Protecting Children's Interests under the Affordable Care Act

Federal health care reform offers a unique opportunity for states to improve and standarize the medical services relied on by millions of the nation's children who suffer from diabetes, asthma, autism and other debilitatiing illnesses. But a major hurdle remains: figuring out exactly which benefits, on what type of schedule, private insurers and state exchanges will be required to cover. 

States will need to define a minimum package of services, known as essential health benefits, that all providers must offer starting in 2014.  Defined too broadly, the cost of providing these essential benefits could skyrocket, defeating the cost-containment goal of the Affordable Care Act; defined too narrowly, the public health goal could suffer, leaving vulnerable children to face life-long consequences from inadequate health services when they were young.  

I have launched an intensive reporting project to examine how states and policymakers approach this balancing act.  Last December U.S. Health and Human Services Secretary Kathleen Seblius set the stage for a contentious debate on the issue, when the department issued guidelines for states to follow in developing their package of essential health benefits. 

Advocates for children's health have found fault with many aspects of the HHS proposal, starting with the basic premise that states must pick from a variety of existing health plans to model their essential benefits package for children.  The problem?  All the existing plans they can choose from were designed for adults, not children.  You wouldn't shop for your 8-year-old's back-to-school clothes in the men's department at the mall; likewise, argue children's advocates, you shouldn't try to make children fit into a health plan designed for grown-ups. 

Critics cite many other concerns:  whether children who already receive the gold-standard of preventive pediatric services through Medicaid's Early Periodic, Screening, Diagnosis and Treatment (EPSDT) program will see their benefits watered down under ACA; whether prescription drug coverage, oral and vision care will be adequate for developing children; and whether the flexibility offered states under the HHS proposal will defeat the ACA goal of national standards of quality medical care. 

In addition, pediatric medicine relies heavily on what are called habilitation services, which teach patients skills to promote healthy functioning.  These services are absent from most adult insurance plans, yet they are critical for children with chronic conditions who must learn to, say, monitor and control their blood sugar levels, or clear airways during an asthma attack.  Advocates want habilitation services to be offered at parity with more traditional forms of health care under the ACA.

With the support of a grant from the Lucile Packard Foundation for Children's Health Journalism Fund, I will examine all these issues through a series of radio reports to air on KQED's statewide public radio newsmagazine "The California Report."  I hope to also produce a print report and web coverage of this looming battle.  I see my biggest challenge as explaining the complicated nature of HHS guidelines and the technical arguments of advocates on all sides of these issues, without losing sight of the very real human consequences for sick children and their families. 

Good preventive care and a wide range of early interventions could keep many children from developing costly chronic conditions later in life, but these services won't be free, and with so much on the line, stakeholders are preparing their campaigns.