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.
Tony Thomas at Crain's Cleveland Business:
Welcome House, along with over 200 nonprofit organizations across the state, are seeking the help of Gov. Mike DeWine and our Ohio state legislators by asking for a permanent increase in Medicaid funding so that we can invest in increasing what we're able to pay our direct support staff.
To put it in perspective, we're down 80 staff members this year. And let's be honest, the work we do is not easy — our DSPs are responsible for tasks like cooking and cleaning, medication adherence, even dressing and assisting individuals with personal hygiene. Shifts include early mornings, overnights and weekends. Some days are happy, many days are tough, but regardless of the situation, we are in constant need of caring, qualified staff to provide the support the individuals we serve deserve (and frankly, can't live without).
This is made even more difficult by the fact that we're only able to offer $12 per hour. It's near impossible to find qualified, dedicated staff when a more comfortable job at a big-box retailer or chain coffee shop pays almost double. Not being able to pay our staff an adequate wage means we must turn down families and individuals in desperate need of our services.
It’s hard to quantify the shortage of these workers because of poor data collection at the federal and state level.
One way to get a scope of the issue locally is to compare the hours of service people have been approved to receive through North Carolina’s Medicaid Innovations Waiver — for people who have disabilities that require a significant level of care — to the number of hours the state actually pays for.
Of all the services authorized between 2019 and 2021, just about 79 percent of the available dollars were paid out, according to data that was obtained by North Carolina Health News through a public records request.
That doesn’t mean 79 percent of people got services, or that everyone got 79 percent of the services they needed. Some people likely received all of their hours while others got nothing, but the data lacks these details.
For all this, direct service providers get paid about $11.50 an hour on average, according to a pay study conducted by policy workers and advocates in the state. The wage has only risen about two dollars since 1998, when a study by researchers at UNC Charlotte found the average pay to be about $9.13 an hour.
“That is abysmal,” said Pat Porter, who is currently working on the pay study and serves as a policy adviser for the state legislature. She also headed up the developmental disabilities division within the state’s health department for nearly 15 years. “It is certainly not a living wage.”
Surveys of the service provider workforce have found that the job is primarily done by young women of color, especially immigrants, without college degrees. Advocates argue that’s a reason wages have remained so low for so long.