May 3, 2018
Time To Get REV'd UP!
In March, we talked about "what will it take" to achieve an inclusive society. Maybe the word inclusive is not concrete enough. How about these?

What will it take...
  • For ALL educators to not see educating kids with disabilities as an additional burden?
  • For ALL first responders to appreciate we're all different?
  • For ALL medical professionals to see each individual and respond accordingly?
  • For ALL transportation to be fully accessible and available?
What will it take for our wider society to appreciate that we need a glide path so that individuals with disabilities can take advantage of opportunities that exist for others?

Being active as a citizen and voter is one way to increase the likelihood.

In that March letter, I mentioned Kathy Hoell, who has been regularly discouraged from voting. The REV-UP! Conference, hosted by the Disability Law Center, focuses on encouraging all people with disabilities and their families to vote. It will be held on May 18 from 10:00 AM to 3:00 PM with lunch and includes interesting guest speakers such as Commissioner Thomas Hicks of the U.S. Election Assistance Commission and Zach Baldwin of the American Association of People with Disabilities among others. May 11 is the deadline to register!

In the meantime, be sure to continue advocating for the bills and budget issues you care about. Stay informed by regularly visiting our website and  joining our community on Facebook.


Leo V. Sarkissian
Executive Director
Celebrating One Year of the Attainable Savings Plan
With the passage of the Achieving a Better Life Experience (ABLE) Act in 2014, Americans with disabilities now have the opportunity to save and invest in a tax-advantaged account for short and long-term disability related expenses, without risking their disability benefits. An ABLE account is a way to save that supplements, rather than replaces, your Medicaid and Supplemental Security Income (SSI) benefits. In May we celebrate the one year anniversary of the Massachusetts ABLE offering, The Attainable Savings Plan. Offered by MEFA and managed by Fidelity Investments, individuals can choose from various professionally managed investment portfolios, giving contributions a chance to grow tax-deferred and when used for qualified disability expenses are federal income tax-free. Learn more about Fidelity's ABLE plan at

Fidelity Brokerage Services LLC, Member NYSE, SIPC
900 Salem Street, Smithfield, RI 02917 

The Attainable Savings Plan is offered by the Massachusetts Educational Financing Authority and managed by Fidelity Investments. Qualified ABLE Programs offered by other states may provide state tax benefits to their residents or taxpayers that are not available through the Attainable Savings Plan. If you are not a resident of Massachusetts, you should consider whether 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 investment in the Attainable Savings Plan.
Units of the portfolios are municipal fund securities and are subject to market fluctuation and volatility. You may have a gain or loss when you sell your units.
Please carefully consider the Attainable Savings Plan's investment objectives, risks, charges, and expenses before investing. For this and other information, contact Fidelity for a free Disclosure Document or view one online. Read it carefully before you invest or send money.
In The News: Nicky's Law Covered on WCVB and Herald Radio
On Monday, April 30, WCVB 5 Investigates aired two features on the disabled abuse registry bill - a bill perhaps better known as Nicky's Law. The bill originated in the experiences of the Chan family, who have so bravely fought for justice and safety for their child and all individuals with I/DD. Nicky's Law would create a registry for DDS staffers who have been substantiated of abuse against a person with I/DD - and therefore, they would be unable to be hired in a new position, as so often is the unfortunate case.

WCVB's Karen Anderson interviewed the Chan family and the Joyce family for these features. She also sat down with our Executive Director, Leo Sarkissian, to get his perspective on the need for this vital piece of legislation. To watch these important news features, check out our recap post on The Arc of Massachusetts website.

On Tuesday, May 1, Leo followed up with a fifteen minute interview on Boston Herald Radio, going into further detail  about the need for legislation like Nicky's Law and just what the disabled abuse registry would entail. You can listen to Leo's interview here.
House of Representatives Budget Approved
Last week, the House of Representatives approved a $41.55 billion state budget for FY19 after four days in which nearly 1,400 budget amendments were considered and dispensed, with a little more than 500 amendments adopted in whole or in part, which added $79.6 million in additional spending. Although The Arc had 7 Representatives championing our amendments with dozens of others co-sponsoring, unfortunately, the Department of Developmental Services amendment requests did not get approved (except for 100k in the Day and Employment line item, specific to a camp in Natick and program in the North Shore).

Government Affairs at The Arc will now turn their focus to the Senate and advocate for these increases to cover shortfalls as the Senate moves into budget debates. For more information on the budget process and how to help, please contact Maura Sullivan at Also, some of The Arc's priority bills are coming to deadlines in their committees. If you haven't contacted your Rep or Senator to support The Arc's priority legislation, please check out our Take Action Page here.
Grassroots Advocacy Success Story: MAICEI Budget Increase
The House budget debates brought success for the Massachusetts Inclusive Concurrent Enrollment Initiative (MAICEI) amendment. On Monday, April 23, 2018, the House voted to increase the state budget for MAICEI, adding an additional $200,000. The total funding for MAICEI in the House Budget is now $1,581,916. This funding will help open doors to higher education for students with intellectual disabilities and autism.

Thank you to all of you who sent emails and letters and made calls to your legislators. The Arc worked closely with Mass Advocates for Children (MAC) to advocate for this funding. During the first two weeks of April, Brian Heffernan, former MAC Young Adult Fellow, and his mother Julie, one of The Arc's Becker Center Advocacy Coordinators, visited the offices of nineteen legislators to advocate for a MAICEI funding increase.  Julie shared basic facts and statistics about MAICEI and then Brian followed up with stories and a few pictures of his experience at MassBay Community College.

