may make the difference. For Turning need it for a transition period to 22 annualization and Unmet Needs get established in work and social Request: Community Residential Recircles. Although schools are imquest (5920-2000): Add $40 Million, proving, preparation for adult life Total $1.21 Billion; Community Day/ is lagging in many school systems. Work Request (5920-2025): Add The Turning 22 program supports $15 Million, Total $221 M; State a range of adults, many who only Operated Homes Request (5920need employment or day support 2010): Maintain FY ’18 Restoration, with some in-home help while othTotal $216.6 M; Transportation ers (33% or so) require some type Request (5911-2000): Add $2.6 of out-of-home assistance. Others Million, Total $26.4 M. with developmental disabilities continued on page 9 (such as autism or Prader-Willi) may require a specific package to address We share a common bond — we are parents adaptive and siblings of people with special needs. skills for For over 20 years we have been helping families like our own to plan for their future employand provide for the lifelong needs of ment and/or their family member with a disability. daily living. Assisting the We talk about the money but we know that money is not everything. newly-eligiIt’s about planning for a full life. ble is a work in progress. Cynthia Haddad, CFP® This populaJohn Nadworny, CFP® tion, like the Alexandria Nadworny, CFP® historically eligible, also has older adults who A specialty practice to Shepherd Financial Partners www.specialneedsplanning.com never caught the Turn1004 Main Street | Winchester, MA | 781-756-1804 ing 22 train Financial planning and investment advice offered through Shepherd Financial and/or need Partners, LLC, a registered investment advisor. Securities offered through LPL Financial, member FINRA/SIPC. Special Needs Financial Planning, Shepherd more help Financial Partners, and LPL Financial are separate entities today. Assis-

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The Arc of Massachusetts


Government Affairs Our Constituents and the 2019 Budget – Intellectual disabilities, Autism and Developmental Disabilities continued from p. 8

2. Regulatory changes at MassHealth for Adult Family/ Foster Care

•M  odernizing the program so it fully addresses those with “mental conditions”

Adult foster or family care is a very cost-effective strategy when possible for adults with disabilities and elders. In the coming year, we hope to be successful in the following with your help:

• Addressing a new level which will help the state fiscally while meeting the needs of those with more complex conditions

• Addressing the reduction in funding in 2017 and obtaining more clarification of the role of community health workers who replace nursing reviews

We also look forward to discussions around constituent communications, which is timely given the appointment of a third party administrator for AFC and other MassHealth services. The

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MassHealth advocacy is not reflected in the budget due to the multiple services in one line item Having said that, the AFC program was reduced in the $20 million range with the regulation changes this past spring. All in all this coming year will be one with possibilities. Your understanding and involvement is needed to make them realities!

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Government Affairs

Hearings continue: priority legislation and policy advocacy Hearings are heating up for our top priority bills. The Arc of Massachusetts has provided in-person testimony for numerous bills on our platform so far this session. Planning for hearings involves building panels to testify in front of the Joint Committees. These panels are made up of experts on the bill with many different perspectives. The Arc may have a panel with a self-advocate, a legislative sponsor, a community leader, and The Arc’s Government Affairs Director. It is important to give the Joint Committees a wide

perspective on the bills. The Government Affairs team uses and submits research, searches and prepares for any opposition, and provides written testimony collected from additional stakeholders.

This legislative session, the various Joint Committees have heard testimony regarding Nicky’s Law, Dental Access, Loan Repayment, Inclusive Concurrent Enrollment Initiative, and Accessory Housing Units -- and coming up, Operation House Call. More bills will be heard throughout the session and more advocacy occurs even after the bill moves out of its Joint Committee and onto the next level of scrutiny. FOR LIFE Learn what matters, where it matters Many bills • Skills for Life Occupational Therapists support that pass development of life skills and emerging independence favorably will

SKILLS

in your home and community

go to the Ways and Means Committee. Check our Advocacy page on The Arc’s website for more information. In front of the Executive Office of Health and Human Services, The Arc’s Government Affairs team continues to provide comments that will influence policy. Recently we have testified for regulations regarding rate setting for Community Based Day Services, Family Stabilization, as well as MassHealth cuts. Important to our testimony is explaining how policy affects families. The Arc appreciates hearing from our community with regard to programs and services. We want to hear about what is going well and about the gaps in support. Your stories are the most powerful tool we have to influence policy and legislation. To learn about our policy advocacy or more about our priority bills, call or email Maura Sullivan at 781-891-6270, ext 113 or sullivan@arcmass.org

• Our clients are between 16-26 and can be in school or

have graduated • We specialize in supporting young adults with executive

functioning challenges that impact their independence at home and in their community Please call 617-879-0305 for a free 30 minute consultation for more information Program Director: Jane Hannafin, MS, OTR/L, RYT Clinical Director: Brooke Howard, MS, OTR/L 200 Ivy Street | Brookline, MA 02446 617-879-0305 | skillsforlife@ivystreetschool.org ivystreetschool.org/skillsforlife

Skills For Life is a program of the Ivy Street School, a day and residential school helping students and their families overcome the challenges of autism spectrum disorder, behavioral health diagnoses, and brain injury. The Ivy Street School is a program of MAB Community Services, which has been creating opportunities for people with disabilities since 1903.

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Do you care about any of these issues? Quality of Services Waiting Lists Turning 22 Family Support

Workforce Salaries and Education Special Education

Then get involved! Individuals are needed for local, state and federal advocacy! Visit www.arcmass. org, click on Advocacy and then on Take Action! To become more directly involved, email arcmass@ arcmass.org, or phone 781-891-6270.

