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Challenges Autistic children face with Medicaid
A popular autistic teen and business owner is in a crisis that is baffling doctors and frightening her parents. They're talking to FOX 26 Houston’s Chelsea Edwards in the hopes that lawmakers push forward solutions and other parents know they're not alone.
HOUSTON - A popular autistic teen and business owner is in a crisis that is baffling doctors and frightening her parents.
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Sophia Miniel is the 17-year old co-owner of Texas Made Soaps. She's been on several TV stations and magazine features with her handmade, highly scented creations, showing that severe autism doesn't stop her from being a boss.
But starting around April, her parents say her condition took a disturbing turn with uncontrollable meltdowns and aggressive behavior that has left their home destroyed.
"We thought something's hurting so we took her for blood work and did all kinds of stuff, but we couldn't figure out what it is," says mom Katie Miniel.
She describes Sophia’s bloodcurdling screams, night terrors, and physical attacks that she’s been unable to fight off alone. Additionally, she explained how her daughter is unable to stop her autistic meltdowns that seem to be caused by an unpredictable sensory overload.
Doctors increased Sophie’s already minimal dosage of anti-psychotic medication, but things got worse. Six police officers rushed to help restrain her during a hospital stay. The family has been unable to live normal lives.
"I took her to the grocery store. It was sprinkling outside. The rain got on her, and as we got into the entrance she started attacking me; she was hitting me in my chest just non-stop," says her mom.
"I had tears in my eyes, and I started noticing that everybody is around me in a circle, with their phones out recording and that's the hardest part- instead of somebody stopping and saying, ‘Can I help you?" cries Miniel. "Those are the times it just makes you want to stay home."
Her parents are trying to get to the root of the problem with more testing, but they're facing limited options and a lack of autism specialists on Medicaid.
Like thousands of families across Texas, Sophie’s parents are waiting for the finalization of HB1 which included Rider 32: Intensive Behavioral Intervention. It was signed by Governor Greg Abbott in 2019 but implementation has since been delayed. The law adds IBI treatment as a Medicaid benefit for people under the age of 20 diagnosed with autism.
For now, Sophie’s family is raising funds to pay for therapy out of pocket and using Facebook groups to talk with other parents about the struggles and stigma of autism.
"It’s pretty uplifting to see that we’re not alone. We’re out here, we just need to be heard," says Sophia’s dad Albert. "People need to understand so that when we do go places or whatever, people don't look down on us."
They're hoping to raise enough to work with a specialist, and if there's another public breakdown, instead of pulling out a phone, they want people to offer a little compassion instead.
To visit the Miniel family’s fundraising page by clicking HERE.
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