Why We Need to Pass the ACE Kids Act for Medically Complex Children

My daughter Caroline was born with a rare neurological condition known as alternating hemiplegia of childhood. Only 800 people worldwide have the condition, and just getting the diagnosis took years of travel to children’s hospitals across the country.

During the early years, when we didn’t have a name for what she was going through, Caroline would cry for hours. She was unable to eat and even the slightest change in her environment caused seizures and severe pain.

We paid out of our own pockets because private insurance wouldn’t cover hospitals outside our Tampa Bay area, much less pay for many of the recommended medications and therapies. And so traveling for our daughter’s very unique condition connected us to families all over the United States. In fact, there are millions of families who struggle to coordinate care for their children with complex conditions across many states, facilities, regulations, and payment systems.

In addition to seizures, Caroline needs a wheelchair, is developmentally delayed and has cerebral palsy. She has been hospitalized for a full spinal fusion, chronic pneumonia and seizures that are uncontrolled for up to 12 hours. Prior to Caroline’s long-awaited diagnosis, we had seen 29 different specialty care providers for care. I carried a huge notebook of her charts everywhere so I could readily produce explanations of her medical history.

But that was before we heard about the Chronic-Complex Clinic at St. Joseph’s Children’s Hospital and before we were approved for the Medicaid Medical Waiver Program. We never imagined needing a government program to help us with health care, but now we only wish we had this support sooner.

Today we visit one location where nearly all the specialists she needs are on the same floor. If she does need hospitalization, she can see the exact same doctor she sees regularly — I don’t need to pull out my giant notebook and provide a briefing. This familiarity is so comforting, but it’s also efficient, resulting in faster treatment, less time in the hospital and better outcomes for Caroline. And we know the results are similar for other clinic patients. Hospital admissions, emergency visits and the length of hospital stays have been cut in half thanks to the clinic’s focus on coordinated and integrated care.

Now traveling less for Caroline’s care, we decided to take a different kind of trip to Washington, D.C. last summer to testify before Congress in support of the Advancing Care for Exceptional Kids Act — the ACE Kids Act.

The ACE Kids Act would do a lot of great things, but two of its pieces are particularly important to families like ours. First, it would enable implementation of coordinated care networks for children with complex medical conditions in Medicaid across the nation. Other families could put down their giant notebooks knowing care integration and coordination was being managed by a medical home of health care providers who are expert in the needs of children with medical complexity.

Second, it would help patients more easily cross state lines for care under the Medicaid program. Unfortunately, our current Medicaid system isn’t designed for patients who need to cross state lines for care. But when you have a child with a rare disease, travel is often necessary in order to get highly specialized care that is only available at precious few locations.

There is little time left for the ACE Kids Act to pass this year. Families of children with complex medical conditions need help now.

Please join me by signing this petition and asking Congress to pass the ACE Kids Act. Our kids can’t wait.

We want to hear your story. Become a Mighty contributor here.