The Arc of Massachusetts


Operation House Call

Operation House Call brings back writing for medical students Operation House Call (OHC) is a course formed in partnership with The Arc of Massachusetts. Its premise is that families can effectively teach future doctors important information about living with intellectual and and/or developmental disabilities (I/DD), including autism. The program addresses the issue of health care disparities and access that exists for this community. OHC accomplishes this by addressing bias by and growing knowledge, confidence and interest in provid-

ing care for people with I/DD and autism. The course is currently taught and enthusiastically received by Boston University, Tufts University and University of Massachusetts Medical Schools, Yale School of Nursing (Advance Practice) and Simmons Graduate Program of Allied Health Professionals. OHC is unique and one of only a few medical school curriculums left that requires medical students to write. One of the four compocontinued on page 12 Two medical students join an OHC family

Enriching the mind and body through education, fitness and the arts.

Your Health is our Mission Staffed by specialists expertly trained to support the I/DD community, the Sollar Wellness Center (SWC) is the perfect place to explore a new interest, meet new friends or just have some fun! With a swimming pool and Jacuzzi for therapy-based or aqua fitness classes, an exercise equipment room, walking track, fitness studio, art room with a pottery kiln, and a massage therapy room, the SWC is the ideal destination for individuals with a variety of interests and abilities. Follow us on Facebook to stay up-to-date on all our current offerings. Contact Ginger Comeau at gcomeau@newenglandvillage.org with any questions.

The Sollar Wellness Center at New England Village, 664 School Street, Pembroke, MA 02359

(781)293-5461 • www.newenglandvillage.org

Achieve with us.

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Operation House Call Operation House Call brings back writing for medical students continued from p. 11

nents of the program is a requirement to write a “self-reflection” essay about their experiences during the 4 hours of coursework and home visit. This writing opportunity allows students to process their learning, ask questions, and uncover bias. The writing becomes a collective learning experience as the students share their essays in a privacy-protected forum. These students also have the support of an OHC parent instructor who responds to their essay, sharing rich resources and options for deeper learning through the

OHC website of extraordinary articles and documentaries.

across Massachusetts participating as volunteer hosts.

For the OHC Parent Instructors, it is an honor to read the essays submitted by the OHC medical and nursing students. With each block of students, the OHC team is encouraged by the heartfelt essays written with gratitude and a new appreciation of the strength of individuals with I/DD or autism and the resilience of families. The writing component of OHC allows us to clearly see the impact of the program and the effects of our efforts of the hundreds of families

To get involved or support OHC, contact Maura Sullivan, Program Director, at sullivan@arcmass.org

ing r t ou r upcom inars i s i m V e fo Se sit eds web ial Ne c Spe

Stay Informed. Stay In Touch. Like us on Facebook at https://www.facebook. com/thearcofmass/ Follow us on Twitter at @TheArcofMass

We’re Here to Help Our commitment lasts a lifetime. Whether your loved one with special needs is an adult or a child, we can help with: • Special Needs Planning • Transition Planning & Adult Services • Guardianship & Alternatives • Advocacy

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Art by Dominic Killiany, an artist living with autism

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The Arc of Massachusetts


The Friendship Corner

Strategies to consider for connecting people with and without disabilities There are many possible ways for people to connect (or re-connect) with each other. Being together at the same time and in the same place with others who share your interests is not a guarantee that friendships will blossom -- but this connection is an essential ingredient! Here are some of strategies we may be able to use in our professional (and personal) lives to help people with and without disabilities benefit from getting to know each other. I. Deepening existing relationships in places already frequented: Don’t overlook the people and places that an individual already knows and spends time with and at. This includes their workplace! Even if there are not yet friendships there, there are real possibilities of deepening connections where someone may already be comfortable, confident and known. II. 1-to-1 match-making: Some approaches seek 1-to-1 matches between people with and without disabilities right from the start. These include: • Citizen Advocacy (https://www. nqcitizenadvocacy.org/): Staff from NQCA would be happy to share information on how their program works. There is also a great webinar that may be of help (http://creatingourcommonwealth.org/learningjourney/). • Community of Friends (http:// www.betacomm.org/volunteeroportunites/): For decades, Beta

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Community Partnerships has been matching adults they support with volunteer members of their communities, based on shared interests. • Big Brother/Big Sister (http:// www.bbbs.org/): Although not disability-specific, BB/BS has often made successful matches between people with and without disabilities. There are chapters all over Massachusetts. III. “Group matching.” Another approach is to gather a group of people with and without disabilities to socialize together, with a goal for also evolving 1-to-1 relationships: • Club 21 (https://alternativesnet. org/ways-to-help/be-an-ambassador/club-21/) IV. Become a member of an organization/club/association/group that shares the same interest(s)/ need(s). Becoming a “member” of a formal or informal group is the entry for many friendships: • Recreational/social/civic organizations abound in our communities. You can find out about these opportunities in several ways: - Community “mapping” activities that involve staff and people served. - Meetup (https://www.meetup. com/) is a site that lists dozens of different interests and can be used to find other folks who share the same passion.

