Elderly, disabled Texans wanting to stay in their homes threatened by low home care pay

For 40 hours a week, Angela Blankenship takes care of Rick Frame, who's been paralyzed from the neck down since a 1999 motorcycle accident.

She helps him eat, bathe and move, allowing the former tool designer to stay in his Arlington home.

"I'm able to live my life my own way," Frame, 59, said. "I've heard nothing but horror stories about people that live in nursing homes."

For the intensive labor required, Blankenship is paid $9.75 an hour from Texas Medicaid funds Frame receives for his care. Other personal care attendants make as little as $8.11 an hour—the program's base wage.

"There's never been any money in caregiving, but I love the work," said Blankenship, 51. "It's incredibly rewarding."

Frame is lucky to have an attendant. More Texans than live in Plano are experiencing a home-care labor shortage induced by low wages that could force them to surrender their independence and go into nursing homes or other institutions.

The low wages have created "100% turnover" and forced many attendants to sign up for public assistance programs such as food stamps, Medicaid and subsidized housing, said Rachel Hammon, head of the state's home health agency trade group.

The Legislature, flush with cash, has the power to relieve the crisis.

So far this session, both chambers' budget writers haven't gone even halfway toward raising the $8.11-an-hour floor for "community care attendants" to a level remotely competitive with fast-food chains, which can pay up to $20 an hour. And that's without benefits.

The number of Americans 65 or older is expected to nearly double by 2060. Finding money and labor for long-term care looms as a major challenge. For the most part, Medicare, the federal health insurance program for seniors, does not cover long-term home care.

Medicaid, the state-federal program for poor children, low-income pregnant women and the frail, does. More than 302,000 Texans receive help from attendants paid by Medicaid community care programs.

Federal law requires states to cover nursing home care for recipients of Supplemental Security Income, a type of Social Security income support that this year pays people just under $11,000. Federal law also requires states to create another pathway to receiving long-term care—either in an institution or at home—for people whose income is low enough and whose needs are significant. In Texas and most states, the income limit is three times what SSI pays, or almost $33,000.

But meeting the medical and financial screening tests doesn't guarantee recipients can get home-based services. That's because states have total discretion to set Medicaid reimbursements, including the wages paid to community care attendants.

The GOP-controlled Texas Legislature, whose members complain of Medicaid's "one size fits all" federal mandates, can gloss over that fact. Failure to increase provider reimbursement rates as the cost of living increases can cause failures, experts note, even if state leaders pin all the blame for Medicaid's shortcomings on the federal government.

Lawmakers are hearing many pleas for how they should spend some of a record-breaking $32.7 billion revenue surplus—largely the product of Texas' rapid economic rebound from the COVID-19 outbreak, higher inflation and GOP leaders' hoarding of federal pandemic aid.

Sen. Charles Perry, R-Lubbock, said it's unacceptable to pay poverty-level wages to attendants helping vulnerable Texans stay in their homes. The state should tap surplus dollars to catch up, he said.

"The issue has better awareness and support than anytime I have been here," said Perry, the Senate half of a bipartisan call for raising Medicaid's minimum hourly wage for attendants to $15.

Hammon, executive director of the Texas Association for Home Care & Hospice, a trade group for home health agencies, said low reimbursements have created a shortage of attendants. That's metastasized into a "crisis" for her members and their clients, resulting in 50% or more of authorized services going unfilled, Hammon said.

Medicaid is the major payer for long-term community care services. According to ZipRecruiter.com, home attendant pay in Texas ranks 47th lowest among the states, with an average of $11.22 an hour.

Like Arlington's Frame, Laurie Truesdell of Mesquite is managing her own budget under Medicaid. Truesdell, who from birth has had cerebral palsy, said she waited seven years to get off a state waiting list for Community Living Assistance and Support Services, or CLASS, which covers attendant services.

Truesdell's initial experience with paid attendants was traumatic. Her attendant, realizing she couldn't make it on the low wages, bailed after about three days, leaving Truesdell stranded at her job as advocacy coordinator at REACH, Inc., a nonprofit providing services to people with disabilities in four North Texas counties so they can lead independent lives. Truesdell, 49, then turned to her parents, Rosa and Jerry Truesdell, to be her (partially) paid caregivers. But her father's now 84 and transition planning is needed, Laurie Truesdell explained.

"I don't know very many 80-plus-year-olds who can fill the demanding role of lifting me and caring for me," she said.

About a year ago, Truesdell hired Leah Gardner as her attendant. Gardner's pay is so low, she supplements her income with a part-time job at Amazon's warehouse in Balch Springs.

"I live in constant fear that I won't be able to keep her if the wages don't increase to a competitive wage," Truesdell said. Just last month, Gardner was offered another shift at Amazon, and for financial reasons had to accept, eating into her availability as an attendant, Truesdell said.

