As disabled Texans wait for services, low caregiver wages worsen staffing shortages

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The state of Texas manages a waiting list of residents with intellectual and developmental disabilities seeking services that currently has close to 130,000 people on it. Many wait for a decade or longer to get into a group home or day program.

That’s in part because the agencies that provide those services are facing a critical shortage of caregivers to work with them.

Texas reimburses those agencies $10.60 an hour for caregivers and most pay that rate or only slightly higher to employees who work directly with some of the state’s most vulnerable residents.

During the last legislative session, state lawmakers raised the pay of these community-based caregivers — who provide care in people’s homes, group homes and day care centers — to $10.60 from $8.11 an hour. But it also raised pay for workers at state hospitals and state-supported living centers to a minimum of $17.50 an hour in an effort to fill critical staffing shortages at those institutions.

That pay imbalance led some community-based caregivers to seek higher-paying state jobs, further impacting the shortage, said Jelynne LeBlanc Jamison, president and CEO of the Center for Health Care Services (CHCS), which provides mental health, developmental disability and substance abuse services for adults, children, older adults and veterans in Bexar County.

Higher pay at state-run institutions was definitely needed, she said. “I just wish, with the [budget] surplus that we’ve been able to enjoy in the state of Texas,” lawmakers also prioritized community-based caregiving of “this very, very vulnerable population.”

“On the backs of caregivers”

Intellectual or developmental disabilities are disorders usually present at birth, although brain injuries can trigger them. They negatively affect an individual’s physical, intellectual and emotional development. These disorders include autism, Down syndrome, cerebral palsy, fetal alcohol syndrome and spina bifida, among others.

While it depends on the severity of the disorder, most people with these disabilities cannot live independently as adults. Many families in Texas sign up for the wait list immediately upon getting a diagnosis for their child, knowing it can be more than a decade before they are eligible for services.

The goal of community-based care, which is far less expensive than institutional care, is to assist this population not only with the tasks of daily living but also with individual goals that will help them live as independently as possible. Depending on the person, that runs the gamut from gaining employment to learning how to use the stove or tie shoelaces.

Problems within Texas’ system of care for people with intellectual and developmental disabilities are well documented. In 2022, the Austin American-Statesman published the results of a yearlong investigation, detailing the “crisis and violence” inside the system, including violations of the rights of caregivers.

The series detailed how the state’s Medicaid waiver system — created more than four decades ago as an alternative to institutional care — “is jeopardizing the safety of thousands of vulnerable clients and their caregivers. Built on the backs of low-paid, overworked and often undertrained caregivers, the system is collapsing from decades of underfunding and lax oversight.”

Making ends meet

In an effort to retain staff and reduce shortages, CHCS has increased its starting pay for community-based caregivers to $16 an hour, among the highest wages for such work in the county. Doing so means the agency, which is funded via the state and Bexar County, runs an annual deficit, Jamison said.

The increase has helped CHCS boost its staffing levels, but it’s still not a living wage.

Kristina Malloy has worked for the agency’s adult day program for the past seven years. She made $11.90 an hour when she started and today earns $16.83 an hour.

Malloy helps clients — whom she and her fellow caregivers most often refer to as “our friends” — safely fill their days with games and music, outings to the mall or Walmart, and volunteering in the community, while also attending to their social and emotional needs.

To make ends meet and save for the house she hopes to buy, Malloy often takes overtime shifts at one of the center’s group homes, working until 9 p.m. Then some nights she delivers for DoorDash until 2 a.m. Malloy prefers DoorDash to Uber because she can take her children, who sleep in the car while she delivers, if she has to.

Malloy dismissed the idea of leaving for higher-paying work. “I could never leave my clients,” she said. She said she appreciates working for CHCS, which offers good benefits, including 401(k) and tuition reimbursement, along with higher-than-average wages.

“Get their bucket filled”

Colleague Charlette Phillips also delivers for DoorDash after hours for additional income. She worked at CHCS for a decade before leaving to work elsewhere for five years. Two years ago, she returned to her role at CHCS.

“My guys brought me back,” she said, motioning toward six clients playing basketball on a recent Thursday morning. Later, they would pile into a passenger van to deliver food for Meals on Wheels. “In all honesty, for what we do, no dollar amount can suffice,” Phillips said. “It’s for their betterment.”

Justin Botter, vice president of long-term care with CHCS, said caregivers are special people who “get their bucket filled” by working directly with clients. But that doesn’t mean they should be underpaid, he said.

A quick scan of available caregiver jobs on Work in Texas, the state’s online job board, shows that most companies pay at or slightly above the reimbursement rate.

At Exclusive Adult Daycare in San Antonio, for example, pay is advertised as $11 an hour. Prospective employees must have six months of experience, a CPR certification, a negative TB test and a food handler certificate, according to the job listing. They must also pass a criminal background check.

Botter said that as rising costs have outpaced reimbursement rates, some companies have left Texas, throwing clients into uncertainty as they are forced to find replacement care.

At every legislative session, families of people with intellectual and developmental disabilities, caregivers and the agencies that hire them rally at the Texas Capitol seeking higher pay for workers. The recent increase to $10.60 was welcome but insufficient, Botter said.

Momentum for a wage increase?

In March, Time to Care, a coalition of caregiver organizations sent a letter to Gov. Greg Abbott and other lawmakers, seeking an emergency appropriation to raise pay from $10.60 to $15 an hour. The letter pointed out that reimbursement rates have fallen “significantly” behind inflation over the past two decades, “jeopardizing the entire IDD service delivery infrastructure and, most importantly, the safety of the IDD population.”

Sam Taylor, a spokesperson with Time to Care, said that while the group hasn’t heard anything official yet about an emergency appropriation, several legislators have gone on record supporting a wage increase.

In April, attorney Henry Gonzalez III wrote a commentary in the San Antonio Report calling the low wages and resulting staff shortages “a full-blown crisis that needs to be addressed immediately to ensure Texans with disabilities who need this specialized care are not left behind.”

Texas House Speaker Dade Phelan has issued interim committee charges ahead of the next legislative session that includes “support for Texans with intellectual disabilities,” but advocates say it’s unclear whether that will include further wage increases.

“[State Rep.] Steve Allison was our biggest champion locally,” said Jamison, “and of course, he was targeted [for not supporting school vouchers], and now he’s out of a job.”

To care for people who have intellectual or developmental disabilities is a critical job, she said. “I think people misjudge the technical requirements to care for them. It really is — I’m trying not to use the word ‘criminal,’ but it really is just unbelievable what you’re asking someone to do for $10.60 an hour.”

Laura Lemkowitz has worked for CHCS for 35 years as a caregiver. She is grateful for the flexibility the job has given her over the years. While her three children were in school, she worked weekend overnight shifts. She took time off when her husband was sick with Stage 4 cancer.

“The center has been good to me,” she said, but it was only because of her husband’s income — and her ability to economize — that she has been able to do the work she loves for so long. But Lemkowitz said she couldn’t encourage others to follow in her footsteps, even at $16 an hour.

“I get paid the same as a new hire,” she said. “And I’ve been here 35 years. That hurts.”

Disclosure: DoorDash has been a financial supporter of The Texas Tribune, a nonprofit, nonpartisan news organization that is funded in part by donations from members, foundations and corporate sponsors. Financial supporters play no role in the Tribune's journalism. Find a complete list of them here.

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