The halls of a children’s hospital are not something you forget. If you’ve been there, the experience sticks with you. As does the courage shown by so many young patients within those walls. For a parent, having confidence that your child is getting the best possible care, and that the doctors and nurses are all part of the same team — your team — can get you and your family through the long, hard days.
My own family has been bedside-to-bedside with families with a child requiring specialized care for kidney failure, cystic fibrosis, cancer and other serious diagnoses.
Navigating life with a baby or child who needs specialized treatment is hard enough for any family; those challenges are compounded for families who are financially struggling. And when you add in the families who also live in rural communities, a difficult situation becomes a nearly impossible one. Too many faces come to mind during discussions about the challenges in our current health-care system when it comes to medically complex children of families on Medicaid — called Apple Health in Washington state.
If a child is facing a serious medical challenge, and could obtain treatment in another state, Medicaid may not allow it. Because Medicaid is a state-based program, medically complex kids are mostly limited to the hospitals within their home state. Tragically, these restrictions can prevent children from accessing treatment.
But as of April 18, that changed. On that day, the president signed into law my bipartisan Advancing Care for Exceptional Kids Act — or ACE Kids Act. This legislation makes it so that medically complex kids of families on Medicaid won’t be restricted from accessing the often lifesaving care they need simply because of their ZIP code.
For the 300,000 medically complex children in the U.S. who depend on Medicaid, that program can often be a roadblock.
A single mom of four met with me in my Vancouver, Washington, office and shared how she couldn’t get approval to take two of her medically complex kids 15 minutes away to Doernbecher Children’s Hospital in Portland. She was told she would have to drive three hours north to Seattle Children’s Hospital to get Medicaid to cover ongoing care for her kids. That’s when I knew this must change.
With ACE Kids Act now the law of the land, we have removed that barrier between kids and the treatment that could potentially save their lives.
Another challenge with the current system is the ability to coordinate care. To enhance critical care for these children, ACE Kids Act creates networks anchored by children’s hospitals. States would choose to opt into this network, allowing families to seamlessly pursue the best doctors and facilities in their home state, or in another state.
I was pleased to partner with Seattle Children’s Hospital on this legislation. The CEO, Dr. Jeff Sperring, summed up the ACE Kids Act as legislation that “will improve access to the full range of pediatric providers, from primary care to specialized providers like Seattle Children’s, while at the same time providing additional Medicaid data to ensure care is standardized, more reliable and safer. This will result in a better system for our nation’s children and their families.”
My hope is that ACE Kids Act is just a starting point for improving medical access to quality care for children. Low-income kids who face challenging medical needs are some of society’s most vulnerable members. We can’t fail them.
ACE Kids becoming law means that children’s hospitals can be places of hope, regardless of a child’s background or how much money their parents earn. It also shows that, in an era where so many potential solutions get caught in partisan gridlock, lawmakers from both sides of the aisle can actually work together to improve the lives and health of our children. Our work isn’t done until all families and kids have the opportunity to get the care they need.