It was a great weekend for Daniel Smith of Westford, Massachusetts. He celebrated his birthday and graduated from Hopeful Journeys, a special education school in Beverly. Daniel has autism and severe intellectual disabilities.
He has received education and other services from the local school system since he was three. Recently, that support ended when he turned 22. Public school support ends at 22 in Massachusetts.
Daniel’s mother, Gretchen Connors, said she had been prepared to transition him to the Massacehusetts Department of Developmental Services (DDS) since he had been approved for adult services 18 months ago. Instead of sending Daniel to a group home or day program, Connors chose to direct his care and activities from home through DDS’s Participant Directed Program (PDP). PDP gives Connors a limited income to hire part-time support to care for Daniel and handle 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 stated that she was about to submit the names of caregivers she found for Daniel when she received an email from DDS informing her of a “freeze on new enrollments”. Connors added that Daniel needs a schedule and structure to help him thrive and that a freeze would hinder 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 due to DDS switching payroll vendors. The exiting vendor stopped accepting new candidates on November 29th, and the incoming vendor will not be prepared to process them until two days before Christmas. Maura Sullivan is the CEO of The Arc of Massachusetts, Massachusetts’ foremost disability advocacy organization. She said it’s already difficult for families to get help because of a labor shortage, and gaps in care can be harmful.
“We can see more mental health issues. Families feel isolated.” Sullivan said. Sullivan added that parents frequently had to give up their jobs in order to care for their children. Sullivan stated that she was made aware of the enrollment pause, and that the ARC had communicated with DDS about it. 25 investigators contacted DDS on Monday, December 9, with five questions about the enrollment freeze. A representative responded late Friday evening, two days beyond the 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 is working with families to find other financing sources until new enrollments can be handled again. This is exactly what the agency did for Gretchen Connors. Connors received a check on Monday, December 16, more than a week after speaking with 25 investigators.
The check will pay for Daniel’s 25 hours of care per week for the following three weeks. According to Connors, she will continue to receive funding until she can enroll Daniel’s providers with the new payroll source. Approximately 2,000 people rely on DDS’ payroll provider. The agency stated that it has already moved 80% of them to the new vendor, with the remaining around 258 expected to enroll by mid-January.
Unfortunately, Connors isn’t alone. Many Massachusetts residents struggle to get the services they need. I’ve recently experienced similar challenges.
I’ve lived in Massachusetts since 2000. During childhood, I had access to a wide array of services, many of which were provided by my school district. As an adult, it has been more difficult for me to access services.
I began working with MassAbility which oversees vocational rehabilitation during my senior year of high school. Unfortunately, their services did not meet my expectations. It was challenging to contact the three counselors I worked with because of high staff turnover.
Last month, my mother suggested I contact them again. After filling out the application, I received an email the next day. The email said that it would take 35-40 days before they evaluated my application. I was nervous, but I figured I’d give it another try.
Disabled people across Massachusetts need access to services. Massachusetts has played a major role in the disability rights movement. Decades later, residents are still fighting for access to services.
Sources:
Chen, Xinni, and Katie B. Tian. “Disability Advocates Discuss History of Massachusetts Disability Institutions at Harvard Law School Panel.” The Harvard Crimson, Harvard University , 26 Oct. 2023, http://www.thecrimson.com/article/2023/10/26/disability-advocates-institutions/. 
Daniel, Ted. “25 Investigates: State Responds to ‘gap’ in Care for Adults with Disabilities.” Boston 25 News, Cox Media Group, 17 Dec. 2024, http://www.boston25news.com/news/25-investigates/25-investigates-state-responds-gap-care-adults-with-disabilities/TUCXGJC4ABEIJPKVT53WB3RGKY/.
Ray, Olivia. “Disability Commission Selects 2025 Priority.” WWLP, Nexstar Media Group, 11 Dec. 2024, http://www.wwlp.com/news/state-politics/disability-commission-selects-2025-priority/amp/.