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United They Stand

12-year-old Victor Leeman has cerebral palsy, epilepsy and scoliosis; he’s legally blind; and he has no known syndrome to account for his challenges. His story isn’t unlike others that have recently made news. In fact, his story did make local NBC 5 in April of this year. That’s because the Colleyville preteen requires full-time care, which comes with a very hefty bill: Last year, his family’s private insurance covered about $317,000 of his medical expenses. Medicaid paid another $300,000. Yet now with Medicaid funding’s uncertain future, Victor’s care comes with lots of question marks.
But Victor’s mom and so many other parents of kids with special needs — all of whom depend on Medicaid for at least some help — aren’t content to wait and see.
Caring for her son has been Laura Leeman’s full-time job since he was born, and with the proposed Medicaid cuts, advocating for medically fragile children and those with disabilities tops her daily to-do list. “There are a lot of misconceptions about who is using Medicaid,” she says. “I’m not afraid to say, ‘This is not right!’”
You may recognize her name. Leeman speaks to small groups and at meetings around town about the issues Texas’ fragile kids face since the state privatized Medicaid and handed over the contracts to private insurance companies. She appeared in a segment on NBC 5 about how some parents (not her) have had to institutionalize their children with special needs as a result of a lack of funding, and she was even a guest speaker at a Bernie Sanders rally at the Verizon Theatre at Grand Prairie.
Leeman schedules appointments with policymakers whenever she can. Sen. Ted Cruz’s regional office is near Texas Scottish Rite Hospital for Children in Dallas, where her son goes for regular therapy treatments — so she’s become a regular in his office too.
And when she’s not in front of people physically, she makes sure she is virtually. Leeman uses social media platforms like Twitter to amplify her message, using hashtags like #Medicaid- Matters and #MedicaidSavesLives in the posts she shares. Follow her, and you can retweet the slides she creates such as one that reads: “My son didn’t ask for his health to be so challenging. In spite of it, he smiles.”
She also serves on the leadership team of Protect TX Fragile Kids, a nonprofit started last year as a coalition of parent-advocates that has now grown to over 1,500 members. The group has been at the forefront of the Medicaid conversation in Austin and was formed in response to STAR Kids, a Medicaid managed care program that went into effect a year ago and has proven to be problematic for some kids with disabilities.
Positive Steps
Leeman is just one mom in this Medicaid funding battle, and her efforts (and those of others like her) might just be working. In the 2015 Texas legislative session, pediatric therapies for kids with disabilities saw drastic cuts. The Medicaid reimbursement rates of acute therapy services were reduced — a $350 million funding cut — which put a huge financial strain on speech, occupational and physical therapists. As a result, clinics and private practices were quietly shuttered, leaving some children with disabilities or developmental delays without services. In fact, Easter Seals of East Texas (with locations in Texarkana and Bryan), University of Texas Medical Branch in Houston, and Hill Country MHDD Centers in Kerrville all notified Texas Health and Human Services that while they would continue to offer therapy services, they were ending their Early Childhood Intervention partnerships due to financial reasons.
During a special session at the beginning of August, the Texas House passed a measure that would partially reverse this controversial cut. House Bill 25, authored by Rep. Sarah Davis, R-West University Place, would restore about $160 million of that funding. (Editor’s note: As of press time, HB 25 had been received by the Senate at the end of the special session, but no action was taken before the session ended on August 15. Unless a second special session is called—which is highly unlikely—the bill will die simply because lawmakers ran out of time.)
Hurdles Remain
Even while this partial reversal began to take shape, the 85th Legislature presented setbacks for organizations like Protect TX Fragile Kids fighting for Texas’ kids with special needs. Senate Bill 1927 would have increased transparency in STAR Kids’ managed care programs by making data regarding enrollment and services publicly available. The bill sailed through the Senate and even passed through the House committee on human services. However, SB 1927 never went to the House floor for a vote; it got lost in the House Calendars Committee. A committee member had anonymously tagged the bill, which prevented it from being added to the full legislative calendar. And just like that a bill does not become a law.
As a group, Texas children with special needs stand to lose even more in the national conversation surrounding Medicaid and the future of their health care.
“The [original] cuts made by the Texas Legislature amounted to $350 million over a two-year period,” says Adriana Kohler, the senior health policy associate at Austin-based Texans Care for Children. “[The U.S. Senate’s] Better Care Reconciliation Act (BCRA), which failed in late July, would have cut Texas Medicaid by over a billion dollars each year.”
Under BCRA, Medicaid would have been slashed by roughly $772 billion, largely through per capita caps. With per capita caps, an average amount of medical benefits is calculated per enrollee and then capped at that amount. The average funds per enrollee are bundled together and then issued as a lump sum to each state. Because these funds are not set to grow with inflation, nor with the cost of medical expenditures, over time, federal Medicaid spending would have shrunk — by $772 billion, according to BCRA. While anyone’s health care spending can vary significantly from year to year, children with complex medical needs often require care that far exceeds these averages.
To put it into perspective, Victor’s lifetime limit was set at $2 million. He hit $600,000 when he was 3, Leeman says.
For Texas, the passage of BCRA would have meant a loss of $10.5 billion in federal Medicaid funding between 2020 and 2026.
For their part, the Congressional Budget Office concluded in their June 2017 report that states would have to “commit more of their own resources, cut payments to health care providers and health plans, eliminate optional services, restrict eligibility for enrollment or adopt some combination of those approaches” under BCRA.
Children who rely on Medicaid waiver programs to receive in-home care would be an especially vulnerable population to annual and lifetime caps, rewritten formularies, income requirements and more. There are approximately 19,000 cases on the interest list (what Health and Human Services calls the waiting list) for the Medically Dependent Children Program (MDCP), which provides aid for children with extreme maladies who require round-the-clock nursing facility care. These cases can take months or even years to process. So in the event of a significant Medicaid funding shortfall, the waiting list could grow exponentially.
