In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. One is a shortage of caregivers, which is likely to get worse.
By 2020, the U.S. Department of Health and Human Services estimates that the equivalent of 1.2 million full-time DSPs will be needed to care for 1.4 million Americans with developmental disabilities needing residential, vocational and other supports. And the U.S. Bureau of Labor Statistics has projected that "home health care" and "personal care aides" will be two of the three fastest-growing occupations in the country between now and 2024.
The work can be physically demanding and emotionally challenging, and requires extensive skills and ongoing training. But these workers rarely receive benefits like insurance, sick leave, and paid time off.
The state sets the rates that support professionals are paid via the waivers. In Pennsylvania, it equates to an average $11.17 an hour. That's roughly half of what MIT has determined to be a living wage here for a family of two, points out Kathy Brown McHale, CEO of Special People in the Northeast Inc. (SPIN), a local provider of services to people with intellectual disability and autism.
And it frustrates Maureen Devaney, mother of an intellectually disabled daughter and cofounder of Vision for Equality, an advocacy group for individuals with disabilities and the loved ones who care about them.
DSPs, she says, "are devalued people caring for devalued people. Their work is hard and they're paid so little. After a while even the most dedicated ones think about leaving."