Need for Medicaid aid high in rural districts
Disabled Texans are left on long waitlists
State Rep. Gary VanDeaver didn’t know his legislative district near the Oklahoma-Arkansas border had the most Texans per capita waiting for intellectual and developmental disability services, but he isn’t necessarily surprised.
His district — which includes Lamar, Red River, Bowie and Franklin counties — has a poverty rate higher than the state average. His constituents have less access to doctors.
“The rural nature of this district, and the social economics of this district, is just a perfect storm,” said VanDeaver, a Republican from New Boston. “For individuals with challenges, there’s just not the resources for them.”
A Houston Chronicle investigation published in July found that there are nearly 200,000 disabled Texans waiting for care through one of the six Medicaid waiver programs for individuals with disabilities, which use state and federal funds to get people care in the community instead of in an institution. Some have waited nearly 20 years.
The problem, experts say, is that lawmakers have repeatedly failed to fund waiver programs appropriately to meet the needs of disabled Texans.
Data recently obtained by the Chronicle breaks down the waitlists by legislative district, giving one of the first glimpses of where the most people are waiting for help: rural areas, where poverty rates are high and services are scarce.
The 10 districts with the most people per capita waiting for a waiver in fiscal year 2021 have poverty rates that are sometimes 120 percent higher than the state average of 14.7 percent, according to an analysis of the 2015-2019
American Community Survey data by the Texas Legislative Council.
And lawmakers who represent these districts consistently vote for legislation that supports the intellectual and developmental disability community.
VanDeaver voted in favor of 84 percent of the 25 legislative measures examined by the Chronicle since the 2015 session.
He said he tries to use a “common-sense approach” when voting on topics from disability to health care to education.
“Some of these pieces of legislation are important and move the needle,” VanDeaver said. “If it seems to be something that would provide an opportunity for people in my district, then I vote for it.”
Three of the districts, including VanDeaver’s, are in Northeast Texas. Four are in the Rio Grande Valley. One includes counties where at least 98 percent of residents live in a primary care desert.
None of the districts includes a major metropolitan city.
In fact, the first Houston district to show up in the data was in 60th place – Rep. Senfronia Thompson’s 141st District.
Ashley Ford, an intellectual and developmental disability advocate, was struck by the fact that the districts with the most individuals on the waitlist were in more rural areas, not cities, including urban districts with high levels of poverty.
Poverty and lack of access to health care in rural communities could explain some of the disparities, she said. But she thinks other factors could be at play.
“My leading theory is that it is due to the local community outreach efforts and close-knit community ties” in those areas, said Ford, the director of public policy and advocacy for the Arc of Texas, an organization that advocates for the rights of intellectually and developmentally disabled Texans. “Schools, doctors’ offices and advocacy groups are going to be referring people to get on the list.”
Living in poverty
State Sen. Eddie Lucio Jr. has been hearing from families waiting for Medicaid waiver services for decades.
Since the 1990s, his constituents have filed into his office or left him voicemails, detailing the devastating impact of waiting a decade or more for care.
“It would bother anybody,” said Lucio, a Democrat from Brownsville.
Lucio’s district is one of four in the Rio Grande Valley that have the top 10 most people per capita on the waitlist.
In fiscal year 2021, there were nearly 3,000 people per 100,000 on the waitlist in Lucio’s district, which includes parts of Cameron, Hidalgo, Kenedy, Kleberg and Willacy counties.
Nearly 30 percent of people in his district are living in poverty.
And because that rate is so high, experts say getting private pay services is likely out of the question.
“If you look at the socioeconomic indicators (of the top 10 districts), it would make sense that people in these areas of Texas would need assistance,” Ford said. “Private pay is less of a thing they’re able to do.”
This is especially true because the counties in Lucio’s district have an uninsured rate for people under 65 years old of 21.7 percent to 41.4 percent, according to 2020 data from the U.S. Census Bureau.
Statewide, about 20 percent of people under 65 in Texas were uninsured in 2020, the data shows.
That means they’re forced to wait.
In the face of an ever-growing Medicaid waiver waitlist, the state has invested in safety net services, meant to serve as a stop gap for individuals waiting for a waiver.
But those services, provided on a community level by Local Intellectual and Developmental Disability Authorities, were decimated by a $60 million budget cut from the Legislature in 2011. Experts say they’ve never recovered.
