Egg Harbor Township Family Joins Children with Medically Complex Conditions On Capitol Hill to Address Medicaid’s Role in Child Health

July 03, 2013

No one understands the significance of Medicaid for a child with severe disabilities and the challenges of coordinating  the complex care needed to live, quite like the families who have experienced it firsthand.

The Children’s Hospital Association’s Speak Now for Kids Family Advocacy Day –  hosted 36 medically complex children and their families in late June. The group took to Capitol Hill to deliver an important message to their members of Congress: at a time when access to care is improving for millions of adults, don’t forget the kids.

The Putney family of Egg Harbor Township, N.J. has extensive experience navigating the maze of challenges that come with a medically complex child through many states. Anthony Putney is currently in the US Navy. During a deployment to Japan in 1999, his daughter, Lily was 15-months-old when an ear infection turned into the life threatening “presumed viral encephalitis,” which led to a seizure disorder, developmental delays and cerebral palsy. To receive the specialized care services she needs at Children’s Specialized Hospital, in Egg Harbor Township, N.J., her family has coverage through TRICARE and Medicaid, relying on several different clinicians and specialists in these programs for her care.

“Coordinating care among specialists is a massive task for us. I frequently worry that something will fall through the cracks because there’s no one provider who has the ‘big picture’ on her care needs,” says Lily’s father, Anthony Putney, who is currently in the US Navy and changed professions to become a nurse in order to better manage his daughter’s care.

The Association’s Speak Now for Kids Family Advocacy Day facilitates meetings between families and their elected representatives to highlight key issues that affect their health care, including Medicaid, care coordination and timely access to pediatricians and pediatric specialists. Fourteen-year-old Lily Putney and her family from Egg Harbor Township, N.J. met with Reps. Leonard Lance (R-NJ), Frank Pallone (D-NJ) and Sen. Robert Menendez (D-NJ) on Capitol Hill. (professional photos available online (https://picasaweb.google.com/childrenshospitalassociation
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As states prepare for health reform and the entry of more than 30 million mostly adult Americans into the health care system, these families will call on their representatives to ensure they focus on the needs of children.  

“With all of the discussions about budget cuts and restructuring of entitlements in Washington D.C., it is easy to forget the faces that are impacted by these changes. We are bringing children and their families to Congress to ensure they understand the impact that changes to our health care system, like providing a better support system for care coordination, can have for these families,” says president and CEO of Children’s Specialized Hospital Amy B. Mansue. “Today, medical technology in the United States has allowed medically complex kids to live longer and healthier lives thanks to care innovations. Despite improvements, there is still much work to be done to ensure that this vulnerable population has access to the optimal care within a cost effective framework.”

President and CEO of the Children’s Hospital Association, Mark Wietecha, agrees that advances in care are invaluable, and notes children are surviving conditions that would not have been survivable 20 years ago. The lack of systemic care coordination, however, creates missed opportunities for optimal care.
 
“There’s no doubt that the lack of systemic care coordination translates into missed opportunities for both improving care and controlling costs,” said Wietecha. “Whose job is it to make sure the primary care physician, the nephrologist, neurologist, speech pathologist and the orthopedist are all talking to each other and making sure the child patient is getting the best possible care? In too many cases, the answer is no one. Systemic care coordination is largely absent for these children who often cross state lines to receive care from regional providers.” 

Children’s Specialized Hospital is the nation’s leading provider of inpatient and outpatient care for children from birth to 21 years of age facing special health challenges — from chronic illnesses and complex physical disabilities like brain and spinal cord injuries, to developmental and behavioral issues like autism and mental health. At thirteen different New Jersey locations, our pediatric specialists partner with families to make our many innovative therapies and medical treatments more personalized and effective...so children can achieve more of their goals. 

To help, or find more information: call 888-CHILDRENS; visit www.childrens-specialized.org; Facebook:www.facebook.com/childrensspecialized; Twitter: www.twitter.com/childrensspecnj; YouTube: www.youtube.com/cshnj; LinkedIn: www.linkedin.com/company/children's-specialized-hospitalInstagram: http://instagram.com/childrensspecnj

About the Children’s Hospital Association
The Children’s Hospital Association advances child health through innovation in the quality, cost and delivery of care. Representing more than 220 children’s hospitals, the Association is the voice of children’s hospitals nationally. The Association advances public policy enabling hospitals to better serve children, and is the premier resource for pediatric data and analytics driving improved clinical and operational performance of member hospitals. For more information on Speak Now for Kids Family Advocacy Day, visit www.childrenshospitals.net, or follow the families on Facebook at or Twitter, @speaknowforkids, #FAD13.