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Advocate Summer 2017

“The Legislative Fight of the Decade” Health Care reform clouds future of services

Senator Warren

State House News reported that Massachusetts Governor. Charlie

Baker cautioned that the U. S. Senate’s proposed health care bill (BCRA-“Better Care Reconciliation Act”) would cost 264,000 state residents their health coverage and have a cumulative negative impact of more than $8.2 billion on the state by 2025. Senator Edward Markey described defeating the bill as “the legislative fight of his life”.

On July 17, Senate Majority Leader Mitch McConnell announced that the Senate would not be voting on the BCRA. As information about the impact of the US Senate’s bill was realized, other states’ governors reached out to their Senators to ask them to NOT vote for the bill. On July 19, Senator McConnell announced an upcoming vote on a repeal of the Affordable Care Act without an immediate replacement. The Arc reported that continued on page 12

Inside this issue... Article

Drop in State revenues delays services On July 7, 2017, the legislature approved the Conference Committee budget of 40.2 billion dollars for fiscal year 2018, short of some key funding which had been part of both the House and Senate budgets. The bill that was sent to the Governor reflects $600 million in downward adjustments with at least $23 million coming from DDS (Developmental Services).

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Unfortunately, Governor Baker added to the reductions as we went to press (July 17) with vetoes across the state budget. Most significant for our constituents was nearly $7 million more reduced relative to his original budget proposal in community residential services. In background discussions with The Arc, Ways and continued on page 11


The Friendship Corner..................7 Spotlight on: BAMSI....................9 SUPPORTbrokers.......................10 Government Affairs....................11 Education and Training..............16 News from the Chapters............18

Published by

In Memoriam: Joseph Andrade

217 South Street, Waltham, MA 02453 (781) 891-6270 • 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 Scott Borchardt Treasurer Secretary/Clerk Daniel Sullivan Immediate Past President


Subhadeep Basu Michael Maguire Martin Courage John Mallin Katherine Craven Geoffrey Misilo Kristin M. Hilf Sean Morrissey Susan Lodemore John Nadworny Joe Andrade, Director Emeritus


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

The Arc of Massachusetts Staff Leo V. Sarkissian Executive Director

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


We mourn the loss and celebrate the life of Joseph Andrade, board member emeritus of The Arc of Massachusetts, who passed away Saturday, June 17th at the age of 98 years. A donor, policy leader and financial officer, Joe has played a significant role in The Arc’s history.  Joe’s wife Irene died in Joe Andrade accepts an award from Fred Misilo and 1982 and his daughter Mary Ellen Mayo in 2008. Lisa (who was served by Minute Man Arc) passed away in 1994. He is survived by two sons, James of Acton and Paul of Sanford, Maine, along with three grandsons. Joe volunteered in several organizations in various capacities, including Minute Man Arc, United Way, and the MARC Trust. He served as President of The Arc of Massachusetts from 1986 to 1989.  After Joe’s retirement as financial officer for a division of W.R. Grace Company, he served as the financial officer of The Arc of Massachusetts for nearly two decades.  He provided strong fiscal oversight while saving the organization significant funds annually through his pro bono role.  His leadership was exceptional at a time when The Arc needed an anchor. When The Arc celebrated its 50th anniversary in 2005, Joe was one of the distinguished pioneers who was honored. He was further recognized for his sustained leadership and stewardship of The Arc in 2008, and in 2009 The Arc created the Joseph Andrade Leadership Award, presented annually. Executive Director Leo Sarkissian noted, “When I arrived at The Arc of Massachusetts, I was lucky and blessed to have Joe Andrade here as an anchor. He oversaw our finances and shared policy history. He set a tone that was reflected on the governing Specialized Housing, Inc. board and among Working with families to create innovative staff. It’s a spirit independent living opportunities since 1983 – home ownership and supported apartments. that remains with us today as other volunteers lead effectively in a selfless manner.” Joe will Specialized Housing, Inc. tel (617) 277-1805 45 Bartlett Crescent fax (617) 277-0106 be truly missed.  Brookline, MA 02446-2220

TheArc ArcofofMassachusetts Massachusetts The

Challenge Met! The Arc of Massachusetts celebrates the completion of the Home for the Future By Katrin Aback

Many, many thanks to the hundreds of donors to The Arc of Massachusetts Home for the Future Capital Campaign. Your gifts and support made it possible for The Arc to successfully complete the campaign that funded the construction of the statewide headquarters in Waltham. “We are very grateful to the individuals, families, chapters, agencies, and foundations that believe so deeply in The Arc’s mission that they made a commitment to the future of the organization by giving to the construction of the new building,” said Executive Director Leo Sarkissian. “Thank you all for your foresight and dedication!” Over the past few months, The Arc has been working to meet a significant fundraising challenge. Three donors wanted to inspire other supporters to give and push the Home for the Future Campaign over the finish line. Together, they offered to give $100,000 if The Arc could raise

at least $200,000 in new gifts and pledges. “I am absolutely thrilled to be able to announce that we reached our fundraising goal of $1.6 million in mid-July through the $100,000 challenge and the gifts that came in to total $200,000,” Sarkissian said. “It is now possible for us to focus on advancing disability policy, increasing our outreach, and ensuring that people with I/DD in our state have the resources they need to thrive,” he continued. The new building is allowing The Arc to remain at the forefront of the struggle to build better lives for those with disabilities by increasing our capacity. From the moment the building opened at the

Save These Dates! Be sure to mark your calendar for these important events. Visit our website ( for details

November 2-4, 2017 – The Arc National Convention, San Diego, California

end of March, The Arc of Massachusetts was welcoming partners in the disability community and families for meetings, programs, and trainings. The Arc now can hold meetings with our dozens of partner agencies, host legislators and supporters in comfort, conduct efficient legislative outreach, offer a venue for workshops for families and professionals, and provide work space for our team of staff, volunteers and students.

Thank you to all who have made this accomplishment a reality!

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

November 4, 2017 – Statewide Transition Conference at The College of the Holy Cross, Worcester April 23-25, 2018 – Disability Policy Seminar, Washington, DC April 25, 2018 – The Arc of Massachusetts – Gala and Auction Newton Marriott Hotel

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217 South Street Waltham, MA 02453 Phone: 781.891.6270 EXT109 E-mail:


News from the Becker Center for Advocacy! Plans are underway to offer individuals, families, and professionals new resources and programs!

2. Help families learn about and access needed supports, including elder caregivers

The Becker Center -- funded by the Michael, Angela, and Daniel Becker Family Trust – was established by The Arc of Massachusetts to advance family advocacy in the provision of innovative, lifelong community supports for persons with intellectual and developmental disabilities (I/DD) including autism. This intensive three-year advocacy and outreach initiative will support The Arc in meeting these important goals:

3. Advance inclusion of persons with disabilities in work and social pursuits

1. Advance opportunities for persons with disabilities through budget and systems advocacy

4. Address discrimination, both explicit and unintended, especially targeting the medical community This fall we will be starting the Advocacy Alliance and will be bringing on board two coordinators to develop a grassroots advocacy movement throughout Massachusetts -offering webinars and trainings on supporting elder caregivers; navigating state services and best

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

practices for supporting specialized needs (autism, medical challenges, etc.); featuring stories from a variety of groups to demonstrate the value of caregiving throughout the life cycle; promoting practices that assist youth and young adults in obtaining employment; expanding the ability to promote an individual’s ability to be an active member of their community; and reaching medical professionals to educate them about the needs of people with a variety of challenges and their families. For more information contact Co- Directors Kerry (Mahoney@ or Elizabeth (Pell@

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

Frederick M. Misilo, Jr. 508.459.8059 |


Art by Dominic Killiany, an artist living with autism


508.459.8000 |

The Arc of Massachusetts

In grateful recognition: Alice Shea, P.T., M.P.H, Sc.D. By Katrin Aback

Alice Shea dedicated her life to helping children with Down syndrome, Williams syndrome, and other developmental disabilities improve their motor development, to enhancing their lives, and to championing their inclusion in community. As a clinician at Boston Children’s Hospital, she directly touched the lives of thousands of young patients and their families; and as a researcher and educator at Boston University and Simmons College, her impact has been, and will continue to be, felt by many thousands more. Her peers considered her a leader in

the field of pediatric physical therapy. On July 28, 2014, Alice passed away at the age of 78. The Arc of Massachusetts, shortly thereafter, learned that she had included the organization in her will. Although she greatly respected The Arc and strongly supported our mission, Alice had not informed The Arc of her bequest.

