After a recent meeting with a Richardson, Texas, family whose four-year-old son has a heart defect and other health complications, Rep. Joe Barton, R-Texas, said he redoubled his efforts to get a bill passed this year to help “medically complex” cases.
Working with Democrats and other Republicans, Barton, the chairman emeritus of the House Energy and Commerce Committee, helped produce draft legislation that updates an earlier version of a bill intended to improve care for children with complex illnesses under Medicaid, the federal/state health care program that serves the poor. The changes would increase the kinds of health facilities that could coordinate such care. The earlier version had given that responsibility only to children’s hospitals.
At a hearing Thursday before the House Energy and Commerce Committee’s subcommittee on health, doctors, other health providers and a mother of a daughter with multiple conditions testified in support of the revised legislation, which would replace the original bill, known as “Examining the Advancing Care for Exceptional Kids Act” or ACE Kids Act.
“This hearing marks a substantive step forward for the ACE Kids Act,” said Barton after the hearing. “Our aim is simple – to put medically complex children and their families first. The current burden placed on these families is overwhelming, to say the least.”
By coordinating care with specialists and emphasizing home care, Barton said the approach would save the government money.
His Democratic co-sponsor, Rep. Kathy Castor, a Florida Democrat, said that the initial legislation had 200 cosponsors and that she and Barton “are on a path to work with our colleagues in this great bipartisan effort to pass the ACE Kids Act, which will significantly benefit our most vulnerable patients with complex medical conditions.”
The Richardson boy, whom Barton identified to McClatchy as Kaleb Prinz, was born with a congenital heart defect and other complications that affect his ability to eat and drink, Barton said.
“This courageous soon-to-be five-year-old, along with his father, mother and grandmother came to my office to share their story and explain first-hand how the access to a complex coordinated care clinic changed and saved their lives, in more ways than one,” Barton said. According to Barton’s office, Prinz is being treated at Children’s Medical Center of Dallas.
Individual states, which administer the Medicaid program, can have very different criteria for approving procedures or appointments with specialists. Under Barton’s legislation, states could opt into a program that would offer a coordinated treatment scheme for children with complex medical conditions.
Rick Merrill, president and chief executive officer of Cook Children’s Health System of Fort Worth, testified that “it is clear the current system, working within the limitations of a state by state approach, lacks the necessary organization . . . to best serve this unique population of children and their families.”
Barton, who presided for part of the hearing, said that the House only had seven legislative weeks left before the November elections but he would push for a mark-up of an updated bill in September and quick passage.
In the House, the original ACE Kids bill has 212 cosponsors, and a companion bill in the Senate has 38 cosponsors, indicating strong bipartisan interest in the issue.