Leo’s Letter: Fulfilling The Unfulfilled Promise Of Community

Our community and The Arc have had an unbelievable week.

On Tuesday, March 3, Governor Baker welcomed the Chan and Joyce families along with others to his office for the ceremonial signing of Nicky’s Law.

On Wednesday, March 4, we saw well over 400 people join us at our joint reception with MDDC, honoring Representative Aaron Michlewitz and Senator Patrick O’Connor!

Senate President Spilka and Speaker DeLeo, who are both part of our community in so many ways, helped us recognize these leaders, and Governor Baker was well represented by DDS Commissioner Jane Ryder who spoke. Many other administration officials were in attendance, including AnF Secretary Heffernan, HHS Undersecretary Mick, MRC Comm. Wolf, MOD Director McCauley, and DPPC Director Alterio.

Senators and representatives joined us from across the state, and the messages from our awardees moved the audience. Not least of all was the personal story shared by Ryan Horrigan, a 25-year old with autism who is going places!

I stole some lines from Representative Garlick in my call to action, including her remark that “the promise of community is unfulfilled” for persons with disabilities. That promise is partly deferred due to societal bias, which Ryan touched on in his talk concerning bias in employment and other social scenarios.

Indirectly, that sets the foundation for the rise of 30% in abuse reports referred to the DA’s offices in our state; the sometimes extreme vacancies in staffing (80% for one family, 70% for a community provider in one of its homes); and a beginning pay rate only 5.9% above minimum wage.

But we also see progress – because we have policy makers who fight the bias by enacting laws and budgets which make a difference, and have done so since 2016 (inclusive of FY’21 H2 recommendations):

  1. We’ve seen a 46% rise in Family support (includes DESE-DDS).
  2. We’ve received a 223% increase in combined Turning 22 and Autism Omnibus for adults.
  3. On March 4, 2020, the FDA announced a ban of electrical stimulation devices for complex behaviors (a 30-plus years long battle of advocates).

Despite this promise remaining unfulfilled, progress toward fulfilling that promise continues.

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