Local Families Visited Capitol Hill June 16 to Put a Face to the Funding for Pediatric Healthcare for Special Needs Kids

June 30, 2015

Mountainside, NJ: Several New Jersey families traveled to Washington, DC, June 15-16, 2015, to show public support for the Advancing Care for Exceptional (ACE) Kids Act of 2015. The effort was part of a Speak Now for Kids Family Advocacy Day sponsored by the Children’s Hospital Association (CHA).

The Genovese family of Toms River, NJ and the Salvetti family of Berkeley Heights, NJ, along with more than 40 other families from across the country met with members of Congress to discuss their personal stories and urge passing of the legislation. Of the nation’s 78 million children, approximately three million are living with complex medical conditions.

A family with three children needing specialized pediatric care, the Genovese family is extremely grateful for New Jersey’s Medicaid coverage, and knows their success is dependent on the future of our ever-changing Medicaid system.  Diagnosed with anxiety and post-traumatic stress disorders, Nicole Genovese is now 11 years old. Her sister Alyssa, 11, was diagnosed with apraxia, a motor disorder caused by brain damage. Their brother Jebrill, 14, was born premature and has been placed on the autism spectrum. They all receive ongoing treatment from Children’s Specialized Hospital.

Kara Salvetti suffered an 80 percent loss of blood and a life threatening loss of oxygen at birth which caused multiple health complications. At two months old, she was admitted to the Children’s Specialized Hospital inpatient day program to receive specialized therapy and medical care. Now at 16, Kara continues to receive specialized physician services on an outpatient basis and is completely dependent on her family for every aspect of her daily living and medical needs. 

With over 124 years’ experience partnering with families and caring for children with complex medical conditions, Children’s Specialized Hospital has an invested interest ensuring each and every child receives the care they need to thrive, and the ACE Kids Act of 2015 is the conduit for that success. 

“Passing the ACE Kids Act of 2015 is a top priority for Children’s Hospital Association and children’s hospitals across the country, including ours,” said Amy B. Mansue, president and chief executive officer, Children’s Specialized Hospital. “Each year we see more and more families with children like the Genovese’s  who depend on Medicaid to access highly specialized care. We need to adequately support these families so their children get the best care possible.”

The Genovese family and The Salvetti family met with  Rep. Bonnie Watson Coleman (D-NJ-12); Sen. Robert Menendez; Rep. Leonard Lance (R-NJ-7); Rep. Bill Pascrell (D-NJ-9); and Rep. Frank Pallone (D-NJ-6).

The ACE Kids Act of 2015 would improve care for children with medical complexities who are covered by Medicaid by giving states the option to create nationally designated children’s hospital networks for home, primary, ambulatory, acute and post-acute care. The move would help remove the barriers these families face within the current Medicaid system.

Supported by a bipartisan group of nearly 20 senators (S. 298) and more than 120 representatives (H.R. 546), the ACE Kids Act of 2015 would save Medicaid an estimated $13 billion over 10 years via the networks.

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. 

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