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United They Stand

12-year-old Victor Leeman hascerebral palsy, epilepsy and scoliosis; he’s legallyblind; and he has no known syndrome to accountfor his challenges. His story isn’t unlikeothers that have recently made news. In fact,his story did make local NBC 5 in April of thisyear. That’s because the Colleyville preteenrequires full-time care, which comes with a very hefty bill: Lastyear, his family’s private insurance covered about $317,000 of hismedical expenses. Medicaid paid another $300,000. Yet now withMedicaid funding’s uncertain future, Victor’s care comes with lotsof question marks.

But Victor’s mom and so many other parents of kids with specialneeds — all of whom depend on Medicaid for at least somehelp — aren’t content to wait and see.

Caring for her son has been Laura Leeman’s full-time job sincehe was born, and with the proposed Medicaid cuts, advocating formedically fragile children and those with disabilities tops her dailyto-do list. “There are a lot of misconceptions about who is usingMedicaid,” she says. “I’m not afraid to say, ‘This is not right!’”

You may recognize her name. Leeman speaks to smallgroups and at meetings around town about the issues Texas’fragile kids face since the state privatized Medicaid andhanded over the contracts to private insurance companies. Sheappeared in a segment on NBC 5 about how some parents (nother) have had to institutionalize their children with specialneeds as a result of a lack of funding, and she was even a guestspeaker at a Bernie Sanders rally at the Verizon Theatre atGrand Prairie.

Leeman schedules appointments with policymakers whenevershe can. Sen. Ted Cruz’s regional office is near Texas Scottish RiteHospital for Children in Dallas, where her son goes for regulartherapy treatments — so she’s become a regular in his office too.

And when she’s not in front of people physically, she makessure she is virtually. Leeman uses social media platforms likeTwitter to amplify her message, using hashtags like #Medicaid-Matters and #MedicaidSavesLives in the posts she shares. Followher, and you can retweet the slides she creates such as one thatreads: “My son didn’t ask for his health to be so challenging. Inspite of it, he smiles.”

She also serves on the leadership team of Protect TX FragileKids, a nonprofit started last year as a coalition of parent-advocatesthat has now grown to over 1,500 members. The group has beenat the forefront of the Medicaid conversation in Austin and wasformed in response to STAR Kids, a Medicaid managed careprogram that went into effect a year ago and has proven to beproblematic for some kids with disabilities.

Positive Steps

Leeman is just one mom in this Medicaid funding battle, and herefforts (and those of others like her) might just be working. In the2015 Texas legislative session, pediatric therapies for kids with disabilities saw drastic cuts. TheMedicaid reimbursement ratesof acute therapy services werereduced — a $350 million fundingcut — which put a huge financialstrain on speech, occupationaland physical therapists. As aresult, clinics and private practiceswere quietly shuttered, leavingsome children with disabilitiesor developmental delays withoutservices. In fact, Easter Seals ofEast Texas (with locations in Texarkanaand Bryan), University ofTexas Medical Branch in Houston,and Hill Country MHDD Centersin Kerrville all notified TexasHealth and Human Services thatwhile they would continue tooffer therapy services, they wereending their Early ChildhoodIntervention partnerships due tofinancial reasons.

During a special session atthe beginning of August, theTexas House passed a measurethat would partially reverse thiscontroversial cut. House Bill 25,authored by Rep. Sarah Davis,R-West University Place, wouldrestore about $160 million of thatfunding. (Editor’s note: As of press time, HB 25had been received by the Senate atthe 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 partialreversal began to take shape,the 85th Legislature presentedsetbacks for organizations likeProtect TX Fragile Kids fightingfor Texas’ kids with special needs.Senate Bill 1927 would haveincreased transparency in STARKids’ managed care programs bymaking data regarding enrollmentand services publicly available.The bill sailed through the Senateand even passed through theHouse committee on humanservices. However, SB 1927 neverwent to the House floor for a vote;it got lost in the House CalendarsCommittee. A committee memberhad anonymously tagged the bill,which prevented it from beingadded to the full legislative calendar.And just like that a bill doesnot become a law.

