Ending the Age 22 Funding Cliff for People with Developmental Disabilities in Illinois
When a young adult with an intellectual or developmental disability (IDD) turns 22, the critical state funding that supports their residential and developmental care is often drastically reduced or ends abruptly.
For the approximately 200 youth with IDD living in licensed children’s residential settings or group homes, this cutoff creates a devastating “funding cliff.” It forces individuals, families, and nonprofit providers to navigate a complex and underfunded adult system that cannot meet their needs, jeopardizing years of stability, growth, and safety.
The Funding Cliff Explained
Currently, funding for youth with IDD in residential programs is divided among IDHS-DDD, the Illinois State Board of Education (ISBE), and DCFS—but the level of support needed for individuals with high support needs ends or is drastically reduced once an individual turns 22.
When that happens:
● Few adult residential options exist that meet their support needs.
- Adult Community Integrated Living Arrangement (CILA) rates are about 65% lower than children’s residential rates.
- Providers must absorb enormous costs to maintain essential support.
This cliff forces some individuals into State Operated Developmental Centers (SODCs) – institutional settings that are both costlier and less empowering. The average annual cost at an Illinois SODC is $347,375 per person, 2.7 times more than the average annual cost of a 24-hour CILA at $128,084.*
Individuals’ needs do not change when they turn 22, but their funding does. That gap has left many young adults with high behavioral support needs without safe or appropriate placements, while nonprofit providers are left struggling to maintain care with limited resources.
A New Coalition
Seven children’s residential service providers in Illinois recently formed the Together for Youth with IDD Coalition, seeking to ensure continuity of care for individuals with IDD who turn 22 while living in licensed residential settings. The group is working with the State to shed light on this issue and potentially create a pilot service line to support young adults with IDD with significant behavioral or medical support needs in adult settings.
The group is comprised of leaders from PACTT, Hope School, Goldie Floberg, Little Friends, UCP Sequin, Cornerstone Services, Little City, IARF (Illinois Association of Rehabilitation Facilities), The Institute on Public Policy for People with Disabilities, and The Arc of Illinois.
Together, these organizations represent hundreds of individuals and families across Illinois, working to ensure that every person with an intellectual or developmental disability has access to stable, lifelong supports.
Why It Matters
Turning 22 shouldn’t mean losing your home, caregivers, or independence. The coalition is working to ensure that people with IDD continue to live and thrive in their communities by:
Protecting Individuals: Guaranteeing consistent, appropriate supports through adulthood.
- Supporting Families: Offering peace of mind to those unable to provide 24-hour care at home.
- Stabilizing Providers: Shielding nonprofit organizations from financial strain and penalties.
- Saving Taxpayer Dollars: Community-based programs cost a fraction of institutional care.
Follow the Fight for Continuity of Care
Together, with families, advocates, and coalition partners, we can ensure that people with intellectual and developmental disabilities in Illinois are supported for life, not just until age 22.
Stay informed and engaged in the movement to end the age 22 funding cliff.
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* Per The Institute on Public Policy for People with Disabilities