- Widening the Circle’s website includes a section with lots of links to activities that people with and without disabilities can enjoy together (http://thearcofmass.org/resources/recreation/) • Faith-based groups. Surveys show that many people with disabilities have been denied the opportunity to participate in the religion of their choice. And faithbased organizations have a variety of activities within their scope (services, choir, childcare, social events, community service, adult bible study, etc.) in which people with and without disabilities can connect. Some efforts have been formalized: - Bridges to Faith/New Bedford (www.bridgestofaith.org) - Spiritual Connections/Fall River (http://peopleinc-fr.org/programs/spiritual-connections/) • “Needs”-based groups. Fun, civic-mindedness, and spirituality are not the only entrees to membership that can grow into friendships. Many people get connected with others who are trying to deal with similar challenges in their life, continued on page 14

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The Friendship Corner Strategies to consider for connecting people with and without disabilities continued from p. 13 including: - Weight Watchers (https://www. weightwatchers.com/us/find-ameeting/) or TOPS (http://www. tops.org/TOPS/FindAMeeting) for folks struggling with their weight. - Alcoholics Anonymous (http:// www.aa.org/pages/en_US/findaa-resources) or Al-Anon (http:// al-anon.org/find-a-meeting) for those living with addictions issues. - Bereavement groups (http:// www.hellogrief.org/resources/ massachusetts/)

• Tips to improve the opportunities for membership: - Be sure that the individual is truly interested in the organization in which he/she is pursuing membership. - Make sure that the individual is as aware as possible of what may be expected from members. This includes: > Learning the jargon/language used by the particular group. For instance, sailors use a very different set of words/ phrases than bird watchers do. > Dress appropriately to fit in with the group. A member of a hiking club will dress very differently from a choir member.

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- Whenever possible, a staff person who

is familiar/personally involved with the group that you’re supporting someone to join should be tapped for that role. This may mean polling staff outside the individual’s immediate circle to find the right person. That person should be the consistent supporter for this purpose; rotating various staff will likely reduce the chances of success. - Try to find someone (not a staff person in the individual’s support organization) who is already a valued member within the group in which you are supporting someone to be a member. Successful membership is greatly increased if there is a mentor/champion/sponsor/gatekeeper on the “inside” who can be welcoming and supportive of a new member. V. Start a group for people who may share the same interest(s)/ needs: It’s possible that there may not be a local group that reflects the interest(s) of the person you support. Consider starting a club/group and Invite people with and without disabilities. (New groups can post on https://www.meetup.com/.) VI. Tap into existing programs: There may be some programs in your area that intentionally bring people with and without disabilities together with one of their goals being the development of friendships. These include, but may not be limited to:

continued on page 15

The Arc of Massachusetts


The Friendship Corner Strategies to consider for connecting people with and without disabilities continued from p. 14 • Best Buddies (www.bestbuddiesmassachusetts.org): • Unified Sports (Special Olympics) (https://www.specialolympicsma.org/what-we-do/ transformative-education/projectunify/) VII. Learn new skills or seek new knowledge in community settings. For instance, learn new cooking skills in an adult-education class at the local HS or Community College instead of at the service agency office or in the group home. VIII. Connect with your neighbors: • Host neighborhood events (block party/Holiday caroling). • Bring food/cookies to new neighbors. • Shovel snow/mow lawns/do errands for elderly neighbors. Or just visit and talk! • DON’T do stuff that emphasizes differences from neighbors (hosting cookout for multiple group homes instead of inviting neighbors). IX. Reconnect with people from the past: • Locating old friends (via facebook and other social net-working sites). • Inviting trusted ex-staff to become voluntarily re-involved (if they left the organization on good terms that do not represent a danger for the individual).

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X. Use Interns/short-term volunteers: Many organizations host interns (paid or unpaid) or volunteers in their organizations for relatively short periods of time. Quite often the organizations will use these interns as companions to the people they support, charging them with the responsibility of going on community outings/activities. A better use of a short-term person would be to have him/her help the individual establish membership somewhere in their community and to work as the “introducer” between people the agency supports and other community members. With hard work (and a little luck) the interns’ work will live beyond their tenure in the form of lasting relationships that they helped facilitate. XI. Additional Resources: • “Friends: Connecting People with Disabilities and Community Members,” by Angela Amado at https://ici. umn.edu/products/ docs/Friends_manual.pdf. • “How to Build Relationships” by Al Condeluci, listed on Widening the Circle’s “How To…” webpage at http://

thearcofmass.org/programs/widening-the-circle/how-tos/. • 150 THINGS YOU CAN DO TO BUILD SOCIAL CAPITAL: Social capital is built through hundreds of little and big actions we take every day. We’ve gotten you started with a list of nearly 150 ideas, drawn from suggestions made by many people and groups. Try some of these or try your own. https://www.hks.harvard.edu/saguaro/whatyoucando.htm • Widening the Circle’s website at http://thearcofmass.org/programs/widening-the-circle.

Providing services since 1954…

Adult Day Habilitation Services Family Support Program Family Autism Center ALEC First Responder Training Adult Social/Recreational Programs Harbor Counseling Center Adult Family Care Residential Programs Employment and Training Programs www.arcsouthnorfolk.org www.lifeworksma.org

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Education and Training

Webinars for Educators! Tuesday, November 14, 2017 12:00 AM-1:00 PM Telling Your Story Presented by Herb Cabral and Julie Heffernan, Advocacy Alliance Coordinators, The Becker Center for Advocacy FREE, thanks to the Becker Family Foundation The most powerful thing our legislators can hear are the life experiences of families like yours! This training will teach self-advocates, family members, and service providers how to effectively tell their personal stories. It is based on the belief that a well-told story is the best way to communicate our ideas, connect with others and advocate for our needs. Participants will learn how to talk about who they are, what they need and what they want – all by telling their story.

Thursday, December 7, 2017 12:00-1:00 PM Mass Health Innovations: Updates on Changes in MassHealth Presented by Leo Sarkissian, Executive Director, The Arc of Massachusetts FREE, thanks to the Becker Family Foundation Stay in the Loop! Implementation of health care reform will have a significant impact on the lives of people with intellectual and developmental disabilities (I/DD), autism, and brain injuries. Leo will provide participants with up-to-date changes and developments in MassHealth managed care  and what the impact is on physical and behavioral health and long-term supports and services. 