Alice and child

“The Arc of Massachusetts is honored by the fact that Alice Shea chose to include us in her will,” said Executive Director Leo Sarkissian. “It is, however, very bittersweet. While we deeply appreciate this bequest and it is already helping to advance Providing services since 1954… The Arc’s mission, we did not have the Adult Day Habilitation Services opportunity to thank Family Support Program her for her generosity Family Autism Center and foresight; we did ALEC First Responder Training not have a chance to Adult Social/Recreational Programs learn from her why Harbor Counseling Center she picked us and Adult Family Care how we can best Residential Programs honor her legacy.”

Employment and Training Programs

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Her cousin Ellen Cobau spoke with Leo recently and helped us get to know Alice better. “She thought

The Arc was great and believed that political advocacy was necessary to improve the lives of people with disabilities,” Ellen told him. “She really liked that The Arc offered a range of programs and that you work so hard to make sure services have the funding they need.” Alice’s career at Boston Children’s Hospital spanned more than 40 years, during which time she was involved in a variety of clinical, research, and educational activities. As the Hospital’s Director of Physical Therapy Training, she mentored many students, colleagues, and other professionals in the area of developmental disabilities. One of those mentees is Dr. Priscilla Osborne, a specialist in Developmental Medicine at Boston Children’s Hospital. A long-time colleague and friend, Priscilla told us that “Alice is recognized by continued on page 6


In grateful recognition: Alice Shea, P.T., M.P.H, Sc.D. continued from p. 5

her friends and colleagues as an expert, a mentor, a compassionate care provider and a true friend. She was a wonderful, caring, gentle person.” Although Alice was well-respected as a researcher and teacher, the role of clinician was the one that she cherished most. “The high point of her day was working with the kids in person and really getting to know them and their families. She loved children, especially those with Down syndrome,” said Priscilla. Ellen said, “Not only was Alice very good at her craft, but she had the special talent of being able to communicate and connect with the patients and their families.” Her commitment to children extended beyond her work at Boston Children’s Hospital, into

the community. “Alice knew all the kids in Malden and Melrose who had Down syndrome,” Ellen said. “She looked at the whole picture of who they are as a person, considered their whole life. Friends, she felt, were a very important aspect. Social milestones were just as important to her as the physical milestones and accomplishments.” Priscilla concurred. “Alice stressed the importance of sports and community activities in a well-rounded life. She was very interested in inclusion and ensuring that people with developmental disabilities are full and active members of their communities.” To that end, she worked with Boston Ballet to develop a dance company comprised of teens with Down syndrome. The company performed at her retirement gala.

Alice grew up and lived all her life in Malden. She earned a Bachelor’s degree in Biology from Boston College, a Master’s degree in Physical Therapy from Simmons College, and a Doctor of Science in Physical Therapy from Harvard University. Her research and writing focused on motor issues of children with Down syndrome, William syndrome and cerebral palsy. Alice was very active in the American Physical Therapy Association, particularly in developing and establishing the Pediatric Section of this organization which is now called the Academy of Pediatric Physical Therapy. Alice remembered The Arc of Massachusetts in her will. It is a remarkable gift from a woman who had an extraordinary impact on the lives of so many.

About Bequests One of the easiest, but most significant ways to support The Arc of Massachusetts is by making a gift through your estate, or in other words, a planned gift. Whatever your personal financial goals are, a planned gift can help you meet your individual needs and strengthen The Arc of Massachusetts at the same time. For example, by including The Arc of Massachusetts in your will, you can specify which assets will support our mission after your lifetime. These assets will pass to us, thereby reducing the taxes incurred by your estate. Specific bequests allow you to bequeath a


dollar amount or assets, such as securities, real estate, or personal property. Residuary bequests are used to give all or a portion of the remainder of your estate after payment of expenses and any specific amounts designated to other beneficiaries. Contingent bequests will result in a gift to The Arc of Massachusetts in the event of the death of other beneficiaries or the fulfillment of certain conditions described in your estate plans. To learn more, please contact Katrin Aback, Director of Development, at or 781-891-6270, x105.

The Arc of Massachusetts

The Friendship Corner

Voices supporting friendships between people with and without disabilities Several people who are influential in the world of supporting friendships between people Angela Amado with and without disabilities visited Massachusetts recently. Their work reinforces the efforts of Widening the Circle. They may be helpful to you, too. Angela Amado, from the Institute of Community Integration at the University of Minnesota, facilitated two days of training on March 30-31, 2017. She helped Widening the Circle kick off its 2-year PATHWAYS to Friendship project. This project will provide consultation to 13 residential providers who will initiate a variety of approaches to over 120 individuals to help them better connect with their communities and establish relationships/ friendships with their community members. For this event Angela delivered a 2-part presentation titled “A Broader View of Efforts to Connect People in Deep & Meaningful Ways.” Her presentation was videotaped and can be viewed at http:// For more information about Angela and to access

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some of her work, go to https:// y48gpq52b. Angela is the author of “Connecting People with Disabilities and Community Members.” This resource (and accompanying worksheets) is available for free at: Connecting_people_with_disabilities_and_community_members. pdf. On May 10, 2017, Creating Our Common Wealth held a day-long conference. The lunchAndrew Oliver time speaker, Andrew Oliver, is the Director of Do for One (http://www.doforone. org/). Do for One’s mission is “Restoring dignity and purpose to people with disabilities through the power of relationships.” They are a Citizen Advocacy organization located in New York City. Recently Andrew wrote a blog posting titled “Am I really lovable like that?” Here’s bit of that blog: “Lately I’ve been reflecting on the fears and expectations that many people with disabilities are experiencing when entering into relationships. While I’ve been somewhat prepared for the fears that advocates might have in responding to someone in

need, what I was less prepared for is the fear that people with disabilities have with this idea of relating to someone who is both not a paid staff worker and non-disabled. “Recently, I was at a support group which consisted of about 35 adults with intellectual disabilities. In clarifying the type of service Do for One offers, one staff member asked the group, ‘How many of you have ever had an unpaid / non-disabled friend?’ Once it was clarified that she was not asking about friendly paid staff or others who have a disability receiving the same services, not a single person raised their hand.” To read Andrew’s entire entry you can go to: blog-posting/2017/3/1/ am-i-really-lovable-likethat?mc_cid=7f87f9b243&mc_ eid=c4e17f2dd1 Al Condeluci is associated with the University of Pittsburgh’s School of Social Work. He has been an advocate, a catalyst for building community capacities, and a leader in understanding social Al Condeluci

continued on page 8


Voices supporting friendships between people with and without disabilities continued from p. 7

culture since 1970. Since 1973, he has worked as an attendant, caseworker, advocate, planner, program director and now, CEO of his organization, Community Living and Support Services (CLASS). ( about/) Al was the main presenter at the May 24, 2017 Family Support Conference, “Building Bridges to Inclusive Communities!.” In his remarks, Al shared his article, Seven Steps to Meaningful Relationships,” with us. When thinking about how any new person can develop important relationships, Al says the following seven steps should be present: Step 1 – Look at the Relationships the Person Already Has: Who are the people who are already in someone’s life? Step 2 – Find the Passion or Point of Connection: What interests does someone have that can be shared by others?

Step 3 – Find the Venue of Connection Point: Where can a person find others who share the same interests? Step 4 – Understanding the Elements of Culture: Knowing the rituals, patterns and jargon can really help relationships form. Step 5 – Finding or Enlisting the Gatekeeper: The only way new people can successfully enter an existing community is when they are introduced and endorsed by a viable member of that community. Step 6 – The Skills of Friendship: Once the person is accepted and becomes a player in the new community, the person must then begin to demonstrate the behaviors

that we look for in friends. These include being Agreeable, Flexible, Available, Non-demanding, Interested is the same things and a Good Listener. Step 7 – Deepening Relationships: Building initial friendships is a start, but the real value and benefits happen when relationships deepen. These deep relationships include attributes like Trust, Love, Safety, Intimacy, Regularity, Sincerity and Sharing. You can read Al’s full article on our website at


Learn what matters, where it matters

• Skills for Life Occupational Therapists support

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. 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 Katrin Aback at 781-891-6270, ext. 105 or


development of life skills and emerging independence in your home and community • 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 |

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.

