Children like Alex would be helped by the ACE Kids Act
Alex bravely reaches towards the future. Though his parents feared he might not survive his early years, Alex has faced his medical challenges head on and learned to prosper in spite of them.
Like his sister, Maddy, Alex has mitochondrial disease; he also has been diagnosed with adrenal insufficiency, immune deficiency, dysautonomia, chronic intestinal pseudo-obstruction and pancreatitis.
Due to these serious conditions, Alex’s care is very complex and ongoing. He requires major interventions to remain stable and his medical status changes frequently.
Alex sees 12 specialists and has spent significant time admitted to Cook Children's Medical Center. Without the specialized care offered at Cook Children’s, Alex may not have survived. Because of his serious medical complexity, Alex receives health insurance coverage through Medicaid. This coverage has been vital to ensuring Alex has access to the care he needs, and that Cook Children’s has the resources it needs to treat Alex.
The Advancing Care for Exceptional (ACE) Kids Act would help strengthen Medicaid for families like Alex’s — to better coordinate the care of kids dealing with medical complexity, to make it easier for them to see pediatric specialists in another state, and much more. Once passed by Congress and enacted, the ACE Kids Act would enable teams of pediatric providers to integrate and coordinate care specifically designed for these children.
The ACE Kids Act would help improve how care is delivered to America’s children with complex medical conditions on Medicaid -- kids like Alex.