"They can go anywhere to make more money, whether it be fast food, Chick-fil-A or a warehouse job," she said. "If that's going to be the reality, then I would have to go into a facility because of the amount of care that I need."

How did we get here?

For legislative session after legislative session, Dennis Borel, who runs the Coalition for Texans with Disabilities, has sought a higher attendant wage.

"I've been chasing this thing down for 20 years," said Borel, who attributes part of the problem to a dizzying number of programs that fall under the rubric of Medicaid community care. They range from home-delivered meals and adult foster care to services tied to particular disabilities and combinations of disabilities. Most involve providing attendants. Some add on different types and amounts of therapy.

A recent report by the state Health and Human Services Commission, which runs Medicaid, appended a three-page list of community care acronyms.

"It's been a piecemeal approach—okay, we're going to do this; okay, now we're going to add in another piece," Borel recounted. "And that's why there's so many of these different programs out there, which has been endlessly confusing."

Anne Dunkelberg, a former state Medicaid official who is senior fellow at the progressive research and advocacy group Every Texan, said Medicaid-funded, home-based attendant care became more widely available in Texas than other states because the late U.S. Sen. Lloyd Bentsen, D-Texas, authored special legislation in 1988 that let the state provide attendant care while people were on waiting lists for the community care programs.

Stagnant wages and a paucity of employer-provided fringe benefits for attendants have left things in sorry shape, she said.

"Obviously, [attendants] are motivated by something other than money because they can clearly make almost twice as much at any fast-food restaurant or big box" store, Dunkelberg said.

Alice Burns, associate director of the Kaiser Family Foundation's program on Medicaid and the uninsured, said nursing homes used to account for most of Medicaid's spending on long-term care.

In recent years, spending on home and community-based care has eclipsed nursing home expenditures, she noted. States have sought from federal officials waivers so they could offer expanded in-home services benefits to targeted populations, but with capped spending, Burns explained.

That has created waiting lists for the different alternatives to nursing home care. The Health and Human Services Commission says as many as 165,000 people have placed their names on "interest" lists despite a potential wait of decades.

Health care economist Joanne Spetz said the U.S. Supreme Court's Olmstead decision in 1999 helped spur growth of home and community based programs in Medicaid, or HCBS. The justices said unnecessary institutionalization of people with disabilities was discrimination.

"The policy concern that sometimes gets voiced is that even though home and community care is less expensive, it's more 'attractive' than a nursing home and thus offering good HCBS will increase enrollments and stretch Medicaid budgets too much, versus offering only nursing homes," said Spetz, director of the Health Workforce Research Center on Long-Term Care at the University of California-San Francisco.

What's the solution?

In 2015, the Legislature increased the community attendants' base wage to $8 an hour, from $7.84. Four years later, lawmakers bumped it to $8.11 an hour. That's where it's remained, despite the biggest increase in inflation in four decades.

Going into this year's session, Borel helped win support from Perry and Austin Democratic Rep. Donna Howard, both budget writers, for a push to boost the base wage next year to $15 an hour, and to $17 an hour in fiscal 2025.

For the upcoming, two-year cycle, that would cost the state $2.6 billion, which would generate $4 billion of federal Medicaid matching funds. Proponents have pointed to ways in which the new spending would be partially offset—for instance, by reduced use of nursing homes and fewer hospital stays.

Borel said so far the House Appropriations Committee has recommended spending about $715 million more state money—enough to take about 10% of the attendants to $15 an hour, with smaller wage hikes scattered across other programs. The Senate Finance Committee approved even more, $902 million, to take all attendants to $11 an hour. Either proposal would draw down much fewer federal matching dollars.

Perry said that in past sessions, colleagues have been confused. By approving money for wage increases in one of the many Medicaid community care programs, they mistakenly thought they'd erased poverty-level wages in all, he said.

"Honestly—most members think we have funded these groups in the past when only one group got $$," Perry said in a text message.

"There is an appetite to do more," he said of additional funding. Lawmakers go home May 29.

Howard said she's going to keep pressing for House-Senate budget negotiators to tap the surplus for wage hikes for attendants.

"The work they do is incredibly important and vital, especially with our aging population but also those with disabilities who are not getting what they need to have just the dignity of daily living," she said.

Blankenship, Frame's attendant, said when she worked for a home health agency between 2006 and 2016, she and her son were on food stamps.

A single parent who lives in Fort Worth, Blankenship said she can get by only because her son, now in his 20s, has left home. She inherited her house from her mother. Her 2013 Nissan Maxima is paid for, she said.

"I'm very lucky that my bills are little. That's the only reason I can do this."

Still, the work can be physically taxing. Chores multiply when you serve someone unable to use their arms or legs, Blankenship explained.

"No one can live on $10 an hour—and for the level of work that we do," she said. "If you have a quadriplegic, there's no energy for a second hustle—for a second job. I need to be paid correctly."

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