The number of workers with intellectual and developmental disabilities integrated into the workforce has largely plateaued in the past year, and the national turnover rate for those providing direct support for such people is nearing 45 percent, according to a Thursday report from the ANCOR Foundation and United Cerebral Palsy (UCP).
The groups’ 2020 edition of their Case for Inclusion report, exclusively provided to The Hill, found that the percentage of people with intellectual and developmental disabilities (I/DD) in integrated employment — that is, those working alongside abled people and earning market-driven wages — increased only 1 percentage point to 20 percent over the past year.
The report found that nationwide, 127,000 people with I/DD worked in competitive employment, compared to 124,000 the year before. The number of states with at least one third of I/DD residents participating in competitive employment increased from seven in 2019 to 10 in the most recent report.
However, the report also found the total number of people with I/DD on waiting lists for home- and community-based services increased by 49,000 in the past year, reaching 473,000. Waiting lists shrunk in 10 states but grew in 23.
The number of people with I/DD engaged in self-direction, or making their own decisions on some or all of the services or supports they receive, increased 2 points from fiscal 2017 to fiscal 2018, to 13 percent, according to the report.
The turnover rate for people in direct support roles comes in high, at 43.8 percent, which the report's authors attributed to low median hourly pay for such providers, $12.09 nationally.
“This report has some minor encouragement, not anywhere near the kind of encouragement we were hoping to see,” ANCOR CEO Barbara Merrill told The Hill, adding that the workforce issues were one of the most troubling aspects.
“I/DD services are funded by Medicaid and Medicaid rates are not set by the federal government, so providers are price takers, they’re not price setters, so where they have this enormous workforce crisis, it is directly due to an inadequacy of rates coupled with or exacerbated by a very tight labor market,” she added.
The latest addition, she noted, is the first time the report has included workforce data for support workers.
“What’s really significant is that this is a space where services are highly reliant on individualized services,” she said. “In order to have people really be able to be part of their communities … you’ve got to have staff and the report just shines a light on the fact that we are incredibly short.”
“[Direct support professionals] do suffer from a lot of burnout,” said Nick Smith with Spin, Inc., a Philadelphia-based support professionals for autistic and developmentally disabled people, who added that while the work is rewarding, “I have a lot of coworkers that would love to work one job but they unfortunately can’t make ends meet.”
Smith told The Hill giving direct support professionals (DSP) the resources and benefits they need to prevent turnover is especially important considering the role they play in integrating people with I/DD.
“We do so much in the community for different people that we support …we’re friends, some of us are family, we’re supporting the whole arc of life, some individuals are getting jobs for the first time,” he said. “As a DSP, you become part of their lives totally … there’s so much work that DSPs do.”
“[DSPs] are very important to me, they’re like family for me,” Lauren Nielsen, who lives in a Spin-supported home, told The Hill. “They help me with my needs and wants and to accomplish my goals. They help me with my everyday life and doing things I like to do.”
Merill noted that the workforce crisis is of particular importance with the report coming out just ahead of the 30th anniversary of the landmark Americans with Disabilities Act (ADA).
“Looking at the report through that prism, we still have half a million people [with I/DD] in this country and their family who are waiting for services… that’s a wakeup call, that’s the very urgent clarion call of this report and I think it makes it really clear that the workforce shortage is the barrier in terms of reality to the ADA,” she said.