June 11, 2008
||Media contact: Krista Hopson
Local family travels to nation’s capitol to raise awareness for children’s health care funding
Mott patient Lili and her mom will meet June 19 with federal lawmakers about coverage, cost, continued access for kids’ health care
ANN ARBOR, Mich.
– Julie Newland and her 5-year-old daughter Lili Whitaker will travel from Ferndale to Washington, D.C. to speak on June 19 with federal lawmakers about the fate of children’s health care, and the essential role that children’s hospitals play in the community. The meeting is part of national Family Advocacy Day
, coordinated by the National Association of Children’s Hospitals.
Along with other families from across the United States, Julie and Lili – a transplant patient at the University of Michigan C.S. Mott Children’s Hospital
– will bring to light concerns about health care coverage, costs and continued access to the specialized and high quality of care provided by children’s hospitals.
Currently pending in Congress is a bill that would stop implementation of rule changes to Medicaid totaling $12 billion to $15 billion in cuts to health coverage for children. These proposed changes would drastically reduce important health care programs such as rehabilitation services and transportation of disabled children to and from schools.
These cuts also will severely impact the care that children’s hospitals can provide and could curtail the delivery of health care services needed by children with some of the most serious health care needs.
Julie hopes the trip will demonstrate to lawmakers the serious concerns families across the nation have about the proposed cuts, as well as highlight the work done by local children’s hospitals. She also plans to share Lili’s story when she meets on June 19 with U.S. Rep. John Dingell
(D-Mich.) and Sen. Carl Levin
Lili was diagnosed in utero with Potter's Syndrome, a congenital birth defect that causes the malformation or absence of kidneys. Against the odds, Lili survived birth, and spent the first two months of her life at Mott, where she received dialysis for End Stage Renal Disease. At 14 months, she received a kidney transplant; her mom was the donor. Today, Lili is a gregarious preschooler who loves to read, sing, watching movies, and spend time with her cousins. Lili has received continued care at Mott, and her mom also is a member of the hospital’s Patient and Family Advisory Council.
On June 18, Julie and Lili will take part in a satellite radio tour. The pair will be available to share their story, and details about their trip, to reporters from 7 a.m.
to 1 p.m. To schedule an interview, contact Kristin Francini at (202) 745-5107 or email@example.com
“Children’s hospitals provide care to the sickest and most vulnerable children in our nation, with approximately half of all patient care in children’s hospitals paid for by Medicaid,” says Lawrence McAndrews, president and CEO of the N.A.C.H. “Medicaid cuts of this type would hinder our ability to provide clinical care, training and pediatric health research that benefits children, particularly children with the most complex medical conditions.
The children participating in Family Advocacy Day range in age from 1 to 19, and are current or former patients of children’s hospitals nationwide. With diagnoses ranging from Leukemia to cerebral palsy, the children and their parents hope to raise awareness for the important specialized care that children’s hospitals provide, and to stress the significant role that SCHIP and Medicaid play in helping ensure that these valuable services are available to all children who need them. On average Medicaid and SCHIP patients account for more than 50 percent of all patient care at children’s hospitals nationwide.
Nationwide, children’s hospitals account for less than five percent of all hospitals but they provide nearly 40 percent of all hospital care for children and the majority of care for children with serious medical conditions. Children’s hospitals are responsible for providing training for the majority of pediatricians and virtually all pediatric subspecialists and research scientists.
For more information on Family Advocacy Day and to follow two blogs—one written by 15-year-old patient Cedric Walker and another written by parent Zac Ives, whose child Anna is a brain tumor survivor—visit www.childrenshospitals.net