Q&A: ACE Kids Act Signed into Law

With U.S. Senator Chuck Grassley

Q: Why did you introduce the ACE Kids Act?                                                                                                                                     

A: Signed into law by President Trump in April, the Advancing Care for Exceptional Kids Act seeks to fix a hole in the delivery of care for children with complex medical needs. Most Iowans likely know of a family in their hometown communities who is overwhelmed by the many challenges to coordinate countless medical appointments and specialized nutrition, medicine and daily, around-the-clock care for a child with complex medical needs, such as cancer, congenital heart disease, epilepsy, cystic fibrosis, cerebral palsy or other chronic health conditions. As medical innovation in pediatric disease management, including pharmaceutical drugs and specialized therapies, have improved life expectancy for children with chronic health conditions, it also presents challenges for families and care providers who deliver pediatric care. Since Medicaid was enacted five decades ago, children born today with Down syndrome may expect to live more than 60 years instead of just 12 years, for example. And babies born with cystic fibrosis today may expect to live well beyond 30 years from just 10 years in 1965. Advances in modern medicine bring hope to so many families. And yet, many children with medically complex needs may require hands-on, 24/7 services. It can be an overwhelming undertaking for families to shoulder the burdens and coordinate the complex level of care outside of hospitals. Of the three million children with complex medical conditions covered by Medicaid, this group of kids represents only six percent of the children covered by Medicaid. However, these pediatric patients take up 40 percent of the expenses. I introduced the bipartisan ACE Kids Act to help improve health outcomes, reduce unnecessary hospitalizations and provide better coordination of care for these families. Many of these young patients depend on multiple health care providers and may travel long distances for medical appointments, even across state lines. For example, children with complex medical needs on average require five or six specialists and some see up to thirty health and allied health care professionals for their care. These families already are shouldering plenty of extra financial and emotional burdens beyond the daily grind of holding down jobs and running a household. Helping these families navigate the bureaucracy and cut red tape makes sense and will ease at least a bit of the extra burdens that weigh heavily on their hearts and minds.

Q: How will the new law help these families?

A: As chairman of the Senate Finance Committee, I use my congressional legislative and oversight authority to improve policies that matter in the everyday lives of Americans. From taxes to health care, higher education and retirement security, I go to work every day to be the voice for Iowans and make a difference on issues that matter most to them. Every parent who tucks a child into bed at night hopes that tomorrow is an even better day for their kids. For the parents who shoulder the additional worries about a child with complex medical needs, it came to my attention that making a couple changes to Medicaid might ease some of their burden. My bipartisan bill is intended to empower families and enable their child’s team of pediatric health care professionals to better coordinate care and identify best practices that best meets the needs of each child. By assigning case managers to help families navigate the health delivery system and coordinate the continuum of care, these reforms ought to help improve quality outcomes for these young patients, lower costs, reduce visits to the emergency room and give better peace of mind to parents when their heads finally hit the pillow at the end of a long day. In the meantime, I will continue my efforts at the helm of the Senate Finance Committee to improve the nation’s health care system, from reducing the rising costs of prescription drugs to upholding standards of care in the nation’s nursing homes.