Kathy Castor: “I thank my colleague and friend, Dr. Ruiz, for yielding the time. Mr. Speaker, on behalf of families of children with…”

“I thank my colleague and friend, Dr. Ruiz, for yielding the time. Mr. Speaker, on behalf of families of children with complex medical needs--and there are many families like this all across America--I rise to urge approval of H.R. 1839, which includes a bill I have been working on for a number of years with my colleagues, including former Representative Joe Barton. It is called the ACE Kids Act. We drafted the Advancing Care for Exceptional Kids Act a few years ago with a simple but important goal of putting children and their families first. The bill authorizes the creation of cost-saving and time-saving health homes where specialized care is coordinated in a high-quality setting. Mr. Speaker, the children with complex medical conditions and their families are heroic, like Caroline West in my hometown of Tampa. She has a rare genetic condition, cerebral palsy, and a seizure disorder. She can't walk, and it is very difficult for her to speak, but she attends school part time and enjoys the life of a typical teenager, in many respects. Lucy Ferlita is the only living person in the United States with early onset myopathy with areflexia, respiratory distress, and dysphagia. Very little is known about this disease, but we know that it is very difficult for her to eat. She has to have a feeding tube, a ventilator to breathe, and nursing care 24 hours a day. Jaden Velasquez has a congenital heart defect.…”