Parents Who Care for Their Disabled Children May Lose Money After Pay Raise

By Neelam Bohra, The Texas Tribune

Inside an Austin high-rise north of the Texas Capitol in August, tearful parents lined up for a state health commission meeting to beg agency officials not to increase caretaking wages. It would backfire, they said. They would lose their livelihoods.

In a city where state officials typically hear pleas for more funding, this group of parents — many who serve as primary caretakers for their physically and mentally disabled adult children — pushed for the opposite. Some testified in groups, with their disabled adult children sitting next to them as they spoke. Raising the wage by a small amount would take away their ability to log overtime hours without making up for the difference, and they knew better than most: caretaking was never a 9-to-5 job.

I cannot get out of the house to get a job, because my son needs me. Credit: Mary Dominguez at an Aug. 17 Health and Human Services Commission meeting

One parent who attended the meeting virtually broke down while sharing that she had to quit her job to start caring for her daughter, who was in a near-fatal car accident.

“You're only one accident away from my life,” the parent, who introduced herself as Jane Mormon, told Texas Health and Human Services Commission officials through sobs.

You’re only one accident away from my life. Credit: Jane Mormon at an Aug. 17 Health and Human Services Commission meeting

Many of the group’s children depend on round-the-clock care paid for through a Medicaid waiver program known as Community Living Assistance and Support Services. This year’s state budget would slightly increase base caretaking wages, which advocates initially saw as a win after fighting to achieve it amid years of shortages, chaos and crises across the state’s Medicaid programs.

But it carried an unintentional consequence: shuffling funds took money away from the overtime hours that make up a big chunk of caretaker salaries. And in this program, most of the caretakers were family members who made their sole living through it.

“So many times I've heard, ‘I almost wish they hadn't given the increase,’ which just devastates me,” said Marjorie Costello, chief administrative officer of Disability Services of the Southwest, one of multiple contractors that administers the Medicaid waiver program and has 2,100 clients. About 5,000 total are in the program, she said.

“It just stabs me in the heart because we're trying to do the right thing here. We're trying to get to a livable wage,” she added.

Laurie Sharp demonstrates the wheelchair ramp on her converted van for wheelchair access, a process which took several weeks and cost $30,000. Credit: Julius Shieh/The Texas Tribune

During the 2023 regular legislative session, lawmakers increased the base hourly wage for care attendants from $8.11 to $10.60 as a part of budget appropriations. But this made less money available for overtime hours, which are worth time and a half, making it almost impossible for contracted agencies that provide the program to afford paying for extra hours.

The CLASS program hinges on people being able to work overtime. Many caregivers are the parents and relatives of its recipients, and it’s difficult to find outside care attendants to do so much labor for such a low wage, especially amid a nursing shortage, she said.

We need your help. Credit: Mary May at an Aug. 17 Health and Human Services Commission meeting

To qualify for the Medicaid waiver program, individuals must be diagnosed with a state-recognized condition before age 22 that will “continue indefinitely” and severely limit some combination of their abilities to learn, speak, move, care for themselves or live independently.

For each individual, the state pays for a different amount of caregiver hours; some receive around 20 paid hours per week, while others can receive more than 120 hours depending on the level of care needed. Overtime starts after 40 hours.

“We're having to tell these families that some of them, they're losing $1,500 a month, and they have to bring in a stranger that they have to go and try and find for $10.60 an hour,” Costello said.

For families that can’t find attendants and aren’t able to provide their own care, nursing homes and other assisted living facilities are a last resort, she said.

It may turn into a situation where I now have to put my son into a nursing home. Credit: Stuart Forsburg at an Aug. 17 Health and Human Services Commission meeting

“If they're unable to recruit new people to come take care of them, and they go without care, it means that they have to call 911 to get out of bed. It means that they sit in their own filth because they cannot change themselves,” Costello said. “Worst-case scenario, they die. Second worst-case scenario, they get hospitalized. Third worst-case scenario, they're forced into a nursing home.”

Costello said she hopes lawmakers use a special lawmaking session expected later this year to correct the issue by raising the average wage for attendants rather than just the base wage.

State Rep. Donna Howard, D-Austin, said that when she pushed for minimum wage increases in the Texas House this year, no one brought forward this potential consequence. She said she originally had pushed for a $15 base wage, but $10.60 was the legislators’ compromise. Howard formerly worked as a critical care nurse.

“You try to take a step forward, and it feels like you take at least another one or two steps backwards,” Howard said. “It was unintentional due to a lack of sufficient knowledge here on the part of legislators about how we need to address this. The service that these parents are providing is not only taking care of their family, but also reducing the overall cost of the state. And for us to not recognize that is dreadful. It's irresponsible.”

