PACER Center provides information and resources for families of youth with disabilities on transition planning, civil rights, work-based learning, higher education and more.

 

PACER Center’s Transition Health Plan for Youth with Disabilities and Their Families is designed to help transition-age youth with disabilities and their families assess and plan together the next steps for the youth to take on more responsibility for their own health care.

The Sibling Leadership Network provides siblings of individuals with disabilities the information, support and tools to advocate with their brothers and sisters. Their website offers ways to get involved, policy and advocacy information, and family-specific resources, including resources for teenage/young adult siblings, adult siblings, and parents and family members.

If you have any questions, please use the online Sibling Leadership Network contact form.

The Danny Did Foundation works toward its mission to prevent deaths caused by seizures with these main goals in mind: advancing public awareness of Sudden Unexpected Death in Epilepsy (SUDEP), enhancing the SUDEP communication model between medical professionals and families afflicted by seizures, and mainstreaming seizure detection and prediction devices that may assist in preventing seizure-related deaths.

The Danny Did Foundation’s grant program provides financial assistance to qualifying individuals to purchase seizure detection and seizure prediction devices.

For questions, please call (800) 278-6101 or complete the online Danny Did Foundation contact form.

The Illinois Emergency Management Agency (IEMA) and the Illinois Deaf and Hard of Hearing Commission (IDHHC) provide a series of videos and preparedness messages in American Sign Language (ASL).

Topics include:

• Emergency planning
• Emergency planning for people with special needs
• Evacuation
• Flooding fast facts
• Building a kit

The Illinois Emergency Management Agency provides preparedness tips for people with visual, cognitive or mobility impairments; people who are deaf or hard of hearing; those who utilize service animals or life support systems; and senior citizens.

The U.S. Election Assistance Commission created this comprehensive list of resources for voters with disabilities, which includes links to voting accessibility laws and regulations and the latest best practices and research pertaining to voters with disabilities.

The Transition QuickGuide checklist provides information and resources about health insurance coverage, self-care, health care transition, decision-making and career planning and management.

You can visit Got Transition’s website for more information on the process of getting ready for health care as an adult.

For questions, please contact Got Transition at info@GotTransition.org or (202) 769-0486.

Bounce Children’s Foundation is a Chicago area non-profit that aims to transform the lives of chronically ill children and their families, shifting all from surviving to thriving. The foundation serves children from birth to 18 years of age.

Bounce’s free programs aim to build the resilience needed to cope with the ongoing, unexpected setbacks that define chronic illness. Programs include family adventures, education to strengthen vital coping skills, donated tickets to high-demand events, themed care packages for families, access to resources, peer support and more.

For any questions, please email info@BounceChildrensFoundation.org or call (844) 626-8623.

A free online social community of survivors and family caregivers who share information and inspiration. Support Network members trade tips, compare notes and shore each other up when the going gets rough. Members also have access to healthcare professionals who can answer their questions. Plus, specialized resources from the American Heart Association.