Home aide shortage threatens care for developmentally disabled Arkansans

Teresa Dodson and her son, Nathan (Credit: Brian Chilson)

In December, Governor Asa Hutchinson announced a plan to bring relief to thousands of families stuck on a waiting list for Medicaid-funded services for people with intellectual and developmental disabilities.

Under the governor’s plan, Arkansas will spend an additional $37.6 million each year to expand a program that pays for direct care workers and other services that help developmentally disabled people stay in their homes or in a community-based setting, as an alternative to institutionalization. These home and community-based services are sometimes called “waiver” services because they are funded through a waiver agreement between federal Medicaid authorities and the state. About 5,000 clients are now on the Arkansas waiver program.

The governor has said all of the roughly 3,200 families now on the waitlist — some of whom have been waiting for more than a decade — should be served by June 2025. Yet the plan may run into a problem. Arkansas, like many states, is facing a shortage of direct care workers, the frontline staff who help disabled, elderly and other clients with daily activities like eating, bathing, getting dressed and using the bathroom.

Teresa Dodson, 49, is the primary caregiver for her 22-year-old son, Nathan, who has autism and requires around-the-clock supervision. 

“The governor has been releasing more of the waitlist people to start receiving coverage services,” she said. “That's fabulous. It's not going to help us families if they can't find staff. And the more people we release off of that waiver waiting list, the more people that need staff.”

From 2017 to 2020, the number of nursing assistants, home health aides and personal care aides in Arkansas dropped slightly, from about 41,000 to about 39,000, according to PHI, a national nonprofit that advocates for direct care workers. The workforce likely decreased further over the past two years, fueled by the COVID-19 pandemic and high demand for low-wage workers in other sectors.

Direct care workers are typically paid minimum wage — or close to it — to perform physically and emotionally demanding work. Arkansas’s minimum wage is $11 an hour.

Leaders of home and community-based service providers say finding workers has become much harder over the last year and a half. In January 2021, Easterseals Arkansas had about 14 openings for direct care workers, according to Ron Ekstrand, the CEO of the Little Rock-based provider. By April of this year, it had 52 openings. (Easterseals employs about 250 direct care workers total.)

“There’s something wrong with a system in which we can’t find enough people,” Ekstrand said.

Easterseals Arkansas CEO Ron Ekstrand (Credit: Brian Chilson)

Some help is on the way. In February, the Arkansas Department of Human Services (DHS) announced a $112 million “workforce stabilization incentive” for providers of home and community-based services. Organizations serving developmentally disabled Arkansans will receive about $52 million for worker retention and recruitment, according to DHS spokesman Gavin Lesnick. The remaining $60 million has gone to providers that serve elderly people.

The funding is part of the American Rescue Plan, the federal pandemic relief package signed by President Biden in 2021. The bill provides another $12 million for technology initiatives and $27 million for renovation and construction projects for both groups of Arkansas providers, to be disbursed later this year.

Providers say the one-time money is desperately needed, but it won’t solve their long-term workforce problems. And with the state opening up new waiver slots, families who have been waitlisted for years may still find themselves waiting for services.

Syard Evans is the CEO of Arkansas Support Network, a provider with offices in Springdale, Fort Smith, Camden and Jonesboro. Currently, the organization “does not have the necessary resources to support the clearing of the waiver waiting list,” she said.

As of mid-May, Evans said, almost 40 individuals who had been referred to Arkansas Support Network for services were facing delays in receiving help due to the staffing shortage.

Low wages, tough jobs

Before the pandemic, Evans said, Arkansas Support Network typically had between 85 and 100 job openings a month and about 120 applications. The numbers began to worsen in early 2021. By April of this year, the organization had 182 open positions and just 90 applications.

When employers in other sectors struggle to find workers, they typically increase their starting pay. Providers of home and community-based services don’t have that option.

“Fast food can add 50 cents to every combo meal and generate additional revenue to raise their minimum wages to $15, $16, $17 an hour — we cannot. We're locked into state Medicaid reimbursements,” Evans said. “We do not have the ability to adjust our pricing or what we're being paid or what we're able to bill.”