Wednesday, January 10, 2018 7-8:30 PM The Transition to Adult Services: What Educators and school Administrators Need to Know Presented by Pat Pakos and Kerry Mahoney, The Arc of Massachusetts Fee: $40 The transition of students leaving their schools can be difficult for themselves and their families. Educators and School Administrators can be helpful in making this transition a seamless.   Participants will learn: • What are the basics to know about this transition? • What are the available services?  How are they organized? • What Educators and School Administrators can do to help To register online for any of these webinars, go to thearcofmass.org/programs/webinars/

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The Arc of Massachusetts


The Becker Center for Advocacy

The Advocacy Alliance is underway! Herb Cabral and Julie Heffernan have joined Kerry Mahoney in kicking off the Advocacy Alliance. The purpose is to build long-term capacity for advocacy at both the state and local levels. The Arc affiliates and other community partners are identifying leadership teams consisting of a family member, staff, and a self-advocate. Herb and Julie have begun to coordinate grass roots advocacy efforts with local chapter affiliates and other partners. They provide training on telling your story, effective advocacy, and issues important for people with I/ DD, including autism, and their families. The leadership teams will evolve to influence policy areas such as self-determination, employment supports, family supports, and residential services. Please help us welcome Herb Cabral and Julie Heffernan! Herb spent 40+ years in IT Services and has extensive experience in business development, staff management, P&L responsibility, and client success. He has been an active advocate for his son Joe, who has an autism diagnosis. He is Co-Chair of the Department of Developmental Services Citizens Advisory Board for the Central Region. Herb also is a special needs volunteer for Mass Advocates, HMEA, and the East Coast Jumbos Special Needs Hockey Team. To reach Herb, email Cabral@ arcmass.org. Herb will concentrate his work in western Massachusetts and the Route 495 belt.

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For the last thirty has also acyears, Julie companied Heffernan has Brian to many taught English in of his speaking a variety of setengagements tings (public and at elementary private; urban and Julie Heffernan schools, collegsuburban; middle es, conferences, Herb Cabral school, high school, and college). and legislative Most recently, she was an adjunct hearings and meetings, and has professor at Boston College (where spoken with him on a number of she earned her M.A.T. in 1990 and occasions. To reach Julie, email HefM.A. in English in 2011). She and fernan@arcmass.org. Julie’s work will her husband Dan, a special educaconcentrate along Route 128 tion attorney, have three children: For more information visit the BeckBrian (26), Maggie (23), and Evie er Center for Advocacy Webpage (21). Julie has been active in the http://thearcofmass.org/becker/ disability world since Brian’s birth in 1990 and has volunteered for a number of advocacy groups, including the Massachusetts Down Syndrome Congress and Newton Public The mission of the SUPPORTbrokers School’s disprogram is to assist individuals with ability awaredisabilities and the elderly to ness program, achieve community Understanding membership based upon Our Differenctheir personal vision es. In 2002, she and her husband received the Dr. Allen C. Crocker Award 217 South Street of Excellence Waltham, MA 02453 by the MassaPhone: 781.891.6270 EXT109 chusetts Down E-mail: info@supportbrokers.org Syndrome www.supportbrokers.org Congress She

MAKE YOUR PLAN BECOME A REALITY

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News from the chapters of The Arc

Dennis says ‘yes’ to opportunity By Jim Montalto, CLASS / The Arc of Greater Lawrence

Developmental Services to support him. After receiving his funding a bit more than a year later, he found several part-time jobs, including cleaning event rooms at a conference center, prepping for noontime openings at several area restaurants, and fixing hangers for a uniform rental company.

Margot passes supplies to Dennis and Gina, CLASS staff, during the hurricane relief effort with the Teamsters.

When Dennis arrived at CLASS in 2014, he mostly kept to himself, preferring to sit off to the side in his Day Habilitation program, observing. “He was shy and quiet, unsure of what he wanted so he couldn’t set goals for himself,” says his case coordinator, Nichole Laczynski, who’s worked at CLASS since 2004. “In fact, for most of his 26 years he’s struggled to communicate because of a developmental delay that affects his ability to think through and express his feelings and ideas.” But during the last three-and-a- half years, the “true” Dennis emerged, one who is quick to express himself and his wishes. He participates in activities with his peers and staff, of-

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ten showing others how to do what he likes to do. “He’s worked through his health challenges,” Nichole says. “He socializes, helps his peers and speaks up for himself on what he wants to learn.” “He’s quick to tell me what he wants to work on,” she continues. “Right now it’s learning how to write in cursive, type on a keyboard, and balance his checkbook. Those are all skills he’s committed to work on and his staff is helping him.” By early 2016, Dennis decided he wanted a job -- so, with the help of his staff, he began advocating for funding from the Department of

“Now he’s self sufficient in everything he does,” Nichole says. “In September, he went to Boston to help Teamsters Local 25 sort, pack and load donations for shipment to Houston after Hurricane Harvey.”

“Yes, I do!” Dennis says enthusiastically when asked if he enjoys his jobs. “Great!” he says in response to how he feels about helping and working with others. “This is what keeps me here at CLASS,” Nichole says. “Just seeing individuals making progress on their goals, and how our staff makes such a positive difference in people’s lives. We give them the best support we can, and it’s one of those jobs that we do because we really love it. For Dennis, it’s great to see how much more vocal he is, and how he really speaks up and advocates for himself.” “Yes!” Dennis responds, “Yes!”

