• "ZAP Asthma," in which seven Atlanta-area health plans and local public health clinics will train community health workers to work with 200 families of children with asthma;
  • Health Services for Children With Special Health Needs, Inc., a Washington, D.C.-based organization coordinating health care services for Medicaid recipients, including transportation, social services, respite care, and limited-use telephones for families without phone service; and
  • Health Partners in Minneapolis working with a local parent advocacy coalition to develop a streamlined referral process and a flexible benefits package for children with chronic conditions.

Although these initiatives are certainly worthwhile, they are only available in a few communities. Evaluations of these programs could yield useful information that can help in the design and development of programs in other communities.

Although we have private insurance, there are many charges that our insurance company is refusing to pay. We have an annual out-of-pocket deductible of $2,000 before they begin paying at 100 percent. This 100 percent is for "usual and customary charges." The medical providers bill us directly for the remainder of the charges.

Karen LaPlante

Parent, Dublin, VA

Public Workshop, June 2, 1997

Public Coverage For Special Health Care Needs

Historically, the public sector has taken the lead role in financing care for low-income and vulnerable populations. The services needed by families with children with special needs are funded by a mixture of federal, state, and local sources. The services are typically administered at the state and local levels, with significant variation in eligibility, availability of services, coordination among programs, and outreach and public education efforts.

Medicaid pays for health care services for low-income children with and without disabilities and is the major source of federal funds for medical services for special needs children. Medicaid generally covers health and related services for children who receive Supplemental Security Income (SSI), a cash benefit for low-income families with disabled children. It also covers services for children who are institutionalized. States may provide services for children with special health care needs under the Maternal and Child Health Services Block Grant (Title V) of the Social Security Act. This section gives a brief overview of the role of these programs with regard to special-needs children.


Because the benefit package in the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program was specifically designed to address the needs of special-needs children (NIHCM, 1995), these expanded services—usually provided by nonmedical agencies or by other professionals such as advanced practice nurses or clinical nutritionists—are more likely to be covered by Medicaid than by private plans.

On a national basis, the average cost of EPSDT benefits for healthy children is typically about $1,000 to $1,500 per year, whereas the cost for special-needs children can approach $5,000 to $6,000 per year (NIHCM, 1995, p. 17). State-specific estimates of costs are generally not available, but average costs are likely to vary significantly by state, region, health care market, as well as by diagnostic and procedural categories.

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