As Congress begins again to consider policies related to health spending, there’s no better time to increase awareness of the health care needs of America’s children who could be most affected by major health policy changes.
My husband and I were thrilled to welcome our son Caleb in 2010. We knew we were having a boy, but what we did not know was that our son would be born with a Congenital Heart Defect (CHD) called Transposition of the Great Arteries. Three days after his birth, Caleb had open heart surgery to help his heart properly circulate blood through his body. We came to learn that Congenital Heart Defect (CHD) is the most common birth defect, affecting more children than spina bifida and Down syndrome, yet many remain unaware of this condition and the needs of the 40,000 children born with CHD annually in the U.S.
Most of the specialized cardiac care CHD kids need is provided in children’s hospitals. These regional institutions see an average of 30,000 cardiac cases per year. Of these cases, 45 percent rely on Medicaid for that care. Not just for those from families with low incomes, Medicaid helps cover children from all backgrounds when serious medical issues suddenly require a level of care above and beyond the needs of most kids. It took a while for my family to understand the longevity of Caleb’s condition. We had insurance through my husband’s employer and assumed there wasn’t any financial help available to us. Yet, at some point we realized Caleb was not “fixed.” His appointments and therefore the medical bills would not stop.
In addition to his medical needs, Caleb developed some developmental delays common in children with CHD due to several risk factors including low oxygen at birth, time spent on a bypass as a newborn, and not being allowed to do tummy time for six weeks after his surgery. In addition to medical appointments throughout the first two years of life, Caleb also started receiving speech, occupational and physical therapies.
Thanks to cutting-edge research and treatments, children with CHD and other complex medical conditions are seeing better outcomes. But these innovations are only effective if they are made available to all patients who need them. Last year, Congress debated changing the way Medicaid is funded by capping federal support for the program, but what was proposed would have resulted in deep cuts to children’s portion of Medicaid funding. It is understandable, even necessary, to address budgetary concerns when funding federal programs such as Medicaid. However, proposals that would place a cap on federal Medicaid contributions put children’s care at risk by transferring costs to states that may not be able to cover them. It is up to Congress to make and keep children’s health a top priority.
A better option for Medicaid reform is to instead focus on incorporating innovative delivery care models tailored to the unique needs of these children, which will produce cost savings while protecting access to care. To that end, Members of Congress on both sides of the aisle have shown support for the Advancing Care for Exceptional Kids (ACE Kids) Act of 2017, including a bipartisan group of Ohio’s delegation. This important legislation addresses challenges identified by families and physicians, including care across multiple providers and services, and easing access to out-of-state care. If passed, this legislation would help to improve the coordination and quality of care for kids with complex medical conditions enrolled in Medicaid and allow parents to focus on what’s most important, their child.
There are roughly 3 million children in our country who have a complex medical condition like CHD, and 2 million of them rely on Medicaid for primary or secondary health coverage. These children also account for about 40 percent of all Medicaid spending on children, as complex medical conditions require frequent appointments for specialty care, sometimes multiple times per month, in addition to expensive medications.
Because of Medicaid, we knew we could continue taking Caleb to his therapy appointments that were necessary for him to grow and develop into the best possible Caleb he could be. Children covered by Medicaid, compared to those who are uninsured, enjoy better health, educational and economic outcomes as they grow to become healthy and productive adults. For children with CHD like my son, Medicaid helps ensure they receive the care necessary to reach their full health potential.
