WINNEBAGO COUNTY — Britt Cotton has traveled a long road over the last three years. In 2021, she lost a child to suicide, and now, she is moving out of the state because she’s tired of trying to find residential mental healthcare that takes her state insurance.

“When you’re told that you can’t have the services that are the residential, it doesn’t make sense as to why they would be able to see you every week, but not see you for intensive things, so then you’re sent our of state or out of city.” Cotton said. “How are parents supposed to be able to do that if they’re on a fixed income or single families.”

Most recently, Cotton had to send her ailing child to Missouri, one of few options she says would take her state Medicaid. Previously, she took even more action to get her child residential mental healthcare by getting what’s called a “Family Support Program” (FSP) grant. The grant program allows families to access residential mental healthcare along with other intensive services. The problems are twofold according to people familiar with the grant process. The first according to Cotton is that it puts too much stress on parents.

“You’re going to be looking at getting a psychological eval yourself,” Cotton said. “It’s not comprehensive, you don’t have help, they’re not telling you what tests need done, what tests you don’t need done.”

The other is the long turnaround time it takes to approve FSP grants. Laura Kane with Marshmallow’s Hope says the average process can take half a year.

“People typically have to go through an application process to ensure that they truly need the care, and it can take Medicaid 3 to 6 months to approve that,” Kane said.

The issue with taking so long to approve care is that people who need robust services for the behavioral health don’t have months to wait. Usually, they only have weeks. Xavier Whitford, the Executive Director of the Tommy Corral Foundation says this kind of system can cost lives.

“Telling somebody that needs the care and is willing to accept the help, that they have to wait 2-3 months is not acceptable,” Whitford said. “Because they’re going to take their life by suicide, or they’re going to feel that nobody is there to help them, ‘I tried so why even bother anymore?’ and they’re just going to give up.”

Cotton says she’s personally scene the turnaround time put her child in the hospital several times.

“It’s looked like over ten hospitalizations since the beginning of 2020 and two residencies, and just waiting in between and hoping things go okay, and sometimes things not being okay,” Cotton said. “It looks like many many nights of tears and just a constant fear that you’ll wake up and that person will not be there the next day.”

Despite the current issues, Kane says there are positive developments with Medicaid. She says she’s had direct contact with the state and believes there will be significant changes to both access to mental health services and shorter turnaround times in the coming months.

“I have been working directly with one of the representatives with Medicaid who has given explicit details of what changes are happening and what changes are coming and they are acceptable,” Kane said. “They are actually trying to fund more initiatives.”

Illinois’ Department of Healthcare and Human Services would not confirm the changes are being worked on. The department only wanted to clarify what services it offers:

The Illinois Department of Healthcare and Family Services (HFS) currently supports residential services for youth with complex behavioral health needs, regardless of their eligibility for Medicaid, through the Family Support Program. Residential capacity in the state is limited and is shared by many state agencies including DCFS, ISBE and DJJ, which can result in youth having to wait for admission to a residential facility. Therefore, expanding behavioral health access for youth is a top priority for HFS. The Department understands the value of having a robust continuum of behavioral health services for the youth we serve, which focuses on intensive community-based services that will help to stabilize youth in their homes and communities to reduce the reliance on residential treatment services. HFS has launched the Pathways to Success Program that provides youth with complex behavioral health needs and their families evidence-based, best practices of High-Fidelity Wraparound, Intensive Care Coordination, Intensive Home-Based Services, Family Peer Support, Therapeutic Mentoring and Respite. HFS has provided over $20 million dollars to support Care Coordination and Support Organizations that offer wraparound and care coordination, and recently released a Notice of Funding Opportunity for $25 million to support providers who want to offer Intensive Home-Based and other Pathways services. As the home and community-based services continue to grow in capacity, HFS will also be planning for the implementation of additional residential treatment alternatives that are directly connected to the community-based services, allowing youth to stay connected to their home and communities during short-term stabilization treatment in residential facilities. HFS is taking this approach because research has consistently found that community-based services are effective and essential for ongoing stability of youth and families in the community.

In addition, the multi-agency Children’s Behavioral Health Transformation Initiative is working to broadly improve behavioral health services for Illinois youth, by taking a comprehensive and evidence-based approach to redesign the delivery system to better serve families seeking mental or behavioral health services for children and adolescents. The Pritzker administration launched the Initiative in 2022, and has put forth a range of recommendations and strategies to improve coordination, increase capacity and create a centralized resource for families seeking behavioral health services for youth.

Illinois Governor JB Pritzker also announced new reforms at his State of the State address on February 21 saying he would file legislation to end “prior authorization” for insurance companies. The short version is that insurance companies can use prior authorization to require a separate approval from doctors to prove why a patient needs certain medical care. This process often delays and denies a person’s coverage, which Pritzker pointed out happens often to people trying to get inpatient mental healthcare. He says he wants to end the practice of prior authorization in Illinois as soon as possible.

“This means patients suffering a mental health crisis can get the care they need without jumping through hoops designed to deny coverage, and we’re going to make sure that insurance plans publicly post all treatments that require prior authorization, so consumers can compare plans when they’re shopping for coverage,” Pritzker said.

Pritzker did not say when he would file that legislation.