As a group, Texas children withspecial needs stand to lose evenmore in the national conversationsurrounding Medicaid and thefuture of theirhealth care.

“The[original] cutsmade by theTexas Legislatureamountedto $350 millionover a two-yearperiod,” saysAdriana Kohler,the seniorhealth policyassociate atAustin-basedTexans Care forChildren. “[TheU.S. Senate’s]Better Care ReconciliationAct(BCRA), which failed in late July,would have cut Texas Medicaid byover a billion dollars each year.”

Under BCRA, Medicaid wouldhave been slashed by roughly$772 billion, largely through percapita caps. With per capita caps,an average amount of medicalbenefits is calculated per enrolleeand then capped at that amount.The average funds per enrolleeare bundled together and then issuedas a lump sum to each state.Because these funds are not set togrow with inflation, nor with thecost of medical expenditures, overtime, federal Medicaid spendingwould have shrunk — by $772billion, according to BCRA. Whileanyone’s health care spending canvary significantly from year toyear, children with complex medicalneeds often require care thatfar exceeds these averages.

To put it into perspective,Victor’s lifetime limit was set at $2million. He hit $600,000 when hewas 3, Leeman says.

For Texas, the passage ofBCRA would have meant a loss of$10.5 billion in federal Medicaidfunding between 2020 and 2026.

For their part, the CongressionalBudget Office concluded intheir June 2017 report that stateswould have to “commit more oftheir ownresources, cutpayments tohealth careproviders andhealth plans,eliminateoptional services,restricteligibility forenrollment oradopt somecombinationof thoseapproaches”under BCRA.

Childrenwho relyon Medicaidwaiverprograms to receive in-home carewould be an especially vulnerablepopulation to annual and lifetimecaps, rewritten formularies,income requirements and more.There are approximately 19,000cases on the interest list (whatHealth and Human Services callsthe waiting list) for the MedicallyDependent Children Program(MDCP), which provides aid forchildren with extreme maladieswho require round-the-clocknursing facility care. These casescan take months or even yearsto process. So in the event of asignificant Medicaid fundingshortfall, the waiting list couldgrow exponentially.

But even with BCRA’s summerfailure, 43-57, with nine republicansand all democrats opposingit, Medicaid funding issues still hitTexas families hard.

Feeling the Effects

After the rollout of STAR Kidslast November, Jennifer Hall’s9-year-old son, Preston, who hascraniofacial disorder and a geneticdisorder that affects multiple systemsand causes developmentaldelays, lost his pulmonary physicianbecause the provider was notwilling to accept any STAR Kidsplans “due to previous issues withreimbursements.” The Grapevinefamily had to find a new pulmonologist,one who was in-network.They also experienced a delay ingetting continuous positive airwaypressure (CPAP), a ventilatorthat uses a steady stream of air tohold Preston’s airways open andhelp him breathe while he sleeps.The delay in getting approval forCPAP triggered a behavioral andemotional regression in school.“He wasn’t sleeping [well] atnight, which meant bringing inmore aide time and more time inspecial education,” says Hall, whois also the director of Protect TXFragile Kids.

And more recently, in July,Preston was denied renewal ofoccupational therapy and speechfeeding therapy “for the first timeever,” Hall laments. They are currentlyin the process of appealing.

Arlington mom Holly D. Graylikes the current Cook Children’sHealth Plan caseworker assignedto her 9-year-old daughterCaleigh, who has short bowelsyndrome and cerebral palsy. Butafter a trip to Boston Children’sHospital (a national hub for rare,childhood diseases) in April, Caleigh’spediatrician had to rewriteall the orders and prescriptionsCaleigh received there, as TexasMedicaid doesn’t cover out-of-stateservices, her mom explains.