The Arc of Massachusetts


News from the chapters of The Arc

LifeLinks’ Deanna Marion appointed to the The Arc’s National Sibling Council! When The Arc was interested in nominations to the National Sibling Council, LifeLinks’ Deanna Marion was the perfect candidate. She met all the criteria needed to be the perfect fit. She is a disability activist, she fosters the active involvement of her sibling brother, Dean, and as a sibling she is a unique part of the disability rights movement that helps to promote and protect the rights of individuals with I/DD throughout the country. Dean was born with Down syndrome, apraxia, Celiac disease, and other conditions when Deanna was seven years old. Growing up, as she worked alongside Dean’s Early Intervention therapists, she would fill her own notebooks with not only her own schoolwork, multiplication tables and cursive, but also clinical and therapeutic jargon. Over nearly two decades, she has learned firsthand the irreplaceable role siblings can play not only within the familial sphere, but also within the disability policy and advocacy community. Today, Deanna, a graduate of Brandeis University with a BA degree in Health: Science, Society, and Policy and Anthropology, is able to carry the professional insights gained through her work in policy and advocacy research at The Arc of Massachusetts and the Long Term Quality Alliance, in Washington, DC to her work here at LifeLinks. At the first meeting of the Coun-

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Brother and sister sharing a moment

cil, Deanna and the council discussed adult siblings’ needs for information about support for their siblings’ transitions from high school to adult life, resources for siblings with disabilities as they age, and the potential of creating a “guidebook” for adult siblings. The Council also agreed that there were resources and discussions needed on more broad topics, such as how to bring spouses/partners into the fold regarding caring for adult siblings, help for transitioning when you move to another state away from your sibling, and ways to connect different generations of siblings. The National Sibling Council is also greatly invested in sibling advocacy regarding new Medicaid and healthcare bills being presented to Congress, particularly the American Health Care Act in May and the

Graham-Cassidy Bill in September. The potential for a National Sibling newsletter would help keep all siblings informed about the changes that could affect their loved ones. As time marches on, Deanna realizes that she never could have anticipated how her expectations of “siblinghood” were both exceeded and challenged. Dean has gone on to become a successful young adult. Now 17 years old, he is a published author, talented multi-sport athlete, soon-to-behigh school graduate, and has appeared in television commercials for The Arc of Massachusetts and most recently Poland Springs. The relationship between individuals with I/DD will always be a unique and wonderful journey and responsibility and Deanna and Dean wouldn’t have it any other way!

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News from the chapters of The Arc

Healthy Food Program promotes nutrition at The Arc of Cape Cod became increasingly apparent that members would benefit from the addition of an educational component. “We expanded the program because we saw a need,” says ChampagneSweet. “We imagined how much this resource could benefit our members and decided to bring in a professional.” Charles Petralia, a Healthy Food Program participant, and nutritionist Elizabeth Harlin, RD, attend a weekly meeting at The Arc of Cape Cod offices.

The Arc of Cape Cod has expanded its new “Healthy Food Program,” an initiative aimed at assisting members in leading healthier lives through well-rounded meals, physical activity, and nutritional education. Initially, the program was devoted to providing a handful of members with pre-made meals prepared by Athena Becrelis, a former restaurant owner with over 30 years of experience in the food industry, and her daughter, Marilyn Becrelis, executive assistant at The Arc of Cape Cod. Together, Athena and Marilyn create weekly menus with nutritious, whole foods. “When planning the meals, we look at calories, nutritional value, dietary restrictions and guidelines, and then we consider the combination of all the meals as a whole,” says Marilyn. According to Lisa ChampagneSweet, assistant executive director of The Arc of Cape Cod, the organization opted to expand the HFP as it

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Today, the program is spearheaded by Elizabeth Harlin, RD, who joined The Arc of Cape Cod in March of 2017. Through weekly activities and group discussions, members practice basic nutritional habits, like identifying food groups, selecting healthy options, controlling portions, and pacing eating. Members then have the opportunity to apply these techniques through hands-on tasks, such as meal planning, food preparation, taste testing, and grocery shopping. “The purpose of the program is to give participants the tools to be able to choose the healthiest, most nutritious food that will benefit their bodies,” says Harlin. HFP participants also engage in physical activities like walks, “armchair” exercises, bowling, and mini-golf. Other group outings include trips to local restaurants and grocery stores, allowing members to further explore nutrition in the community. To track progress, participants are provided with pedometers to record daily steps; they also work one-onone with Harlin to set goals for eating

habits, physical activity, and vital signs. Harlin notes that the satisfaction of reaching these goals can motivate members to keep working towards a healthier lifestyle. “I hope that they all have a personal goal that they get to fulfill,” says Harlin. “The main objective is for them to get to experience what good nutrition can do for their overall health and bodies.” The program also promises small, monthly incentives for continued participation as well as larger, individualized incentives for personal milestones; some members have opted to work towards fishing trips, concert tickets, and passes to major sporting events. According to Lisa ChampagneSweet, the HFP has been a positive experience for staff and members alike. “It’s been incredible to see the excitement on members’ faces when they come in for the program every week,” says Champagne-Sweet. “And it’s also been incredible to see our staff lifting the members up, showing them they can do this and giving them support.” In the future, Champagne-Sweet hopes to see the program extend its reach beyond The Arc of Cape Cod. “I would love to see it grow into something that more agencies could be a part of, something that could be available to other individuals who want to learn to live longer, healthier lives.”

