Health Condition and Disability-Specific Resources
Give an Hour – Rare Caregivers
Give an Hour aims to create resilient communities of support for rare disease caregivers and families. Through one-on-one peer support, group support, professional training and research, Give an Hour strives to build a sustainable support system for rare caregivers.
Visit the Give an Hour Rare Caregivers website to find peer support, self-care tips, support groups and more.
Global Genes is a non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. It aims to connect, empower and inspire the rare disease community.
The Global Genes website includes a RARE Portal, which is an online community for patients, caregivers and more to share resources and create discussion groups.
Grupo SALTO (Sociedad de Autismo Latina Trabajando con Optimismo) aims to provide support in Spanish for Latino families who have children who are differently abled, with a focus on autism.
Grupo SALTO provides culturally and linguistically appropriate training, education and services.
Guidance for Responding to Incidents Involving Missing Children with Autism
The International Association of Chiefs of Police (IACP) provides law enforcement and caregivers with guidance on preparing for and responding to incidents involving missing children with autism. Information includes:
Hands & Voices is a non-profit, parent-driven organization dedicated to supporting families of children who are deaf or hard of hearing. They are non-biased about communication methodologies and believe that families can make the best choices for their children if they have access to good information and support.
Hands & Voices Guides and Resources for Deaf/Hard of Hearing Plus
Hands & Voices provides a variety of resources specific to children who are deaf/hard of hearing plus – the combination of being deaf or hard of hearing and having additional medical complexities or other needs.
Information includes the “Connecting Families of Children who are Deaf or Hard of Hearing Plus (DHH Plus) with Resources and Support” guide, an Educational Plan Checklist for D/HH-Plus Students and presentations, articles and other guides for families of children who are D/HH plus.
Hands & Voices Virtual Waiting Room
Hands & Voices virtual waiting room provides resources and connections for families with children who have been referred to or are in the care of an audiologist and who are receiving those services through technology or “telehealth.” Much of the information is also useful for families who are preparing for onsite visits.
Hands & Voices virtual waiting room includes:
- A video about the importance of next steps when your child is referred for more testing after a hearing screening
- A guidebook for parents about audiology and telehealth
- Information about tele-audiology options
- Questions to ask your audiologist, understanding your child’s audiogram, help making decisions with communication and more
- Connections to family-to-family support from trained parent leaders
- Explanations of help offered by a variety of professionals in addition to your child’s audiologist
- Resources to promote health and well-being for you and your child
- A link to email a Hands & Voices trained parent who can answer your questions and direct you to additional resources
Heart of Illinois Down Syndrome Association
The Heart of Illinois Down Syndrome Association (HOIDSA) offers support and information to help families adjust to the special needs of a child with Down syndrome. Its programs and resources for families and caregivers include Individual Education Program (IEP) resource providers, conference and classroom stipends, and events to increase inclusion and understanding of people with Down syndrome.
The association’s service area in central Illinois includes Peoria, Marshall, Tazewell and Woodford counties.
For questions, visit HOIDSA’s website contact page, call (309) 363-3125, or email info@hoidsa.org.
HIPP Program Tip Sheet and Application
The Health Insurance Premium Payment (HIPP) Program pays health insurance premiums for some children who have high medical costs and who have private health insurance available.
This HIPP Program Tip Sheet from the Division of Specialized Care for Children (DSCC) explains the program’s availability and how to apply. (The HIPP Tip Sheet is also available in Spanish.)
You can also find copies of the HIPP Program application in English and HIPP Program application in Spanish.
Hire Autism is a free program from the Organization for Autism Research to help autistic job seekers find meaningful employment opportunities and connect with autism-friendly employers.
The site features include a searchable jobs board and resource library, profile and job board navigation tutorials, personalized job alerts and autism- or disability-related employment events. Job seekers can request free one-on-one virtual assistance with resume and cover letter writing as well as interview preparation through Hire Autism’s volunteer mentoring program.
