The Issue
Youth with intellectual and developmental disabilities (IDD) in Illinois face a system that cannot meet the level or continuity of care they need. Demand is growing, capacity is limited, and critical supports often disappear just as young people reach adulthood, placing families and providers in crisis and pushing youth toward unsafe or inappropriate options.
The Scope of the Need
The scale of need across Illinois is significant—and rising:
~290,000
The Arc of Illinois estimates ~290,000 children and adults in Illinois live with an intellectual or developmental disability
~96,000
According to the Illinois Report Card, ~96,000 Illinois children receive special education services related to IDD
Over 11,400
youth under age 22 are currently waiting for residential services through the PUNS system
10 x
Demand for youth residential services is roughly ten times greater than available community-based capacity, creating long waitlists and unsafe delays.
Behind every number is a family navigating complex medical, behavioral, and safety needs, often without the supports required to keep their child and others safe.
High Demand, Low Capacity
Illinois does not have enough appropriate residential options for children and young adults with IDD.
Illinois has only about 105 beds in Children’s Group Homes statewide, creating intense pressure on the system. When young adults stay in children’s residential settings beyond the age of 22, it creates bottlenecks that prevent younger children from accessing care and it drives up long-term costs for the state.
As demand grows, individuals and families are often left waiting—or forced to accept placements that do not align with best practices.
When community-based options are unavailable, young adults are more likely to enter State Operated Developmental Centers (SODCs), where vacancies are limited and transitions out are rare.
The Age-22 Funding Cliff
Until age 22, youth with IDD may receive residential and related services through a combination of state agencies and funding streams. But when a young person turns 22, that support often drops off sharply.
Funding for adult residential services is frequently about 65% lower than what is provided for children—even though an individual’s needs do not change overnight. As a result, many young adults lose the supports that keep them safe, stable, and integrated in their communities.
“A youth with I/DD who is 21 on Monday and turns 22 on Tuesday should be receiving the same rate to support their needs into adulthood regardless of the state funding source.”
—Together for Youth with IDD Policy Report
Without continuity of funding, families and providers face impossible choices and providers are forced to absorb costs or discharge individuals with nowhere appropriate to go.
A Fragmented System
Residential services and funding for youth with IDD in Illinois are spread across multiple agencies, including:
DHS – Division of Developmental Disabilities (DHS-DDD)
Department of Children and Family Services (DCFS)
Illinois State Board of Education (ISBE)
Healthcare and Family Services / Medicaid (HFS)
These systems do not connect seamlessly. Youth often “age out” of one funding source before another is in place—creating conflicting requirements for providers and an unclear, burdensome transition for individuals and families.
How Illinois’ Youth IDD Residential System Breaks Down at Age 22
This visual map shows how children’s residential services transition, or fail to transition, into adult supports, and where funding drops, creating bottlenecks and system gaps that place youth at risk.
