Immune Deficiency Foundation

The Immune Deficiency Foundation is  a nationwide organization that can assist with finding specialists, providing financial assistance and providing educational materials. Primary immune deficiency diseases are a group of relatively rare conditions caused by intrinsic or genetic defects in the immune system.

DSCC’s Mental Health Resources for Youth Tip Sheet

The Division of Specialized Care for Children’s (DSCC) Mental Health Resources tip sheet provides a listing of websites, fact sheets and videos to help youth and their families find mental health resources.

Mental Health Resources tip sheet in English

Mental Health Resources tip sheet in Spanish

DSCC’s Education Skills Checklist

The Division of Specialized Care for Children’s (DSCC) education skills checklist can help youth and their families identify the skills and abilities they have met as well as those areas where they may need more focus. Some of these activities may not apply to everyone. 

Education Skills Checklist in English

Eduation Skills Checklist in Spanish

Transition to Employment & Adult Services

The Arc of Illinois Family to Family Health Information and Education Center’s Family Transition Manual provides help for families of young adults with developmental disabilities preparing to transition from school and services for children to the world of work and adult services.

DSCC’s Work Skills Checklist

The Division of Specialized Care for Children’s (DSCC) Work Skills Checklist is designed to help youth identify work-related skills they have and other areas where they may need more focus. Some of these activities may not apply to everyone.

DSCC’s Work Skills Checklist in English

DSCC’s Work Skills Checklist in Spanish

Plan to Achieve Self Support (PASS)

The Plan to Achieve Self Support or PASS for people with disabilities is a written plan of action for getting a particular kind of job or starting a business offered by the Social Security Administration.  The PASS allows you to earn more money to apply towards a work goal, without reducing your SSI benefits.

Got Transition

Got Transition aims to help youth and young adults move from pediatric to adult health care. Its website includes frequently asked questions and resources for youth and young adults as well as parents and caregivers.

The site also includes an animated video “What is Health Care Transition? HCT 101” for youth, young adults and families.

Almost Home Kids

Almost Home Kids provides a bridge from hospital to home through an innovative community-based care system for children with medical complexities. It responds to the needs of families, trains caregivers, offers respite care, advocates for accessibility and inclusion and educates healthcare professionals.

Almost Home Kids offers transitional, respite and respite transportation care. It has locations in Chicago, Naperville and Peoria.

Maryville Children’s Healthcare Center

Maryville Children’s Healthcare Center provides care to children with complex medical needs who are not yet able to go home. They also provide training for caregivers enabling them to care for the child when he/she transitions home. Maryville offers both transitional and respite care.

DSCC’s Adult Living Arrangements/Self-Reliant Skills Checklist

There are many activities that youth with specialized healthcare needs can practice doing to become more self-reliant and ready for their desired adult living arrangements. The Division of Specialized Care for Children (DSCC) created this Adult Living Arrangements/Self-Reliant Skills Checklist to help youth and their families learn about and build important skills and abilities in the areas of independence, nutrition, personal care and hygiene, and mobility/exercise. Some of these activities may not apply to everyone.

DSCC’s Adult Living Arrangements/Self-Reliant Skills Checklist in English

DSCC’s Adult Living Arrangements/Self-Reliant Skills Checklist in Spanish