Health Condition and Disability-Specific Resources
The Social Security Administration (SSA) offers toolkits for people with sickle cell disease and professionals navigating the disability application and evaluation process. The toolkits provide detailed information, examples of the types of medical evidence required for individuals with sickle cell disease, and tips to help with the disability application and evaluation process:
Southern Illinois University Center for Autism Spectrum Disorders in Carbondale
The Center for Autism Spectrum Disorders (CASD) at Southern Illinois University is an interprofessional training and research center providing information and services to area residents with autism spectrum disorder (ASD) and their families. CASD offers ASD screenings, clinical services for children, adolescents and adults, webinars and support.
CASD faculty and students provide a variety of training and services, many at no cost to families and their children. Help is available in the following areas:
- Speech/language
- Social skills
- Emotional-behavioral concerns
- Toileting
- Sleep
- Picky eating and more
For more information, call (618) 453-7130 or email autism@siu.edu.
Spanish Language Resources for Families & Children Who are Deaf or Hard of Hearing
Hands & Voices (Manos y Voces): Unbiased parent-to-parent support and Spanish-language resources for families and children who are Deaf or hard of hearing.
American Speech-Language-Hearing Association (La Asociación del Habla, Lenguaje y Audición): The organization provides Spanish-language information for the public and families with children who are deaf or hard of hearing.
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.