Families and advocates for disabled Texans pushing for caregiver pay raise

It has been a blessing and a nightmare ever since Marisa Luparello placed her now 25-year-old son Blaine, who has autism, attention-deficit/hyperactivity disorder and bipolar disorder, in a group home nearly 13 years ago.

After Hurricane Katrina flooded their family home in Metairie, Louisiana, they struggled to find a place to rent. Instead, they bounced from hotels to staying with family members, but couldn’t settle into permanent housing.

The unstable living situation most affected Blaine, who thrives on routine. Without one, he’d have outbursts that would turn physical.

“He went ballistic and wouldn’t leave my car, attacked me all the time, so I had to get him somewhere where he was stabilized and able to get some kind of normalcy,” Luparello said. “That was the hardest thing. He is my baby.”

With health issues of her own dealing with dysautonomia, a nervous system disorder that causes her to occasionally pass out, a husband who travels frequently for work, and a daughter in college who struggles with lupus, she needed help.

Once in the Houston area, she placed her son in an intensive, round-the-clock group home designed to create routine and provide habilitation care, such as nursing services, behavioral support and dietary services.

Luparello is among a collective of Texas families, service providers and community leaders who say the state has failed to provide and fund quality care for people with intellectual and developmental disabilities at home or via community services. They are calling on state legislators to raise wages for direct support professionals, caregivers whose base hourly wage in Texas is $10.60, a rate advocates say is inadequate to recruit and retain quality staff.

“We inevitably see increased costs to local governments and taxpayers because DSP income falls below the poverty line, prompting many of them to turn to public assistance programs. Investing in our DSP workforce isn’t just compassionate. It’s the only financially sound approach for Texas communities,” Charles Njuguna, president and CEO of The Center For Pursuit, said last week at a joint press conference alongside leaders of the Down Syndrome Association of Houston, the Avondale House, and the Time to Care Coalition.

‘We cannot afford to overlook this risk’

The lack of investment also poses a significant public safety risk, said Michael Roberts, executive director of Down Syndrome Association of Houston.

“When individuals with IDD lack proper support, they can end up in situations that lead to homelessness, hospitalization, and even incarceration, which further burdens our state’s social service and emergency resources,” he said. “We cannot afford to overlook this risk.”

Since it was enacted in 1981, the Home and Community-based services waiver program was designed to provide alternatives to institutional care, which previously was the only long-term care reimbursed by Medicaid.

“The benefit is that you get to live in your community versus going into a state institution that is isolated,” said Beanca Williams, regional IDD director of Volunteers of America Texas.

When House Bill No. 1, the general appropriations bill, was introduced in the 2023-24 legislative session, Texas House representatives initially proposed $15 an hour wage increase; the Senate proposed $11 an hour, leading many advocates to presume they would land somewhere in the middle, said Steve Vetrano, the CEO of Avondale House. The House and Senate settled on $10.60.

“We were all kind of deflated when we heard the news,” Vetrano said.

The burden instead falls on local nonprofits, which rely on donor funding, to make up the difference. Avondale House offers its DSPs a starting rate of $13 an hour.

“We’ve had to triple our fundraising to cover our costs, and that’s still not covering all of our costs,” Vetrano said. “It’s a struggle.”

The $10.60 rate went into effect Sept. 1, 2023, is up from the previous $9.53 an hour. It still reflects a sizable gap compared to an increased base wage of $17.71 an hour for DSPs at State Supported Living Centers, according to a report from Time to Care Texas, a coalition of Texas-based organizations and community leaders advocating for the IDD community.

“We’d just like some equity,” Njuguna said. “If they could just pay us the same thing they pay the state facilities, we’d be grateful for that.”

An August white paper report by the Texas Conservative Coalition Research Institute estimates that the legislature would need to appropriate approximately $225 million in the upcoming biennial budget for DSPs in community-based settings to achieve wage parity with those in State Supported Living Centers.

“Waiting to address this issue until FY 2026 — more than 12 months from now — is untenable,” the report says.

The report also states that entry-level jobs at fast food and grocery stores are more competitive than DSP jobs, making these jobs less desirable. The report points out that large retailers typically pay between $15 to $20 an hour or higher with attractive benefits, such as paid time off, full health insurance and college tuition reimbursement.

Lawmakers hoped the increase would address staff shortages, but data from September 2023 through February 2024 shows the minimal increase failed to attract more workers. Staff vacancy rates at home and community-based settings increased 4 percent this year since 2021, and 179 HCS homes and 50 Immediate Care Facilities surveyed closed between January 2023 and February 2024, due to a lack of funding, according to a report from Time to Care Texas, an advocate group for Texans with IDD.

The report also predicts that an additional 92 HCS homes and 34 ICF facilities will close by the end of the year.

“How can providers operate?” Njuguna said. “We are putting one of our most vulnerable populations at risk.”

‘We must do better’

The Texas House Committee on Human Services heard similar concerns last Tuesday.

“The instability leads to errors and oversights in service delivery and challenges in meeting regulatory requirements,” said Carole Smith, executive director of Private Providers Association of Texas, which represents for-profit and nonprofit providers of community-based services to the IDD population.

Smith also pointed out that the qualifications and core responsibilities for DSPs in a state supported living center are the same. The only difference, she said, is state supported living centers have more staff than home and community based service homes.

Sabrina Gonzalez Saucedo, deputy director of public policy and advocacy at The Arc of Texas, recommended the legislature establish a dedicated revenue stream, such as a specific tax or fund, and an IDD coordinating council to oversee, coordinate and improve the quality of care for people with intellectual and developmental disabilities in Texas.

Committee members in attendance agreed with advocates with the need to improve working conditions for the IDD community, particularly focusing on how to reduce the large interest list that would take 15 years before someone can receive assistance. Texas led the nation with the most people with IDD on its interest list in fiscal year 2023, with more than 311,000 individuals, a Kaiser Family Foundation survey found.

“We must do better,” said Rep. Candy Noble, R-Lucas.

Home and community-based services are more cost-effective for the state, typically less than half the cost of residential care, according to the Centers for Medicare and Medicaid Services.

The health and human services section of HB1 saw major funding for mental health services, something that Rep. Toni Rose, D-Dallas, who serves as the vice chair of the committee, said it deprioritized the IDD community.

“Once we separated IDD and mental health, IDD just got lost in the shuffle…this state really needs to do more in that area,” she said. “We really need to focus on the IDD population just as much as we focused on mental health.”

Noble said she intends to refile the bill.

Luparello hopes this legislative session will bring about change that will benefit her son’s care.

Every Sunday she picks him up from his La Porte-area group home to do his laundry, pack him lunches and fruit for the week, and sends him off with children’s DVDs to keep him as calm as possible.

“It’s hard as a mom knowing that you physically can’t handle him and you have to do this,” Luparello said. “I hate it.”