Utah lawmakers explore Medicaid waiver for children with autism

SALT LAKE CITY — On average, about one in 110 children in the United States has an autism spectrum disorder, while in Utah the ratio is approximately one in 130. Soon-to-be-released figures will likely show an even greater prevalence of the disorder, according to Michael Hales, director of the state Division of Medicaid and Health Financing, and that means a greater demand for services for children with ASD and a great need for assistance for the children's parents who are the primary caregivers.

"They are exhausted. They are worn out. They are looking for some other help," said Rep. Trisha Beck, D-Sandy, during a meeting of the Utah Legislature's Health and Human Services Interim Committee Wednesday.

HB184, passed by the 2010 Legislature, asked the Utah Department of Health to explore the costs of providing services to children with confirmed diagnosis of ASD utilizing a Medicaid waiver, which would pay for community- or home-based services for people who would otherwise qualify for admission to residential care facilities. In Utah, there are limited numbers of beds in such facilities and most families care for their own children.

The Centers for Disease Control defines autism spectrum disorder as a "group of developmental disabilities that can cause significant social, communication and behavioral challenges."

A committee of parents, government agency representatives and service providers recommended to lawmakers an option that would provide intensive supports to children ages 2-6, along with case management and respite care for families.

The committee proposed that the state launch the waiver among 33 eligible children and add another 33 children in two successive years.

The program would provide 15 hours of paid services. Parents or family members would be required to complete at least 5 hours of one-on-one intervention activities with their child. The cost to the state would be approximately $10,076 per child per year, which was the lowest cost of three options studied by the group.

The committee selected this particular age group because autism can be more accurately diagnosed after age 2, Hales said. Research suggests that interventions with children in this age group can be particularly effective, potentially saving government funding for services later in life. However, the group noted that there is no particular age when a person with ASD could not benefit from appropriate services.

"Investing on the front end to save on the back end. That makes sense to me," said Sen. Pat Jones, D-Salt Lake.