The Arc of Massachusetts

BAMSI selected as pilot site for the Brain Injury Community Center

The Massachusetts Rehabilitation Commission selected BAMSI’s Adult Services Division to pilot its Brain Injury Community Center (BICC) serving the Greater Worcester area. The BICC is designed to support adults who have been impacted by an acquired or traumatic brain injury. The Center provides services that are individualized and member-driven affording those it serves with a variety of activities and programming designed to increase community integration through natural supports, building upon interpersonal relationships, and utilizing resources. The Center is designed to enhance those adults with an acquired or traumatic brain injury to become more self-sufficient through education, employment and self-advocacy. BICC members work collectively with staff and each other to improve informed decision making, enhance general health and wellness while building independent and functional living skills designed to more fully enjoy all aspects of their community. Members participate in all essential program components. Empowering members to fully achieve their maximum level of independence, self-worth and dignity are vital components and overall goals of the BICC. Specific program components of the BICC include community linkages

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utilizing natural supports that assist members in navigating the service network in the Greater Worcester Area; employment services that include independent and supported employment with job coaching while maintaining a relationship with the working member and his/her employer; benefits and career counseling enabling members to understand the impact on benefits while accessing available work opportunities; education services designed to increase academic abilities and attain marketable skills; life skills that increase independence and self-sufficiency; health and wellness services promoting medication management, personal well-being, self-monitoring, nutrition, with overall emphasis on safe and healthy lifestyle choices; as well as social and recreational services including increased awareness of social relationships, developing and maintaining friendships, handling difficult situations, planning and scheduling social and recreational activities. BAMSI’s Brain Injury Community Center serves adults 22 years or older who have a documented Acquired Brain Injury and are referred by the Massachusetts Rehabilitation Commission (MRC). For those not referred by MRC, BAMSI will work to ensure there is verification of a traumatic or acquired brain injury and that the referral meets the general criteria of the Brain Injury Community Center and MRC. The Center is located at 15 Salem Street in Worcester. For more information on the BICC please call Michelle

Martin, BAMSI’s Program Director of the Brain Injury Community Center at (508) 792–2103 or on her cell at 508-326-9873, or contact the MRC at 617-204-3852 or email Michelle Martin, BAMSI is one of the largest minority, non-profit, human service organizations in Massachusetts. BAMSI’s mission is to empower people and enrich their lives, through compassionate support and diverse services, one individual, one family at a time. The agency provides high quality services to children, youth, adults and families that include day and residential programs for individuals with disabilities including those with developmental disabilities, traumatic brain injuries, and mental health challenges; housing and essential supports for those most in need; HIV/AIDS programs including case management for those living with HIV/AIDS; elderly supports for lowincome and disabled seniors; behavioral health services that provide an array of mental health initiatives; and an array of programs for children, youth, and families including Early continued on page 10



SUPPORTbrokers of The Arc of Massachusetts receives grant! The Dana Home Foundation has awarded SUPPORTbrokers a grant to fund Supporting Seniors with Autism in Lexington. Through this grant, SUPPORTbrokers will begin a year-long pilot study looking at the lives of ten individuals with autism or similar profiles over the age of 50 living in the town of Lexington. A Person-Centered Plan will be conducted for each individual and life plans will be developed for their futures. By doing this, we will gather summary information on supports and services for elders in Lexington.

Riverbrook, family trusted for over 50 years, providing high quality residential and innovative day services to exceptional women aged

This could lead to developing recommendations for how Lexington’s infrastructure of supports and services for elders and people with special needs might be utilized, adapted, or expanded to serve seniors with autism. Our intent is to develop a model that other towns could follow in discovering the unmet needs of a specific population, mapping existing resources in the community, and identifying barriers to services being provided. The Dana Home Foundation is dedicated to providing the care, comfort and wellbeing of senior citizens, with a

For more information contact Kerry Mahoney (

continued from p. 9

Intervention; Women, Infants and Children (WIC); and Wraparound Family Services. BAMSI’s workforce of more than 2,000 provides the highest quality of care, services and resources designed to help individuals achieve a community based, quality lifestyle. BAMSI’s footprint of services spans from Worcester to Cape Cod and Tewksbury to Attleboro serving nearly 25,000 individuals per year at 130 program locations.

F not just a home… a life.


“It is with extreme pleasure that we accept this grant from the Dana Home Foundation in Lexington,” said SUPPORTbroker Pat Pakos, who will be coordinating this project. “We look forward to a year of discovery, friendship, and collaboration as we work with individuals, families, friends, collaborators, and community organizations to enhance the lives of those we serve.”

BAMSI selected as pilot site

22 and up.

community opportunity respect / safety

special emphasis on serving, directly or indirectly, the needs of those who reside in or have connections to the Town of Lexington.

where exceptional women thrive Stockbridge, MA / 413 298 4926 /

BAMSI, together with The Arc of Massachusetts has worked for many decades to support the needs of the Commonwealth’s most vulnerable individuals. The Arc’s role as one of the leading advocacy group for human service providers has supported BAMSI’s role in improving lives of those with developmental and intellectual abilities. For more information on BAMSI programs, please visit us at or call Barbara Duffy, Vice President of Community Relations.

The Arc of Massachusetts

Government Affairs Drop in State revenues delays services continued from p. 1

Means members did feel that the House and Senate reductions were sufficient to address the revenue shortfall. We are hopeful veto overrides will take place in all the DDS budget reductions over the summer. The Arc recognizes that legislative leaders and the governor did advance some key priorities in the 2018 budget -- but the gains won’t be enough to address the needs of constituents over the coming year. Especially problematic are major cuts in both community- and state-operated residential accounts. Support for housing also has been affected by MassHealth’s change in regulatory language for the Adult Foster/Family Care (AFC) program and a significant cut in provider funding. In the summer we will continue our discussions with the administration and by fall to discuss possible strategies with legislative leaders. Day and Work services at DDS took a reduction too. The shortfalls will have an impact on serving those who turned 22 this year as well as unmet needs of existing recipients. The cuts will also affect the capacity of day providers to make sure

integrated community activities take place for our constituents. The reductions will have a significant impact upon our constituents, including those with autism, Down syndrome, and cerebral palsy. For example: • Young adults who have left school but need a day or work opportunity may be stuck at home • Family members especially parents may have to leave their jobs because of inadequate or no supports • An older caregiver whose adult daughter needs more assistance or a residence may not be able to get that help • A family whose son needs 24/7 assistance at home throughout

STAY CONNECTED! Visit our website Achieve with us.

the day due to cognitive or intellectual challenges may find out that they will receive less adult family or foster care resources because of regulation changes We will continue working with EOHHS Secretary Marylou Sudders, the governor and legislative leaders regarding our constituents’ needs. We hope you will share your stories with us so we can use them in our advocacy. The Arc tracks the budget on thearcofmass. org/advocacy where you can see pages for the state budget and policy issues.

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Government Affairs “The Legislative Fight of the Decade” Health Care reform clouds future of services continued from p. 1

services through MassHealth and the Department of Developmental Services are funded through Medicaid.” Please see the adjacent box.

