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.
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.
Do you have questions about Medicaid, SSI, insurance, Medicaid waivers, disability programs, special education, or anything else related to a child’s health or disability? Give us a call at 866-931-1110 or fill out the form at the bottom of the page and we will be happy to provide you with 1:1 assistance.
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 are also just happy to talk!
We partner with Illinois Life Span on monthly webinars and also host an annual Healthcare Conference. View our recent webinars or see upcoming webinars and other events. We can also provide presentations to community organizations, professional groups, and organizations on topics related to children with disabilities.
We lend support in overcoming systemic barriers with our professional partners, including the media and legislature. We share recommendations for changes regarding public policies specific to children with disabilities and their healthcare needs.
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.
