Medicaid Services Investment and Accountability Act of 2019

Floor Speech

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Ms. CASTOR of Florida. Mr. Speaker, 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.

Lakota Lockhart has a central nervous system disorder that causes him to not be able to breathe while he sleeps.

I met all of these kids back home in Tampa at St. Joseph's Children's Hospital. St. Joe's has a world-renown Chronic-Complex Clinic that was started 16 years ago by a compassionate pediatrician, Dr. Daniel Plasencia. This ACE Kids Act is modeled upon their work and the other good work being done at children's hospitals across this country.

The bill provides an incentive for States to establish health homes to better coordinate care for kids with medical complexities. It also directs HHS to provide guidance to States on best practices.

Mr. Speaker, I urge my colleagues to adopt this bill with the ACE Kids Act included.

Mr. Speaker, I include in the Record a letter from a whole host of organizations thanking us for our leadership and for introducing this bipartisan legislation to improve care for children with complex medical conditions.

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