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Direct support professionals help people with disabilities. Arizona has so few, it's a crisis

For the roughly 159,000 Arizonans living with an intellectual or developmental disability, having someone to help with things from teeth brushing to job hunting is vital. But direct support professionals — DSPs, as they’re known in the industry — are struggling.

Low wages, high turnover rates and chronic understaffing plague the workforce, leaving both caregivers and those they support in a precarious position.

Valley resident Lynn Wasley is one of roughly 40,000-45,000 people with disabilities receiving services from the Arizona Long Term Care System.

She said she’s struggled with getting consistent, quality support for over a decade.

“It definitely is not a system that works,” said Wasley. “It's challenging and it's a fight. You have to fight for every service that you receive.”

Wasley has a mix of disabilities she said make it difficult for her to do basic tasks or leave her apartment. But she said finding and keeping a DSP has been draining, and involves a lot of waiting.

“Basically, I was without somebody again for like another five months,” Wasley recalled. “When I was, like, crying on the phone with the caseworker, like, ‘Don't you guys have some accountability?’ Like, I'm — I'm dying, trying to live some sort of life and I'm not able now. Because I don't have a service provider, I can't even work. I can’t even do anything because my basic needs are not being met.”

'We can barely pay them above minimum wage'

Recent survey data shows that workforce issues are leading provider agencies to shutter programs, or close down completely.

Even in states like Arizona, where there are no official waitlists, the lack of available service providers or limited space in programs means many people end up stuck without what they need, sometimes for months.

“Sometimes it's even up to a year wait to obtain these critical service,” said Wasley.

Kelli O’Toole is CEO of Opportunity Tree, an Arizona nonprofit and service provider that focuses on people with intellectual and developmental disabilities.

She said staff turnover has grown in recent years, and it’s fueled by chronically low pay rates that don’t reflect how intensive a DSP’s work can be.

“They do anything from changing diapers, passing meds, job coaching,” said O’Toole. “And they're doing all these things, and we can barely pay them above minimum wage.”

O’Toole said the reality is, many people realize that they could earn more at a fast food restaurant for less strenuous work.

Since the pandemic, burnout is another issue that has only gotten worse.

“Last year our agency had $1 million in overtime because of all the open positions we have,” said O’Toole. “And people get burnt out. Like, we have some individuals that work 80, 90 hours of overtime in a two-week period.”

But pay rates are tied up in complex state funding processes, and are largely paid based on reimbursement through Medicaid.

'It's just seen as another expense to the state'

Jon Meyers is director of the Arizona Developmental Disabilities Planning Council. He said that for years, advocates have been asking lawmakers to work with the state’s Division of Developmental Disabilities and the Governor to raise DSP pay rates.

“We literally face a crisis,” said Meyers, “and Arizona is not alone. I would venture to say every state in the nation has this same issue, because there isn't a single state that is meeting the full need of investments in the DD service system.”

Still, he said it comes down to how the Legislature values investing in the wellbeing and dignity of people with disabilities.

“It's seen as a cost,” Meyers said. “It's not seen as an investment. It's just seen as another expense to the state.”

Wasley said the lack of investment is a reflection of how society values people with disabilities’ right to choose where and how they live.

“As a society, we finally dissolved the era of institutions,” she said. “But yeah, we haven't moved beyond that to create an inclusive society. Because we still don’t have access to a place to live of our choice, with the right support. It’s still like, you know, family home or you go down the avenue of group homes. I mean, there’s not a lot of options.”

Some days, Wasley said, it’s hard to see change coming in the near future, or even in her lifetime.

“I get angry sometimes,” said Wasley. “Mostly I'm frustrated, but it's just sometimes it turns to anger and sometimes it changes to hopelessness.”

But she said stubbornness keeps her writing advocacy letters for issues she’s passionate about, and finding ways to be active in her downtown Phoenix community.

“You also hope that somebody else is not going to struggle the way that you are,” Wasley said. “If you keep going, you can only hope that the life experience will be better for another.”

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Kirsten Dorman is a field correspondent at KJZZ. Born and raised in New Jersey, Dorman fell in love with audio storytelling as a freshman at the Walter Cronkite School of Journalism and Mass Communication in 2019.