Advocates for Texans with Disabilities Press for Increased Caregiver Pay

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MANVEL—It has been both a blessing and a nightmare since Marisa Luparello placed her 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 moved from hotels to staying with family members but were unable to secure permanent housing.

The unstable living conditions took their toll on Blaine, who thrived on routine. Without routine, he would have outbursts that could become physical.

“She went crazy and wouldn’t get out of my car, she kept attacking me, so I had to get her somewhere where she could get stabilized and kind of get back to normal,” Luparello said. “That was the hardest thing. She’s my baby.”

Having dysautonomia, a nervous system disorder that causes her to occasionally faint, a husband who travels frequently for work, and a college daughter who struggles with lupus, the woman needed help.

When she arrived in the Houston area, she placed her son in intensive care and a 24/7 group home designed to establish routines and provide rehabilitation careSuch as nursing services, behavioral support and dietary services.

Luparello is part of a collective of Texas families, providers and community leaders who say the state is failing to provide and fund quality care for people with intellectual and developmental disabilities, either in the home or through community services. They are asking state lawmakers to raise wages for direct support professionals, caregivers, whose base hourly wage in Texas is $10.60 — a rate advocates say is insufficient to recruit and retain quality staff.

“As DSP income falls below the poverty line, we are inevitably seeing rising costs for local governments and taxpayers, leading many to turn to public assistance programs. Investing in our DSP workforce is not just an act of compassion. It is the only fiscally sound approach for Texas communities,” Charles Njuguna, president and CEO of The Center For Pursuit, said at a joint press conference with his leaders last week. Houston Down Syndrome Association, Avondale HouseAnd Time to Care Coalition.

‘We cannot ignore this risk’

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

“When individuals with IDD do not have appropriate support, they may end up in situations such as homelessness, hospitalization, or even incarceration, which further burdens state social services and emergency resources,” he said. “We cannot ignore this risk.”

The Home and Community-Based Services Waiver Program, enacted in 1981, was designed to provide alternatives to institutional care, which was previously the only long-term care covered by Medicaid.

“The advantage is that you can live in your own community instead of going to an isolated government facility,” said Beanca Williams, regional IDD director. Texas Volunteers of America.

When Bill No. 1When the general appropriations bill was introduced in the 2023-24 legislative session, representatives from the Texas House of Representatives initially proposed a $15 hourly wage increase; the Senate proposed $11 hourly, leading many advocates to assume they would fall somewhere in the middle, said Steve Vetrano, CEO of Texas House of Representatives. Avondale HouseThe House and Senate agreed on $10.60.

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

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

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

The $10.60 rate effective September 1, 2023, is up from the previous $9.53 per hour rate. It still reflects a significant difference compared to the increased base wage of $17.71 per hour for DSPs in State Supported Living Centers. A report from Time to Care TexasA coalition of Texas-based organizations and community leaders who advocate for the IDD community.

“We just want some capital,” Njuguna said. “If they would pay us the same amount they pay for government facilities, we would be grateful.”

August White paper report The Texas Conservative Coalition Research Institute estimates that the legislature will need to allocate about $225 million in the next two years to provide DSPs in community-based settings with pay parity with those in state-run Supported Living Centers.

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

The report also states: Entry-level jobs in fast food and convenience stores are more competitive and less desirable than DSP jobs, the report notes. Large retailers typically pay $15 to $20 or more per hour and offer attractive benefits such as paid time off, full health insurance and college tuition reimbursement.

Lawmakers hoped the increase would alleviate staffing shortages, but data from September 2023 to February 2024 shows the minimal increase has failed to attract more staff. Staff vacancy rates in home and community-based settings have increased by 4% this year from 2021, and 179 HCS homes and 50 Urgent Care Facilities surveyed closed between January 2023 and February 2024 due to lack of funding, according to one study. Report from Time to Care TexasAn advocacy group for Texans with IDD.

The report also predicts that another 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 Human Services Committee heard similar concerns last Tuesday.

“This instability leads to errors and oversights in care delivery and difficulties meeting regulatory requirements,” said Carole Smith, executive director of the Texas Association of Specialty Healthcare Providers, which represents for-profit and nonprofit organizations that provide community-based services to the IDD population.

Smith also noted that the qualifications and basic responsibilities of DSPs at state-supported living facilities are the same. The only difference, he said, is that 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, suggested the legislature create 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.

The committee members who participated agreed with advocates that working conditions for the IDD community need to improve, particularly focusing on how to reduce the large eligibility list that requires 15 years before someone can get help. Texas led the nation with the most people with IDD on the eligibility list in fiscal year 2023, with more than 311,000, Kaiser Family Foundation survey to create.

“We must do better,” said the Representative. Sugar NobleR-Lucas.

Home and community-based services are more cost-effective for the state and are often less than half the cost of nursing home care. Centers for Medicare and Medicaid Services.

The health and human services section of HB1 included significant funding for mental health services, including in the House of Representatives. Tony RoseThe D-Dallas politician, who serves as the committee’s vice chair, said the committee is not prioritizing the IDD community.

“When we separate IDD and mental health, IDD gets lost in the shuffle… This state needs to do more in this area,” he said. “We need to focus on the IDD population as much as we focus on mental health.”

Noble said he is considering re-introducing 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 group home in the La Porte area, does his laundry, packs him a weekly lunch and fruit, and sends him off with children’s DVDs to keep him as calm as possible.

“As a mother, it’s hard to know that you can’t physically handle it and you have to do this,” Luparello said. “I hate it.”

ICF and Arc of Texas have been financial supporters of The Texas Tribune, a nonprofit, nonpartisan news organization funded in part by donations from members, foundations and corporate sponsors. Financial supporters have no role in the Tribune’s journalism. List of them is here.

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

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