In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. One is a shortage of caregivers and direct support professionals, which is likely to get worse.
Families, adults with intellectual disabilities and autism, organizations that provide services, and disability advocates are witnessing the collapse of Pennsylvania's intellectual disability and autism (ID/A) system. Day programs have closed or scaled back services, at least 6,500 people have lost services in the past 18 months, and families are facing unemployment and financial ruin to stay home and care for adults with disabilities. The reason is clear: the payment rates set by the Department of Human Services have not kept pace with the cost of providing home and community-based services (HCBS), so provider organizations are unable to recruit, hire and retain Direct Support Professionals (DSPs) to work in these programs.
Members of the Pennsylvania General Assembly and Governor Wolf must work together to stop the collapse of the ID/A system that supports some of our most vulnerable families.
For the first time in my decades of family advocacy I am fielding distraught calls from families of people with intellectual disabilities who, after desperately waiting for years on the Office of Developmental Program's (ODP) waiting list, are now reporting that programs have no staff available to provide services for their loved ones. And as of Aug. 31, ODP reported that there are an additional 12,287 people with intellectual disabilities waiting for services and that 5,128 people have an emergency need for residential and day services.