SACRAMENTO, Calif. — Before the pandemic, David Katz had his own home with supported living services in Rocklin, a 12-minute drive away from where his parents live in Roseville.

He had been living there since 2016 with direct support professionals funded by the regional center.

David, 39, wanted to live on his own instead of with his parents, but he needs 24/7 supervision because, due to various aspects of his autism, he cannot be at home alone safely, according to his mother.

The workforce for people with disabilities includes personal assistance, home care workers and direct support professionals, who provide services for individuals to lead full and independent lives. Direct support workers help David learn how to manage his own home, go grocery shopping and cook. Some things, like using a hot oven, David will always have to rely on others to do for him.

As the pandemic took hold, many families grappled with a shortage in the direct care workforce caused by decades of sub-minimum wage rates. The average annual turnover rate for the direct support professionals workforce was 45% even before the pandemic, according to The Arc, a national organization advocating for people with intellectual and developmental disabilities.

The shortage made it difficult for David’s parents to find enough staff to fill shifts throughout the week.

“It started with just Tuesday,” said Betsy Katz, David’s mother. “And then he was coming home Saturday morning to Sunday evening, and then it actually expanded that he was coming home Tuesday plus Friday through Sunday.”

Soon enough, David was living at home for half of the week, every single week for three months. He was in direct contact with four staff members and a supervisor, all of whom interacted with other clients with supported living services. And then he’d come home, where both of his parents are at heightened risk of severe illness from COVID-19.

“It was very, very difficult,” Katz said. “We were observing precautions quite religiously.”

Many care professionals take issue with those who call the workforce shortage a crisis.

“We refuse to call it a crisis. It’s a systemic failure,” said Joseph Macbeth, the CEO of the National Association of Direct Support Professionals (NADSP). “This has been going on for 30 years or more.”

According to Macbeth, it’s too soon to know precisely how much the pandemic has affected the workforce turnover rates.

Data from The Century Foundation shows that employment in non-residential services for the elderly and people with disabilities is down 3% from pre-COVID times, and residential employment is down 10%. But anecdotal evidence from service providers highlights the severity of the shortage.

“Less and less people are coming to do this work. That is clear,” Macbeth said. “And that’s consistent with a lot of other low-wage jobs. The service industry, the retail industry, they can’t find people either, post-pandemic. So we are in that same bucket.”

The Bureau of Labor Statistics does not designate a specific occupational category for direct support professionals who work with people with intellectual and developmental disabilities. Instead, they fall into occupational categories like personal care assistant, home health aide and nursing.

As such, the Bureau of Labor Statistics may undercount direct support professionals, according to the NADSP.

This is “extremely problematic,” said Nicole Jorwic, the senior director of public policy at The Arc, because states aren’t required to collect data and examine wages for those workers.

For Turning Point Community Programs, a nonprofit in Northern California providing support for adults and children with intellectual and developmental disabilities on an outpatient basis, their current labor shortage is 30% higher than anything they’ve seen before.

“The shortages we’re experiencing now are really unprecedented,” said Diana White, the chief operations officer at Turning Point.

Shortage in the direct care workforce

Service providers and workers agree that systemically low wages are the primary cause of workforce shortages.

In August 2020, shortages forced Janet Brandon to close her adult development program serving the greater Sacramento area.

“I can’t run my business at full capacity,” Brandon said. “I don’t have enough staff to cover all my clients.”

On July 16, Brandon also closed her independent living services program, meaning 116 clients have to find and transition to a new agency.

“All the service coordinators that I work with through the regional center and parents were devastated,” Brandon said. High turnover rates and programs closing are difficult for clients who become comfortable and build relationships with their service providers, she said.

Brandon is the CEO of A.I.M. (Achieve Independent Milestones) & Associates, which provides services for adults with intellectual and developmental disabilities in conjunction with the Alta Regional Center in Sacramento.

