1 Family Support In Iowa
Iowa’s First Family Navigator
Child Health Specialty Clinics (CHSC) has been providing direct support to families for over 35 years, hiring Iowa’s first Family Navigator, Julie Beckett, in 1984. Julie was the mother of Katie. When Katie was 5 months old, she contracted encephalitis, was left partially paralyzed, and spent most of her early years in the hospital. When she was 3 years old, doctors cleared Katie to go home, although she still needed to be on a respirator for 12 hours a day. Her insurance had been depleted and Medicaid refused to pay for her care unless she was hospitalized, even
though treatment could be administered to Katie at home for one-sixth of the cost.
Julie Beckett advocated for her daughter to be able to receive care at home, and in 1981, Katie’s case got the attention of President Ronald Reagan. President Reagan not only waived the rule so that Katie could go home, but in 1982 signed what became known as the “Katie Beckett Wavier” allowing all children with disabilities to receive Medicaid supports at home.
Although Katie died in 2012 at the age of 34, the legislation that bears
her name (also known as the Health and Disability Waiver) has allowed hundreds of thousands of children receiving Medicaid to remain at home with their families instead of being institutionalized. Julie worked at CHSC for 30 years and now serves as a consultant with Family Voices and the American Academy of Pediatrics.
CHSC Family Navigators
CHSC currently employs around 30 Family Navigators, all of whom are the parent or primary caregiver of a child or youth with special health care needs. Family Navigators are based at all 13 Regional Centers across Iowa, living and working in the communities they serve. In addition to providing support to families, these professionals also provide meaningful input from the family perspective to all CHSC programs, policies, and initiatives.
View a narrated slide set celebrating Iowa’s unique contribution to improving the system of care for children with disabilities in the United States. https://youtu.be/stVNMXFFXL4
In addition, a timeline of important events in the history of disability activism is included in the back matter.