Texas disability caregivers see earnings drop after pay hike

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In August, in an Austin high-rise north of the Texas Capitol, tearful parents lined a state health board meeting and pleaded with agency officials not to raise caregiver wages, which they said would backfire and cost them their livelihoods.

In a city where state officials typically hear petitions for budget increases, this group of parents, many of them primary caregivers for physically or mentally disabled adult children, argued the opposite. Some testified as a group before the Texas Health and Human Services Commission, their children sitting next to them while they testified. A small pay increase would mean they couldn’t log overtime without having to make up the difference, but they knew better than anyone that caregiving isn’t a 9-to-5 job.

Many of the children in the group rely on around-the-clock care paid for through a Medicaid waiver program called Community Living Assisted and Supportive Services. This year’s state budget will see a slight increase in base pay for caregivers, but advocates initially viewed the increase as a win after years of staffing shortages, turmoil and crises across the state’s Medicaid program.

But it had an unintended consequence: The shift in funding removed funding from overtime, which makes up a large part of a caregiver’s salary, and in this program, most caregivers were family members who relied solely on their role to make a living.

“It’s really shocking how many times we hear, ‘I wish we hadn’t increased it,'” said Marjorie Costello, chief administrative officer for Southwest Disability Services, which manages the Medicaid waiver program and is one of several contractors serving 2,100 clients. The program has a total of about 5,000 people, Costello said.

“It breaks my heart because we’re trying to do the right thing here. We’re trying to make a living wage,” she added.

Laurie Sharp installed a wheelchair ramp on a van she modified to make it wheelchair accessible, which took several weeks and cost $30,000. Photo by Julius See/Texas Tribune

During the 2023 regular legislative session, lawmakers increased the base hourly wage for caregivers from $8.11 to $10.60 as part of the budget. But that cut funding for overtime, which now requires overtime work to be paid at 1.5 times the normal rate, made it nearly impossible for contracting agencies that deliver the programs to pay overtime.

The CLASS program depends on people being able to work overtime — many of the caregivers are parents or relatives of recipients — and it’s hard to find outside caregivers willing to do so much work for such low pay, especially with the nursing shortage, she said.

To qualify for the Medicaid waiver program, an individual must be diagnosed with a state-certified illness before age 22 that “continues indefinitely” and severely limits some aspect of an individual’s ability to learn, speak, move, care for themselves or live independently.

The state pays each caregiver a different number of hours, with some paid caregivers working around 20 hours per week and others working 120 hours or more depending on the level of care needed, with overtime kicking in after 40 hours.

“We have to tell these families that some of them are losing $1,500 a month and some of them are having to look and hire for $10.60 an hour,” Costello said.

Nursing homes and other care facilities are a last resort for families who can’t find caregivers or can’t care for themselves, she said.

“When you can’t hire a new caregiver and you don’t have access to care, you have to call 911 to get out of bed. You continue to sit in your own filth because you can’t change yourself,” Costello said. “The worst case scenario is you die. The second worst case scenario is you end up in the hospital. The third worst case scenario is you end up in a nursing home.”

Costello said he hopes lawmakers will use a special legislative session scheduled for later this year to address the issue by raising caregivers’ average wages, not just their base salaries.

Rep. Donna Howard, D-Austin, said no one pointed out this potential consequence when she campaigned for a minimum wage increase in the Texas Legislature this year. Howard said she initially campaigned for a base wage of $15, but lawmakers compromised on $10.60. Howard previously worked as an intensive care nurse.

“For every step we take forward, it feels like we’ve taken at least one or two steps back,” Howard said. “This was unintentional and a result of a lack of knowledge on the part of lawmakers about how to address this issue. The services these parents are providing are not only caring for their families, but they’re helping to reduce costs across the state. It’s egregious and irresponsible to not recognize that.”

Howard added that someone, especially the state agency involved, should have notified lawmakers that something like this might happen.

Laurie and Kari carry Logan in a sling that Laurie says is nearly impossible to lift alone. Many parents in the program wonder how they will be able to find outside caregivers for the small pay increases. Photo by Julius See/Texas Tribune

Seeking help

Based on testimony during the regular legislative session this year, the Health and Human Services Committee expects the pay increase will “allow caregivers to recruit and retain additional caregivers, reduce the need for overtime and improve the health and safety of caregivers,” spokesman José Andrés Araiza said in a statement.