Representative McGovern (center) meets with constituents

this approach too may not have sufficient support to pass in the Senate. You can keep up with the everchanging situation regarding the Congressional Republican leaders’ efforts to dismantle the health care plan and longstanding Medicaid federal state relationship by receiving “Notes from The Arc” by hitting “Subscribe” on our home page – “ Thus far, the House bill and proposed Senate bill “act as a tax reform bill with hundreds of billions of dollars slated to go into lowering tax rates, reducing Medicaid by a corresponding amount of funding, and removing federal regulations to protect those with pre-existing conditions. During a press conference,


Senator Markey stated that the bill would not improve upon Obamacare or make it easier for people to afford care. Instead, he said, it would be a “death sentence” for “the sick, the elderly, for the disabled, for those suffering with opioid addiction,” reducing both the availability of services for those populations and the quality of care. The Arc’s constituency would experience “a double negative hit in services as a result”, said Leo Sarkissian at The Arc of Massachusetts. This is because federal partnership of state Medicaid services would be permanently altered and secondly, because people with disabilities do have pre-existing conditions. It’s important to understand that besides health care, all our long-term supports and

During The Arc’s Capitol Hill advocacy in March, Senator Markey and Congressmen such as Jim McGovern, Bill Keating, and Seth Moulton personally met with Massachusetts advocates including colleagues from the Institute on Community Inclusion, Mass. Developmental Disabilities Council and others, stating they would stand by those with disabilities to oppose Congressional efforts to strip the protections presently offered by the Affordable Care Act. In Massachusetts, there is bipartisan agreement that the bill would be disastrous and the entire Massachusetts delegation has been working to defeat the bill. Senator Susan Collins (R) of Maine still opposes the revised bill due to the impact upon Medicaid. Governor Baker urged Congress to work in a bi-partisan manner to fix the problems that do exist with the ACA, but to not reduce Medicaid. We want our readers to understand how some of the provisions of the bill would affect you and other constituents. Both the House and Senate bills included: a cap and cut in Medicaid; waivers to allow states to eliminate the continued on page 13

The Arc of Massachusetts

Government Affairs “The Legislative Fight of the Decade” Health Care reform clouds future of services continued from p. 12

essential health care benefits; allowance for waivers to disregard the prohibition to discriminate against pre-existing conditions; and elimination of the incentive to provide home- and community-based services by eliminating the automatic federal reimbursement of 50%. The American Association of Medical Colleges opposed the Senate bill, stating: “Rather than stabilizing the health care marketplace, this legislation will upend it by crippling the Medicaid program while also placing untenable strain on states and providers…it will leave millions of people without health coverage, and others with only bare bones plans that will be insufficient to properly address their needs.” We wait for another attempt by Republican leadership to strip the ACA without a bipartisan strategy to fix agreed upon problems. We fear that another version of the repeal will be put forward. Republicans control the Presidency and both branches of the legislature. We can hope with this power in hand, they will now turn to an approach that maintains the positives of the Affordable Care Act and provides fixes to address shortcomings in a bi-partisan manner. The outcome of this debate will decide the shape of our services for future decades.

Stay Informed! Because our legislative efforts are ongoing, both on Beacon Hill and Capitol Hill, we urge you to sign up for email bulletins from The Arc of Massachusetts on vital issues by visiting our website ( Click on Take Action and then click on Action E-list at the bottom of the page. You will be notified when you can make a critical difference on important national and state issues.

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Examples of Medicaid-funded services for adults and children: DDS Turning 22 DDS Adult autism supports DDS Employment or Day DDS Transportation DDS Residential including self-direction DDS Family support services DESE-DDS program DDS autism children’s program DDS State Facilities Any MassHealth Health or Related Service including: Day Habilitation Services Adult Foster/Family Care Personal Care Attendant Services Continuous Nursing Adult Day Health Durable equipment Kaleigh Mulligan (TEFRA) ABA Therapies – In home and school based School based – Developmental services School-based Therapies – physical, speech, occupational School based Psychological, neurological, counseling and medication Health services provided in schools (including immunizations and nursing) Early Intervention for infants and toddler


Government Affairs

Commissioner Howe Leaves DDS On July 14, Commissioner Elin Howe retired as Commissioner of the Department of Developmental Services (DDS). Jane Ryder, Deputy Commissioner, has agreed to serve as Interim Commissioner beginning July 15 while Secretary Marylou Sudders continues an active search for a successor. DDS oversees a wide array of services for adults with intellectual disabilities and certain developmental disabilities including autism. Children’s services, primarily family support (up to 18 years), are provided to those with related developmental disabilities.

School. She successfully led the state’s negotiations in the Rolland Nursing Home Lawsuit Settlement, helping adults move to community settings. Against the backdrop of closure (including sheltered work), she reaffirmed that being in the community also meant being part of it. We can’t forget that those who work, live and volunteer in our system have been touched by the same societal biases that persons with disabilities face every day. We need to reaffirm values of dignity, respect, and inclusion daily in our community system of care and support.

During her tenure Commissioner Howe closed a number of facilities including Fernald State

Howe also played a key role in vetting four key pieces of legislation, now laws passed through

the Acts of 2014. DDS now serves adults with developmental disabilities and autism (and other conditions). She displayed grace and a thoughtful manner in her work. Howe wanted DDS and its agents to reaffirm the values of dignity, respect, and inclusion on a daily basis. Jane Ryder has worked for the Department since September of 1995. She took on the role of Deputy Commissioner in July 2015. She has assisted Commissioner Howe with the implementation of all Department priorities and directives including waiver enrollment, promotion of Shared Living and Self Direction, and improving consistency in practice across the state.

Representative Jeffrey Sanchez named Chair of House Ways & Means Committee House Speaker Robert DeLeo has appointed Representative Jeffrey Sanchez of Jamaica Plain to head the powerful House Ways and Means Committee, succeeding Representative Brain Dempsey who is leaving Beacon Hill to join ML Strategies, a prominent Boston lobbying firm. Sanchez was first elected to the


House in 2003 and has previously chaired the committees on Public Health and Health Care Financing. In naming Sanchez, Speaker DeLeo pointed to his ability to “understand the finer points of policy and translate them into workable solution.” The Ways and Means Committee is responsible for preparing the House version of the annual state budget.

Leo Sarkissian said, “We were fortunate to have a strong ally in Brian Dempsey during his years in the State House. We wish him success. Representative Sanchez has been supportive on disability issues as Health Care Finance Chair. We look forward to continuing our strong relationship with him in his new role.”

The Arc of Massachusetts

Government Affairs

Legislation is a high priority for government affairs team The 190th Legislative session is in full swing with hearings being held by the Joint Committees. The Arc of Massachusetts has been building support and gaining momentum for our top bills. Through work with our Government Affairs Committee, our Board of Directors, and stakeholders across the state, The Arc of Massachusetts has produced a bill platform of important and impactful legislation. One of these, known as Nicky’s Law, would create an abuse registry which would protect the safety and dignity of people with disabilities. Persons substantiated as having abused or neglected an individual with autism or other intellectual or developmental disabilities would be listed on this registry and this would prevent re-hiring. The bill was filed by Senator Mike Moore and Representative Linda Dean Campbell; the bill numbers are S 64 and H 80. With enormous support from our community (including a Facebook group of over 600 members), the

Joint Committee on Children, Families and Persons with Disabilities has already received dozens of calls and written testimony in support of the bill. As we prepare for the hearing, we are assembling panels for oral testimony. Nicky, the young man behind this legislation, and his family have continued to help grow grass root supports through their story of his abuse. This bill would help protect the safety and dignity individuals like Nicky. Stay tuned to Notes from The Arc for updates on the progress of this bill. To learn about our other priority bills, which include healthcare, housing, safety, education and more, call or email Maura Sullivan at 781-891-6270, ext. 113 or

This is why you plan. We share a common bond — we are parents and siblings of people with special needs. For over 20 years we have been helping families like our own to plan for their future and provide for the lifelong needs of their family member with a disability. We talk about the money but we know that money is not everything. It’s about planning for a full life. Cynthia Haddad, CFP® John Nadworny, CFP® Alexandria Nadworny, CFP®

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Financial planning and investment advice offered through Shepherd Financial Partners, LLC, a registered investment advisor. Securities offered through LPL Financial, member FINRA/SIPC. Special Needs Financial Planning, Shepherd Financial Partners, and LPL Financial are separate entities


Education and Training

Webinars for Educators! Tuesday, August 29, 10:00-11:30 AM Person Centered Transition Planning Webinar for Educators and School Administrators This webinar will focus on the use of Person Centered Planning in creating seamless transitions to adult services for students ages 14-22. Participants will look back at the historical perspectives of student planning, learn why a person centered approach makes sense and view methods of person centered planning. This workshop will provide examples of student outcomes and highlight best practices.   Presented by: Pat Pakos, MS and Kerry Mahoney, The Arc of Massachusetts  Pat Pakos is in a unique position to assist families with transition services in that she is a parent of an adult daughter with disabilities and is a professional in the field of developmental disabilities. She is well-known as a presenter of workshops which help individuals and families plan significant transitions from school to adult services and from home to community living. Presently, Pat works for The Arc of Massachusetts as a Support Broker focusing on Transition, PersonCentered Planning, and the needs of the disability community. Pat earned her M.S. degree in Severe Special Needs from Simmons College with a focus on Inclusion, and her B.A. in English Literature from the University of Maryland. Working with local chapters of The Arc for over 30 years, Kerry Mahoney has developed and managed a variety of supports, services and resources for people with intellectual and developmental disabilities and their families. She is currently the Director of SUPPORTbrokers/PALS and Director of Outreach/ Education, Kerry has a broad knowledge base of the state, federal and private resources that support people with intellectual and developmental disabilities, including autism. Kerry became a support broker in December 2008 and has received training in personcentered planning and approaches from The Institute for Community Inclusion, Michael Smull, University of Maryland, and University of New Hampshire Institute on Disability. Cost: $60. Financial assistance is available. 

