Texas has Medicaid programs that help parents or guardians care at home for children who would otherwise be eligible for nursing facility care, but recently the requirements for children to qualify for some programs have changed.
Earlier this year, I met Claire Milam who was in an appeals process to reverse a decision that made her son, Julio Solis Milam, 12, ineligible for a Medicaid program that helps her take care of him at their home.
"Julio does have trisomy 21, he does take daily medications," Milam says. Julio had been qualifying for what’s called the Medically Dependent Children’s Program, or MDCP, since he was 7, but in 2013, he became ineligible.
"It was very concerning because the waitlist for the intellectual disability waivers are very, very long," Milam says. "He’s still several thousand people down on those lists."
Taking care of Julio, who also has sleep apnea, is expensive, she adds. Milam takes him to specialists and therapists and pays for medication and medical equipment.
"These are children who are assessed to have such a severe disability that they would be accepted for care in a nursing home, immediately," says Dennis Borel, executive director of the Coalition of Texans with Disabilities. "But their families don’t want to put them in nursing homes."
As of July 2014, the Medically Dependent Children’s Program had more than 27,000 people on the waiting list.
For dependents to get on the program, they go through an assessment process with a nurse.
"Some of the questions on the assessment are like a snapshot of that time," says Melissa Gale, a spokesperson for the Texas Department of Aging and Disability Services.
"These assessments are done once a year, so during the course of the year, a child’s condition may improve," Gale says. "Maybe they don’t have the medical necessity they once had."
That means even children with permanent disabilities, like Down syndrome, don't necessarily qualify for MDCP.
"There are many children with intellectual developmental disabilities like Down syndrome who apply for the program, but if they don’t have the medical necessity they won’t qualify," Gale adds.
The state agrees that the questions asked during the assessment don’t always paint the whole picture, Gale says, so a parent like Milam can appeal that decision. In the meantime, the department is trying to fix those gaps in the assessment.
"The assessment has its limitations, and that is what we’re trying to work on because the assessment that we have today is very much geared towards adults," Gale says. In 2013, the department began working with the Texas Health and Human Services Commission to make the assessment geared more toward children.
On Dec. 1, Claire Milam’s son, Julio, qualified for a different waiver program – Home and Community-Based Services, or HCS, and that means the appeal has been withdrawn for MDCP.
Parents who need guidance on how to seek services for their children can call 211 to get the Department of Aging and Disability Services office they need to speak with, or visit the department's website.
