Health Condition and Disability-Specific Resources
The Autism Program of Illinois (TAP)
The Autism Program of Illinois (TAP) Service Network is a collaboration of five universities and 10 organizations that together operate 20 centers across the state to provide services to children, families, educators, childcare providers, and medical professionals.
Illinois residents can participate in TAP’s Advocating for Supports to Improve Service Transitions (ASSIST) Training Program. The training features twelve modules focused on helping families advocate for adult services on behalf of their child or young adult on the autism spectrum. Each module features an expert-led presentation and time for discussion.
Topics include:
- Guardianship and alternatives to guardianship
- Medicaid waiver services
- Social Security benefits
- Health insurance
- Special needs trusts
- Post-secondary education and employment
PUNS is the name for the list of the people in Illinois with developmental disabilities who want or need services but do not yet have funding. Individuals who need help from the government to pay for needed Division of Developmental Disabilities Waiver services now, or in the future, should register for PUNS.
The Arc of Illinois’ Life Span Program provides an overview of how to get on the PUNS list and how to check the approximate date when you may be selected.
The Center for Courageous Kids Summer Camps and Family Retreats
The Center for Courageous Kids (CKC) offers free family retreat weekends and overnight summer camp sessions for youth ages 5 to 17 with complex medical conditions and disabilities. CKC welcomes children with a wide range of conditions, including heart/cardiovascular disease, blood disorders, sickle cell disease, spina bifida, and more. The camp provides 24-hour medical coverage, an on-site medical center, and program and medical staff with training and experience in all aspects of medical camping.
The Center for Courageous Kids is open to youth ages 5 to 17 who are diagnosed with one of the illnesses/conditions it serves, and to immediate family members. To learn more about the camp, you can also:
If you have questions, please call (270) 618-2900 or use the Contact Us form on CKC’s website.
The Chicago Lighthouse is a social service organization serving the blind, visually impaired, disabled and veteran communities. It provides vision rehabilitation services, education, employment opportunities and assistive technology for people of all ages throughout Chicagoland. It also provides housing opportunities for income-eligible households for individuals with disabilities. National and statewide resources include help with college, brailler repair, employment, recreation, service animals and more.
The organization’s Lader Family Scholarship Program is open to Illinois residents who are blind or visually impaired, as well as Chicago Lighthouse employees who are blind, visually impaired, have another disability or are veterans. You can learn more about the Lader Family Scholarship and other scholarship opportunities on the Chicago Lighthouse website.
The Children’s Heart Foundation
The Children’s Heart Foundation is dedicated to advancing the diagnosis, treatment and prevention of congenital heart defects (CHD) by funding the most promising research. Its resources include CHD facts, information on the different types of CHD, “The Heart of the Matter” documentary, and where to find support.
The Children’s Heart Foundation also provides “It’s My Heart,” a resource book for patients and families affected by congenital heart defects. The book, which is written in plain, easy-to-understand language, describes the types of CHDs a child may face, along with:
- Explanations of the various tests, surgical procedures and treatments
- Helpful diagrams
- A glossary of medical terms and much more
For questions, please contact the Children’s Heart Foundation at (847) 634-6474 or info@childrensheartfoundation.org.
The Decibels Foundation supports children with hearing loss from birth through the time that they enter a mainstream educational environment and beyond. Using a family-centered approach to hearing loss programs, the Decibels Foundation helps the children by first helping their parents learn how to raise a child with a hearing loss, then helping school systems understand what it takes to educate a child with hearing loss.
The Decibels Foundation’s Resources page offers key information on:
- Associations and programs
- Articles and books
- Simulated demonstrations of listening with hearing loss and devices
- Cochlear implant resources
- Education and accessibility
- Speech and language support
- Social and emotional support
- Apps and more
For questions, contact the Decibels Foundation at (978) 637-2622 or info@decibelsfoundation.org.
The Dysautonomia Project (TDP) is a non-profit, collaborative effort of volunteer healthcare providers, patients and community leaders working together to bridge the gap between what autonomic specialists know and what community-based providers and patients need to know. TDP provides a wide variety of help and information for patients and clinicians, including:
- Dysautonomia: what it is, common symptoms and types
- Patient resources
- Patient support and assistance center
- Patient and clinician webinars and courses
- Help finding a clinician
The Early Years Project is a free online toolkit from the Illinois Early Hearing Detection and Intervention Program featuring easy-to-follow videos, activities and resources. Parents, caregivers, and educators can use these materials to help foster sensory development in young children, from birth to 6 years old.
The Early Years Project toolkit aims to supplement home visiting and early education programs. It includes information on developmental milestones, activities, resources and more in four areas:
- Hearing
- Vision
- Communication
- Language
The HAP Foundation provides patient-centered hospice and palliative care education, research, workforce development and support. The foundation helps any family of a child or adult living with a serious illness understand palliative and hospice care options, and connect to and strengthen care throughout their journey. The HAP Foundation resources also include:
- Palliative and hospice care information for families and medical professionals
- Help for finding and accessing care
- Missing Pieces support group for anyone grieving the loss of a child
- The Pediatric Resource Guide for patients, families and practitioners
- Chicagoland resources and events
For questions, contact the HAP Foundation at (312) 741-1283 or info@thehapfoundation.org.
The official site of the Hearing Improvement Kids Endowment Fund, Inc. (HIKE). The Hike Fund provides hearing devices for children with hearing loss aged newborn to 20 years whose parents are unable to meet this special need financially.
See the Hike Fund application form for more details about eligibility requirements and how to apply. You can also email applications@thehikefund.org for more details about the application process.