Wednesday, August 30, 2017 3:00-4:00 PM, $40 Financial Literacy for Students with Special Needs Representatives from PwC will discuss financial literacy education for individuals with disabilities. The discussion will focus on how these skills contribute to long-term independence and dignity, and available resources for teaching. We will explain the role that saving, budgeting, purchase decisions, and financial safety play in the lives of individuals with disabilities. Scott Borchardt is a Partner in PwC’s Asset and Wealth Management Practice. Scott is a co-leader of the PwC Boston office employee resource group (ERG) that supports employees with disabilities and caregivers. Under Scott’s leadership, members of the ERG have partnered with several community organizations to host sessions about financial literacy for individuals with disabilities. He is currently serving as the Secretary of The Arc of Massachusetts board of directors. Margo Mulane is a Senior Associate in PwC’s Asset and Wealth Management Practice. Margo is a coleader with Scott of the PwC Boston ERG which support employees with disabilities and caregivers. Margo is passionate about advocating for individuals with intellectual disabilities and volunteering her time and energy towards that end. She has been a leader in adapting and delivering the PwC Earn Your FutureⓇ financial literacy curriculum to individuals with disabilities through partnerships with community organizations. Kellie Casey is a Senior Associate currently on a Tour of Duty with PwC’s Responsible Business Leadership team based in Chicago, IL. Kellie is currently supporting PwC’s efforts to help close the opportunity gap among underserved communities through PwC’s new 5-year Access Your PotentialⓇ commitment to promoting financial literacy awareness, tech skills and college and career mentoring. Cost: $40. Financial assistance is available.  Contact Kerry at 

Contact Kerry at 


The Arc of Massachusetts

Education and Training

Transition Conference set for November 4 Plans are underway for the 2017 Transition Conference on Saturday, November 4, 2017 at the College of the Holy Cross, Worcester! This all-day conference for caregivers will provide state-of-the-art information on best practices in transition as well as understanding the journey to adulthood and state services.  Special workshops will be held for caregivers who have students with Autism Spectrum Disorders, Complex Medical Needs and Emotional/Behavioral challenges.  The conference will feature Dr. Michael Wehmeyer, who will speak about “Self Determination: Choice and Control in Planning a Meaningful Life in Adulthood.”   Dr. Wehmeyer is the Ross and

Marianna Beach Distinguished Professor in Special Education and Director of the Beach Center on Disability at the University of Kansas. The day will be packed with 3 sets of 8 workshops to choose from -- and two sessions will be presented in Spanish!  Many thanks to the conference committee members: Ingrid Flory, DDS; Jean Clapper, HMEA; Johanne Pino, MAC; Kathy Kerwin, The Arc of Greater Brockton; Andrea Morris, The Arc of Greater Haverhill-Newburyport; Amanda Greene, DESE; Jennifer Stewart and Kathy Kelly, MRC; Sophia Johannsson, MFOFC;, Gloria Castillo, Autism Support Center/ Northeast Arc; Nancy Mader, FCSN; Christine Shaw, Merrimack

College; Paula Thompson, SUPPORTbroker; Maureen Costello Shea, AFAM; and Kris Callahan, MDDC. It truly takes a village to plan all the necessary information and resources! A big shout out to Gloria Castillo, Autism Support Center/Northeast Arc; Ingrid Flory, DDS; Olga Lopez, Susan Ou and Oanh Bui, FCSN; and Evelyn Rosario, Sandra Tineo and Ydalia Heimann, Centro for their help and expertise in designing our outreach and workshops for caregivers from diverse cultures! Registration will be live on The Arc’s website  at the end of August. Opportunities for sponsorship and exhibits are available; please contact Kerry at 

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 volun-

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teers. Examples of volunteer 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.) • 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 Please leave your name, contact information, and your interest in volunteering. We will follow-up with you.


News from the chapters of The Arc – EMPLOYMENT

EMARC focuses on employment opportunities


The Arc of East Middlesex (EMARC) has a long history of providing employment opportunities for the people it serves. One longstanding example is its Community Group Supported Employment program, which includes a partnership with DogWatch, a Massachusetts-based manufacturer of Hidden Dog Fence Systems, Indoor Pet Fences and Training Products. The company was founded in 1990 and its relationship with Emarc began in 1991 when East Middlesex Industries was located in Stoneham. As a start-up company in a nearby community, DogWatch required a workforce to package their invisible fence system for dogs. From 1991 to 2014, EMARC consumers pack-

aged this product at our workshop, first in Stoneham then Reading; During this time DogWatch moved its company headquarters to a larger facility in Natick. When EMARC made the decision to eliminate the workshop in 2014, a creative solution was found: EMARC Skills Instuctors transport consumers to the Natick location five days a week to assemble the wireless kits as an onsite group work enclave. This location quickly became the favorite site among EMARC participants. Currently there are 24 individuals who rotate through the DogWatch enclave each month, earning the hourly minimum wage. The kits packaged in Natick are shipped all around the world – a process which requires attention to detail and strict quality control measures. The staff at DogWatch in Natick treat our individuals with respect and value their contributions. If you visited this business during morning break or lunch, you would witness consumers making coffee in the kitchen and visiting with DogWatch staff along with the dogs they bring to work. The company’s manage-

ment organized a holiday luncheon in 2016 and presented each worker with a DogWatch sweatshirt, cup, and bag. Other EMARC employment opportunities are focused on individual employment in the community – a program that serves Larry Nutle. If you are doing your grocery shopping Wednesday or Friday afternoon at Shaw’s in Wakefield, you are likely to meet Larry, who recently celebrated his tenth year of employment as a Customer Service Associate. You can find Larry bagging groceries, collecting carts from the parking lot, helping customers locate items within the store, removing trash, and helping customers load groceries into their cars. When asked how he achieved his ten-year milestone Larry commented, “I enjoy working there. I have made friends at work. My favorite part of the job is working with the customers. I like it when they come up to me and tell me I am doing a good job.” In recognition of his tenth anniversary, Larry was presented with a certificate along with a 10-year pin and will receive a sterling silver Shaw’s ring.

