Extensive Supports & Developmental Disabilities
Every young adult’s journey looks different, and some may need more intensive or lifelong supports to thrive. For families of individuals with developmental disabilities, planning often means looking at the “big picture” of care, services, and community connections that will carry into adulthood. This can feel like a lot to manage, but starting early and knowing what’s available can make the future feel less overwhelming and more hopeful.
Extensive supports might include daily living assistance, such as help with personal care, transportation, or health needs, as well as community-based services like day programs, supported employment, and respite care for families. In Illinois, families often connect to the PUNS (Prioritization of Urgency of Need for Services) list to access long-term supports such as residential services, job coaching, or personal support workers. These programs are designed to help individuals with developmental disabilities live full, meaningful lives with the right level of support.
It’s also important to remember that support doesn’t just come from formal programs. Families, friends, faith groups, schools, and local communities can play a big role in creating natural support networks that help young adults stay connected and included. For some families, cultural or personal values may shape how and when formal services are used, and that’s okay; there’s no one-size-fits-all approach.
In our community, there are agencies, advocates, and service coordinators who specialize in helping families navigate the world of developmental disability supports. Whether you’re learning about PUNS for the first time, exploring adult day programs, or planning for residential care, there are people and resources ready to walk alongside your family. The goal is always the same: to ensure every young adult, no matter their level of need, has the chance to build a safe, supported, and fulfilling life.
Community Connections
Madison & St. Clair Counties
Responsible for enrolling individuals in the PUNS and keeping that PUNS information current-required to do at least annually. Families/students will need to provide information to the agency regarding intellectual or developmental disability. They then become the advocate for individuals. They can help you understand SSI/SSDI, Medicaid, information on guardianship vs. power of attorney, special needs trusts, etc.
217-362-6128 or 1-800-866-8779
Trinity provides: residential services, community day services, ABA services and behavioral health services.
Mike Lowry, Trinity Southwest Director
619-566-4200
The Arc of Illinois advocates for people with intellectual and developmental disabilities, families and community organizations to ensure that people with disabilities can live, work, learn, and play in communities across the state.
The Illinois Department of Human Services (IDHS) Division of Developmental Disabilities (DDD) provides person-centered, outcome-based supports that match each individual’s needs and strengths, ensure access across the lifespan, promote informed choice, and safeguard progress, quality of life, and safety.
Right at Home caregivers can help adults with disabilities live safely in their homes, wherever home may be.
ICTW is a state-wide training and technical assistance center specifically focused on transition from school to work for adults with significant disabilities.
SAVE Inc. (St. Clair Associated Vocational Enterprises) offers Community Day Services for individuals with developmental and other disabilities in St. Clair County, Illinois, focusing on personal and vocational growth. It also partners with local businesses to provide opportunities in light assembly, packaging, sorting, and mailing, creating meaningful work experiences within the community.
Caritas Family Solutions supports children, families, and adults by offering services like adoption, foster care, family preservation, residential care, and community living arrangements.
Illinois Life Span (a program of The Arc of Illinois) offers statewide advocacy, information, and tools focused on services and supports for people with intellectual and developmental disabilities and their families.
The Illinois Respite Coalition (IRC) helps families caring for a loved one with a disability. They offer in-home and emergency respite, a lending library with helpful tools, caregiver training, and a database to connect families with local supports.