The Arc of Massachusetts


News from the chapters of The Arc

Xaverian Brothers HS Faculty visits The Arc of South Norfolk As a part of their annual community outreach initiative, faculty from Xaverian Brothers High School in Westwood, MA, spent some time giving back. On Tuesday, October 10th, The Arc of South Norfolk welcomed a group of faculty to their Westwood campus. The day started out by President and CEO Daniel Burke giving an overview of The Arc of South Norfolk and their affiliate agency, Lifeworks, Inc. After a short tour of The Arc’s facility, faculty split up and participated in various activities. One group of faculty enjoyed a hike at Blue Hills with a group of adults served by the Family Autism Center. Another group of faculty hosted participants from The Arc of South Norfolk’s Day Habilitation Program at Xaverian Brothers High School. Participants got a tour of the school, visited the weight room, played

some sports in the gymnasium, and accessed the track and football fields for some outdoor fun. Everyone met up afterwards and enjoyed lunch together. The Arc of South Norfolk has a long-standing partnership with Xaverian Brothers High School. The group plans their route before embarking on a hike at Blue Hills. Each spring, students are given upon graduating from college to the opportunity to work in the Day work full-time for the organization. Habilitation Program as a part of The Arc of South Norfolk is grateful their Senior Project. Many students for the friendship of Xaverian Brothstay on and work as part-time ers High School and looks forward direct care staff during the summer. to continued collaboration in the Some students have come back years to come.

Put your advocacy talents to good use at The Arc of Massachusetts! Have you been looking for a way to help improve the lives of individuals with intellectual and/or developmental disabilities, including autism, and their families through advocacy efforts? Join our team of government affairs volunteers. Whether you are available on a short-term, long-term or an as-needed basis, take this opportunity to connect with other community members while using your skills and stimulating your interests to learn more about policy development, legislative advocacy and much more. We are seeking many types of volunteers. Examples of volunteer continued on page 25

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News from the chapters of The Arc

Futures program builds college connections By Kristy Hargreaves-Director of Employment and Day Services, Charles River Center

Friendships. Knowledge. Skills. Sense of community. Maturity. Selfconfidence. These are all qualities and results that I obtained during my college experience which helped to shape me. Everyone can benefit from having an opportunity for greater education and socialization. Two communitybased day programs at the Charles River Center have been sharing in unique programs at various local colleges in the pursuit of strengthening these areas. The Futures programs in Needham and Natick are part of the agency’s Employment and Day Services division. The programs focus on skill-building and gaining independence through opportunities for volunteerism, community inclusion, and life skills groups. The Futures programs also include a college component. The vision is to give the individuals the experience of being on a college campus as part of student life and to have the opportunity to learn and grow through educational lessons and relationship-building. So far, participants in Futures have attended Bridgewater State University, Emmanuel College, Becker College, and Curry College. A group of individuals from both the Needham and Natick programs attended an eight-week SelfAdvocacy Leadership Series at Bridgewater State University during the spring and summer of 2016.

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This program was sponsored by the Massachusetts Developmental Disabilities Council and Massachusetts Advocates Standing Strong. Topics included learning about self, communication, feelings, values, team-building, leadership, and taking political action. Each individual presented a speech that they developed at the graduation ceremony. According to Tiffany, a participant in the Needham program, “I had a good time. The classes taught me how to stand up for myself.” “Emmanuel College taught me responsibility. They taught us to take the future into our own hands,” stated Brian, an individual from the Needham Futures program. The program has participated in three semesters of educational sessions at the school and plans to return in Spring 2018. The college students designed curriculum based on the individuals’ preferences and goals. The individuals were able to meet with students regularly throughout the semesters, develop relationships, and learn about various topics. The Natick Futures program participants attended Becker

College during the spring of 2017 semester. According to Nancy, the Life Skills Coach who supported the group, “As a staff member, I loved this experience. The individuals were able to see many areas of the school.” Six individuals met with two students on campus weekly and explored various academic departments and recreational areas such as Health and Nutrition, Global Citizenship, Crime Lab Forensics, Gaming Design, and the athletic fields. The two Becker College students solicited feedback from the group and designed curriculum based on their interests. Peter D., a participant in the program loved the experience. He stated, “I liked Becker because I learned about the culture. We toured different areas. My favorite was the gaming department.” Individuals in the Needham Futures program have also attended two semesters at Curry College and are continuing this fall. Students at the college, along with a professor, design programming based on various life skills topics. They meet with individuals from Needham Futures and pair them with a student mentor. Together, they explore subjects such as music, nutrition, social skills, money management, stress relief, and self-esteem. At the end of each semester, the students host a ceremony and reception for the individuals and their families. continued on page 23

The Arc of Massachusetts


News from the chapters of The Arc

11th Annual Buddy Walk of the Berkshires draws more than 1,200 The 11th Annual Buddy Walk® of the Berkshires was held on Saturday, September 30 and boasted more than 1,200 participants. The event is hosted annually by the Berkshire County Arc Down Syndrome Family Group, which supports 40 families living in Berkshire County who have a family member with Down syndrome. All proceeds from the Buddy Walk will help to provide services and support for children, adults and families of people with Down syndrome living in Berkshire County. While the rain threatened, it held off during the walk and everyone had a great time. There was a buzz in the crowd as everyone rallied to support a great cause. Many families and friends of Berkshire County Arc returned to participate in The Walk, and there were also over 200 new faces this year joining in on the fun. Aaron Robb, principal of Wahconah Regional High School and family member of the Berkshire County Arc Down Syndrome Family Group and Kenneth W. Singer, President

Buddy Walk participants on the move

and CEO of Berkshire County Arc, along with State Representative Paul Mark, addressed the crowd. They continue to be impressed with the level of support and generosity from the Berkshire community year after year to help make this event such a success; from the local fire and police departments to food vendors and entertainment to support the

cause, this is truly a special day. The Walk, which is a one-mile walk that starts and ends at Craneville Elementary School in Dalton, was followed by music from Berkshire Hills Music Academy, a raffle, and various children’s activities such as face painting, hayrides and a photo booth. Food and refreshments were also served following the walk.

