One local family took their story to Capitol Hill virtually last week to urge Congress to advocate for children with special health care needs across the country. Aiden Shanklin, a Children’s Specialized Hospital (CSH) patient, and his mom, Nicole Horton, joined more than 50 patients and families for the 16th annual Speak Now for Kids Family Advocacy Week. Nicole and Aiden felt it was particularly important to raise awareness about the ongoing and essential care provided by children’s hospitals now during the COVID-19 pandemic.
Speak Now for Kids Family Advocacy Week gives children’s hospitals and patient families the opportunity to advocate for federal policies, such as the need to keep Medicaid strong for kids and timely access to pediatric specialty care. Aiden, Nicole, and Warren E. Moore, FACHE, President and CEO, Children’s Specialized Hospital and Senior Vice President, Pediatric Services, RWJBarnabas Health, met virtually with Congressional members Frank Pallone, Jr. (NJ-6) and Donald M. Payne, Jr. (NJ-10) as well as staff from the offices of Senators Cory Booker (NJ) and Bob Menendez (NJ) and Congressman Bill Pascrell (NJ-9).
When Aiden was 9 months old, Nicole became concerned because he had trouble holding his head up and had no trunk control. A pediatrician diagnosed Aiden with cerebral palsy (CP), a disorder of movement, muscle tone or motor skills caused by damage to or abnormal development of the brain. CP symptoms often include exaggerated reflexes, floppy or rigid limbs and involuntary motions.
Aiden lived with this diagnosis for six years. Then he was taken to see Adam Aronsky, MD, a developmental and behavioral pediatrician at CSH in Mountainside. Dr. Aronsky felt that Aiden’s clinical picture did not align with those of CP patients, and suggested that he undergo genetic testing. That led to the discovery that Aiden actually had a GRIN2B mutation, a genetic disorder with symptoms very similar to CP.
Today, Aiden sees four specialists at CSH including a developmental and behavioral pediatrician, a physical medicine and rehabilitation physician (physiatrist), a neurologist, and rehabilitation technician. They provide necessary services to help him reach his full potential including Botox injections that assist with the parts of Aiden’s body that have high muscle tone (spasticity), assessment of neurological episodes, and the creation of medical equipment for his unique needs. Aiden has been able to continue visits with his care team virtually via telehealth even amidst the COVID-19 pandemic which has been essential for his health and development. None of this would be possible, however, without Medicaid.
“We are thrilled to partner with Aiden, Nicole, and other families from across the nation to elevate patient stories and educate lawmakers about the essential role of children’s hospitals and the Medicaid program during these very challenging times,” said Warren E. Moore, FACHE, President and CEO, Children’s Specialized Hospital and Senior Vice President, Pediatric Services, RWJBarnabas Health. “Together, we can ensure our nation’s children have the opportunity to reach their full potential.”
Nationwide, Medicaid provides health coverage and benefits to one in three children. Yet, Medicaid is a target for state-level and federal cuts that will make it harder for Medicaid providers like children’s hospitals to deliver care including critical behavioral health services. On average, children’s hospitals devote half of patient care to children reliant on Medicaid. Annually, 58% of children cared for at Children’s Specialized Hospital have Medicaid coverage.
Patient families also count on timely access to doctors trained to care for them and their unique needs. Funding for the training program for children’s doctors, the Children’s Hospital Graduate Medical Education (CHGME) program, lags far behind the funding of training programs for physicians caring for adults. Children’s hospitals in the CHGME program receive just 50% of what hospitals caring for adults receive for similar training programs – threatening the supply of doctors caring for our nation’s children. Family Advocacy Week also serves as a platform for children’s hospitals to request that Congress increase funding for CHGME.
The COVID-19 pandemic has compounded these impacts on children’s hospitals. Standing down from providing essential patient care to supporting national surge planning has adversely impacted children and their hospitals. Relief funding for children’s hospitals has been significantly lower than relief received by other hospitals, despite incurring $10 billion of financial losses in 2020.
“I am confident that the members of Congress we spoke with this week understand the important role children’s hospitals, Medicaid and CHGME play in children’s health, especially during this unprecedented time,” said Moore. “I look forward to working with them to safeguard the medical care and behavioral health services needed by so many families in New Jersey and across the country.”
About Children’s Specialized Hospital
Children’s Specialized Hospital is the nation’s leading provider of inpatient and outpatient care for children and young adults from birth to 21 years of age facing special health care 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 13 different New Jersey locations, our pediatric specialists partner with families to make our many innovative therapies and medical treatments more personalized and effective so each child can reach their full potential. For more information, visit www.childrens-specialized.org.