Many thanks to the legislative staff members who met with Brian and Julie, to Rep. Sean Garballey who sponsored the MAICEI budget amendment, and to the 60+ key legislators who co-sponsored it. The state Senate will vote next on the budget, so gear up to send some more emails and letters, to make some more calls, and to visit your state senators in person, if possible. Grassroots advocacy works!  
Senate Budget To Be Released May 9
Senator Karen Spilka
Chair, Senate Ways and Means Committee
The next step in the FY'19 state budget process will be the release of the Senate Ways and Means Committee budget on Wednesday May 9, 2018. The Arc staff is working closely with senators for their support of our key budget line items. Those items include more support for Family Support and Respite, DESE-DDS, Autism Children's Waiver, Community Day and Employment, Community Residential, Transportation and Autism Omnibus.

Over the past two years there has been increased funding for the Turning 22 line item to help meet existing needs. We anticipate that amendments will be needed, so we are reaching out to all so that you might contact your Senators for support. We are more than half way through this year's budget cycle, and through your advocacy, many budget gains in line items can be achieved. Check with The Arc's State Budget page for action steps you can take to reach your senator.
Maura's Report from Disability Policy Seminar 2018
The Arc US, along with other disability advocacy partners, hosted the annual Disability Policy Seminar in Washington DC from April 23-25. The Massachusetts delegation had great representation with The Arc of Mass, The Arc of Opportunity, and Lifelinks. Others in the delegation included the Children's Hospital Boston LEND (leadership education in neurodevelopmental disabilities) program, the Shriver Center LEND program, the Institute for Community Inclusion, and the Federation for Children with Special Needs.

The crowd of over 900 spent two days learning from inspiring speakers who helped illuminate the most salient advocacy issues that face our community. On the final day, the delegation made their way through 11 visits to our Massachusetts Legislators and their staff on Capitol Hill. The mix of parents, professionals, and self-advocates made for impactful meetings and strong commitments from our congressmen and women.
Advocacy and Storytelling on the Cape
On Monday evening, April 30, The Cape Cod Network hosted a free Advocacy and Storytelling Training at The Cape Space Conference Center in Hyannis. After attendees enjoyed a dinner of sandwiches, chips, and dessert, Leo Sarkissian, Executive Director of The Arc of Massachusetts, gave a presentation on the state budget process and DDS. Julie Heffernan of The Arc's Becker Center for Advocacy then spoke to families about how to use personal stories as tools for advocacy.

Many thanks to Rob Spongberg, Executive Director of The Arc of Cape Cod; Anne McManus, President and CEO of Latham Center; David Botting, President and CEO of Community Connections, Diane Enochs, Executive Director of Living Independently Forever; and Rosalie Edes, Executive Director of Cape Abilities, for organizing the event.  It was inspiring and energizing to see so many great organizations join forces for a common cause.  In the words of Anne McManus, "We view the evening as the beginning of a journey to get more parents involved as a power group. Last night was informative and a catalyst for the future."  
WHAT'S TRENDING Whatstrending
The Arc is helping to spead the word about a great new show for families of young children! "1, 2, 3, Grow!" is a program about early childhood development, sharing the typical milestones to expect in young children and what to do/where to go when concerned about a child. It is available in English, Spanish, Arabic, Chinese, Haitian-Creole, Portuguese, and Vietnamese, as well as an African American show. It will be shown on Boston Neighborhood Network TV, other local cable television stations, and on the 1, 2, 3, Grow! YouTube Channel starting this Wednesday, May 2. Visit the official "1, 2, 3, Grow!" website for more information.
Campers and Volunteers Needed!
PALS is an organization whose mission is to create immersive experiences for young adults with Down syndrome and their peers. Our summer program, Camp PALS, entails a week-long, sleepaway camp at college campuses across the country. This is their 15th year as an organization and their very first year at the Boston location at Stonehill College.

The session takes place July 1-7. PALS is looking for campers ages 12 - 30 to join them for our amazing week. Each camper is paired one-to-one with a volunteer counselor, often the start of a lasting friendship in addition to the bonding with the Camp PALS family as a whole. The programming for Camp PALS Boston includes karaoke, a semi-formal dance, PALS Olympics, and trips to Faneuil Hall and the Freedom Trail. You can get a glimpse into the Camp PALS experience here. For more information, please visit the official Camp PALS website.
Leo Live: Navigating MassHealth, ACOs, and More
Monday, May 7, 2018 | 12:30 PM

Visit The Arc of Massachusetts Facebook page at 12:30 PM on Monday to join Leo for a brief presentation on navigating new common issues relating to MassHealth changes, ACOs, specialists and PCPs, and more.
An Introduction to Key Aspects of Supported Decision Making
Michael Kendrick and Anna Krieger, Center for Public Representation
Monday, May 14, 2018 | 12:00 - 1:00 PM
FREE thanks to the Becker Center for Advocacy | Register today!

Individuals with disabilities, like all adults, should have the right to make their own decisions. They should be provided support and guidance rather than legal restrictions or guardianship. This webinar will provide an overview of Supported Decision Making - how it works and what the key elements are.
SPONSOR SPOTLIGHT sponsorspotlight
The Arc of Massachusetts  | (781) 891-6270 |