Howard added she thought someone, especially the state agencies involved, should have notified legislators that this might happen.

Laurie and Kari lift Logan onto a sling, which Laurie says is nearly impossible to operate with only one person. Many parents in the program feel skeptical the small wage increase would help find outside care attendants. Credit: Julius Shieh/The Texas Tribune

The search for help

Based on testimony from this year’s regular legislative session, the Health and Human Services Commission expected the raise “would result in an ability to recruit and retain additional attendants, resulting in less need for overtime and increased client well-being and safety,” spokesperson José Andrés Araiza said in a statement.

But many parents in the program feel skeptical about the ability to find attendants with such a small increase, citing the rates at national fast food chains as competition.

“It’s more profitable to go work at Burger King and McDonald's,” said Eileen Davis, a 63-year-old who is her 29-year-old son’s main caregiver since he had a stroke at birth. She has struggled to find any other care attendants for him since the pandemic began. He qualifies for 70 hours of care and she can only take care of him for 40 hours, so she has to find someone to fulfill the other 30 hours.

Her son Blake cannot use his legs or right arm, has a seizure disorder and is intellectually disabled. Davis put him on the waitlist for the waiver program when he was a toddler, and he waited nine years before he was admitted to the program.

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

“We’ve had several people come out through the years. One person, she lasted one day, and then she just didn't come back. And I don't know why, she just didn't answer a phone call. I guess it wasn't what she thought it would be,” Davis, who lives in Heath, added.

Davis’ day includes helping transfer her son in and out of his wheelchair when he sits on the couch or lays in bed, as well as helping him eat and use the bathroom. In the time in between, she said her son likes to watch movies on Netflix and enjoys playing music on his iPad, but she also tries to take him outside every day.

“She does fine,” Blake Davis said of his mother’s care.

Eileen Davis said it’s important to her to find an attendant because she wants her son to still have care when she isn’t physically able to provide it. She said she’s put advertisements online but hasn’t found anyone.

“I just pray to God that my body can hold out long enough to do this for several more years,” she said.

Families cutting costs

Official pay changes went into effect Sept. 1, and the first lowered paychecks will go out in the weeks after, but families aren’t sure what to expect.

Deborah Joslin, 61, takes sole care of her daughter, Katie, who is 33 years old and has Down syndrome. Joslin, 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 quit her job.

Deborah Joslin and her daughter Katie Joslin stand in front of their North Austin home. Joslin has solely lived on the income made taking care of Katie. Now, she’s “not sure” what will happen once the pay reduction hits. Credit: Julius Shieh/The Texas Tribune

Since then, she’s solely lived on the income made taking care of Katie, who qualifies for 62 hours of care per week.

“When we punch out at the end of the day, we still have a full-time job. We don't leave our kids when we stop clocking hours,” said Joslin, who lives in Austin. “I've already warned my landlord, who luckily I've had for 20 years, that I don't know if I'm going to have the rent at all. I'm going to have to start looking for other sources because no matter what, I have to keep the electric and the gas on for Katie.”

Joslin said she’s “not sure” what will happen once the pay reduction hits, but she has considered moving to New York where some of her relatives live.

“I don't know how I would get there, and I don't know how I would get my belongings there. But if we can't stay here, we have to go somewhere,” she said.

Laurie Sharp is the main caregiver for her 20-year-old daughter, Logan, who uses a wheelchair and a feeding tube. Logan has multiple respiratory illnesses that require her to do breathing treatments throughout the day. Sharp, 62, quit her job as a truck driver of 37 years to provide full-time care for her daughter.

Now, Sharp said she’s buckling down to save ahead of losing money in her paycheck. She canceled their cable and lawn care, and she’s been “very cautious” at the grocery store when picking out food.

“I’ve made sure that I paid off as much debt as I could with what I had in savings, to try and cover everything,” said Sharp, who lives in Pflugerville.

She said her daughter has benefited so much from the program but will lose some parts of her care, including additional nursing hours she has as a part of a separate program, once she turns 21. Sharp doesn’t have the option to leave Logan unattended and look for a job, and she’s had trouble finding others she trusts to take care of her daughter.

Laurie tucks Logan into bed, giving her a kiss on the forehead. Sharp said she’s buckling down to save ahead of the loss of money in her paycheck. Credit: Julius Shieh/The Texas Tribune

In the meantime, Sharp said, Logan will continue receiving physical therapy and going to the nearby park with her when the weather allows — one of her favorite activities.

As for assisted living facilities, it’s unthinkable, Sharp said.

“Over my dead body,” she said.

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This article originally appeared in The Texas Tribune at https://www.texastribune.org/2023/09/11/texas-parents-disabled-caregiving/.