New Brunswick, NJ – Last week, the Victoria-Garcia family from Kenilworth, NJ, whose son, Anthony, receives care from Children’s Specialized Hospital (CSH) met virtually with members of Congress about the importance of prioritizing children’s health as part of the annual Children’s Hospital Association’s Speak Now for Kids Family Advocacy Day. More than 40 patient families from children’s hospitals across the country raised important issues that affect their children’s care. Since Anthony’s autism diagnosis in December 2020, the Garcia family has faced many changes in their lives and felt it critical to increase awareness about the ongoing and essential care provided by children’s hospitals like CSH.

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, solving the mental, emotional and behavioral health crisis in children and increasing funding to train physicians in pediatrics. Anthony, his mom Jacky, and Matthew B. McDonald III, MD, President and CEO, Children’s Specialized Hospital, met virtually with Senator Bob Menendez (NJ), Congressman Tom Malinowski (NJ-7), and Representative Bill Pascrell, Jr. (NJ-9) as well as staff from the offices of Senator Cory Booker (NJ) and Representative Frank Pallone (NJ-6).

At 18 months, Anthony had around 10 words in his vocabulary, but others just weren’t coming. His mother, Jacky, noticed things weren’t developing like they should be. When Jacky reached out to Anthony’s pediatrician, there weren’t a ton of answers, so she did some additional research. “After that, we reached out to Children’s Specialized Hospital to have Anthony evaluated and met neurologist Dr. Malik,” said Jacky. “That was also the day my world completely turned around.”

Anthony was diagnosed with autism and soon started speech and occupational therapy at CSH. He excelled in his occupational therapy by reaching all of his goals, however, he still struggles with language skills. “The diagnosis made it real and put a mirror up to my face that I had been trying to avoid,” said Jacky. “But I was not alone. Right away, Dr. Malik provided me with references for support groups and guided me through the initial steps. She showed she cared and wanted to help make this easier for me to process.”

Speech therapy has provided Anthony with tactics to communicate and better express what he needs and wants. Additionally, CSH provided Jacky with tools and lessons to incorporate at home. Jacky also credits Medicaid for the essential care Anthony needs. “As a special needs parent, I want to provide my son with all the available tools,” said Jacky. “Medicaid has paved a way for us, while relieving us from the financial burden that could arise from this new lifestyle. I can only pray for it to continue this way. Life may have thrown us a curveball, but our game is just getting started.”

Nationwide, approximately 35 million children rely on Medicaid for health care coverage. Roughly, 2 million children with complex medical conditions also rely on Medicaid for access to specialized pediatric care. Yet in tough budget times, Medicaid is frequently 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.

Patient families also count on timely access to doctors trained to care for them and their unique needs. Funding for the training program for pediatric providers, 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 half 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.

“Children’s Specialized Hospital is honored to partner with Anthony, Jacky, 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 Matthew B. McDonald III, MD, President and CEO, Children’s Specialized. “Together, we can make children’s health a national priority through policies that ensure kids have the opportunity to reach their full potential. 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.”

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 healthcare challenges – from chronic illnesses and complex physical disabilities like brain and spinal cord injuries, to a full scope of developmental, behavioral, and mental health concerns. At 15 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 rwjbh.org/childrensspecialized.

Learn more about Speak Now for Kids Family Advocacy Day; read stories about the patient champions and cheer on the families on Facebook, Twitter and Instagram.