But even with BCRA’s summer failure, 43-57, with nine republicans and all democrats opposing it, Medicaid funding issues still hit Texas families hard.
Feeling the Effects
After the rollout of STAR Kids last November, Jennifer Hall’s 9-year-old son, Preston, who has craniofacial disorder and a genetic disorder that affects multiple systems and causes developmental delays, lost his pulmonary physician because the provider was not willing to accept any STAR Kids plans “due to previous issues with reimbursements.” The Grapevine family had to find a new pulmonologist, one who was in-network. They also experienced a delay in getting continuous positive airway pressure (CPAP), a ventilator that uses a steady stream of air to hold Preston’s airways open and help him breathe while he sleeps. The delay in getting approval for CPAP triggered a behavioral and emotional regression in school. “He wasn’t sleeping [well] at night, which meant bringing in more aide time and more time in special education,” says Hall, who is also the director of Protect TX Fragile Kids.
And more recently, in July, Preston was denied renewal of occupational therapy and speech feeding therapy “for the first time ever,” Hall laments. They are currently in the process of appealing.
Arlington mom Holly D. Gray likes the current Cook Children’s Health Plan caseworker assigned to her 9-year-old daughter Caleigh, who has short bowel syndrome and cerebral palsy. But after a trip to Boston Children’s Hospital (a national hub for rare, childhood diseases) in April, Caleigh’s pediatrician had to rewrite all the orders and prescriptions Caleigh received there, as Texas Medicaid doesn’t cover out-of-state services, her mom explains.
Matt Cobb’s 8-year-old twins both have muscular dystrophy. One of the boys, William, requires a trach and a ventilator, which must be replaced monthly. Primary insurance doesn’t cover the ventilator but Medicaid does at $3,000 a month. The Arlington family also keeps a backup ventilator, in case the regular one fails — another $3,000. “Beyond that, are several thousand dollars more each month in supplies and services (including therapy and nursing),” Cobb reveals. And those are the costs for just one of his sons. “It would be financially devastating not to have these resources.”
Before STAR Kids took effect, parents were invited to attend question-and-answer sessions hosted by Health and Human Services. It was at these sessions that parents like Hall and others started talking to one another and sharing their issues with the program.
This network of parents began to grow — and act — reaching out to elected representatives in Austin, networking with other parents across the state, and in a few short months, this grassroots group became Protect TX Fragile Kids.
They hosted a rally in Austin last March and met with lawmakers. The goal? Visibility; participants wore red. Leeman, Victor, a few friends, Victor’s nurse and all of his critical support medical equipment attended. One family from San Antonio brought their son in his medical bed.
Strength in Numbers
For most of these parents, advocating on behalf of their child is nothing new. From the day they received the diagnosis, they organized a team of health care providers and navigated the morass of insurance legalese. But for many, banding together with other parents for a larger cause is something new.
“It’s not complicated,” says Hannah Mehta, Protect TX Fragile Kids’ executive director and a Flower Mound mom whose son, Aiden, a triplet, has a combination of birth defects including digestive and respiratory issues. “It’s a mistake to make the needs of these children a health care issue. It is a moral issue.”
And so these parents started telling their stories, first to each other, then to friends and neighbors, always expanding their circle of influence.
“People can do small things that turn into big things,” explains Jill Bradshaw, an Austin mom with a 4-year-old daughter who has Charge syndrome and is deaf-blind. “I knew nothing when my daughter was born, but I got to know a lot of families, see their hardships, hear about their daily struggles.” She never set out to be a parent-advocate, but now she serves on the board of Allen-based Texas Chargers, Inc., an organization for those living with Charge syndrome. She’s also on the leadership team of Protect TX Fragile Kids. “I’m here because other families can’t be.”
Hall reaches out to other parents of medically fragile children. “[I encourage them] to become advocates, to keep their children from losing their specialized care teams and services,” she says. She became a parent-advocate out of necessity. “I felt no one else was speaking for my son, for our family or families like ours.”
Mara LaViola, whose 14-year-old son has autism, cerebral palsy, epilepsy and a mitochondrial disorder, has been active in public advocacy for over a decade. “You don’t have to be incredibly articulate,” the Frisco mom explains. “Speak from the heart.”
Steps To Making a Difference
Join a group and be informed. Whether it’s finding a disability-specific support group like Bradshaw did when she joined Texas Chargers or a more politically active organization, joining a group connects you with other parents who understand your journey and who can help put you in touch with resources and information.
Put your talents to work. Gray, an artist, started an ongoing “One Day” project. She photographs a tray filled with 24 hours of medical waste from one child and turns the visual statements into postcards she sends to legislators — with an explanation of the image.
Start a relationship with your representatives. “If you can go [to Austin], go,” LaViola advises. If you can’t, get to know your local representatives when they’re at their home offices. “Make appointments to see them and introduce them to your child,” she adds.
Share your story. Keep a draft of your personal statement handy. You can use it as a template for letters you draft to elected officials. And when Medicaid makes the news, use your statement as a calling card to send to local media outlets.
Leeman calls her representatives whenever she gets a moment. “I was so nervous [when I first started calling],” she laughs. “Now I call when I’m sweeping the floor or vacationing on the beach.”
It would be tempting to think that with the failure of BCRA, the threat to Texas Medicaid is over. But the truth is, the future of Texas Medicaid is still so uncertain. Baby steps like the one made in the House help, but it’s not enough. And so even after a long day of caring for her son, Leeman sits down, not to relax, but to tweet #MedicaidMatters on his behalf or to post calls to action on various pages. “The fight never ends!” she says.