A Berkeley Heights mom plans to be in Washington D.C. Wednesday to address Congress as part of Speak Now for Kids Family Advocacy Day. During the two-day event, Linda Waddell-Salvetti and nearly 30 others who have children with complex medical conditions will meet with lawmakers and urge them to continue supporting strong Medicaid programs for kids.

(Win McNamee, Getty Images)

Before Waddell-Salvetti's daughter Kara was born, she suffered a trauma that resulted in 80 percent blood loss. The child spent two months in the NICU and was finally able to come home, but was diagnosed with severe cerebral palsy.

"With the experts at Children's Specialized Hospital and the Medicaid coverage we had during that time, it was such a value to our family in learning how to care for our daughter," Waddell-Salvetti said. "It helped us put the puzzle pieces back after a trauma and function as a family. Because of everything we learned and the specialists, equipment, medication and services we had access to, we learned how to accept Kara's disabilities and care for her at home. She has been able to attend school full-time. It is a special needs school, but she enjoys it like every other kid."

Of the nation's 76 million children, approximately 3 million are medically complex, including those who:

  • Have diagnoses that are multiple and varied, from cerebral palsy to cystic fibrosis to congenital heart defects and childhood cancers.
  • Are under the continuous care of multiple health care providers in children's hospitals and other settings, often in more than one state.
  • Rely on expensive procedures, treatments, medications, equipment and therapies to maintain their health.
  • Experience frequent acute illnesses and chronic illness exacerbations that are difficult and time-consuming to manage, and result in hospital readmissions.

The population of children with medical complexity is growing at about 5 percent every year, and it is outpacing the population growth of children overall.

"In the beginning, it was a very emotional journey; there was no rule book for a child like Kara," Waddell-Salvetti said. "It was very important to assemble a team and have access to that team to learn, because it's overwhelming being a mom, but even more so with a child with such complex medical conditions. Because of the treatments Kara received and the education we received as her parents, we were able to care for her in our home and try to make life as regular as possible. Without those tools, I don't know that we would've been able to do that on our own."

The experts, and the ability to reach out to them at a moment's notice, have been invaluable to Waddell-Salvetti and her husband.

"Without the specialists and the safety net of Medicaid, our family would be either bankrupt or just traumatized by the whole situation," she said. "We now do normal things like everyone else. We go to Disney World, we go to dance competitions and we even added another daughter to our family."