25 Investigates: State responds to ‘gap’ in care for adults with disabilities

It was a big weekend for Daniel Smith of Westford. He celebrated a birthday and graduated from Hopeful Journeys, a special education school in Beverly.

Daniel has autism and severe intellectual disabilities. The town of Westford has paid for his education and other services since he was 3 years old, but his funding ended Saturday when he turned 22, as required by Massachusetts law.

Gretchen Connors, Daniel’s mom, said she had been preparing to transition Daniel to the Massachusetts Department of Developmental Services (DDS) since he was approved for adult services 18 months ago.

Instead of sending him to a group home or day program, Connors chose to direct Daniel’s care and activities from home using DDS’s Participant Directed Program (PDP). PDP provides Connors with a modest budget to hire part-time help to care for Daniel and manage his activities while she works as a nanny.

“I think the self-directed model best fits Daniel, to leave him in an environment that he’s used to, routine and consistency and being able to use the skills that he has,” Connors said.

Connors said she was preparing to submit the names of caregivers she secured for Daniel when she received an email from DDS notifying her of a “freeze on new enrollments”.

Connors said Daniel requires a schedule and structure to thrive and a freeze would limit his development and her ability to work.

“We’re anticipating Daniel’s struggling and then we’re struggling because, you know, none of us want to lose our jobs through this whole process. We can’t afford that,” Connors said.

The pause in new enrollments is the result of DDS switching payroll providers. The outgoing vendor stopped signing up new candidates on November 29thand the new vendor will not be ready to process them until 2 days before Christmas.

Maura Sullivan is the Chief Executive Officer of The Arc of Massachusetts, the leading advocacy group for people with disabilities in Massachusetts. She said it’s already a struggle for families to find help due to a workforce shortage and gaps in care can be detrimental.

“We can see more mental health issues. Families feel isolated. Parents often need to leave their jobs to do the caregiving,” Sullivan said.

Sullivan said she had been made aware of the enrollment pause and the ARC had spoken to DDS about it.

25 Investigates reached out to DDS on Monday, December 9 with 5 questions about the enrollment freeze. A spokesperson responded late Friday evening, 2 days after our deadline.

“DDS has resolved this issue, and no clients should have their services impacted. DDS will continue to handle cases as they arise so that families feel supported throughout the process and individuals receive the care they need,” an agency spokesperson said.

DDS said it’s working with families to find alternative funding sources until new enrollments can be processed again.

That’s exactly what the agency did for Gretchen Connors. Connors received a check Monday, December 16, more than a week after she first spoke to 25 investigates, that will allow her to pay for 25 hours of care for Daniel a week, for the next 3 weeks. Connors said she was told she will continue to receive the payments until she can enroll Daniel’s caregivers with the new payroll provider.

There are approximately 2,000 people who rely on DDS’s payroll provider. The agency said it has already transitioned 80% of them to the new vendor and the approximately 258 left are expected to be enrolled by mid-January.

“Very pleased that there is follow through, hopeful it stays that way,” Connors said to 25 Investigates Monday, after receiving the check from the state.

This is a developing story. Check back for updates as more information becomes available.

Download the FREE Boston 25 News app for breaking news alerts.

Follow Boston 25 News on Facebook and Twitter. | Watch Boston 25 News NOW