Massachusetts Unprepared to Care for Thousands of Autistic Young Adults

Thousands of autistic children in Massachusetts are reportedly now transitioning into adulthood, and those, who have been diagnosed with severe forms of neurological dysfunction, will experience even more challenges as they get older. Parents, health professionals and child health advocacy groups have warned for years that there will eventually be a growing demand for lifetime care for autistic adults.¹

Massachusetts’ group home system for adults is already facing staffing issues and allegations of abuse and neglect, making the state unprepared to care for the new influx of autistic adults.

It is estimated that in 2023, more than 1,430 individuals with neurological disabilities and special needs turned 22 years old, an age which qualifies them for adult services with the Massachusetts Department of Developmental Services. This figure is double what it was a decade ago and is being attributed to the significant increase in children developing autism.²

Michael Borr, the parent of an adult son with autism and former chairman of Advocates for Autism of Massachusetts said:

There has been very little planning to prepare for this. I can go back to the speeches I made every year, and I would talk about the tsunami that is coming. It’s not coming any more; it’s here. We are in a crisis.³

Limited Housing for Autistic Adults in Massachusetts

In a 2022 report to the state legislature, officials in the Massachusetts Department of Developmental Services (DDS), which oversees private group homes for the disabled and manages its own group homes, made clear that the department is “extremely limited” in its ability to provide housing and services to autistic adults because they are “very different” from the traditional clients that the agency has historically been housing.

The DDS has typically provided housing to adults, who are intellectually disabled but do not have the same social and behavioral challenges adults with severe cases of autism have and, therefore, the department does not have staff with the specialized training need to provide those services to autistic adults. At present, the DDS pays for housing for 418 autistic adults living in group homes.⁴

A survey conducted by the Association of Developmental Disabilities Providers found that there were 4,000 job vacancies in group homes for adults in Massachusetts. A major factor contributing to the job vacancies is low pay ranging from $17 to $20 per hour, which is similar to wages for retail and fast food workers.

Catherine Boyle, a parent of an adult autistic son and a housing expert said:

We’ve got a screaming problem with staff who don’t have enough training. Guess what staff without enough training do? They quit. These huge vacancy rates are hitting at the same time the autism wave is hitting. The low pay feeds the problem of abuse and neglect because many agencies are still using temp agencies to staff residences or not getting the most qualified applicants.⁵

Future Economic Burden of Autism in the United States

According to a 2015 report published in the Journal of Autism and Developmental Disorders, the total economic costs to treat people with autism spectrum disorder (ASD) in 2015 was approximately $268 billion in the U.S. This figure included annual direct medical, non-medical and productivity costs combined. The report stated that this estimate is on par with estimates to treat diabetes and attention deficit hyperactivity disorder (ADHD) and exceeds the costs of treatment for stroke and hypertension.⁶

The report forecasted that the cost of autism spectrum disorders will increase to an estimated $461 billion by 2025 if current trends continue, which will cause serious social and economic problems for the nation. Paul Leigh, PhD, one of the author’s of the report and a health economist at the University of California-Davis Center for Healthcare Policy and Research stated in the report:

The burden of autism spectrum disorder is significant for 2015 but alarming for 2025 and, in our opinion, invites debate about policy responses. The first response is that research into the possible modifiable causes of autism spectrum disorder should become a priority as great as other major diseases; prevention is cheaper than cure or than improving the functioning of persons with autism spectrum disorder. If modifiable causes can be found, for example, a toxin, then another policy response would be to eliminate or reduce the amount of that toxin in the environment. A third response is a call for additional research into cost-effective treatments to improve functioning. The paucity of cost-effectiveness or cost-benefit studies is remarkable.⁷

---

If you would like to receive an e-mail notice of the most recent articles published in The Vaccine Reaction each week, click here.