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.
But others questioned the wisdom of establishing another Medicaid waiver program, particularly one that would allow the state to consider the individual's income rather than the total family income when determining financial eligibility, which is allowed under federal guidelines.
In this case, the people served under the waiver would be children who have no income. Under that scenario, any child — regardless whether their parents were wealthy or poor - could conceivably qualify, said Sen. Allen Christensen, R-North Ogden.
Worse, the waiver could create a "false sense of hope in people's minds," he said.
Nearly 1,000 children could conceivably be eligible for the waiver, which would also be limited to children who have a confirmed autism spectrum disorder and would qualify for admission to an intermediate care facility.
If Utah offered the waiver to 33 children a year for three successive years, only one-tenth of eligible children would be served.
"We're creating another waiting list," Christensen said. "Thirty-three kids a year is so cruel to the rest of them."
Hales said the charge of HB184 was to explore costs to the state of a Medicaid waiver. The Legislature could further refine the work of the division and study group.
The Legislature took no action but agreed to resume its deliberations at a meeting later this year.