The services provided through Medicaid waivers to children with the most severe disabilities vary wildly from state to state, researchers say, leaving many families to pick up the pieces.

Just 1 percent of children are considered medically complex, but spending on care for this group through Medicaid waivers tops $48 billion annually. However, a new analysis looking at 142 waivers from 45 states finds significant differences in how this money is spent.

More than 80 percent of waivers cover respite care services, but only 8 percent include educational programs to teach families how to properly care for their children, according to findings published recently in the journal Health Affairs.

Slightly more than half of waivers offer case management or counseling services, the study found. But, less than a third include physical, occupational, speech or vision therapy or pharmaceutical, dietary or dental services.

“It’s not just how much we’re spending to support these children and families,” said Jessica Keim-Malpass, a nursing professor at the University of Virginia who led the study. “It’s how well we’re supporting these children and families. By most accounts, we’re not doing it well.”

The analysis factored waiver coverage of case management, environmental modification, specialized equipment and supplies, counseling for children and caregivers, bereavement services, respite care, various therapies, skilled or private duty nursing as well as pharmacological, dietary or dental services.

The researchers said that waivers are well intentioned, but badly executed.

Keim-Malpass called the study “a plea for waivers to be offered in a family-centered approach tailored to kids’ and parents’ needs.”

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