Matt Cobb’s 8-year-old twinsboth have muscular dystrophy.One of the boys, William,requires a trach and a ventilator,which must be replaced monthly.Primary insurance doesn’tcover the ventilator but Medicaid does at $3,000 a month.The Arlington family also keepsa backup ventilator, in case theregular one fails — another$3,000. “Beyond that, are severalthousand dollars more eachmonth in supplies and services(including therapy and nursing),”Cobb reveals. And those are thecosts for just one of his sons. “Itwould be financially devastatingnot to have these resources.”

Before STAR Kids tookeffect, parents were invited toattend question-and-answersessions hosted by Health andHuman Services. It was at thesesessions that parents like Halland others started talking to oneanother and sharing their issueswith the program.

This network of parents beganto grow — and act — reaching outto elected representatives in Austin,networking with other parentsacross the state, and in a few shortmonths, this grassroots groupbecame Protect TX Fragile Kids.

They hosted a rally in Austinlast March and met with lawmakers.The goal? Visibility; participantswore red. Leeman, Victor,a few friends, Victor’s nurse andall of his critical support medicalequipment attended. One familyfrom San Antonio brought theirson in his medical bed.

Strength in Numbers

For most of these parents,advocating on behalf of theirchild is nothing new. From theday they received the diagnosis,they organized a team of healthcare providers and navigated themorass of insurance legalese. Butfor many, banding together withother parents for a larger cause issomething new.

“It’s not complicated,” saysHannah Mehta, Protect TX FragileKids’ executive director and aFlower Mound mom whose son,Aiden, a triplet, has a combinationof birth defects including digestiveand respiratory issues. “It’s a mistaketo make the needs of thesechildren a health care issue. It is amoral issue.”

And so these parents startedtelling their stories, first to eachother, then to friends and neighbors,always expanding their circleof influence.

“People can do small thingsthat turn into big things,” explainsJill Bradshaw, an Austin momwith a 4-year-old daughter whohas Charge syndrome and isdeaf-blind. “I knew nothing whenmy daughter was born, but I gotto know a lot of families, see theirhardships, hear about their dailystruggles.” She never set out to bea parent-advocate, but now sheserves on the board of Allen-basedTexas Chargers, Inc., anorganization for those living withCharge syndrome. She’s also onthe leadership team of Protect TXFragile Kids. “I’m here becauseother families can’t be.”

Hall reaches out to other parentsof medically fragile children.“[I encourage them] to becomeadvocates, to keep their childrenfrom losing their specialized careteams and services,” she says. Shebecame a parent-advocate out ofnecessity. “I felt no one else wasspeaking for my son, for our familyor families like ours.”

Mara LaViola, whose 14-year-oldson has autism, cerebral palsy,epilepsy and a mitochondrialdisorder, has been active in publicadvocacy for over a decade. “Youdon’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-specificsupport group like Bradshawdid when she joined TexasChargers or a more politically activeorganization, joining a groupconnects you with other parentswho understand your journey andwho can help put you in touchwith resources and information.

Put your talents to work. Gray,an artist, started an ongoing “OneDay” project. She photographsa tray filled with 24 hours ofmedical waste from one childand turns the visual statementsinto postcards she sends to legislators— with an explanation ofthe image.

Start a relationship with yourrepresentatives. “If you can go [to Austin], go,” LaViola advises. If youcan’t, get to know your local representativeswhen they’re at theirhome offices. “Make appointmentsto see them and introduce them toyour child,” she adds.

Share your story. Keep adraft of your personal statementhandy. You can use it asa template for letters you draftto elected officials. And whenMedicaid makes the news, useyour statement as a calling cardto send to local media outlets.

Leeman calls her representativeswhenever she gets a moment.“I was so nervous [when I firststarted calling],” she laughs. “NowI call when I’m sweeping the flooror vacationing on the beach.”

It would be tempting to thinkthat with the failure of BCRA,the threat to Texas Medicaid isover. But the truth is, the futureof Texas Medicaid is still souncertain. Baby steps like the onemade in the House help, but it’snot enough. And so even aftera long day of caring for her son,Leeman sits down, not to relax,but to tweet #MedicaidMatterson his behalf or to post calls toaction on various pages. “Thefight never ends!” she says.