Futures program builds college connections cont’d from p. 22

Danielle loved her time at Curry College last spring. “I really liked the students,” she said. “I learned about the school and I liked Professor Carey a lot!” The collaborations are mutually beneficial for both the individuals

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in Futures and for the students and college communities. As Curry College student Gabby stated, “This has been such an incredible opportunity. As a group, we had so many laughs, smiles, and good times during the semester. We

have learned from each other and it was amazing to be a part of.” For Futures, the sky is the limit. We will continue to explore higher education and find opportunities to grow and learn how to be the best versions of ourselves.

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News from the chapters of The Arc

The Arc of Greater Plymouth completes impactful video project: “Better Relationships for Better Health” In June of 2016, The Arc of Greater Plymouth was fortunate to receive a $5,000 mini-grant from South Shore Community Partners in Prevention to fund an educational video designed to create greater awareness of the unique healthcare needs of individuals with varying developmental and intellectual disabilities. DDS Southeast Regional Training Council and The Nemasket Group of Fairhaven provided further funding. The Arc then contracted with Donna Rodriguez, Educational Access and Outreach Coordinator at PACTV, to produce the video. In addition to first-hand testimonials of a parent and several people with disabilities, two physicians also participated. A short questionnaire/survey was sent to Arc of Greater Plymouth’s families along with individuals 16+, post-grad special education programs, and area service providers to collect directly their patient, family and support staff concerns and opinions about their healthcare experiences. Expert consultants at UMass Medical School, Partners Health Care, and Massachusetts General Hospital participated -- enriching background information already gathered by the committee comprised of representatives from

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The Arc of Greater Plymouth, DDS Regional Training Council, Plymouth Area DDS Citizens Advisory Board, SSCPP Health Literacy Committee, and PACTV.

We hope to inspire each viewer with a sense of responsibility and an increased awareness of the importance of health literacy for everyone.

The final product, “Better Relationships for Better Healthcare - Improving Healthcare for People with Disabilities,” is a short educational video illustrating how patient/provider interactions can be enhanced by reducing barriers that inhibit the effective exchange of information. Reducing these barriers creates a better understanding between healthcare providers and their patients, leading to healthier outcomes for people with disabilities in our region and beyond.

A preview presentation with panel discussion was held in May of 2017 at The Plymouth Public Library. Panel members Dr. Rob Flaherty, Chief of Hospital Medicine BID Plymouth; Emily Colson, author, inspirational speaker and parent; Maureen King, Trainer, DDS Regional Training Council; and Marie Saldi, Self-Advocate led a lively conversation following the premier, which was narrated by Donna Rodriguez of PACTV. The event was moderated by Casey Seaman, DDS Plymouth Area Director, and attendees included Senator Vinny deMacedo, Maura Sullivan (Director of The Arc of Massachusetts Operation House Call), Mary Valachovic (Executive Director of The Arc of Greater Plymouth), hospital administrators, SSCPP Health Literacy Committee members, nurses, support agency staff, family members, and people with disabilities. Prior to this event, the video was screened for a group of self-advocates at The Arc of Greater Plymouth. The resulting conversations were exciting proof

The ten-minute video is being distributed via YouTube, Facebook, and other social media outlets to increase viewer audience. The target audience is healthcare providers in community and hospital settings, parents and service providers, and people with disabilities. It is designed to be an important first step towards broader education and enhanced communication, thus increasing mutual understanding (one definition of Health Literacy) between the individual consumer/advocate and the healthcare professional.

continued on page 25

The Arc of Massachusetts


News from the chapters of The Arc

The Arc of the South Shore’s Michael K. presents workshop at MASS conference Michael K. who attends The Arc of the South Shore’s Community Based Day Supports Program presented a workshop at this year’s Mass Advocates Standing Strong 20th Annual Conference on October 14, 2017. This year’s theme was United…. Self – Advocates Reach for the Stars! Michael’s workshop “Overcoming Obstacles,” focused on working independently and playing sports with a visual impairment! Congratulations Mike from all of your friends at The Arc of the South Shore!

cont’d from p. 21

opportunities include: • offering testimony and stories about personal lives and experiences • attending legislative district or committee meetings on behalf of The Arc • researching or gathering information about policy issues and pending legislation • helping put materials together (charts, reports, short fact sheets, etc.)

Michael K.

The Arc of Greater Plymouth completes impactful video project: “Better Relationships for Better Health” cont’d from p. 24

that the mission of this project will be fulfilled. The video will be available on the websites of The Arc of Greater Plymouth, Plymouth Area Department of Developmental Services, South Shore Community Partners in Prevention and The Arc of Massachusetts. It has great potential for improving health literacy and the quality of

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Put your advocacy talents to good use at The Arc of Massachusetts!

healthcare for our community by opening-up the conversation. The Arc of Greater Plymouth remains committed to giving back and to its mission to “empower and support people with disabilities and their families to belong, contribute and thrive.” The direct link to our video: https://youtu.be/o9uvs3o8Obw

• distributing letters or other material at the State House Depending on your interests and skills, you will be matched up with an Arc staff member who will orient you and be your point of contact. Volunteer positions are available for anyone wishing to contribute to improving the lives of individuals in the community. If you are interested or have questions, please call Maura Sullivan, Director of Government Affairs, at 781-891-6270 ext. 113 or e-mail her at sullivan@arcmass.org. Please leave your name, contact information, and your interest in volunteering. We will follow-up with you.

