Some families of autistic children are leaving Utah. Others are taking drastic measures. The Salt Lake Tribune profiles ASD teen Garrett Lines, whose mother turned him over to state custody.
There was little progress in Garrett’s ability to learn "frustration tolerance and self-soothing skills," the DCFS report to the judge said, recommending Garrett be taken into state custody and enter residential treatment.
"Alternatives were explored through Nikki’s insurance plan to avoid the need for Garrett to be placed into state custody," the court report said. "Based upon his primary Autism Spectrum Disorder diagnosis, Garrett’s insurance provider will not authorize a higher level of care beyond crisis care stabilization and outpatient therapy."
State custody, the report pointed out, would make Garrett eligible for Medicaid, which covers more extensive therapy than private insurance typically allows.
"In this valley, Medicaid is the window for accessing many of the services that are in place for kids and adults who have developmental disabilities, autism included," said Deborah Bilder, an assistant professor at the University of Utah’s department of psychiatry, who specializes in autism.
"If an individual does not meet criteria for Medicaid, typically because of their parents’ income," she said, "it really restricts the services they can access unless their family is wealthy enough to afford expensive [behavior] therapy."
Peter Bell, an executive vice president at the national group Autism Speaks, said he isn’t surprised that parents of autistic children in Utah can become desperate enough to turn their son or daughter over to the child welfare system. That’s why the advocacy organization continues to fight for insurance mandates, he said.
"The way you prevent it from happening is you help families get access to the treatment their children need and deserve," he said, adding that many children who receive help early may be able to become taxpayers later.