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Hales Corners family travels to Washington, D.C., to advocate for children’s health care

May 28, 2015

Pumpkin Patch 2013_webFamilies will ask Congress to take action to protect health care for children

The Lynch family of Hales Corners, Wis., will join 44 other patients and families from children’s hospitals across the country to speak with members of Congress during the Children’s Hospital Association’s Speak Now for Kids Family Advocacy Day on June 14-15. Cailinn Lynch, 7, and her parents, Kelly and Brian, will be among those sharing their story about lifesaving medical care and discussing the importance of federal policies that provide Cailinn, and millions of other children, access to high-quality pediatric care.

Millions of children in the U.S. receive special care at children’s hospitals, regardless of the child’s family income or health insurance, to address their health challenges. Medicaid is the single largest insurer for children. Approximately 53 percent of our patients at Children’s Hospital of Wisconsin (CHW) are insured by Medicaid, including many with some of the most complex illnesses. While children’s hospitals account for less than 5 percent of the hospitals nationwide, they provide about 47 percent of all inpatient hospital care for children on Medicaid and almost all the hospital care required by children with complex conditions.

Federal policymakers must maintain a strong, stable Medicaid program so that children are able to receive timely, quality health care.  Having regular access to health care keeps kids healthy and keeps their cost of health care low. Children’s hospitals across the nation are working together through the Children’s Hospital Association to advance innovative policy reforms that will lead to better care and lower costs while maintaining standards children rely upon. Children’s Hospital of Wisconsin President and CEO Peggy Troy currently serves as chair of the Children’s Hospital Association Board of Trustees.

One such policy is the Advancing Care for Exceptional Kids Act (ACE Kids), which seeks to improve care for children with medical complexity on Medicaid while helping contain costs.  The bill has garnered significant bipartisan support in Congress.

The national ACE Kids Act builds on the success of Children’s Hospital of Wisconsin’s Special Needs Program, which provides specialized, coordinated care for kids with medical complexity. Since 2002, through this program CHW has managed the needs of approximately 600 medically complex children in the state. The program receives high satisfaction rates by enrolled children and families and has resulted in decreased health care costs by reducing the number of days patients spend in the inpatient setting.

The Lynch family knows firsthand the value of quality pediatric care. When Cailinn was born she was diagnosed with an Unbalanced Chromosomal Translocation of her 5q/9p, which was just the third case diagnosed with this type of genetic arrangement in the world. At that time, doctors told Cailinn’s parents, Kelly and Brian, the unthinkable news that the prognosis was terminal and that she would not survive past eight weeks.  Cailinn’s parents continued to receive the grim diagnosis until she was four years old and doing well. Cailinn first came to Children’s Hospital of Wisconsin when she was three months old with respiratory issues. Since then Cailinn has undergone more than two-dozen surgeries and procedures, including tracheostomy, heart surgery, and regular scopes and biopsies. She has spent more than 400 days as a patient in the hospital, most of which was in her first three years. Her care is coordinated through Children’s Special Needs Program, which specializes in providing care for kids with medical complexity due to multiple chronic conditions. The team works with children and families, doctors, community resources and insurers, to make sure each child is getting the best care in and out of the hospital.

About Children’s Hospital of Wisconsin
Children’s Hospital of Wisconsin is the region’s only independent health care system dedicated solely  to the health and well-being of children. The hospital, with locations in Milwaukee and Neenah, Wis., is recognized as one of the leading pediatric health care centers in the United States. It is ranked No. 4 in the nation by Parents magazine and ranked in all 10 specialty areas in U.S. News & World Report’s 2014-15 Best Children’s Hospitals report. Children’s provides primary care, specialty care, urgent care, emergency care, community health services, foster and adoption services, child and family counseling, child advocacy services and family resource centers. In 2013, Children’s invested more than $105 million in the community to improve the health status of children through medical care, advocacy, education and pediatric medical research. Children’s achieves its mission in part through donations from individuals, corporations and foundations and is proud to be a member of Children’s Miracle Network Hospitals. For more information, visit the website at chw.org.

About the Children’s Hospital Association
The Children's Hospital Association’s Speak Now for Kids Family Advocacy Day program provides children's hospitals, patients and families the opportunity to travel to Washington, DC to advocate on behalf of current child health legislation. The event features a fun-filled and family-friendly program tailored to accommodate the unique needs of children's hospitals, patients and families.
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