AUSTIN, Texas — Two-year-old Harvey Foster loves playing with his dad. But unlike many kids his age, he needs help moving around the house. And when he can, it's special.
"He loves the independence of being able to get up and move and not have to have someone pick him up and physically move him to another place,” said Harvey’s mom, Jacqueline Skinner-Foster.
It took a year for Harvey's family to finally find out that Harvey's issues with motion are because he has a rare disease called DLG4-related synaptopathy, making it hard for him to learn new things or talk.
"He can't even feed himself right. He can't walk. He'll have toilet issues most likely the rest of his life,” said Skinner-Foster.
Skinner-Foster quit her job to take care of Harvey full-time and signed up for five Medicaid waiver lists that would help them financially. Just last year, they spent more than $10,000 on care for Harvey.
According to Texas Health and Human Services, as of December 2021, the longest Medicaid waiver waiting list was 16 to 17 years long. That waiver is for people with intellectual disabilities who need at-home care like Harvey.
The shortest waiting list is three to four years long and is for medically dependent people under 20.
Texas Health and Human Services says the wait is so long because it is constrained by the amount of money the Legislature allocates, though it does say funding has increased. It said in a statement in part, "Senate Bill 1 provides authority for HHSC to spend an additional $76.9 million in general revenue funds to address interest lists and we plan to fill 1,549 new slots during the 2022-23 biennium."
Harvey is about 500 spots away from getting his turn on one of the lists, and that's after waiting almost a year. So this family waits and makes do while they can, focused on raising money for research into Harvey's rare disease. You can click here to donate.
Here's an extended cut from our interview with Harvey's mom about their journey with Harvey and DLG4-related synaptopathy:
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