Low wages and pandemic gut staffing support for those with disabilities

Ernestine "Erma" Bryant likes her job, but the pay is a problem.

She works in a caregiver role as a "direct support professional" in Tifton, Georgia, helping people who have intellectual and developmental disabilities with basic functions such as dressing, bathing and eating.

Bryant said it's fulfilling work. "You can help people be successful — people who are confined to the bed," she said. "It gives me joy knowing that I can help that person get out of the house."

But she said she's being paid less than $10 an hour and is trying to get a second job.

In a way, Bryant is an anomaly, having worked as a support professional in the same job for five years in a field with high turnover. Even before the pandemic, the nation had a shortage of direct support professionals working in private homes, group facilities, day programs and other community settings.

Fears of contracting covid-19 at work have made the caregiver staffing problem worse. Persistent low pay amid a tight U.S. labor market makes it that much harder to attract workers.

Worker shortages across the health care spectrum — from nurses to lower-level staffers — are an unprecedented challenge for hospitals and other medical organizations. The shortage is at an "epic level," said Elizabeth Priaulx, a legal specialist with the National Disability Rights Network.

People with disabilities who have been approved by state Medicaid programs to receive 40 hours a week in caregiver services now often get just 20 hours, Priaulx added. If family members can't help offset the gap, a person may be forced into a nursing home, she said.

The Zoller family of Flowery Branch, Georgia, is struggling with that reduction in service hours.

Katie, 34, is developmentally disabled and lives at home. Her father, John, said that instead of the 24/7 care she previously received, she is provided less than half of that at about 60 hours a week because of caregiver shortages. So John, 65, and his wife, Weda, 63, must fill in the rest. "We have to tag-team," he said. The staffing gap occurred after one caregiver for Katie moved away, and another took a warehouse job, each getting higher pay, he said.

Diane Wilush, CEO of Atlanta-based United Cerebral Palsy of Georgia, said her organization has more than 100 vacancies among 358 jobs in 24/7 residential programs. Many day programs, including those run by her group, have been unable to offer full services because of staffing gaps.

"We can't compete with every retail shop paying $15 to $18 an hour," Wilush said.

That's because several years ago the state of Georgia chose a base Medicaid reimbursement rate for residential services providers of $10.63 per hour, though they can pay caregivers more — and sometimes pay less. "It was an inadequate rate even then," Wilush said.

The strain from an increased workload has a negative effect on caregivers, said Bryant, the caregiver in Tifton. "When you don't have enough help, it makes you want to find another job," she said.

In 2019, before covid erupted, the direct support professional turnover rate was 43% nationally, according to the National Core Indicators collaboration of public developmental disability agencies. In a February 2020 survey of providers by the American Network of Community Options and Resources, two-thirds of service providers said they were turning away new referrals. Since staffing shortages became a problem, 40% have seen a higher incidence of events that could harm a person's health or safety.

And a KFF survey released last month found that during the pandemic, two-thirds of responding states reported a permanent closure of at least one provider of Medicaid-covered home- and community-based services.

Workers have at times been forced to work 16-hour shifts during the pandemic, said Whitney Fuchs, CEO of InCommunity, an Atlanta-based provider of community services and support to people with developmental disabilities. "This crisis is going to erupt into unsafe, unhealthy situations."

His organization needs to fill 166 openings out of 490 positions. Before the pandemic, the number of job openings was 80. Even managers, who often cover work shifts, are leaving their jobs due to overwork, Fuchs said.

"People are tired constantly," he said. "This is somebody's life we're supporting. There have been adverse patient outcomes," such as medication mistakes.

Through the recently passed American Rescue Plan Act, the Biden administration has recognized the wage gap for direct care workers by adding more Medicaid funding to help compensate them for their work. The act increases the federal matching rate for state spending on home and community-based services by 10 percentage points from April 1, 2021, through March 31, 2022.

It requires states to submit spending plans for those funds. Georgia has submitted a plan that contains rate increases, as well as a study of worker wages. The proposal is under review by the Centers for Medicare & Medicaid Services, according to the Georgia Department of Behavioral Health and Developmental Disabilities. Staffers there said the department is "acutely aware" of the shortages.

Federal covid funds have enabled Georgia to give a 10% pay increase for some provider services.

Other states are trying to buttress worker salaries on their own. Missouri recently approved $56 million to improve its direct support professional crisis.

Parents of people with disabilities, though, have concerns about the future viability of the services if the national worker shortage isn't fixed.

Bill Clarke and his wife are in their 80s. They have two children with multiple disabilities receiving services in residential homes in the Atlanta area.

"They have physical problems that require 24/7 care," Clarke said. "There are just not enough people willing to go into these lower-paying jobs. They are not compensated adequately."

If these services disappear, Clarke said, "we could not handle both of our sons physically."

This article was reprinted from khn.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.