In 2006, when she opened A.I.M & Associates, Brandon said she received a rate of $7.50 per hour for her employees. But since then, the rate increases she receives have crawled in comparison to cost of living adjustment increases. She said the main reason she had to close these services is that the current rates prevent her from being able to hire and retain quality workers.

“It’s impossible to hire people,” Brandon said. “I closed that division for staffing needs and an antiquated rate.”

The direct support workforce has an average wage of $10.72, according to The Arc. Medicaid home and community-based services (HCBS) fund the vast majority of direct care services. The state and federal governments negotiate these rates.

When minimum wage rates increase, most direct support workers are left out — just like workers with disabilities who can still be paid below minimum wage. Since 2006, the minimum wage in California has nearly doubled, but Brandon said the rates she receives for her employees have increased by just 22.6%.

Agencywide, Brandon has lost 20 out of 85 employees across three programs during the pandemic. One employee quit at the beginning of the pandemic to home-school her son, Brandon said, and found she made more money on unemployment benefits.

Women and women of color make up most of the direct support professionals workforce, according to a report by the Paraprofessional Healthcare Institute. And a national survey of nearly 9,000 direct support professionals conducted by the NADSP at the beginning of the pandemic found that 74% of respondents are the primary wage earners in their household.

Some left their jobs to care for someone with health issues or to home-school their children. Others had child care issues because day care centers closed.

Direct support workers have to provide in-person services and have close and consistent contact with people with disabilities, lending to a fear of contracting COVID-19, another reason many left their jobs during the pandemic.

“We really have historically served some of the most vulnerable citizens in our communities,” White said.

Other service providers also credit unemployment benefits as contributing to the rise in workforce shortages during the pandemic.

Californians are once again required to prove they are looking for work to continue receiving unemployment benefits.

Yet that change might not be enough. Even when people apply for job openings, service providers say, very few show up to interviews or orientations.

Michelle Ramirez, the CEO of On My Own Independent Living Services in Northern California, said she had 10 people scheduled for orientation, and six of them did not show up. Of the four who did come, two made it through background checks, and one quit within months of being hired.

Brandon said this is not uncommon for her agency either. She said many applicants are using interview confirmation emails and texts as evidence they are searching for work without bothering to appear for the interviews.

“We’ll set up interviews — we might have three in one day — and we’re lucky if one person shows up,” Brandon said. “No one (from the Employment Development Department) has time to follow up to see if they actually showed up.”

What California and Biden want to do

The shortages in the direct support professionals workforce are indicative of larger trends in the direct care workforce, including personal care aides, home health aides and nursing assistants, according to Jorwic.

“Broadly the direct care workforce … are all facing the same issues,” Jorwic said. “The wages are not sustainable, and do not support a living wage.”

When there is a shortage, families must step up to provide these services, just as Katz had to do for her son.

“There’s huge vacancy rates, there’s huge turnover rates and ultimately the beneficiaries are the ones that suffer as well as the workers,” Jorwic said. “And then what ultimately that means is that family caregivers are left filling in the gaps.”

President Joe Biden proposed a $400 billion investment to create jobs and raise wages and benefits for essential home care workers in his American Jobs Plan. The Better Care Better Jobs Act, introduced in Congress by U.S. Sen. Bob Casey, D-Pa., and Rep. Debbie Dingell, D-Mich., would put into motion Biden’s original proposals if passed.

The investments would expand quality, affordable access to home and community-based services and create the infrastructure for well-paying caregiver jobs with benefits and collective bargaining.

In California, with a $76 billion budget surplus for the 2021-22 fiscal year, Gov. Gavin Newsom approved $89.9 million for 2021-22, growing to $1.2 billion in 2025-26 to phase in service provider rate increases.

But for Brandon, the benefits won’t make it in time to save all her programs.

“I can’t wait that long,” Brandon said. “For my ILS division, that’s too late.”

© 2021 The Sacramento Bee
Distributed by Tribune Content Agency, LLC

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