Medicaid Changes Should Include Care for Special Needs Children

As the new Administration embarks upon its first hundred days, it and the Congress have come to Washington with the promise of big changes – big, quick changes – to the health care system.

Congress has already begun to put together its budget for fiscal year 2017, and has signaled its intent to roll back several provisions of the Affordable Care Act in the near future. In the medium term, both Congress and the administration are giving significant thought to changing Medicaid, including how it is funded, how it pays for health services, and the role that Medicaid enrollees play in their own health care.

Medicaid, however, is a more complex and extensive program than is generally acknowledged. Wholesale changes to funding mechanisms may have adverse consequences for many of the populations that rely upon this program for coverage.

One such group is children with special health care needs – a population that includes more than 1 in 7 children in the U.S. These children have or are at risk for having chronic conditions which often require services from across the health care spectrum, including specialists and people who provide other social services.

Children with special needs benefit significantly from having their care highly coordinated. Fortunately, care coordination is an area of health care in which Safety Net Health Plans have substantial expertise.

A high degree of care coordination is important because without it, the team of health care providers working for a child can often work at cross-purposes, leading to what’s known as “fragmented care.” Fragmented care is something most of us have experienced in our lives at one point in time or another: tests you need to take more than once, visits that get postponed owing to missing health records from elsewhere, or missed referrals. All of us may have had this happen to us once or twice, but for children with special health care needs or their families, it can be a way of life.

ACAP-member Safety Net Health Plans — nonprofit, community-based health plans — play an increasingly important role in helping to coordinate care for children with complex needs. Our plans perform sophisticated data analyses to identify children and others who could benefit from a high level of medical service, provide targeted resources to patients and provider teams, and bring together services and supports for these children and their families.

Safety Net Health Plans have developed innovative approaches ranging from data-mining to embedding health plan workers in area clinics or other settings to help coordinate care for children whose high level of need leads to a high degree of difficulty. We have chronicled those approaches in a new research paper that shows the way in which a plan can serve as a locus of coordination, and sanity, for families who have children with special needs.

It bears noting that that not so long ago, many of the 11 million children in the U.S. who meet the criteria for special health needs would simply have not survived – advances in medicine have led to children leading lives of a length and richness that was until recently unimaginable. Such advances are also a reason why the number of children with special health needs is expected to roughly double over the next decade — which means that the expertise of Safety Net Health Plans in providing close care coordination will be at an even greater premium.

Many children with such high levels of need get their health coverage through Medicaid, and it covers more than people with low incomes — through waivers known as the “Katie Beckett Program,” children with long-term disabilities or complex medical needs can qualify for Medicaid benefits without regard to family income.

The Medicaid program has evolved substantially since its founding more than fifty years ago. Quick, dramatic changes, which may convey bold action, may substantially disrupt coverage for millions of people who rely on Medicaid, and destabilize the business environment for Safety Net Health Plans, whose mission is to serve those same populations.

Many advocates of Medicaid reform are approaching reform with a goal of genuine systemic improvement. Such improvements, however, can and should be brought forth deliberatively and with input from key stakeholders.

Safety Net Health Plans know that there are solutions out there that are true improvements on the Medicaid program as it stands today — and indeed we are the solution for providing better coverage and care — Safety Net Health Plans will provide the same enthusiastic support that they have for legions of past health care innovations. Like everyone who relies on the health care system, children with special health care needs rely on consistency, quality, and above all, coverage.

Margaret A. Murray is the CEO of the Association for Community Affiliated Plans.

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