Families and advocates for disabled Texans push for pay raise for caregivers

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MANVEL — It’s been a blessing and a nightmare since Marisa Luparello placed her son Blaine, now 25 and with 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 went from hotels to staying with relatives, but were unable to settle into permanent housing.

The unstable living situation affected Blaine the most, as he lives by routine. Without it, he had outbursts that turned physical.

“He got mad and wouldn’t get out of my car, he was attacking me all the time, so I had to take him somewhere where he could be stabilized and get some normalcy back,” Luparello said. “That was the hardest thing. He’s my baby.”

She had her own health issues related to dysautonomia, a nervous system disorder that causes her to occasionally faint, a husband who travels frequently for work and a daughter in college battling lupus, so she needed help.

Once in the Houston area, she placed her son in a 24-hour intensive group home designed to create a routine and provide rehabilitative care such as nursing services, behavioral support and dietary services.

Luparello is part of 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 in the home or through community-based services. They are asking state lawmakers to increase wages for direct support professionals, caregivers whose base hourly wage in Texas is $10.60 — a rate advocates say is inadequate for recruiting and retaining quality staff.

“Inevitably, we see rising costs for local governments and taxpayers as DSP revenues fall below the poverty line, driving many of them to turn to public assistance programs. Investing in our DSP workforce is not just a matter of compassion. It is the only financially sound approach for Texas communities,” said Charles Njuguna, president and CEO of The Center For Pursuit, last week at a joint press conference with leaders of the Down Syndrome Association of Houston, Avondale House and the Time to Care Coalition.

“We cannot afford to ignore this risk”

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

“When people with intellectual disabilities lack adequate support, they can end up in situations that lead to homelessness, hospitalization, and even incarceration, placing an additional burden on our state’s social services and emergency resources,” she said. “We cannot afford to ignore this risk.”

Since its enactment in 1981, the Home and Community-Based Services Waiver Program was designed to provide alternatives to institutional care, which was previously the only long-term care reimbursed by Medicaid.

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

When House Bill No. 1, the omnibus appropriations bill, was introduced in the 2023-24 legislative session, Texas House representatives initially proposed a $15-an-hour wage increase; the Senate proposed $11 an hour, leading many advocates to assume they would end up somewhere in the middle, said Steve Vetrano, executive director of Avondale House. The House and Senate agreed on $10.60.

“We were all a little discouraged when we heard the news,” Vetrano said.

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

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

The $10.60 rate took effect on Sept. 1, 2023, representing an increase from the previous $9.53 per hour. It still reflects a sizable gap compared to a base pay increase of $17.71 per hour for DSPs at State Supported Living Centers, according to a report by Time to Care Texas, a Texas-based coalition of community organizations and leaders advocating for the IDD community.

“We would just like to have some equity,” Njuguna said. “If they could pay us the same as they pay state facilities, we would be grateful for that.”

An August white paper report from the Texas Conservative Coalition Research Institute estimates that the legislature would need to allocate approximately $225 million in the next biennial budget for DSPs in community settings to achieve pay parity with those in State Supported Living Centers.

“Waiting until fiscal year 2026 (more than 12 months from now) to address this issue is unsustainable,” the report said.

The report also notes that entry-level jobs in fast food establishments and grocery stores are more competitive than jobs in retail establishments, making these jobs less desirable. The report notes that large retailers typically pay $15 to $20 per hour or more, with attractive benefits such as paid time off, full health insurance and college tuition reimbursement.

Lawmakers hoped the increase would address staffing shortages, but data from September 2023 to February 2024 show the minimal increase failed to attract more workers. Staff vacancy rates at homes and community settings increased 4 percent this year from 2021, and 179 HCS homes and 50 immediate care centers surveyed closed between January 2023 and February 2024 due to lack of funding, according to a report by Time to Care Texas, an advocacy group for Texans with IDD.

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

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

“We must do better”

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

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

Smith also noted that the basic qualifications and responsibilities of DSPs at a state supported living facility are the same. The only difference, she said, is that state supported living facilities have more staff than home and community-based services homes.

Sabrina Gonzalez Saucedo, deputy director of public policy and advocacy for The Arc of Texas, recommended that the legislature establish a dedicated revenue stream, such as a tax or specific 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 on the need to improve working conditions for the IDD community, focusing especially on how to reduce the large interest list that would take 15 years before someone could receive assistance. Texas led the nation with the largest number of people with IDD on its interest list in fiscal year 2023, with more than 311,000 people, according to a Kaiser Family Foundation survey.

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

Home and community-based services are more cost-effective for the state, typically costing 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 significant funding for mental health services, something Rep. Toni Rose, D-Dallas, who serves as vice chair of the committee, said deprioritized the IDD community.

“Once we separated intellectual development disorders and mental health, intellectual development disorders just kind of fell into the shadows… this state really needs to do more in that area,” she said. “We really need to focus on the intellectual development disorders population as much as we focus on mental health.”

Noble said he intends to reintroduce the bill.

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

Every Sunday she picks him up from his group home in the La Porte area 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 for a mother to know that you physically can’t handle it and you have to do this,” Luparello said. “I hate it.”

ICF and the Arc of Texas have been financial supporters of The Texas Tribune, an independent, nonprofit news organization that is funded in part by donations from members, foundations and corporate sponsors. Financial supporters play no role in Tribune journalism. A complete list of supporters can be found here.

This article first appeared on Houston Landing and is republished here under a Creative Commons license.

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