Ensuring Minimum Benefits for Children with Special Health Care Needs Under Health Care Reform

The Affordable Care Act is scheduled to go into full effect in 2014. As part of the federal government’s preparation for implementation, the Department of Health and Human Services (HHS) has requested comments on its proposal for minimum benefits that each state must guarantee in its insurance plans. These are known as the Essential Health Benefit package.

The Essential Health Benefit package is, of course, particularly important for children with chronic conditions and multiple medical needs. These children not only use more health care services, but also require more complex services over longer periods than those needed by most children. An inappropriate benefit package can dangerously limit the services children with special needs may obtain, jeopardizing their health.

The Lucile Packard Foundation for Children's Health believes that the scope and content of the Essential Health Benefit package must provide all necessary pediatric services, including preventive, developmental, mental, dental, acute, chronic and habilitative services that are required to assure and optimize children's health and well-being. Such a benefit package, one that assures appropriate access, care and quality for children with special health care needs, will be adequate to meet the needs of all children.

Our Foundation has written to HHS Secretary Kathleen Sebelius expressing this belief, and requesting that she consider the following in developing the Essential Health Benefit standards.

1) The HHS proposal for coverage suggests that states use the largest HMOs or the Federal Employee Health Benefit Plan (FEHBP) as their benchmark. This approach perpetuates the misuse of adult health care experience to guide children's health care coverage. The service needs of children, especially children with chronic or complex health problems, are different from those of adults, and thus require a benefit package designed to meet their unique needs.

Allowing states to design their own approach for caring for children with special health care needs is potentially harmful. HHS should guarantee access to high quality care for these children. A study in the New England Journal of Medicine found that children in private coverage plans are twice as likely to be underinsured, perhaps due to narrow definitions of medical necessity in these plans.

2) The Early Periodic, Screening, Diagnosis and Treatment program in Medicaid (EPSDT) is the only benefit package that is designed explicitly for children, and is sufficiently comprehensive to offer appropriate access to all medically necessary services for children with special health care needs. It is especially strong in assuring that necessary preventive care is available.

However, Medicaid grants states flexibility to interpret federal regulations and to modify the benefit package they offer. This has resulted in striking disparities in the access children have to various services, depending on the state in which they live. Similar inequities are likely to follow the adoption of other benchmark benefit plans unless they are designed to meet children's needs, and flexibility is minimized.  The benchmark for essential benefits for children is the Medicaid program of the states that perform best on measures of children's health care, e.g., largely the New England states and Iowa. These are the standards that should be used in the Essential Health Benefit package.

3) A major distinction between coverage designed for adults versus children is the provision of habilitation services for children. Habilitation services are defined at the federal level as "health care services that help a person keep, learn, or improve skills and functioning for daily living." Habilitation services conforming to this definition are a core component of the EPSDT benefits and should be similarly prominent in the Essential Health Benefit package.

The concept of habilitation services is virtually unknown to insurers who have designed benefit packages for adults. Our Foundation supports the proposal that habilitative services would be offered at parity with rehabilitative services. However, adopting EPSDT as the standard for children's benefits would be preferable.

HHS is still considering public comment on the Essential Health Benefit package.
I urge you to send your own comments to:
Secretary Kathleen Sebelius
U.S. Department of Health and Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201

Posted March 9, 2012


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