Improving Medicaid Programs and Opportunities for Eligible Beneficiaries Act

Floor Speech

BREAK IN TRANSCRIPT

Ms. CASTOR of Florida. Mr. Speaker, I thank Congressman Green for being an outspoken advocate for his constituents, but especially for affordable healthcare for all Americans, especially children. It has been a privilege serving with him.

Mr. Speaker, on behalf of the families with children with complex medical needs all across America, I rise to urge approval of the IMPROVE Act, which includes a bill that I have been working on for a number of years with Representative Joe Barton called the ACE Kids Act.

We drafted the Advancing Care for Exceptional Kids Act a few years ago with the simple but important goal of putting families and children 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.

Caroline West in Tampa, Florida, has a rare genetic condition, also cerebral palsy and a seizure disorder. She can't walk. It is very difficult for her to speak, but she is able to attend 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 what we know is that it is very difficult for her to eat. She has to have a feeding tube, a ventilator to breath, and nursing care 24 hours a day, and yet she is a bright and social 6-year-old.

Jaden Velasquez has a congenital heart defect. He was born with it. The left side of his heart is severely underdeveloped. He has undergone numerous surgeries, yet he is a loving and happy 10-year-old, loves swimming, and is enjoying life.

Lakota Lockhart, with congenital central hypoventilation syndrome, a central nervous system disorder, causes him to not be able to breathe every time he tries to sleep.

I met these children in Tampa, Florida, at St. Joseph's Children's Hospital. They have the world-renowned Chronic-Complex Clinic that was started 16 years ago by a passionate pediatric doctor named Dr. Daniel Plasencia. The ACE Kids Act is modeled after the work being done at St. Joe's by the professionals at the Chronic-Complex Clinic and the 700 kids and families they currently serve and other children's hospitals all across the country.

The families have shared with us how difficult it is to get quality healthcare. It is oftentimes so fragmented and uncoordinated that they have to go from one office to another, and maybe the specialist is in another State. That is why we put together the ACE Kids Act, to help coordinate care in a single setting to help give these kids a better quality of life, and the ACE Kids Act will do just that.

The bill provides an incentive to 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 relating to providing care across State lines.

As so many of these families know all too well, coordinating care across State lines can be burdensome, so that is the aim of the ACE Kids Act: to lift that burden.

In addition to Congressman Joe Barton, who has worked diligently for so many years to get this over the finish line, I thank all of the families with children with complex medical challenges. They deserve credit for moving this bill forward, coming to Congress, and helping to explain the importance of coordinating care.

I also thank Chairman Walden, Ranking Member Pallone, Chairman Burgess, and Ranking Member Green for their support, and our stalwart partners: Representatives Herrera Beutler, Eshoo, and Reichert.

Thank you to America's children's hospitals, the March of Dimes, the American Academy of Pediatrics, and thanks to the professional staff at the committee for your dedication to these families, especially Rachel Pryor, Samantha Satchell, Tiffany Guarascio, and Josh Trent and Caleb Graff on the Republican side.

Additionally, this bill would not be where it is without the stellar work of Representative Barton's staffers: Krista Rosenthall, Gable Brady, Sophie Trainor, and Jeannine Bender, and my LD, Elizabeth Brown.

Passage of this bill will be a gift to so many families during this holiday season and beyond, so I urge my colleagues here in the House and then over in the Senate to pass the ACE Kids Act contained within the IMPROVE Act.

BREAK IN TRANSCRIPT

Source