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Mother of Iowa Child Instrumental in Rules Change Named to Study Panel

October 31, 1986

WASHINGTON (AP) _ The mother of Katie Beckett, the little Iowa girl whose health plight led President Reagan to change Medicaid’s rules in 1981, was named Friday to help run a federal study of how to care for children who depend on medical technology to stay alive.

Health and Human Services Secretary Otis R. Bowen said Julie Beckett of Cedar Rapids will be vice chairman of an 18-member Task Force on Technology- Dependent Children created by congressional order.

The panel’s instructions are to make recommendations by April 1988 on ways to remove present barriers to children receiving special services.

Mrs. Beckett’s daughter was instrumental in getting a major barrier removed in 1981 when Reagan learned that the then-3-year-old was being kept in a hospital because Medicaid would not pay for her care at home.

Katie, now 8 and a thriving third-grader, was stricken with viral encephalitis in infancy and needs a respirator to breathe while she sleeps. She lived in a hospital from 5 months until she was 3 1/2 .

When her family and doctors wanted to send her home, they discovered Medicaid would not pay for home health care, although it was much less expensive than hospitalization.

Reagan cited it as an example of mindless red tape, and Medicaid soon adopted what has become known as ″the Katie Beckett waiver,″ which federal health officials extended to 200 others from 1981 to 1984.

Since then the government has relied on states, which run their own Medicaid programs, to decide when to issue waivers for home and community- based care. Campbell Gardett, an HHS spokesman, said 47 states now have waivers, ″but unfortunately not all cover technology-dependent children.″

Katie now needs a ventilator only six to eight hours a day and is ″doing just fine,″ said her mother, a program assistant at Child Health Specialty Clinics in Cedar Rapids.

Bowen, a family doctor himself, said, ″We want to focus attention on the delivery and payment of health care in private and public health care programs that affect technology-dependent children, and develop a strong public-privae partnership on the state level to aid the children and the families.″

The task force will be chaired by Dr. Robert Kettrick, an associate professor at Children’s Hospital of Philadelphia. Surgeon General C. Everett Koop, formerly a surgeon at that hospital, is also on the task force, which will hold its first meeting in Arlington, Va., on Dec. 4-5.

The other members are:

Betsy Anderson, director of Federation for Children with Special Needs, Brookline, Mass.; Nancy Grote of Child Care Technology, Fort Wayne, Ind.; Dr. Herbert Cohen of the Einstein College of Medicine, the Bronx, N.Y.; James Bellor, administrator of The Hospital for Sick Children, Washington, D.C.;

Fred Abbey, manager of Ernst & Whinney, Cleveland; Jean Elder, acting assistant secretary for human development services in the Health and Human Services Department; Teresa A. Hawkes, a Defense Department medical director; George Grode, Pennsylvania’s state tax commissioner;

Aaron Johnson, commissioner of Georgia’s Department of Medical Assistance, Atlanta; Dr. Joseph Jurkoic, vice president and chief medical director of Travelers Insurance, Hartford, Conn.; Dr. Fred Nomura, president and regional medical director of Kaiser Permanente in Portland, Ore.; E. Gene Thrasher, executive vice president, Blue Cross-Alabama, Birmingham;

Stephen Nagy, executive vice president of Avon Products, New York; Dr. Stephen Holland, vice president and medical director of the Health Data Institute, Lexington, Mass.; and H. Paul Womack, a member of the DeKalb County, Ga., Board of Education.

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