Finley Schroeder of Springfield has exceeded expectations in communicating with other children and adults despite the 4-year-old girl’s diagnosis of autism, her mother says.
Kristen Abbott credited an expensive treatment known as “applied behavior analysis” therapy for helping keep her daughter’s emotional and intellectual development on a relatively even keel. And Abbott is thankful the therapy has been provided at no out-of-pocket cost to her the past two years from The Autism Clinic at Hope Institute for Children and Families.
“She is doing absolutely tremendous,” said Abbott, 27, a single parent who works full time as a radiologic technologist. “You can’t even tell she has autism.”
But because of changes to the state’s Medicaid program in central Illinois that took effect Jan. 1, Schroeder and about a dozen other Springfield-area children could face more financial barriers to receiving life-changing ABA therapy, advocates for people with autism say.
The loss of the state’s only Medicaid managed-care plan willing to pay for ABA therapy is just the latest financial hit for the Springfield-based Autism Program of Illinois, the parent organization of the Autism Clinic.
Facing uncertain funding and an ongoing state budget crisis that cut off services for dozens of Springfield-area children and hundreds statewide in 2015 and 2016, The Autism Program now is worried that the recent cutoff of certain Medicaid managed-care funding will stretch its resources even thinner.
The not-for-profit program will try to continue ABA services for the dozen or so families that had benefited from the payments provided by Health Alliance Connect after the Medicaid managed-care plan stopped operating Jan. 1, according to Leigh Grannan, Autism Clinic director.
But the Autism Clinic had to stop serving all other Medicaid-covered clients from August 2015 until October 2016 because of a lack of state funding related to the budget crisis. Grannan worries that the clinic may be setting up these dozen families for more disappointment if The Autism Program’s state funding isn’t renewed in summer 2017 and the program is forced to make a similar decision.
Won’t pay for it
About half of states require their Medicaid programs to cover ABA therapy; Illinois does not, though Medicaid managed-care organizations contracting with the state of Illinois to serve certain parts of the Medicaid population are free to do so.
Advocates say the General Assembly or Gov. Bruce Rauner should change state rules or enact a law to require ABA coverage, regardless of whether payments flow through a managed-care organization or the traditional Medicaid fee-for-service system.
Advocates add, however, that they know lawmakers and the governor have been preoccupied with political battles that have prevented the state from having a permanent overall budget since July 1, 2015.
They point out that Illinois law, similar to laws in more than 40 other states, requires private insurance plans to cover ABA and other autism-related services. Coverage through self-insured employers is exempt from the requirement.
“I think Medicaid needs to fund these services,” Grannan said. “For families who don’t have the money to get their own insurance policies or have insurance coverage, they don’t get the No. 1-recommended treatment.”
Urbana-based Health Alliance Connect dropped out of the state’s Medicaid managed-care program effective Jan. 1, citing “financial losses” from serving Medicaid patients that “are not sustainable.”
The other two managed-care companies serving central Illinois patients, Meridian Health Plan and Molina Healthcare, aren’t paying for ABA therapy, though their state contracts allow them to. Officials from The Autism Program (TAP) are working to persuade Medicaid managed-care groups to cover ABA but aren’t holding out much hope in the near term.
Traditional fee-for-service Medicaid in Illinois also doesn’t cover ABA and many other autism-related services.
Trying to rebuild
TAP’s statewide network is trying to rebuild after going 15 months without the approximately $4.2 million annual state funding that provided the core of its support, TAP director Russell Bonanno said.
The network had provided educational, diagnostic and treatment services in Chicago, Rockford, Springfield, Charleston, Champaign, Peoria, Mattoon, Maryville and other locations.
“Few centers have been able to return to fiscal 2015 levels of service due to issues with recruiting replacement staff and concerns about continued services after June 2017,” Bonanno said.
More than a dozen people lost their jobs at various TAP sites amid the cutoff of funding during parts of 2015 and 2016, he said.
A center in Chicago closed and never reopened. Programs funded by TAP that were offered by other not-for-profit agencies downsized.
TAP recently took over a site in Maryville that a partner agency closed, and demand for services for children on the “autism spectrum” through the Maryville clinic has been strong, officials said.