The Arc of South Norfolk and Comcast team up for Comcast Cares Day Comcast Cares Day is a celebration of a year-round commitment to service, and has grown to become the nation’s largest single-day corporate volunteer event. On Saturday,


April 22nd, more than 50 Comcast employees came to The Arc of South Norfolk in Westwood to host a Family Fun Day and Barbecue. The rain didn’t stop the festivities,

as volunteers from Comcast helped run indoor activities for children and adults, and laughed along to a special performance by the Bubbleman. continued on page 19

The Arc of Massachusetts

News from the chapters of The Arc – EMPLOYMENT

Walgreens REDI Program is working in Brockton By Jay Lynch

manager and the Walgreens Human Resources department. While assisting with an Autism meet-up group fundraiser, the Brockton Area Arc job developer, Gail Delgado, met the store manager of the Walgreens store on Pleasant Street in Brockton. The networking meeting that followed led to a conversation about the Walgreens REDI program. The REDI Program “creates partnerships between stores and local disability resources to provide job skills training for people with disabilities. REDI is a training program, not a placement program. The purpose of REDI is to educate externs with the skills and competencies required to be successful in our retail environment.” When asked, the manager of the Pleasant Street Walgreens agreed to offer the REDI program to jobseeking individuals from the Brockton Area Arc. The store manager received approval from her district

Three Brockton Area Arc individuals were interested in participating in the REDI program. The twice-weekly four-hour REDI program shifts continued for eight weeks with the consent of the participants. One person realized that this type of retail work was not to her liking. For the other two, the REDI program was an opportunity to learn and showcase their abilities. Although the REDI Program Elvis attending Walgreens training. He was hired by is not a placement program, Walgreens as a regular employee. both participants were offered shelves with new product, checkjobs as Customer Service Associates ing expiration dates and removing this spring. As Customer Service Asexpired products, and maintaining sociates, Onelia Goncalves and Elvis store signage and displays. Soares provide friendly, courteous, and efficient service to customers. Both Oneila and Elvis enjoy their Both are bi-lingual and both have part-time jobs and are doing well regular opportunities to assist cusat Walgreens. The Walgreens REDI tomers who speak Cape Verdean Program has provided valuable job Creole. In addition to assisting cusopportunities for Onelia and Elvis in tomers, the work includes stocking Brockton.

The Arc of South Norfolk cont’d from p. 18

Over 100 people participated in the event, with Representative Paul McMurtry, Norwood Selectmen Paul Bishop, and Norwood Police Department personnel taking part in the special day as well. The event was a huge success! The Arc of South Norfolk looks forward to being a part of the nation’s largest single-day corporate volunteer event in 2018, promoting community service and a commitment to improving the quality of life in our local communities.

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Volunteers from Comcast pose with staff for the 2017 Comcast Cares Day at The Arc of South Norfolk


News from the chapters of The Arc

Berkshire County Arc hosts Pathways to Justice Conference ment, Berkshire County District Attorney’s Office, Department of Children and Families (DCF), the Pittsfield Police Department, Berkshire County Head Start, and The Brain Injury Association of Massachusetts (BIAMA). This prestigious team worked to organize the training and build community investment and continued collaboration on issues related to criminal justice services for people with disabilities.

(L-R) Berkshire Count y Arc self-advocate Carol Neuhaus and Leigh Ann Davis MSSW, MPA from the National Center on Criminal Justice and Disability

Berkshire County Arc (BCArc) and The Arc of the Unites States’ National Center on Criminal Justice and Disability® (NCCJD) collaborated to hold the day-long Pathways to Justice® Conference for over 75 local law enforcement, victim service providers, and attorneys on Friday, June 16 at Berkshire Community College. This conference was made possible by a grant through The Arc of the U.S. and the U.S. Department of Justice, Bureau of Justice Assistance (BJA). BCArc was one of six chapters in the country chosen to host these trainings. The grant focused on the creation of a Berkshire County Disability Response Team which is made up of representatives from: Berkshire County Arc (BCArc), Berkshire Community College (BCC), National Alliance on Mental Illness (NAMI), Berkshire County Sheriff’s Depart-


Two speakers from NCCJD, Leigh Ann Davis, MSSW, MPA. and Ariel Simms, JD, spoke on a variety of topics addressing some of the key barriers that limit successful interaction between individuals with intellectual and developmental disabilities with the criminal justice system. Other speakers included three self-advocates, law enforcement, and disability service providers. Morning sessions focused on examining definitions of disability, and teaching specific strategies to help professionals recognize when they are interacting with a suspect or victim with an I/DD, and teaching guidelines for effective communication. The training challenged stereotypes, required attendees to examine their personal values and biases, and provided criminal justice professionals with the invaluable opportunity to hear from self-advocates Carol Neuhaus and Isabella Carey. The afternoon session highlighted profession-specific programming which built on the morning’s train-

ing. Victim service providers learned about effective accommodations for supporting crime victims with disabilities, discussed current issues disproportionately impacting victims with I/DD (including trafficking and competency to testify), and learned about local and state resources. Presenters in this module included Cybèle Kilby, Director of Day and Family Enrichment Services at BCArc; Susan Vickers from the Disabled Persons Protection Commission; and James Miller and Veronica Loya from Awareness and Action. Law enforcement professionals heard presentations from Tom Grady from the Berkshire County Sheriff’s Department and NCCJD staff designed to increase awareness of I/DD; to help officers identify if someone has I/DD; to teach successful communication tips to use when interacting, communicating, mirandizing, interviewing or interrogating people with I/ DD; and to teach strategies that can help de-escalate potentially dangerous situations and minimize use of force. They also learned about a wide range of resources available to law enforcement within local communities. Kenneth W. Singer, President & CEO of Berkshire County Arc said of the training, “we were so impressed with the showing of local providers at this training. It shows a real effort and want for togetherness along with a desire to best serve individuals with disabilities in challenging times.”

The Arc of Massachusetts

News from the chapters of The Arc

Changing Lives: Innovative gift to Northeast Arc In deciding to make an unprecedented $1 million gift to Northeast Arc, Steven P. Rosenthal wanted to ensure it would have maximum impact. “I wanted to do something different, innovative, even disruptive, in a positive sense,” he said. “The idea was to find a way to literally change lives one at a time.” The result is the establishment of the Changing Lives Fund, which will provide a new vehicle for Northeast Arc to expand services in creative and innovative ways that traditional funding has not allowed. Rosenthal, a Marblehead resident, is founder and chairman of West Shore LLC, a Boston-based real estate private equity company. He said he wants his gift to enable Northeast Arc to break new ground in the work it does providing lifelong support for people with disabilities. “This is a real game-changer for us,” said Jo Ann Simons, CEO of Northeast Arc. “Not only is Steve’s gift significant in the level of his generosity, it will allow us to greatly expand our reach in supporting individuals and test other new ideas and innovations.” Rosenthal said he is confident in Northeast Arc’s ability to effectively use the gift as intended. “They can figure out what will be innovative, what will be impactful, what will be different,” he said. “Jo Ann is an innovative, aggressive thinker. Northeast Arc is on the front line of helping people on the most basic level, in their day-to-day individual lives.” The Changing Lives Fund can be used to develop a service model that is not

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currently funded by a state or federal agency; provide seed money to start a new initiative that will become selfsustaining; and develop initiatives that simultaneously support the Northeast Arc’s mission and the needs of the community. The fund also allows Northeast Arc to provide financial support to new ideas of other individuals and organizations that support people with disabilities and are consistent with Arc’s mission.

Rosenthal’s philanthropic work includes currently serving as a trustee of the Ruderman Family Foundation, which advocates for the inclusion of people with disabilities throughout society. He also serves on the board of trustees at the Loomis Chaffee School in Connecticut. He has previously served on the board of the Massachusetts Convention Center Authority, American Israel Public Affairs Committee and several roles at Harvard College.

“To borrow Steve’s use of the word Sustainability for the Changing Lives ‘disruptor,’ the Northeast Arc has a hisFund may include future donations, tory of playing that role. Family memgrant activity and business income from bers have been the most creative and start-ups supported by the fund. positive disruptors in our industry, and this fund will give us the flexibility to ALL PEOPLE WITH DISABILITIES – support them,” LIFELONG AND AGE-RELATED – Simons said. SHOULD HAVE THE MEANS TO LIVE Rosenthal earned his bachelor’s degree at Harvard and a law degree at Boston University. He practiced corporate law for 25 years and served as co-managing director at Mintz Levin Cohn Ferris Glovsky and Popeo. Prior to forming West Shore, he served as president and CEO at Northland Investment Corporation.

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News from the chapters of The Arc

Annual Legislative Breakfast in Central Massachusetts By Jennifer Williams

Retiring DDS Commissioner Elin Howe receives a gift box from Carlos Torres

The Center of Hope Foundation, Inc., along with the Providers of Central Massachusetts and the South Valley Department of Developmental Services (DDS) Citizens Advisory Board, hosted its 27th Annual Legislative Breakfast at The College of the Holy Cross on June 20, 2017. Nearly a dozen members of State Government attended this forum, along with supporters, stakeholders, and partners of the Center of Hope Foundation. The theme of this year’s breakfast was “Celebrating a Life of Dedication,” a tribute to retiring DDS Commissioner Elin Howe. Linda Cournoyer, Center of Hope Board Member, parent, and life-long advocate for those with disabilities, served as moderator and introduced Cindy Howard, Chief Operating Officer of the Center of Hope Foundation.


