When Katie’s dad and I wanted to try to bring Katie home after a three-year hospitalization, we were informed that Medicaid did not pay for home care. She had used a million dollar major medical policy in less than two years and had become eligible for Supplemental Security Income because she was living in a hospital and not with us at home. In our state, that meant she became eligible for Medicaid. It took a change in federal law to get her home in December 1981. No one had ever challenged the regulation that prevented this from happening. But with the help of the doctors, nurses, social workers, and our Congressman (Tom Tauke), we applied and received an “exception to policy” which led to the waiver programs being implemented and the TEFRA amendments becoming available to states.
I believe in the power of advocacy because of this, especially family advocacy. A wise pediatrician, Dr Dave Alexander, who currently heads the Lucille Packard Foundation in California, once said that the most exciting and rewarding opportunities he ever had in advocacy is when he and I went to Capitol Hill together to meet with our Iowa delegation. Dr Alexander served as the CEO of Blank Children’s hospital in Des Moines for a time.
We, with the FamilY Partnerships Network (FPN), believe in advocacy by families at all levels. Whether it be individual, group, or organizational advocacy, we believe families can teach decision-makers - those at policy levels, to make rules and regulations that help, not hinder, families in assisting their children with special needs to live happy, healthy lives in their communities. It is really what we want for all children.