But many parents in the program cite national fast-food chains as competitors and question whether they will be able to find caregivers for such a small increase in price.

“You can make more money working at Burger King or McDonald’s,” said Eileen Davis, 63, who has been the primary caregiver for her 29-year-old son since he suffered a stroke at birth. Since the pandemic began, Davis has struggled to find another caregiver for her son: He is eligible for 70 hours of care, but Davis can only provide 40, so she has to find someone to fill the remaining 30 hours.

Davis’ son, Blake, who cannot use his legs or right arm and has a seizure disorder and intellectual disabilities, put him on the waiver program’s waiting list when he was a toddler, but waited nine years before he was accepted into the program.

More than 48,000 Texans are on the waiting list for the CLASS program.

“We’ve had so many people come out. One lasted a day and then never came back. I don’t know why, she didn’t answer her calls. I guess it wasn’t what she expected,” added Ms Davis, who lives in Heath.

Davis’ day includes helping her son get in and out of his wheelchair, whether he’s sitting on the couch or lying in bed, and helping him eat and go to the bathroom. In between, her son likes to watch movies on Netflix or listen to music on his iPad, but she tries to get him outside every day.

“She’s doing great,” Blake Davis said of his mother’s care.

Eileen Davis said finding a caregiver was important to her because she wanted her son to be able to be cared for when she was no longer physically able to. She said she had advertised online but had not yet found anyone.

“I just pray to God that my body will hold up well enough to keep doing this for a few more years,” she said.

Families cut costs

The official pay changes will take effect on September 1st, with the first reduced salaries due to be paid within the next few weeks, but families are unsure what to expect.

Deborah Joslyn, 61, is raising her 33-year-old daughter, Katie, who has Down syndrome, on her own. Joslyn, a nursing home nurse, used to bring her daughter to work, but when the pandemic hit, she couldn’t risk her daughter’s health and so she quit her job.

Deborah Joslin and her daughter, Katie Joslin, stand in front of their North Austin home. Joslin has been surviving on the income she earned raising Katie. “I don’t know” what would happen if her paycheck was cut, she said. Photo by Julius See/Texas Tribune

Since then, she has been surviving solely on the income she earns from looking after Katie, who is entitled to 62 hours of care per week.

“When we clock out at the end of the day, we still have to work full-time jobs and we can’t leave the kids alone when our shifts are over,” said Jocelyn, who lives in Austin. “I’ve already told my landlord, who I’ve been lucky enough to live with for 20 years, that I’m not sure I can make the rent. I have to find other sources of income because no matter what, I need to keep the electricity and gas running for Katie.”

Joslyn said she is “not sure” what will happen if the pay cuts are implemented, but is considering moving to New York, where some of her relatives live.

“I don’t know how we’re going to get there, how we’re going to get our stuff, but if we can’t stay here, we have to go somewhere,” she said.

Laurie Sharp is the primary caregiver for her 20-year-old daughter Logan, who uses a wheelchair and has a feeding tube. Logan has multiple respiratory conditions that require Sharp to be on a ventilator all day. Sharp, 62, gave up his job as a truck driver after 37 years to focus on caring for his daughter.

Sharp said he is now trying to save money in the face of a pay cut, canceling his cable and lawn care subscriptions and becoming “very careful” with his food choices at the grocery store.

“I tried to pay off as much debt as I could with my savings and cover everything,” said Sharp, who lives in Pflugerville.

Sharp said her daughter has benefited greatly from the program but will no longer receive some of the care, such as the extra nursing hours she received as part of another program, once she turns 21. Sharp doesn’t have the option of leaving Logan to look for work, and she is struggling to find someone she can trust to look after her daughter.

Laurie tucks Logan in bed and kisses him on the forehead. Sharp said he’s been saving up for a pay cut. Photo by Julius See/Texas Tribune

In the meantime, Sharp said Logan continues to receive physical therapy and, when the weather is nice, goes to a nearby park with her – one of her favorite activities.

Sharp said that’s not a consideration when it comes to nursing homes.

“I don’t care if I die,” she said.

Neelam Vohra is a Disability Reporting Fellow, covering accessibility issues affecting Texans. She was a member of the 2022-23 New York Times Fellowship class. Her fellowship is a partnership between The New York Times, The Texas Tribune and the National Center on Disability and Journalism at Arizona State University. The fellowship is funded by a grant from the Ford Foundation.

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