By Maureen Hayden
CNHI Statehouse Bureau
Indiana families of children with autism are facing years-long wait for access to state services, a wide geographic disparity in care, and shrinking resources for those children when they become adults.
That grim assessment was offered Monday to the Indiana Commission on Autism, a legislative study group charged with making recommendations for how to improve care and services for more than 40,000 Hoosiers who have been diagnosed the disorder.
“Our need for services far outstrips the resources that we’ve devoted to this as a state,” said John Dickerson, executive director of The Arc of Indiana advocacy group.
Most pressing may the long wait for access to the state’s Medicaid-waiver programs, designed to keep people with disabilities from being institutionalized. There are now more than 19,000 people on the Medicaid-waivers list, waiting an average of 10 to 12 years to access federal Medicaid funds to help them offset the cost of in-home or community-based care.
More than 5,500 people on the list are individuals diagnosed with autism.
Commission member state Sen. Jean Breaux, D-Indianapolis, said those numbers show a system “so broken and so dysfunctional” that the state needs to look at dismantling the current system and creating a more effective way to make sure families with the most pressing needs are getting help.
Mary Rosswurm is a commission member from Hamilton County and mother of a 20-year-old son with autism. She told fellow commission members: “We’ve been on the wait list since 1998.”
State Sen. Tim Skinner, D-Terre Haute, said families on the wait list face additional frustrations: Because of the complexity of state and federal Medicaid rules, some families who’ve been approved by the state to get on the wait list find out years later that they don’t meet the federal guidelines. In essence, they’ve been waiting in vain, he said.
“It would be awful for a family to be on the list for six or seven years, believing they were moving forward, and then to find out that they’re not eligible,” Skinner said.
Officials with the state’s Family and Social Services Agency, which administers the Medicaid-waiver programs, said the length and duration of the waiting list has made it difficult for FSSA to monitor a person’s continuing eligibility.
The issue is critical not just to families in need but to the state. Indiana’s Medicaid costs, which includes the Medicaid waiver programs, have risen so much that they now take up a larger percentage of the state budget than higher education.
At Monday’s meeting, the commission stopped short of recommending a legislative fix, but it did push FSSA officials to take a look at the cost of overhauling the Medicaid-waiver system so that families with the most critical needs would be served first.
Commission members also told FSSA officials that they want to find a way to expand a program, paid for with Medicaid waivers, that would allow more adults with autism to live in small group settings near their home communities.
The commission also agreed to work with rural health care providers on the issue of access to diagnostic services for families with an autistic child. Commission chairman Sen. Brent Waltz, R-Greenwood, said families who live in central Indiana have better access to medical specialists and researchers who specialize in autism and its related disorders.
Waltz said there was “a great disparity” between urban and rural areas in Indiana. “That doesn’t seem right to me,” said Waltz.
Maureen Hayden is Statehouse bureau chief for CNHI Indiana newspapers. She can be reached at firstname.lastname@example.org.