UVA Analysis Finds ‘Wildly Variable’ Support for Families with Profoundly Disabled Children
CHARLOTTESVILLE, Va. (WVIR) - A professor at the University of Virginia is digging into Medicaid waiver programs and says Virginia is lacking. Children with profound disabilities are waiting for therapy, assistive technology, and even wheelchairs.
Jessica Keim-Malpass is conducting a state-by-state analysis. She says Medicaid dollars are not being used well, even though one-third of them are spent on children with disabilities.
Thousands of people across Virginia rely on Medicaid waivers, but Keim-Malpass says they're not being put to their best uses. “So I was noticing time after time that these kids and families would come back to the intensive care unit with what I saw as potentially preventable things.”
More than a third of Medicaid dollars are spent on the one-percent of American kids who have a qualifying profound physical or mental disability.
“I found the system really challenging for me to understand and navigate, and I can only imagine being a new parent or a parent with a large family and trying to navigate this,” said Keim-Malpass.
An online project that provides resources for impacted families shows 16,000 people, including some adults, are on a waitlist for waivers.
“One area that Virginia could improve is to expand the number of children that are allowed on the waivers. Right now we’re hearing that there’s quite a long waitlist for these waivers, so even if children are eligible they could spend upwards of 2 years waiting for a spot to open up,” said Keim-Malpass.
Keim-Malpass hopes her work studying these waivers over the last four years is put to good use. “I think we can do a lot to kind of inform the clarity and the process and the transparency and that’s kind of what I really hope my findings can help offer.”
Keim-Malpass says another way to help these families is to make the eligibility criteria surrounding Medicaid waivers more clear. Other states also have more comprehensive waivers, to cover more physical and mental disabilities.