Implementing Reform: Children with Special Health Care Needs

jacobi-176x220_1The public option took a hit on Tuesday, as the Senate Finance Committee rejected amendments adding it to the Chairman’s Mark of the Baucus bill. As I have written previously, a public plan could improve care for the most vulnerable, including those with chronic illness, who tend to struggle for appropriate care under commercial plans. If the public option is dropped, the implementation of the resulting private plan-based system, including enforcement and regulatory design at the federal and state levels, becomes that much more critical to the task of assuring access to appropriate care.

The bills build on the benefits design of the private insurance market, as did Medicare and SCHIP before them. Those programs adopted familiar, private-sector benefits design and payment methods for political and pragmatic reasons: powerful stake-holders were comforted, and implementation was simplified. The bills build on this lineage. The Baucus bill, for example, requires all plans offered by the insurance exchanges to provide:

preventive and primary care, emergency services, hospitalization, physician services, outpatient services, day surgery and related anesthesia, diagnostic imaging and screenings (including x-rays), maternity and newborn care, pediatric services (including dental and vision), medical/surgical care, prescription drugs, radiation and chemotherapy, and mental health and substance abuse services that at least meet minimum standards set by Federal and state laws.

Pretty standard stuff. But describing a slate of covered benefits, and ensuring that that care is properly delivered by private, mostly for-profit firms, are different things entirely.

Take the example of children with special health care needs (“CSHCN”). The Maternal and Child Health Bureau of DHSS defines CSHCN as “…those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” The Catalyst Center at Boston University identifies these children’s health conditions as including:

chronic illnesses such as diabetes, sickle cell anemia, cystic fibrosis, and heart disease; developmental disabilities such as mental retardation, sensory impairments, and autism spectrum disorders; emotional or behavioral health needs including ADHD and mental health conditions; and physical disabilities such as cerebral palsy, spina bifida, or muscular dystrophy.

Simply providing “health insurance” to children with these conditions is no guarantee that they’ll receive appropriate services. A 2002 study by Harriette Fox and others for HRSA reported that insurers have interpreted contract terms to exclude categorically some conditions such as mental retardation or “inorganic disorders.” Others have limited medically necessary services such as speech therapy or habilitation therapy because they are not curative or restorative, but merely needed to maximize a child’s ability to function.

These contract terms and their interpretations have not often been challenged by state departments of insurance, because those terms and interpretations have the power of custom and industry practice behind them. These customs and practices, however, can deny care that children desperately need to live socially integrated and healthy lives. Amy Davidoff and coauthors in 2004 examined the difference in children’s coverage experiences when covered by Medicaid on one hand, or by private plan-mimicking SCHIP on the other, with respect to denial of access to needed services, including medically necessary ancillary services. They reported that,

Medicaid-eligible children tend not to face these concerns, in part because Medicaid explicitly covers medically necessary services not covered by private insurers. To the extent states pattern their SCHIP programs on private insurance and not Medicaid, the children lose that benefit.

The Baucus bill adds to Medicaid’s strength in this regard. At Title II, Subtitle B of the Chairman’s Mark (after the acceptance of an amendment from Senator Debbie Stabenow), a new Medicaid state plan option will permit states to offer, for children with at least two chronic conditions or one serious and persistent mental health condition,

Comprehensive care management; care coordination and health promotion; comprehensive transitional care, including appropriate follow-up, from inpatient to other settings; patient and family support; and referral to community and social support services, if relevant…

What of families covered by the private competitive marketplace of health insurance or SCHIP? The bills speak in general terms of the power of federal and state regulators to ensure adequate and appropriate coverage. This enforcement power should be used to ensure that coverage applies to chronic and disabling conditions as it does to run-of-the-mill medical/surgical cases. Future posts will examine some of the specific enforcement language, which will be key to the realization of the promise of reform to CSHCNs and others with chronic and disabling conditions.

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