ChangeMakers: Julie and Katie Beckett
Maureen Mitchell, Family Voices coordinator, and Katie Beckett
Julie Beckett made disability history in 1982 when she refused to give up on her dream that her infant daughter, Katie, could, should and would be cared for at home. At the time, the medical community and the insurance companies believed that only medical professionals could perform the near-constant care Katie required. One month later, in December 1981, after spending the first three years of her life in a pediatric intensive care unit during where her parents actively participated in her day-to-day care, the family was convinced it was time to bring Katie home. The government was not so easily convinced. Complex rules and regulations prohibited the family from taking her home.
Julie Beckett refused to give up and continued to push for reform at the state and federal levels. After six grueling years, Julie's persistence paid off when Congress passed TEFRA, the Tax Equity and Fiscal Responsibility Act of 1982. The home and community-based waiver program, often called the Katie Beckett Waiver program allowed kids who otherwise would have been forced to be institutionalized or hospitalized, to be treated at home by keeping them eligible for Medicaid. The new program has helped over 500,000 people with disabilities, especially children, to live in their homes and communities.
At age 10, Katie joined her mother as an outspoken advocate for disability rights, testifying before Congress, personally visiting senators and representatives and training others to advocate for themselves. Together, Julie and Katie founded KASA - Kids As Self-Advocates - a self-advocacy organization designed expressly for children with disabilities to help them become active participants in their health care. Katie graduated from Mount Mercy College in 2001.
- Parts of this article contains information adapted from an article that originally appeared in the Spring 2002 issue of "The Heart of It...," a newsletter produced by Parent to Parent of Vermont. For more information check out: http://www.partoparvt.org/02sKatie.html.