Parents of children with severe autism in Michigan have limited options when it comes to finding long-term care for their kids.
Securing reliable in-home care is often a challenge, and the state’s residential mental health care facilities often lack the resources necessary to accommodate patients with extremely aggressive or violent behaviors.
For Cyndi Sibley, finding care for her daughter required driving across the country to a facility in Maryland.
Jackie, Sibley's 19-year-old daughter, has a severe form of autism that requires constant care. Sibley says when Jackie reached adolescence, she began to display dangerously aggressive, “self-injurious” behaviors. Keeping Jackie safe has become an increasingly difficult, costly challenge.
Jackie received a state Medicaid waiver for in-home help when she was around four years old. But Sibley says the family struggled to find the long-term care her daughter so desperately needed.
“It’s very hard to find staff, especially when there are challenging behaviors involved. Most of the people that we had helping us would quit,” Sibley said.
After exhausting her options in Michigan, Sibley found the Kennedy Krieger Center in Maryland, a residential facility that specializes in treating severely autistic children. After a year on the waiting list, Jackie was admitted in March 2018. Sibley says that her daughter has received “phenomenal” care there.
Kennedy Krieger is typically just a three-to-six-month program. Healthcare providers there, knowing there were few options for Jackie back home in Michigan, extended her stay to over a year.
That extended stay has been costly for Sibley’s family. The state of Michigan now considers Jackie to be a resident of Maryland. That means she’s ineligible for the Medicaid waiver she’s had since she was a young girl. Sibley’s private insurance stopped covering Jackie’s treatment at Kennedy Krieger — which costs $127,000 a month — in August.
No one’s been paying the bill since then.
Sibley says Michigan needs to do more to provide the care that young people like her daughter need. After years of dealing with Michigan’s mental health system, she has this advice for the state:
“Michigan needs to look at having some kind of facility — I think every state does — so that they can house these children that are not just on the spectrum, but severe cases.”
Meanwhile, Sibley and her family continue to search for a long-term solution. They’ve even considered moving out of state, and away from their family, to get Jackie the care she needs.
This post was written by Stateside production assistant Isabella Isaacs-Thomas.