The morning agenda featured Michael Moloney, the CEO of HMEA, Inc. He spoke passionately about the current Workforce Crisis, as the combination of a better economy, an increase in minimum wage and an increase in health care costs that has led to a shortage of entry level support staff. Andrew Marsh, diagnosed with Autism, spoke about his personal journey and need for supports as he seeks employment after graduating from college. Sherie Bombardier, parent, touched upon the Adult Foster Care (AFC) issues due to the “tightening up” of the definitions that may change payments drastically for family members whose needs are not well understood. Commissioner Howe was able to take the time to update the audience about where the Department of Developmental Services has come from and their goals into the future for Massachusetts. Award recipients for the day included: Tony Yeulenski (Life Skills, Webster) - Employee of the Year Wendy Bigelow (Seven Hills Foundation, Worcester) - Family Support Worker of the Year Stacey Beland (The Bridge of Central Massachusetts, Worcester) Professional of the Year

Craig Backhus (Center of Hope Foundation ) - Human Rights Recognition Erika Travinksi (Center of Hope Foundation) - Caring and Leadership Recognition Rick and Judy West (Central Massachusetts) – Community Support Recognition David and Marjorie Cohen – advocates- Linda Cournoyer Award for Excellence in Advocacy Jessica Dunn (Horace Mann Educational Associates) - SelfAdvocate Award Cindy Howard was recognized by the Center of Hope Foundation for her work as Chief Operating Officer. Linda Cournoyer, Board Member for the Center of Hope Foundation and friend, presented Cindy with this recognition for her “behind the scenes and tireless efforts” in her positon. Elin Howe, DDS Commissioner, who had recently announced her retirement, was honored by the Center of Hope and partner agencies for her years of service and dedication to supporting and advancing the rights and opportunities for those with Intellectual Disabilities. The breakfast highlighted many of the challenges facing the Disability Community and was an opportunity for legislators to hear first-hand how potential budget cuts could impact people’s lives.

The Arc of Massachusetts

News from the chapters of The Arc

Jeff makes a comeback By: Robin Ellington, CLASS /The Arc of Greater Lawrence

When Jeff came to CLASS in 2013, he knew he wanted to find a place for himself in his community, both socially and with a job. So he worked hard.

Bob Harris, president and CEO of CLASS, with Jeff soon after his return to CLASS.

Through on-the-job vocational training he learned retail skills as a volunteer, sorting donated clothing at Ruth’s Place, talking to customers, and working with a supervisor and other volunteers. He set an example of success and independence for his peers to follow. Jeff’s accomplishments and great resume quickly led to a part-time job at Sodexo on the campus of Merrimack College, working in the dining commons. “I’m a hard worker,” Jeff said. “I cleaned tables and worked behind the counter at the sandwich shop. I worked with my supervisor and did what I was told to do. I was proud of my job.” Then everything changed. Jeff, then 26, left CLASS in June 2016 to live with his family in Connecticut, immediately following the death of his mom after a long illness. He took it very hard — many sudden changes turned his life upside down. “His whole life was disrupted,” said Carol Martin, his case coordinator at CLASS. “Jeff moved the day after the funeral. Everything was done so quickly.”

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One of the first things Jeff and his family did was contact the Connecticut Department of Developmental Services for support, but they were unsuccessful. Disappointed in having no services, they felt their options were shrinking. “It was an unsettling time for Jeff,” Martin said. “He was with people who care about him very much, but he missed what his life had been – the social life, work and the paycheck. He called me at least once to as many as three times a week just to talk. He was adjusting, doing OK, but he said he missed people here. “He told us he wanted to move back to Massachusetts and back to CLASS,” she said. “Life was full here – that’s what Jeff wanted for himself again.” So the young man began advocating for himself in earnest, telling his family first that he

wanted to move back, how he missed the area and what his life had been. “I want to work and I want to be busy,” Jeff said. Jeff was a fast worker. Six months later, in December 2016 he called Carol to announce he was moving to Lowell to live with family. Carol contacted the Department of Developmental Services (DDS) to get his MassHealth coverage reinstated, and, with the help of Bob Harris, CLASS president, and his DDS service coordinator Jeff’s services were reinstated, Carol said. “We got Jeff back,” she said. “He already has landed another job, at Extended Stay America in Burlington, the next step in his career. “Now he needs to rebuild his social life, since he’s settled here and comfortable,” she said with a contented smile.


News from the chapters of The Arc

GWArc receives $5,000 grant from Foundation for MetroWest Youth in Philanthropy Program By Joanne Raymond

with hundreds of students to ensure successful transition to the adult world upon high school graduation.

High school students in the Foundation for MetroWest’s Youth in Philanthropy Program gather outside GWArc after their site visit with Roz Rubin, CEO (back row, 3rd from left) and Daisy Antonini, School to Work Transitions Program Manager (front row).

GWArc is proud to be the recipient of a $5,000 grant from Foundation for MetroWest’s (FFMW’s) Youth in Philanthropy Program. This grant supports GWArc’s School to Work Transitions Program, which provides services for high school students as they transition from school to work and productive adult life in the community. We are especially gratified that this grant was based on the recommendation of high school students participating in FFMW’s Spring Youth in Philanthropy Sudbury Program who recognized and supported the needs of high school students with developmental disabilities and learning challenges. FFMW provided the grant following a site visit by Youth in Philanthropy Program participants. Seven high school students and their program


advisor visited GWArc in April to learn more about our School to Work Transitions Program. Daisy Antonini, Transitions Program Manager, and Roz Rubin, GWArc CEO, provided an overview of GWArc and a detailed view of the School to Work Transitions Program and answered students’ questions. School to Work Transitions, which runs in collaboration with Waltham Public Schools, is a highly inclusive program designed to help students with developmental disabilities and learning challenges gain job skills and work experience to prepare for transition from high school to work. Using a student-centered, whole life planning approach that involves the student, family members, school personnel and community members, the School to Work Transitions Program has successfully worked

In today’s job market, job preparedness is vitally important, especially for youths with developmental disabilities, many of whom will not attend college and usually seek jobs directly out of high school. Since 1978, GWArc and Waltham Public Schools have worked together to provide career counseling, vocational education, job training and job placement to students with developmental disabilities. The program has evolved to include students with a wide variety of learning challenges. School to Work Transitions serves students from age 14 until they turn 22. Part- and full- time program services are available year round, including summer programming. The program serves approximately 40 students at Waltham High School annually. Through a combination of classroom curriculum, supported employment, volunteer and job shadowing experience, School to Work Transitions assists students in developing life and vocational skills, assessing life choices, exploring career possibilities, gaining work experience, and finding jobs. A Career Skills Building Class, taught by GWArc’s Transitions Manager, focuses on interview skills, appropriate work attire, job hunting, time management continued on page 25

The Arc of Massachusetts

News from the chapters of The Arc

Meet Sam Freitas By Cameren Cabeceiras – Resource Center/Autism Now Center Coordinator

The Arc of Bristol County’s Fall River branch since joining in the autumn of 2016. He is very sociable at the ANC, often the one making others laugh by means of jokes, antics, and dance moves. It’s clear upon meeting him that he doesn’t much care what you or others think – he follows his heart, he does what he likes, and he does it well. Sam Freitas

I would like to introduce you to an extraordinary individual. Samuel Freitas is an 18-year-old young man currently enrolled at Bristol Community College. He is an excellent student and always has been. During his time at Westport High School, he was an integral member of the writing staff for the school’s paper, The Villager. Sam is also active in his community, having volunteered for the South Coast Basket Brigade as well as the Westport High School Memorial Garden. An incredibly polite, intelligent, sweet, and funny individual, he has become a staple of the Autism Now Center (ANC) at

Sam has a passion for a world he has created on his own, and it began when he made a single mask out of construction paper three years ago. Over time, one mask became 150 masks, and from these faces he designed and developed complex characters. Early on, he authored and illustrated several large books depicting the adventures these characters shared with each other. After making these rudimentary books utilizing crayon and pencil, he taught himself to use Adobe to construct these characters digitally on the computer. He has since made ten printed children’s books. Each story revolves around a central theme focusing on teaching children

concepts they will need to be successful in their daily lives, such as manners, safety, and individuality. The name Sam chose for his new world? Freitasia. Prior to beginning his work at the Autism Now Center, Sam had created a fan club for Freitasia that operated exclusively by word of mouth and paper fan club cards. With a little help from me, Sam has taken his magical world online, the Freitasia Fan Club can now be found on Facebook at www. Give the page a “Like” and you’re officially a Freitasia Fan Club member. The page currently has about 75 Likes, but Sam has maintained his goal of 5,000 Likes. In the future, he says, the sky is the limit for his brand: books, a television show, movies … anything is possible. Sam is a young man that I am happy to be able to work with. If you find yourself having a bad day and need a good laugh or a refreshing take on life, hang out with Sam for just a small while and I personally guarantee that your day will change for the better.

