Too few workers to care for disabled and elderly

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.

Katz, 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.

Workers needed for people with disabilities include personal assistants, home care workers and direct support professionals, who help individuals lead full and independent lives. Direct support workers help Katz learn how to manage his own home, go grocery shopping and cook. For some things, like using a hot oven, Katz will always have to rely on others.

As the pandemic took hold, many families grappled with a shortage of direct care workers caused by decades of subminimum wages. The average annual

turnover rate for direct support professionals 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 Katz’s parents to find enough staff to fill shifts throughout the week.

“It started with just Tuesday,” said Betsy Katz, his 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, he 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.

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. “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 nonresidential services for the elderly and people with disabilities is down 3% from pre-COVID-19 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.”

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 National Association of Direct Support Professionals.

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.

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

On July 16, Brandon also closed her independent living services program, meaning 116 clients have to find 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 AIM (Achieve Independent Milestones) & Associates, which provides services for adults with intellectual and developmental disabilities in conjunction with the Alta Regional Center in Sacramento.

She said the main reason she had to close these services is that the current rates she receives prevent her from being able to hire and retain quality workers.

“It’s impossible to hire people,” Brandon said.

The direct support workforce has an average wage of $10.72, according to The Arc. Medicaid home and community-based services 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. 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 National Association of Direct Support Professionals at the beginning of the pandemic found that 74% of those responding are the primary wage earners in their household.

Some left their jobs to care for someone with health issues or to homeschool their children. Others had child care challenges 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.

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

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,” said Nicole Jorwic, the senior director of public policy at The Arc. “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 Betsy Katz had to do for her son.

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 Sen. Bob Casey, D-Pa, and Rep. Debbie Dingell, D-Michican, 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.”