Health Condition and Disability-Specific Resources
Spectrum Sailing Summer Camps for Youth With Autism
Spectrum Sailing is a nonprofit organization that provides sailing camps for children aged 10 to 17 with autism. Camp sessions in Chicago typically take place in June. The three-day experience includes learning about the boat’s parts, how to tie knots, and how to sail.
Check Spectrum Sailing’s website for the application and camp deadlines. For any questions about the Spectrum Sailing program or sessions, please call (847) 863-3059 or email info@spectrumsailing.org.
Telecommunications Relay Services Information in American Sign Language
Telecommunications Relay Services (TRS) allow people who are deaf, hard of hearing, deafblind or have speech disabilities to communicate by telephone.
The Federal Communications Commission’s American Sign Language video walks you through the various TRS systems available.
The Answer, Inc. provides resources, education, recreation and advocacy services to families with loved ones with autism and developmental disabilities in the greater Chicago area.
Visit The Answer, Inc., website for more information.
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