GWArc receives $5,000 grant from Foundation cont’d from p. 24 skills, and assessing skills or education required for various jobs. Guest speakers are invited to discuss what they look for when hiring employees. Grant funds will be used to increase the number of group career exploration trips to allow students to see a broad range of job sites and jobs in action, and for transportation

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to job interviews and job shadowing opportunities. Funds will also be used to provide small stipends to selected students so that they can accept unpaid internships/volunteer positions rather than be paid by employers, thereby increasing the work opportunities available to students. Paid jobs can be

hard to find and our students often compete with candidates who do not have a disability. We are grateful to the Foundation for MetroWest and the Youth in Philanthropy Program for supporting our critically important School to Work Transitions Program.


News from the chapters of The Arc

LifeLinks, Inc. Medically Complex Program turns 20! Michael’s father, was the donor), and has an array of other medical issues.

Michael, Eileen and Philip Lee

Twenty years ago, there was very little hope of receiving services within your community if you had a medically complex child. Issues with flexible support, resources for families with children who have complex medical and cognitive needs are now a thing of the past because of people like Eileen Lee, Lifelinks Inc. Medically Complex Children’s Care Coordinator. Eileen, who celebrated twenty years at Lifelinks, Inc. this past April, has been there to help families and their children enhance their quality of life in the home and in the community. As Eileen reflects over the last 20 years, when she first became affiliated with LifeLinks Inc. she thinks of her son, Michael who was born premature, has intellectual disabilities, had a kidney transplant (for which Philip Lee,


From the day her son was born, she made the decision to care for him at home. With the daunting combination of medical problems, she realized that services were at a minimum and from everything from finding the right school, the right nurse, and the right medical equipment she had to fight to overcome every challenge and obstacle she and her son faced. While advocating for her son, Eileen was invited to a Leadership Series with Massachusetts Families Organizing for Change (MFOFC), a grassroots group of parents, that met for three weekends to learn about how parents could advocate in their community and with their legislators to help parents take care of their children. Eileen -- being a resourceful advocate and a driving force in bringing families together -- many years ago was invited by the Regional Family Support Director from DDS to sit on parent panels to listen in on Requests for Response proposals and connect with other

families. Having that connection with DDS, she was invited to join a committee to facilitate a new pilot program. This pilot was a family-driven model of care which supports families with children and young adults having significant cognitive, physical and complex health care needs. The goal of the DDS RFR was to provide comprehensive wraparound supports, which consist of specialized case management activities that help families integrate the variety of resources and supports they are receiving in order to care for their family member at home. She has been with this program and with LifeLinks since its inception in 1997 and has never looked back. With the support of LifeLinks she has created a coalition of remarkable families who meet monthly. With all of the good that has come out of this program, obstacles still remain. Some of the children are aging out and Medically Complex children are turning 22 years old. For the future she would like to see the program continue, but feels more advocacy is always needed. A respite program for temporary needs of the parent or family and more skilled nursing in the home would be of great help. If it is up to Eileen to solve these problems, she will find a way to take care of it. She does this for her families and she does this for her son.

The Arc of Massachusetts

News from the chapters of The Arc

Minute Man Arc awarded $100,000 Cummings Foundation grant Minute Man Arc has received a grant of $100,000 through Cummings Foundation’s “$100K for 100” program. The Concordbased Arc organization was chosen from a total of 549 applicants during a competitive review process that ultimately awarded 100 grants to local nonprofits. Representing Minute Man Arc, CEO Jean Goldsberry joined 300 other guests at a reception at TradeCenter 128 in Woburn to celebrate the $10 million infusion into Greater Boston’s nonprofit sector. With the conclusion of this grant cycle, Cummings Foundation has now awarded more than $170 million to local nonprofits alone. “This transformative grant will enable Minute Man Arc to establish a pediatric therapy program, but more importantly it will improve the lives of the children and families who will have access to these critical services,” said Jean A. Goldsberry, CEO. For nearly 60 years, Minute Man Arc has provided life changing support to children and adults with developmental and intellectual disabilities. With an infusion of $100,000 in grant funding, Minute Man Arc will launch a Pediatric Therapy Program for children aged three to eight who will benefit from

Achieve with us.

Minute Man Arc’s Self Advocates applaud the Cummings Foundation for their generous grant of $100,000. L-R Mary Blauvelt, Jeanne Fitzgerald, Christina Kakis

physical therapy, occupational therapy, feeding assistance, and socialization support. This initiative will build upon the agency’s highly acclaimed Early Intervention Program for children from birth to age three. The $100K for 100 program supports nonprofits that are not only based in but also primarily serve Middlesex, Essex, and Suffolk counties. This year, the program is benefiting 35 different cities and towns within the Commonwealth. Through this place-based initiative, Cummings Foundation aims to give back in the area where it owns commercial buildings, all of

which are managed, at no cost to the Foundation, by its affiliate Cummings Properties. Founded in 1970 by Bill Cummings of Winchester, the Woburn-based commercial real estate firm leases and manages more than 10 million square feet of space, the majority of which exclusively benefits the Foundation. “Nonprofit organizations like Minute Man Arc are vital to the local communities where our colleagues and clients live and work,” said Joel Swets, Cummings Foundation’s executive director. “We are delighted to invest in their efforts.”


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217 South Street Waltham, MA 02453 (781) 891-6270

Achieve with us. The Arc of the South Shore collaborates on library accessibility project The Autism Resource Center of The Arc of the South Shore was part of a recent collaboration with The Paul Pratt Memorial Library (PPML) and The May Center to develop a plan to make their library accessible to those with disabilities, in particular, individuals and families affected by Autism Spectrum Disorders. This initiative was part of a $10,000 “Equal Access for All” grant awarded to the Cohasset library to design and implement a program with frameworks to be replicated throughout Massachusetts. The collaboration resulted in a presentation at the Massachusetts Library Association’s Annual Conference on May 24th titled: “Serving Library Patrons with Autism Spectrum Disorders (ASD): A Blueprint for Innovative & Practical Solutions.” Members of The Autism Resource served on a distinguished panel to provide insight and share


best practices. Members of the Massachusetts Library Association learned how the accessibility plan developed for PPML for serving individuals with ASD could be replicated at their libraries. The Americans with Disabilities Act of 1990 established a critically important mandate that all citizens should be treated equally and be provided with equal access to facilities, institutions, programs and services. Libraries have always prioritized equitable service to all citizens as a core mission, and the rapid development of accessible technologies is helping libraries more fully carry out this mission. Jackie Rafferty, the director of the Paul Pratt Memorial Library said, “We have always been dedicated to ensuring that people of all ages and abilities are able to fully use our library, but we now know that we can do much more. Anyone interested in learning

List of Advertisers The Arc of South Norfolk Berkshire County Arc FletcherTilton PC Ivy Street School 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. more is encouraged to contact Gayle Walsh, Reference & Adult Programs Librarian (, who is managing implementation of Equal Access for All. The Arc of the South Shore is proud to be part of such an important and exciting endeavor and looks forward to continued collaborations and accessibility program development with local libraries.

The Arc of Massachusetts

Advocate Summer 2017