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Workgroup Summary: All families of CSHCN will have adequate private and/or public insurance to pay for the services they need.

1. The Contributions of the Grantees

As a group, the grantees discussed what "adequate insurance" means. Members noted that no gold standard currently exists that can be used to assess whether a child’s health plan meets or fails to meet a level of coverage that could be deemed adequate. Ideally, the concept of adequacy should relate to the services needed to assist the child in reaching desired outcomes for the child and family. Desired outcomes can include:

• Assuring that the child remains at home

• Maintenance of current levels of independence and functionality

• Achieving a successful developmental transition

• Avoidance of undue financial hardships on the family, such as loss of parental employment

How health outcomes are defined and who participates in the decision-making process are important elements in determining whether coverage is adequate. Different groups (that is, insurers, program administrators, providers, and families) have different perspectives on this issue, and these different views must be acknowledged and integrated in an overall process of defining medical necessity. From a practical vantage point, adequacy of the selected plans can be compared in terms of the set of benefits that they offer and the limitations in scope, duration, and frequency that they impose on particular children. Plans also can be assessed in terms of how they operationalize their approach to medical necessity definitions, although written guidelines may not reflect the common problems that occur when frontline case managers deny parents’ requests for nontraditional arrangements.

There was general agreement also that the Medicaid benefit package is far more comprehensive than the benefit packages offered by most private insurance plans. State Medicaid programs cover primary care services, specialty care, medications, associated therapies, supplies and equipment, and transportation services. Private plans are typically restricted to medical treatments, some types of associated therapies, and medical equipment.

Although the Medicaid benefit package is comprehensive compared to private plans, states vary widely in what the Medicaid program will cover. The extent to which optional services are included in the state Medicaid program, the nature of contracts between Medicaid agencies and managed care plans, and operational procedures for limiting plan expenditures all have contributed to major national disparities in access to services for this population.

Although none of the currently funded projects are directly engaged in assessing adequacy of insurance for this population of children, many of the grantees’ efforts have led to important conclusions related to this issue. These lessons include the following:

• Most state Medicaid programs are currently focused on maximizing coverage rates and decreasing the proportion of uninsured children. In addition, there are troubling trends of increased cost-shifting toward families through higher co-pays and deductibles. Fewer employers are offering family coverage at affordable levels. These issues are critical in many states, and efforts to enhance adequacy of insurance for children with special needs must recognize the degree of attention and concern that these issues are commanding. However, the member of this group also indicated that now is the time to start building the foundation for enhancing adequacy of coverage.

• An effective strategy for developing political support to enhance adequacy of insurance coverage for this group involves conceptualizing two categories of services: medical services and wrap-around services. This approach has several advantages. First, a basic defined set of medical services can be established as the foundation for an adequate insurance structure. In addition, pricing methods can be developed for estimating costs of wrap-around service packages, depending on exactly what services are included and for whom. Researchers, families, and program administrators can then work with private health insurance plans to remove barriers to medical services by funding specific wrap-around service packages. In addition, a "benefits manager" could serve to define and implement a package of wrap-around services for individual children. Approaching the issue in this way may help to build the case for parity in access to medical treatments, habilitative and rehabilitative services, and supportive services – all of which are needed by this population of children.

• Families need considerable assistance in developing the skills necessary to argue for enhanced benefits at the individual level. Efforts by the Texas and the Wisconsin project have led to training tools and methods (e.g., family-to-family programs) to build these skills. Many families can suggest to insurers how to find cost-effective services, but there are no mechanisms by which to make these suggestions. A level playing field between families and insurers could yield benefits to both parties.

• One of the most important characteristics of an adequate system is flexibility in defining benefit coverage. Children with special health care needs, even children with the same diagnosis, have different service needs; most families spend considerable time creating customized service systems that conform to the particular characteristics of the child, his or her condition, and family resources. When they negotiate with insurance plans or managed care organizations regarding their child’s care, parents are essentially customizing the services they need for their child. The key question is how can this process of consumer-driven individualization be made a routine procedure with appropriate safeguards?

• In the final analysis, diverse agencies will have to work together to maximize chances for adequate coverage. In most states, this is likely to require involvement of key legislative or executive leaders who create the incentives for joint problem-solving.

• In developing the strategies necessary for enhancing adequacy of private insurance for this population of children, it is important to be realistic in terms of what employers will pay for. Few employers will be willing to support the ideal benefit package. Purchasers and insurance companies themselves must have credible methods for monitoring and constraining costs, especially within a flexible, consumer-driven system.

3. Challenges

The participants identified numerous challenges in moving toward the goal of assuring adequate insurance for this population. These include:

• Major problems in assuring access to dental services and mental health services for Medicaid-enrolled children

• Relative lack of understanding of this population in relation to children in general

• The fact that private insurance companies are far less accountable than public programs

• Overall limitations in Medicaid funding in most states

• Variation among states and communities in the institutional and business climate that would support innovations in financing; as a result, solutions will have to be developed at the local level

4. Next Steps

The group decided that one of the most important next steps is the development and evaluation of consumer-directed, resource-constrained models for providing cost-effective wrap-around services for this population of children. Furthermore, these models should be deliberately constructed from public-private partnerships that integrate Medicaid and employer perspectives. It will be important also to explore the operational feasibility and pricing structure of these models in the context of assuring appropriate breadth of coverage to all children. The strategy here is to recognize a gradient in health status and to focus on establishing flexible provisions whereby adequate coverage can be determined for all children, including children with special health care needs.

Other steps could include:

• Examine emerging data from national surveys that include items on satisfaction with breadth of insurance for this population and access to medical, rehabilitative, and wrap-around services.

• Evaluate specific models of community-based care coordination

• Continue research on how the use of risk-adjustment methods based on health status can lead managed care organizations to develop innovative service delivery models for this population

• Bring together key persons from projects supported by HRSA, NIDRR, ASPE, RWJ, KFF, and other groups to identify resources and strategies for implementing this important goal over the next several years.

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