Starting pay for a direct care worker at Arkansas Support Network is $12 an hour but increases based on education and experience. On average, the direct care workers she hires make $14 an hour, Evans said.

Syard Evans, CEO of Arkansas Support Network (Credit: Mikayla Warford)

The problem of recruitment predates the pandemic, she said. 

“It is a field that has been underfunded and under-resourced from the beginning,” Evans said. “In the mid-’90s, there were organizations that were putting out reports talking about the collapse of the industry if we cannot find a sufficient workforce.” The labor shortage created by the pandemic “looks like it potentially could be the straw that breaks the camel's back.”

Ekstrand said Easterseals participates in an employee retention credit program from the federal government that allows it to pay direct care workers $15 an hour and provide some paid time off and benefits. But the federal program is temporary, and it’s not clear Easterseals can keep paying $15 an hour when it goes away.

“We can’t keep doing it if [Medicaid] reimbursement rates don’t go up,” Ekstrand said.

Ekstrand said he believes many people would enjoy direct care work if they could make a decent living doing it. 

“There are people who are wired in a way that they are caregivers by nature,” he said. “But they look at that starting pay and the benefits, and they see these other competitive offers, and they're like, ‘I’ve got to put food on my table. I gotta pay my rent.’ And so, we've got to become more competitive with what we're offering.”

Reade Roberts, a direct care worker who has been employed at Arkansas Support Network in Fayetteville since 2004, said many of his co-workers are leaving the field.

“We've lost staff in my house in the last few months [because they took] a higher paying job,” Roberts said. “They couldn’t afford not to go make an extra $2 or $3 an hour. Even though they really love their work and like the people they support, and we all got along well, just pay-wise they couldn’t continue to do it. And that’s sad. And it’s particularly sad for the people they support.”

Workers feel undervalued, Roberts said. 

“What I would want politicians and leaders to realize is that direct support professionals are not fast food workers. We have a lot more responsibility,” he said. “We're the last line of defense for these people to [not] fall through the cracks. And if we don’t step up and do our job … they're not getting taken care of the way they need to or deserve to be.”

Low pay, and the high turnover that comes with it, can also mean a lower quality of care for families.

For the past four years, Teresa Dodson has been Nathan’s only caregiver — a decision she made in an attempt to address behavioral problems her son had developed at school, Dodson said. Nathan’s behavior has since improved, and Dodson recently started bringing a direct care worker into their home for a few hours each week. But she worries that the worker will leave just as Nathan grows to trust her.

“This [direct care worker] has been hired to come work with [Nathan for] $11 an hour. She can't survive on $11 an hour. So about the time that my son gets used to her … I have absolutely no doubt she's going to go find a better-paying job,” Dodson said.

Teresa and Nathan at their home in Hot Springs (Credit: Brian Chilson)

Dodson, who lives in Hot Springs, is a paid caregiver herself. Like many parents of adults with developmental disabilities, Dodson gave up guardianship of her son when Nathan turned 18 so that she could be compensated by Medicaid through a provider organization. (Her husband remains Nathan’s legal guardian.) Although Nathan requires around-the-clock care, she said, the provider can only pay her for up to 60 hours per week.

Dodson’s new direct care worker is now in the home for about 8 hours weekly. “I had to reduce the hours that I'm getting paid by the amount of hours that she is working. So if she works 10 hours a week, I'm only allowed to bill for 50 hours a week,” she said. The worker’s hours are also constrained, Dodson said, because she has three clients but is not allowed to work more than 40 hours total each week.

Dodson said the situation was “ludicrous,” considering Nathan requires 24/7 care. “It's just very frustrating that, because of how little [the provider] is getting paid, they can't pay me for what my son actually needs,” she said. Her emotional health has suffered under the stress, she said,  but she can’t find time for therapy because she has to stay home with Nathan.

Credit: Brian Chilson

Tom Masseau, the director of Disability Rights Arkansas, a nonprofit that advocates for the legal rights of individuals with disabilities, said it’s “very taxing” for parents to provide care full-time. But, with a shortage of workers, it’s common.

