For the roughly 159,000 Arizonans living with intellectual or developmental disabilities, having someone to help with everything from brushing their teeth to searching for a job is crucial, but direct support professionals, known in the industry as DSPs, are struggling.
Low wages, high turnover and chronic staff shortages plague the workforce, putting both caregivers and those they care for in a precarious position.
Valley resident Lynn Wasley is one of about 40,000 to 45,000 people with disabilities who receive services from Arizona’s long-term care system.
She said she has struggled to get consistent, quality support for more than a decade.
“This is definitely not a system that works,” Wasley said. “It’s a challenge, it’s a struggle. You have to fight for every service you receive.”
Wasley has multiple disabilities that make it hard for her to perform basic tasks or even leave her apartment, but she said finding and keeping a DSP can be a challenge and involves significant wait times.
“So I was on the phone with my caseworker crying, saying, ‘Are you guys not to blame?’ I was dying and I was trying to survive and now I can’t. I can’t even work because I don’t have a service provider. I can’t do anything because my basic needs aren’t being met.”
“We can barely pay more than the minimum wage.”
Recent survey data shows that workforce issues are causing provider agencies to close programs or shut down altogether.
Even in states without formal waiting lists, like Arizona, a lack of available providers and limited space in programs means many people are left stranded, sometimes for months, without the access they need.
“People may have to wait up to a year to get these important services,” Wasley said.
Kelly O’Toole is CEO of Opportunity Tree, an Arizona nonprofit and service provider focused on people with intellectual and developmental disabilities.
She said staff turnover had increased in recent years, blamed on chronically low pay that did not reflect the intensity of DSP’s work.
“They’re changing diapers, giving medicine, vocational training, it’s all sorts of things,” O’Toole said, “and they’re doing all of these things and we can barely pay them more than minimum wage.”
O’Toole said the reality is that many people are finding they can earn more working in fast food restaurants, without as much hard work.
Burnout is another issue that has only gotten worse since the pandemic began.
“Last year, we had so many vacant positions that it cost us $1 million in overtime,” O’Toole said, “and our people are exhausted. We have people working 80, 90 hours of overtime in a two-week period.”
But the pay rates are tied up in a complex state funding process and are paid primarily through Medicaid reimbursement.
“This is simply seen as a new expense for the state.”
John Myers, president of the Arizona Council of Developmental Disabilities Plans, said advocacy groups have been urging lawmakers for years to work with the state Department of Developmental Disabilities and the governor to raise DSP pay rates.
“We are literally facing a crisis,” Myers said, “and it’s not just in Arizona. I would say every state in the country has the same problem, because not one state has fully met their needs for investment in their DD service system.”
Still, he said it all comes down to how much Congress values investing in the well-being and dignity of people with disabilities.
“It’s being looked at as a cost,” Myers said. “It’s not being looked at as an investment. It’s just being looked at as a new expense to the state.”
Wasley said the lack of investment reflects how little society values the rights of disabled people to choose where and how they live.
“As a society, we’ve finally ended the era of institutions,” she said, “but we haven’t gone beyond that to create an inclusive society because we still don’t have access to the proper supports and housing of our choice. It’s like, you know, going down the path of family homes or group homes. So there’s not a lot of choice.”
Wasley said some days it’s hard to imagine any change will happen in the near future, or even in her lifetime.
“I get angry sometimes,” Wasley said, “usually just frustrated, but sometimes that turns to rage, sometimes to despair.”
But she said her stubbornness has allowed her to continue writing advocacy letters on issues she’s passionate about and finding ways to be active in the downtown Phoenix community.
“I understand the desire to not let anyone else go through the same struggles that you did,” Wasley said, “and I can only hope that if I continue, it will make life a better experience for others.”