‘Tsunami’ of unmet care needs for adults with autism has hit Mass.
I am the mother of a 37-year-old woman with autism and significant behavioral challenges. She is now home 24/7 with me and my husband.
Besides group home crisis, day habilitation services are also strained
Thank you to Liz Kowalczyk and the Globe Spotlight Team for their article about children and adults with autism spectrum disorder and safety issues in group homes (“Families confront system in turmoil,” Page A1, Dec. 31, 2023). The information presented in the article was horrifying but not surprising. Unfortunately, the concerns about services for adults do not end there. Individuals with autism will leave school settings and transition to the adult service section of the Department of Developmental Services. Many may seek services from a day habilitation program.
I was the program coordinator for 29 years at Community Autism Resources, which served Southeastern Massachusetts and was funded primarily by DDS. I had many conversations with families about differences between the service models from school-age years to adulthood.
I am also the mother of a 37year-old woman with autism and significant behavioral challenges. My husband and I have managed to keep my daughter at home. She attended a dayhab program for 12 years and was receiving 25 hours of service there per week. About seven weeks ago, we were notified that this agency with more than 800 employees, an autism division, and a behavioral services division could no longer handle our daughter, and she was “discharged” from dayhab services.
She is now home 24/7 with me and my husband, who are each approaching 70 years of age, and until the system changes, there seems to be nothing available for her or us. DDS and its vendors need to do a better job.
PATRICIA LEONARD-TOOMEY
Fall River
State has not had a handle on housing needs of kids moving to adulthood
Liz Kowalczyk’s Spotlight follow-up article speaks to the dramatic need for housing for autistic adults.
The numbers the state is coping with in serving the thousands of children with autism who are becoming adults could have been predicted by extrapolating from existing special education data, but the state failed to do so. Indeed, the nonprofit organization Autism Housing Pathways did such an analysis in 2017, and it estimated that 1,345 Massachusetts 17-year-olds would be receiving special education on the basis of an autism diagnosis in 2023, rising to almost 1,475 in 2025. Based on statewide surveys undertaken by AHP, about 15 percent of young adults with autism are likely to qualify for a group home placement through the Department of Developmental Services at age 22, equivalent to more than 200 people a year turning 22 and needing a group home placement.
An additional AHP analysis, extrapolating from US Centers for Disease Control and Prevention autism incidence data, estimated that demand for supportive housing for people with autism in Massachusetts who do not require a group home level of support would be more than 600 units per year.
The autism “tsunami,” as one stakeholder put it in Kowalczyk’s article, is real, and it affects not just DDS but also the overall demand for affordable and subsidized housing.
CATHERINE BOYLE
President
Autism Housing Pathways Winchester
There is a way forward for supportive housing if state steps up with funding
For those of us who work on the front lines of the housing crisis, the article “Families confront system in turmoil” came as no surprise. It exemplified another vulnerable population caught up in a crisis that seems to have no end.
But this article struck this reader as different.
The state of Massachusetts already has a supportive housing program that’s working for many families with adult children with autism, and the state has the ability to scale the model to better meet demand. It’s not a particularly complicated program either. Housing, made affordable thanks to federal or state rental subsidies, is being paired with daily supportive services and support through a little-known MassHealth program with a curious name — the Group Adult Foster Care program — to provide supported housing to 70 disabled adults in four towns outside of Boston. This basic approach has allowed the organization I lead to provide safe, stable, and service-enriched housing for hundreds of adults living with a range of disabilities, including autism, over the last decade.
The only barrier to rolling it out across Massachusetts is the political will to fully and properly fund these existing housing and service programs. Do we have the will to tackle this issue? It remains to be seen. Do we have a model that would allow us to solve this problem in the next five to 10 years? We do.
LARRY OAKS
President
Mainstay Supportive Housing and Homecare Newton