If anyone has ever had or known of a child with special health care needs, they may have heard about the Ill and Handicapped Waiver, also known as the Katie Beckett Waiver. When Katie was 6 months old she fell ill with viral encephalitis, requiring hospitalization and placement on a ventilator. She was never able to be weaned off the ventilator and after a couple of years her family tried to advocate to be able to care for her at home. This was the beginning of 1980 and was an unprecedented request. By 1981, however, with a lot of door knocking on Capitol Hill, her mother, Julie Beckett, was able to convince lawmakers to provide financial funding under Medicaid so that children like Katie could go home rather than stay in hospitals or institutions. A great deal of gratitude should also go to then President Ronald Reagan, who led the charge after his press conference in November 1981.
Katie was able to go home on a ventilator, which she needed for most of her day, although as she got older, she could go for longer periods of time during the day off the ventilator. She went on to school, graduated high school and then graduated from Mt. Mercy University in Cedar Rapids, IA. She had been a consultant on Hilary Clinton’s presidential campaign. She was a tireless advocate for home care with dignity for children with special health care needs. I was lucky enough to meet Katie a couple of times over the decades. The last time was as she and her mother were waiting for an airplane to go to DC.
Katie Beckett died last night. She will be sorely missed but there are many families who are grateful for her and her mother, Julie’s, efforts for all of our special needs children.
Good bye Katie and God Bless.