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News from the chapters of The Arc

The Arc of Opportunity takes self-advocacy to the next level By Colleen Brennan

At The Arc of Opportunity, we have always encouraged our individuals to be self-advocates, offering support groups and education to help them better understand what it means to be a self-advocate and how to put this knowledge into action. Well, in the month of August, our organization as a whole, -- individuals, families, and staff -- all were given a welcomed push from The Arc of the US to go to the next level of self-advocacy, and I am proud to say that we made a lot of noise doing so. This was an empowering experience for individuals, families, and staff and we found that participants were not only happy to be involved but that they had a lot to say! To make sure that their stories were clearly heard The Arc of Opportunity began by organizing storytelling workshops. These workshops gave the 24 participants the tools to tell their story effectively and leave an impact on those listening. The next step was to identify where these stories could be shared. Staff was relentless about reaching out to our state and federal representatives to set up meetings and also where public events were being scheduled. In any which way possible, we were making ourselves available

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to be seen and heard. Our first connection was at Senator Markey’s town hall meeting in Springfield, MA. We showed up in our orange “Disability Rights Are Human Rights” t-shirts and couldn’t be missed! The exposure that the shirts gave us allowed for our individuals to have a moment in the spotlight, with Senator Markey noticing and extending his event by an hour so that each of our eight self-advocates attending could speak. This first event sparked a fire and we then focused on meeting with Senator Warren. Unfortunately, Senator Warren is a very busy person and her town hall meetings were all scheduled in areas of the state that we simply could not get to -- but that did not stop us from making a connection with her staff. We were persistent and were able to arrange a meeting with her Regional Representative, Everett Handford. We hosted Mr. Handford here at The Arc in Fitchburg to meet with families, self-advocates, and staff. He listened generously but we suspect this may have been the first time he had sat with and heard firsthand stories from people with disabilities. As the meeting went on, he seemed to become more comfortable and even shared a few laughs before encouraging us to stay persistent, noting that

when it came to the attempted repeal of the Affordable Care Act, it is “your voices that kept the bill from passing.” After a tour of our facility, Mr. Handford departed and we were left with more fuel to keep going. Between meeting with state and federal employees and attending events, we flooded our website and social media sites with information and stories about our fight. We wanted to educate our followers about the catastrophic effect the “skinny repeal” (the Health Care Freedom Act) would have had on the disability community. We used resources from The Arc of the United States to send letters and posted our disapproval on Facebook for each of those Senators who supported the bill. About a week later, a last-minute town hall meeting with Senator Warren was announced for Concord, MA. Despite the short notice we came together again and were able to send 5 selfadvocates, staff and family to the event. We showed up excited, again in our orange shirts but quickly felt defeated when the lines to attend were around the block. One of our staff was quick on her feet and connected with our new friend Everett who was able to pull some strings and not continued on page 27

The Arc of Massachusetts


News from the chapters of The Arc The Arc of Opportunity takes self-advocacy to the next level continued from p. 26

only get us into the event but right up front. Everett also made sure we had an opportunity to speak with Senator Warren and take pictures. Despite the month of August coming to a close, our fight was not over. We continued to reach out and were able to host Jane Adams, Deputy District Director for Congresswoman Niki Tsongas. We again shared our stories, our efforts and how we plan to keep making ourselves heard. Jane applauded our efforts and encouraged us to keep ourselves seen and heard. She told us that the stories we share give the Congresswoman the fuel she needs when she is in front of Congress and it makes a more powerful impact when she can share a story being told from the heart. We knew going into the August Self-Advocacy month that being seen and heard is important to preserving the rights of individuals with disabilities. However, we now have a deeper understanding of how important it is to keep our voices heard in whatever capacity we can and that no effort is ever wasted effort. Whether it is through Facebook, website articles, making phones calls, attending events or hosting those directly connected to Senators and Congress men and women, we must remain the squeaky wheels

Achieve with us.

Senator Elizabeth Warren meets with self-advocates

by any means possible. Moving forward we are exploring the following options: • Offer a Parent/Caregiver advocacy group at least quarterly • Engage The Arc of MA to offer advocacy training on-site • Create metaphors that assist others to understand waivers • Launch a new “register to vote campaign” and encourage voting in every election • Offer more storytelling workshops, including within the self-advocacy groups • Educate more to support advocacy for the long haul

• Nurture relationships with our state and federal delegations • Invite state delegation for a tour • Follow up with “thank you’s” frequently • Host legislative breakfast this winter/spring re state budget • Sell at cost bright orange t-shirts for everyone here at The Arc and in the community beyond shouting out that Disability Rights are Human Rights. We look forward to continuing to promote self-advocacy and fighting for equal rights for individuals with disabilities. We are very fortunate to live in the state of Massachusetts and have such strong support from our elected officials on these matters!

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217 South Street Waltham, MA 02453 (781) 891-6270 www.arcmass.org

Achieve with us. The Arc of the South Shore pitches in to help Hurricane Harvey relief efforts

List of Advertisers The Arc of South Norfolk Attainable Savings Plan Berkshire County Arc Cardinal Cushing Centers Economised Time Services FletcherTilton PC Ivy Street School New England Village PLAN of Massachusetts and Rhode Island Riverbrook Special Needs Financial Planning Specialized Housing SUPPORTbrokers TLC Trust

Richard L. helps load supplies

The Arc of the South Shore thanks everyone for their generous donations and contributions to help our Hurricane Harvey Relief efforts. This project was coordinated by one of The Arc of

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the South Shore’s individuals, Richard L. We received an overwhelming response and were able to deliver a trunk full of items to South Shore Medical Center in Norwell, where they

Our advertisers help support the mission of The Arc of Massachusetts. were shipped to Houston. We appreciate your support to make a difference!

The Arc of Massachusetts

Advocate Fall 2017  
Advocate Fall 2017