The Arc of Illinois Family-to-Family Health Information Center works with families and professionals to assist with questions and concerns related to the health of children and youth with special health care needs (CYSHCN) and disabilities under the age of 22. We put our extensive parental and professional experience to work to help other families access resources, communicate with medical providers, and raise children at home in their communities. Contact us if you need help!
We are thrilled that K’s Medicaid was approved. Our heads are spinning with the speed at which your contacts accomplished this task. We are very grateful.
– A parent
We understand how challenging healthcare and disability systems can be, which is why we focus on sharing the most thorough, up-to-date resources regarding health insurance options, government benefits, youth transition concerns, and much more. Together, we help your child to thrive in the community.
We share knowledge and know-how to make health-related decisions and raise children at home. We guide informed decisions through accurate, current information and resources for all types of public and private health coverage.
We help families connect with local, regional, statewide, and national partners for support, information sharing, and skill building. We build partnerships between families and professionals for easy-to-navigate support systems.
We empower families to become family leaders, affording opportunities to develop and enhance leadership skills on the local, state, and national levels. We offer webinars, an annual conference, and other outreach events.
We lend support in overcoming systemic barriers to appropriate care together with our professional partners. We share recommendations for changes regarding public policies specific to CYSHCN issues and challenges.
We are part of a national network of Family-to-Family centers across the United States, funded by the federal government. We are also the State-Affiliated Organization (SAO) for Family Voices, Inc. Our caring, knowledgeable staff members are parents and family members with extensive personal and professional experience in this field.
Susan is a parent, advocate, and writer who began serving as the Director of the Family-to-Family Health (F2F) Information Center in 2024, assisting families of children and young adults with disabilities and special healthcare needs to navigate the health care and disability systems in Illinois. She has lived experience through her daughter Karuna, who had multiple disabilities and complex health issues throughout her eleven years of life. Susan is the founder of MFTD Waiver Families and spent more than a decade advocating for children in the Medically Fragile Technology Dependent Waiver. In addition, she is an independent researcher on children’s Medicaid waivers and programs, including the website Kids’ Waivers. In the past, she has also contributed content to a wide range of disability organizations, including Complex Child Magazine and Feeding Tube Awareness Foundation. She holds a PhD from Northwestern University, where she used to serve as a Lecturer in Music Studies before switching her focus to advocacy.
Need help? The Family to Family team is here for you.