Health Condition and Disability-Specific Resources
G-Tube Notebook Videos from Children’s Wisconsin
Children’s Wisconsin’s G-tube Notebook videos offer information and step-by-step help for taking care of a child’s feeding tube. The videos include an introduction to understanding feeding tubes as well as videos specific to caring for and changing tubes in English and Spanish.
Children’s Wisconsin’s PEG tube video provides information and demonstrations on what to expect after the tube is placed, including:
- Care after surgery and helping the site heal
- Types of PEG tubes
- Tips for caring for and stabilizing the tube
- Primary tube change
- Common problems
Generation Patient is a nonprofit organization created by and for young adult patients with chronic, complex, rare or undiagnosed medical conditions. The organization’s focus includes providing peer-support groups, roundtable discussions and helping to drive systems-level change through policy work, leadership programming and advocacy initiatives across healthcare and research spaces.
Generation Patient also offers:
- “Creating Spaces for Young Adults with Chronic Conditions,” a step-by-step toolkit with resources and strategies for finding and creating peer support
- Virtual community-led peer-support groups for young adults (ages 18 and up), including:
- A general group for young adults with chronic and rare medical conditions,
- A support network and resources for students with disabilities,
- A higher education group for patients in college or graduate school,
- A group for young adults with irritable bowel disease (IBD)
Get Covered Illinois – The Official Health Insurance Marketplace Resource
Get Covered Illinois is the health insurance Marketplace resource for the state of Illinois. Get Covered Illinois provides information about health insurance coverage provided under the Affordable Care Act (ACA).
Get Covered Illinois provides:
- Information and support to help Illinois residents understand insurance and the importance of health insurance coverage
- Access to health plans through Healthcare.gov
- Free enrollment help from Get Covered Illinois Navigators by phone or in person in multiple languages and in your community
Get Covered Illinois is a division of the Illinois Department of Insurance (IDOI).
GiGi’s Playhouse: Down Syndrome Achievement Centers
GiGi’s Playhouse: Down Syndrome Achievement Centers provide free, nationwide on-site and virtual educational, therapeutic-based and career development programs for individuals with Down syndrome, their families and the community. Programs are available for individuals of all ages focusing on speech and language, social skills, cooking and fitness.
GiGi’s Playhouse Illinois locations include:
- Chicago
- Deerfield
- Fox Valley
- Hoffman Estates
- McHenry County
- Quad Cities
- Rockford
- Tinley Park
For questions, visit GiGi’s Playhouse website, call (847) 885-6149 or email info@gigisplayhouse.org.
GiGi’s Virtual Playhouse offers opportunities to build relationships and community connections and access free programming and resources tailored for individuals with Down syndrome. The playhouse serves individuals with Down syndrome of all ages, expecting moms and dads, caregivers, siblings, parents, grandparents, doctors, educators, volunteers and more.
GiGi’s Virtual Playhouse provides a variety of programs focused on therapeutic needs, educational needs, career development and global acceptance. You can log in to the virtual playhouse to access on-demand programs for all ages, resources for supporting a loved one with Down syndrome and communities of other parents, self-advocates and volunteers.
For questions, visit the GiGi’s Playhouse website.
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:
For questions, email IACP at homesafe@theiacp.org.
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.
