Home Aides Seek US Labor Designation as Wages Lag, Demand Grows

For almost nine years, Stephanie Crumb has been traveling between homes, grocery stores and anywhere her clients—people with developmental and intellectual disabilities—need her to be. She installs their smart devices, schedules their medical appointments, and preps their meals.

Crumb started out making $11.50 an hour and now makes $22.27—enough to cover her rent, bills, and a few meals out with her children.

She’s watched coworkers at her employer, the Norfolk, Va.-based nonprofit Hope House, leave for better pay at Target Corp. or a restaurant. But she hasn’t given up, hoping to make a difference.

“You get connected to some of these people as you just kind of witness the small accomplishments over the years,” Crumb said. “It just keeps me going to kind of strive and want to help the next person.”

Crumb works as a direct support professional, part of a little-noticed corner of the health-care workforce poised to swell to 4.5 million as the US population keeps graying in the next decade. It’s also one plagued by turnover and low pay—exacerbated by a lack of government recognition and assistance.

Advocates and lawmakers on Capitol Hill are pressing to change that with a small but potent step: recognizing direct support professionals like Crumb with a distinct worker classification code that they say would lead to more comprehensive federal data collection, better pay, and a bigger spotlight for the occupation.

Their pending bill (H.R. 2941) could also help lay the groundwork for shifting even more care out of institutions to people’s homes, they say.

“Being able to name it, to have data on this profession, goes a long way,” said Elise Aguilar, director of federal relations for American Network of Community Options and Resources, an advocacy group dedicated to supporting people with intellectual and developmental disabilities.

The bill has little opposition in Congress and supporters see a champion in Vice President Kamala Harris, whose presidential campaign has included a fresh focus on care workers.

Still, some agencies are warning that the change could turn out to be hasty, and disrupt long-established federal data models. The effort to create a new designation for direct support professionals offers a window into how tangled and tortuous it becomes to rewrite a single line in workforce data—a change that could affect hundreds of thousands of workers.

Larger Issue

The need for home aides like Crumb has been amplified by Medicaid program shifts toward keeping people out of long-term care facilities.

President Joe Biden and Democrats in Congress have tried to fix workforce shortages and boost access to home and community-based long-term care services in Medicaid by proposing at least 80% of Medicaid payments for home health-care services go to worker wages.

Medicaid Targets Pay in Bid to Boost Home Health Worker Ranks

That move came after Democrats injected $37 billion for home- and community-based services in the 2021 American Rescue Plan (Public Law 117-2). Nearly half went to workforce retention and recruitment programs, mostly in the form of onetime pay bumps or bonuses for home care professionals, according to Centers for Medicare and Medicaid surveys.

Crumb says she’s watched coworkers leave for better pay in the restaurant or retail industries.

Photo courtesy of Sami Roy Photography.

Now that money is drying up, as demand continues to outpace the public funding for home care.

More than three-quarters of disability service providers facing staff shortages last year stopped accepting new client referrals, according to research by ANCOR.

Additionally, 44% had to discontinue some programs, and about 75% of case management service providers struggled to connect people with necessary services due to the limited availability of providers, a ANCOR found.

Pay and turnover are the biggest culprits. The median wage for direct support professionals in 2021 was $14.50 and the turnover rate nationwide was almost 41%, according to a survey from National Core Indicators, a group that tracks developmental disability services.

“We have both a supply problem and a demand problem,” Jack Rollins, director of federal policy at the National Association of Medicaid Directors, said.

A Bureaucratic Process

Each year the federal government tracks economic data on thousands of occupations, reporting staffing and pay levels in any given industry. Direct support professional jobs have generally been lumped by economists into a broader category of direct care workers, which include personal care aides, home health workers and some kinds of nurses.

Those pushing for the new Standard Occupational Classification code say specific data will make it easier to lobby lawmakers in Washington and statehouses for funding.

Advocates turned to Congress for help because they say formally creating a new SOC code is far too bureaucratic, and takes too many years.

Traditionally, winning a new code designation involves convincing both the Office of Management and Budget and the Standard Occupational Classification Policy Committee—composed of representatives from 18 federal statistical agencies and components—that there is a need for the change.

The opportunity to do that comes up only every 10 years or so. OMB last made changes in 2018—a process that took more than five years—and just finished collecting recommendations from the public for a 2028 revision.

Changing Worker Classifications

Seeking congressional intervention now to ensure DSPs get their code is “uncharted territory” and could disrupt the years-long method for updating the statistical models, said Sam Fincher, branch chief of occupational analytics and classification at the Bureau of Labor Statistics.

“I don’t think we want to set that kind of precedent,” Fincher said. “We think that any kind of changes to the SOC should be done within the process.”

For the 2018 cycle, the SOC Policy Committee and OMB said direct support professionals didn’t merit their own classification because they perform duties similar enough to occupations already represented by the codes.

“The occupational duties of Direct Support Professionals vary widely and overlap with other occupations,” the committee said then. “These workers should be coded to the occupation that requires the highest level of skill. If there is no measurable difference in skill requirements, workers should be coded in the occupation in which they spend the most time.”

A First Step

The legislation has won approval from the House Committee on Education and the Workforce and has also been passed by the Senate in a similar bill (S. 1332), with the potential of hitting Biden’s desk this fall.

If signed by the president, the bill would shoehorn DSPs into their own data category in the current revision of federal workforce data. And while federal agencies are wary of disrupting their regular procedures, a push from Congress could be tough to ignore.

“Can’t argue with Congress, right?” Fincher, from the BLS, said. “If they’re telling us to do something, we will have to do it.”

DSP advocates say they’re hopeful that this small step will cement an important first win in the longer battle for greater recognition—and compensation—for workers like Crumb.

“I’d like to be able to pay the bills and be able to go see a movie,” Crumb said. “Take the kids out.”