Leo’s Letter: Recommendations on Addressing Assistance Needs for Adults and Turning 22

Last week, I noted that an estimated 5,000 individuals who typically receive community day supports (who either already received them or recently turned 22 years old) have not been able to obtain adequate assistance. This is not due to funding but to the lack of workers. We continue our efforts at information gathering and sharing recommendations this week and next Monday. More information follows.

On Monday, November 8, we began with some information and slides (the sharing of information is further below and in the copy of the PowerPoint slides from Monday [Nov. 8 session.])

We reviewed Cathy Boyle’s four major points on this topic from previous advocacy efforts.

  1. There need to be alternatives to the current system that are flexible and allow people to pay as they go to an array of vendors, including for virtual options.
  2. Alternatives should not be a function of the setting where the person lives.
  3. The individual’s budget should not be reduced if they choose to participate in alternatives.
  4. Options that permit parents to work outside the home need to be preserved.

We divided into 3 breakout rooms based on DDS Regions and came back to discuss.

  1. Group 1: Central/Northeast (led by Leo)
  2. Group 2: Metro (led by Maura)
  3. Group 3: Southeast (led by Kathleen)

Upcoming Sessions

  • We have a special session planned for Friday, November 12 from 12:00-1:00PM. We will go into breakout rooms for almost the entire session. Registration is not required for this session. Access the session via this link on Friday.

Summary of Feedback from the Three Breakout Rooms

  • Gaps overall but those without DDS eligibility face significant barriers to addressing assistance needed
  • Difficulties of aging parents and full-time working parents supporting their child.
  • Those with Behavioral challenges have had more difficulty getting back to their program.
  • One group had a story on still working hard to be creative while experiencing a gap in services.
  • One parent (Marilyn) shared how the Day Hab that her daughter goes to doesn’t encourage any family connections, doesn’t communicate when daughter comes home with a situation (lunch not eaten, wet clothes…), and unlike feeling part of a team in school years, she feels that family opinion is not valued at all.
  • Another parent (Lucie) recommended in such situations to talk to the area office (although not overseeing Day Habs technically, they are a referral source); if that doesn’t work, best to look for a better Day Hab situation.
  • Another noted that the only option for a family member right now is 35 miles away.
  • Additionally, DDS said it takes too long to shift money from AwC to PDP although the family has found staff on their own and now realizes they can maximize the support during this gap period with the PDP.
  • Another individual was not DDS eligible and had no autism diagnosis. She has very little supports, can only work about 20 hours per week, and MRC has been involved but closed the case now. No employment supports.
  • Another individual is medically complex – but cognitively fewer support needs. Doesn’t think Day Hab is the right fit but agency with choice is a full-time job with the turnover of staff and no matter what she can NOT find nurses that can do the hours. Plus, MassHealth assesses nursing hours in a way that does not make sense for supports in the community.
  • Another parent saw no differences between under 22 and post 22. Not a part of the team, not a valued voice, no communication about day-to-day and important issues…
  • Donna K. knows of a person with behavioral supports who is stuck at home and unable to attend the day program because there is no appropriate support staff. Self-Direction is going well for Donna’s son. For the first situation, it’s a catch 22.
  • Several talked about social regression. Yes, there may be some options for shopping or other outside activities, but no social connections. Laurie tried to ask the provider for names and Facebook groups to no availability.
  • Some things working: Zoom programming – such as OT, PT working well in “NET” Natural Environmental Settings. i.e., in the home. Good experiences with Transitional community college – specific reference to 4C’s on Cape Cod.


  • On social: offer your email address as a contact and ask the program to share with families whose son or daughter may have been in the day program with your son or daughter.
  • Also, approach your Family Support Center (FSC) to help with this. Ask your FSC for the types of help you need.
  • Dianne: Get involved with the citizen advocacy board. Most need members. Volunteer to help and while helping, get to know DDS and other volunteers.
  • The MPTE Facebook group, which continues, may be a good connection.
  • Heather: Could there be a new specialization within agencies/family support to coordinate more socialization groups?
  • Lucie C.: You must push yourself to make Day Hab hear you. Get a notebook going back and forth to communicate.

Session One Replay

Session Two Replay

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