“A lot of times you see family members coming in and pitching in to help, or one of the parents will quit their job and stay home,” he said. “The alternative is to go to a facility or an institution, and that goes against what we're trying to do with home and community-based services.

A short-term boost

The $52 million in American Rescue Plan funds won’t allow providers to increase wages long-term. DHS has told providers it can only be used for recruitment bonuses, retention bonuses and “complex care retention bonuses.”

Providers will be able to spend up to $1,000 per new employee recruited. Each employee also may be paid up to $15,000 in retention bonuses for the period between October 2021 and March 2024. Providers can spend an additional $3,500 per employee to retain workers who provide care to individuals with complex needs, a category that includes people who are wheelchair-bound or who have a history of behavioral problems, among other issues.

DHS has disbursed the money, but it has yet to reach providers. In Arkansas, Medicaid services for people with developmental disabilities or severe behavioral health needs are paid for through managed care organizations known as PASSEs, or Provider-led Arkansas Shared Savings Entities. DHS distributed the $52 million to the state’s four PASSEs in late March, according to Gavin Lesnick, a DHS spokesman. The PASSEs will begin paying out the money to providers beginning July 1, Lesnick said.

Evans and Ekstrand were part of a working group created to come up with a plan to use the federal funding — and, Evans said, to make sure the state applied for it at all.

“The state was really hesitant about the logistics and the practicality of it all, because it’s one-time money,” Evans said. State officials are sometimes wary of one-off funding, she said, because “people start to rely on it and expect it, and then when it goes away it actually is harmful.” 

Evans said providers were told the state would not use the American Rescue Plan money to boost reimbursement rates, since doing so could create an ongoing commitment after the federal relief funds run dry.

“Arkansas was very, very clear from the beginning … they would not take one dollar if it was going to mean that they would have to invest a dollar after the fact and try to figure out how to fund it from someplace else,” she said.

Asked why DHS did not use the money to jump-start an increase in direct care worker wages, Lesnick noted that the one-time federal funds were “aimed at stabilizing programs as they weather the negative effects of the pandemic.” 

The agency is making other changes to help providers recruit and retain staff, he said. “This includes eliminating experience requirements for direct support professionals and replacing them with training requirements that mirror what we have allowed during the pandemic,” Lesnick said.

Home and community-based services are already costly. According to a legislative report published in January, annual spending on Arkansas’s developmental disability waiver program reached $307.3 million by 2021, most of which was paid by the federal government. With a total of about 5,000 individuals on the waiver program, the average cost per client was $61,804.

But institutional care is even more expensive. In 2020, Medicaid spent almost $118 million on the 885 developmentally disabled clients housed in the state-managed residential facilities called human development centers — over twice the per-person cost of home and community-based services. (Human development center spending includes the cost of room and board and some other services paid for by Medicaid, however.)

Ultimately, providers say, they need a long-term increase in rates if they’re to pay better wages. Rates are negotiated between providers and the PASSEs, which receive a lump sum from the state for each individual they serve and are tasked with controlling spending.

Ekstrand said the PASSEs must get enough money from the state if they are to reimburse providers adequately. But he also said the PASSEs could be devoting more existing money to developmental disability services.  

“It seems like the resources are there,” he said. “We just need to allocate them the right way.”

(Ekstrand noted that Easterseals is an investor in one of the PASSEs, Summit Community Care, though he said Easterseals is not involved in Summit’s decision-making and does not have a seat on its board. Such a relationship is not unusual in Arkansas: Under state law, PASSEs must be majority-owned by providers.)

Ekstrand sits on the board of the Developmental Disability Provider Association, a trade association that is commissioning a study to determine what would constitute a competitive wage for direct care workers. He hopes the study, expected to be published in September, could start discussions about a rate increase.

“We have to make sure that the PASSEs are paying us enough that we can pay our staff, so we can provide our services,” he said.

This story is courtesy of the Arkansas Nonprofit News Network, an independent, nonpartisan news project dedicated to producing journalism that matters to Arkansans.

The Arkansas Nonprofit News Network is an independent, nonpartisan news organization dedicated to producing journalism that matters to Arkansans. Our work is re-published by partner newsrooms across the state.