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A significantly higher percentage of individuals with complex behavioral or medical conditions are likely NOT to have day services as the workforce crisis continues than those who currently do have services. Their families and other caregivers are more likely to be providing 24/7 support. They are waiting along with others who may be less isolated due to needing less assistance. We wait with them, too.

John and Karen (not their real names) are two of these individuals. I picked them because they both have sisters either advocating for them or being one of their primary caregivers.

And they have been waiting 789 days and we’re still counting.

John is barely older than 22 years while Karen is over 50 years. Both have needs for significant 24/7 assistance in daily living, and yet, both can only depend on family.

When John turned 22, he and his family found no options for day services or anything else that could substantially assist him and them. Their please for help were not fruitful. John recently was able to have a support broker assist him and his family to advocate thanks to funding support from the Flutie Foundation.

Karen had lived in a group home, but her sister brought her to her home due to her underlying medical conditions. By the time that Karen could return to the home, the staffing situation had become more severe. She is now hoping to get in-home assistance for the near future working with the DDS area office and a provider. But throughout the COVID period and last few months, she provided caregiving without significant assistance.

I want to share some of our efforts this year which reflect our work on behalf of ALL our constituents and especially this sub-group which is inequitably underserved!

  • Advocacy which resulted in $70 million more in funding in the House budget for day, transportation, and other supports which would help more than 2,000 people get back to day services.
  • Advocating for our state agency to conduct more regular outreach to those who are isolated and still at home.
  • Fighting for increased rates in DDS and MassHealth services so staffing pay benchmarks rise.
    • EOHHS announced a significant increase in the day habilitation rate.
    • The Arc revised workforce bill now with ADDP support will be filed in January with the new session.
    • The Arc continues to advocate for higher Chapter 257 increases.
  • Fighting for flexibilities in funding so families can get relief and to lessen individuals’ isolation.
    • House budget included a bridge for new day model.
    • Senate budget includes flexibilities across line items so family support can be utilized as needed.
  • Bills which focus on those who are isolated and/or need more supports:
    • Allowing Cueing and Prompting in personal assistance; we also recruited a graduate student to update fact sheets and revitalize strategy.
    • Abuse registry expansion.
    • Tommy’s Law.
    • Hospital training and Operation House Call.
    • Accessory Housing.
    • ABA bill to authorize MassHealth payment for adult services (applied behavioral analysis)

The history of The Arc during COVID and over the decades reflects ongoing advocacy, such as the Boulet and Rolland settlements resulting in thousands of new 24/7 housing opportunities.

But our advocacy, and our voices together, now need to be louder than ever.

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