As of March, nearly 170,000 people were waiting for care through a Medicaid waiver program, and about 18,300 were waiting for safety net services.
One of the authorities — the entry points for publicly funded disability programs — that serves Lucio’s district is Tropical Texas Behavioral Health in Edinburg. It had more than 2,600 people waiting for safety net services in March.
“The demand for communitybased services exceeds available resources,” Lucio said.
Lucio knows that his constituents desperately need the help of Medicaid waivers — and his voting record shows it.
The Chronicle examined legislative voting records for more than two dozen bills and budget amendments related to intellectual and developmental disabilities dating back to the 2015 session.
Those measures include creating a Statewide Intellectual and Developmental Disabilities Coordinating Council, developing a questionnaire for disabled people waiting for a Medicaid waiver program to better determine their needs and spending $8 million over two years for a pilot program that would create additional housing for some people who received care through a Medicaid waiver.
Lucio didn’t vote against a single one.
Texas ranks very low nationally on caring for special needs, Lucio said, so he focused on trying to find solutions. “It’s important for me to continue to work and be an advocate on this issue,” he said.
Lucio is retiring this year after three decades in office. But he hopes that lawmakers continue to allocate funds to help people with disabilities next session.
Not all lawmakers appeared to have that approach.
Rep. Matt Schaefer, R-Tyler, voted against 40 percent of the 25 bills and amendments examined.
Schaefer, who could not be reached for comment, had the 35th most people per capita on the waitlist in fiscal year 2021, with nearly 2,000 people per 100,000.
Rep. Tony Tinderholt, R-Arlington, had an even smaller ratio of people on the waitlist, with about 1,300 people per 100,000.
He voted against 44 percent of the measures. Tinderholt could not be reached for comment.
Health care access
While the inability to pay for private services could increase the number of people on the waitlist in each district, so, too, could access to health care in general.
For example, the House district in Northeast Texas recently vacated by state Rep. Chris Paddie had the 10th largest number of people on the waitlist per capita — about 2,700 people per 100,000 in fiscal year 2021.
Two of the counties in his 9th District — Sabine and Shelby — were highlighted in a recent national study that found 98 percent or more of their residents lived in a primary care provider desert.
The study, published last year by researchers with the prescription drug discount platform GoodRx, used data from the Health Resources and Services Administration to find population-to-provider ratios by county. The administration has a target ratio of 3,000 patients per full-time provider.
Sabine County has 7,357 residents per provider, the study found, and Shelby County has 101,408 residents per provider.
Burke, the intellectual and developmental disability authority in Lufkin, serves a portion of the district’s constituents. In a statement, Burke CEO Melanie Taylor said its counties “do have a high population of low income, and most are considered underserved.”
She added that the authority is “very vigilant” in ensuring that its families add their names to the list.
Community outreach
Ford, the advocate at the Arc, grew up in Paris, which is in VanDeaver’s district.
She knows firsthand that the area is a tight-knit community, where residents look out for each other — where families and advocacy groups would implore their fellow Texans to add their names to a Medicaid waiver waitlist, and to do so early.
It explains why VanDeaver’s district had nearly 3,500 people per 100,000 on the waitlist for services in fiscal year 2021, she said — the highest in the state.
Though the poverty rate in the district can’t be ignored at nearly 17 percent, Ford believes it goes beyond that.
The same is true for the other districts with the most people per capita on the list.
Spindletop Center in Beaumont is the local authority that serves Rep. Joe Deshotel’s district, in part of Jefferson County.
Deshotel’s district had nearly 3,100 people per 100,000 waiting for care in fiscal year 2021.
Although the poverty rate is nearly 22 percent, Lisa Gibbs, chief intellectual and developmental disability officer for Spindletop, said community outreach likely is the main reason so many people are on the waitlist in Deshotel’s district.
Spindletop partners with their local Arc of Texas office to promote the list. They reach out to school districts to let them know they can provide referrals to in-house diagnosticians that will help people sign up for the Medicaid waivers.
The last thing they want is for a family to find out about the Medicaid waivers when their child graduates from high school, she said, only to learn they could be waiting for two or more decades for services.
“Every opportunity we have to let people know they need to get on the list as soon as possible, we do,” Gibbs said.