“The need doesn’t go away just because these facilities downsize, change their hours or close completely,” TAP spokesman Christopher McCloud said. “People are begging for this type of service.”
Indeed, the number of people diagnosed with autism, a neurodevelopmental disability that can result in communication and behavior problems, continues to increase. In the 1970s and ’80s, one out of every 2,000 children in the United States had autism. One out of every 68 8-year-olds now has an autism-spectrum disorder, according to the U.S. Centers for Disease Control and Prevention.
State funding for autism began Illinois in 2003, but the money initially was intended to set up the infrastructure for training and educational services to assist people with autism and their families, Bonanno said.
Funding wasn’t used for actual treatment – which can include ABA and group therapy – until 2007, he said.
Advocates hoped state funding would increase to $10 million per year, in part to make up for the treatment that wasn’t being funded by Medicaid, but that goal never has been reached, Bonanno said.
The stopgap spending plan for state government approved in late June by the Democratic-controlled General Assembly and Rauner, a Republican, sent TAP a full year’s worth of funding. That money will carry the organization through June 30, 2017, Bonanno said.
But it’s been hard to hire staff when long-term funding is uncertain, he said. Partner agencies have been similarly cautious in reinstating services.
TAP’s Autism Clinic in Springfield has increased its number of privately insured clients so the clinic isn’t so dependent on state money and can have steady funding to retain the highly trained staff members who provide ABA and other therapy, Grannan said.
Building up the number of clients from low-income families to previous levels will take a steady stream of revenue through Medicaid, Grannan and Bonanno said.
Several states are taking steps to cover ABA through Medicaid in response to lawsuits or potential lawsuits, said Michael Wasmer, director of state government affairs for the advocacy group Autism Speaks.
A proposed settlement of a class-action lawsuit against the state by nine Illinois children with mental-health and behavioral disorders likely would have expanded Medicaid coverage for autism services, Wasmer said.
But federal Judge Jorge Alonso of the Northern District of Illinois rejected the settlement Dec. 20 and ordered both sides to work out a new agreement or prepare for trial. Lawyers for both sides are scheduled to check in with the judge in mid-January.
Asked whether the Rauner administration is interested in requiring that Illinois Medicaid cover ABA therapy, John Hoffman, spokesman for the Illinois Department of Healthcare and Family Services, said: “In order to provide more opportunities for other care options and to more timely make payments on current options, Democrats in the legislature need to pass a balanced budget with structural reforms that will protect our most vulnerable for the long term.”
More Medicaid cuts?
State Rep. Greg Harris, D-Chicago, chairman of the House Appropriations-Human Services Committee, said there would be interest in the legislature to improve Medicaid coverage for autism, especially as the number of people affected by the disorder increases.
He noted, however, that a push in Congress by Republicans to control Medicaid costs by issuing capped block grants to states could result in states having to chip in more money to maintain existing services.
Such a scenario, Harris said, could lead to more cuts in Medicaid spending in Illinois and more restrictions on what services are covered – making it more difficult for ABA therapy to be added.
Abbott, the Springfield mother, said state and federal laws should be changed to ensure all Medicaid plans and all private insurance plans – even those that are self-funded – cover ABA therapy.
Even with subsidies from Springfield’s Autism Clinic, Abbott would have to start paying $360 per month to continue her daughter’s ABA therapy at two to three hours per day, four days a week. The unsubsidized rate is $50 to $125 per hour.
Abbott can’t afford even $360 per month, so she plans to cut the amount of Finley’s therapy in half in 2017 and hope that her daughter doesn’t regress while attending Springfield’s Early Learning Center and preparing for kindergarten in fall 2017.
Abbott has hopes for her child to attend college someday. The girl will require ABA therapy for years to come, she said.
“I just want her to be as independent as possible,” Abbott said.
State and federal support of therapy for children with autism can help them avoid the need for even more expensive support in schools and the public aid system as they grow up, she said.
“These kids are very smart and very talented, if they can just get a little bit of help,” she said.
– Contact Dean Olsen: firstname.lastname@example.org, 788-1543, twitter.com/DeanOlsenSJR.