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.
Sandi Shaffer lost her house because her daughter is disabled.
That sentence should make every politician in Pennsylvania sick. It represents a catastrophic failure of the commonwealth’s services for those with intellectual disabilities and autism (ID/A) — services it is bound by law, not to mention basic human dignity, to provide.
The catastrophe is ongoing, and worsening every day.
According to the state, there are about 58,000 people with ID/A currently receiving services from direct support professionals (DSPs) across Pennsylvania. Some of these people only require infrequent check-ins with their care providers, but others — about 12,000 — are getting intensive support in the day-to-day business of staying safe, clean and healthy.
But due to chronic underfunding, exacerbated by the coronavirus pandemic, 6,500 Pennsylvanians with ID/A have lost services in the past 18 months. And 12,000 are on a waiting list — an interminable queue from hell that seems, to families who are on it, like an elaborate and cruel joke.
Of those on that eternal list, 5,000 have an emergency need. But there are no DSPs to care for them.
That’s where Ms. Shaffer and her daughter, Kate, find themselves. Kate, who is non-verbal and requires 24/7 supervision, graduated from the Children’s Institute of Pittsburgh in 2017. She has been on a waiting list for a state-funded DSP for 16 years.
Ms. Shaffer lost her full-time job because she couldn’t be in two places — at work and with her daughter — at once. She couldn’t keep up on her mortgage. She now rents in Westmoreland County, holds down two part-time jobs, cobbles together care for Kate during the hours she can’t be present and cares for Kate when she is present — all while also caring for her elderly mother.