One local family took their story to Capitol Hill last week to urge Congress to advocate for children with special health care needs across the nation. The Panarese family, from Westfield, NJ, joined nearly 50 patients and families in Washington D.C. for the 14th annual Speak Now for Kids Family Advocacy Day.
At one year old, Christian Panarese was diagnosed with Cerebral Palsy, a neuromuscular disorder caused by damage to the brain during birth that affects muscle coordination, motor development, movement, reflexes and balance. The Panarese family was told Christian would never talk, feed properly, or have the chance to be a regular kid. With guidance from his physical medicine and rehabilitation specialist, Christian immediately began outpatient therapy five days a week at Children’s Specialized Hospital to improve his strength and coordination to give him the best life possible. Through daily physical, speech, occupational, aqua and augmentative therapy, Christian began holding his own sippy cup, speaking, writing his name and defying the odds one milestone at a time. Now 19 years old, Christian graduated Westfield High School with honors and is enrolled in a vocational school studying graphic design, all of which would not have been possible without the comprehensive benefits provided through the Medicaid program.
Christian, his parents Nancy and Frank, and Warren E. Moore, FACHE, President and Chief Executive Officer, Children’s Specialized Hospital, met with Senator Robert Menendez and Congressional members Leonard Lance (NJ-7), Frank Pallone (NJ-6), and Bill Pascrell (NJ-9), and staff from the office of Senator Cory Booker. The hospital representatives urged them to improve health care for children with complex medical needs by safeguarding Medicaid and reauthorizing the Children’s Hospitals Graduate Medical Education (CHGME) program. The Panarese’s efforts in Washington, D.C., were part of a broad national push to address key health care needs for children by the Children’s Hospital Association (CHA).
“If it weren’t for Medicaid, Christian would not be where he is today, it’s as simple as that,” said his mother, Nancy Panarese. “Bringing Christian to Washington D.C. not only puts a face to the numbers but allows our elected officials
to hear first-hand what their support means to families in New Jersey.”
Roughly six percent of children enrolled in Medicaid have complex medical conditions like Christian, requiring specialized care from a variety of doctors. While they make up a small part of the overall pediatric population, they represent a large share of Medicaid spending on children—approximately 40 percent.
“Families like the Panareses are facing complex health care challenges and uncertainty about their child’s future. It is critical to protect Medicaid to allow these families to focus their full attention on their child’s care and recovery,” said Warren E. Moore, FACHE, President and Chief Executive Officer, Children’s Specialized Hospital. “Protecting Medicaid will allow us to continue to fulfill our commitment to our patients and families and ensure healthier futures for children across the United States.”
Click here to see the full album of photos from Family Advocacy Day!
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-hospital
Children’s Hospital Association is the national voice of more than 220 children’s hospitals, advancing child health through innovation in the quality, cost and delivery of care.
http://www.childrenshospitals.org | www.speaknowforkids.org
Learn more about Speak Now for Kids Family Advocacy Day; read stories about the child patients coming to D.C.; and follow the families on Facebook, www.facebook.com/speaknowforkids, and Twitter, @speaknowforkids, #SpeakNowForKids.