Stakeholder Groups Providing Health Care Coverage for Chlldren and Youth with Special Health Care Needs (CYSHCN)

Families are central to any move to expand access to health insurance and benefits for CYSHCN. They have the most to gain — and the most to lose if efforts are not successful. Furthermore, experience in the CYSHCN world indicates that families are the best arbiters of what children need. Beyond personal concerns, families play an underacknowleged role as sources of information, referral and advice to other families about insurance and benefits. Families are uniquely positioned to know what financing strategies do and do not work – thus they are critical partners for policy-makers.

Title V Programs are the locus for planning and policy in regard to systems of care for CYSHCN in each state. The Title V role in funding care coordination services gives these programs a direct link to families and a broad awareness of systems and services in most states.

Medicaid is the single largest payer for care of CYSHCN nationally and in every state. As an entitlement, Medicaid provides a policy vehicle for expanding coverage and benefits. Public financing makes Medicaid vulnerable to federal and state economic fluctuations; it can, however, be used as a source of financing to fill in gaps in private coverage for CYSHCN.

Employers are critical partners in ensuring access to health coverage. The majority of people receive their health care coverage as a benefit of employment. However, because there are so many different employers and related health plans, it is not always feasible to develop a single policy or approach that will result in expanded and affordable coverage from all these employer types. Employers do, however, come together to form purchasing groups, and these entities are an important vehicle for reaching the private sector with information and strategies for expanding coverage.

Unions are an often over-looked but important stakeholder in efforts to expand access to insurance and coverage. They represent families at the bargaining table when it is time to negotiate new benefits and contracts with employers. In our work with unions in the past, we have found that while issues related to CYSHCN may not be central to their current work, it is often because no one has raised these issues. Union leaders, when informed and educated, have the potential to be important advocates for families of CYSHCN.

Health Plans are clearly central stakeholders in this initiative. Although health plans do not create policy regarding coverage, they play a central role in shaping benefit packages. They also set policies on utilization, benefit exclusions and exceptions and have some flexibility to craft benefits to meet CYSHCN needs (e.g. by covering care coordination). As discussed below, some of the most creative financing mechanisms for CYSHCN have been developed by health plans.

State Insurance Commissions implement state laws regarding private coverage. Activist Commissioners can play an important role in developing policies that benefit CYSHCN such as mandated reimbursement for Early Intervention or mental health parity.

Providers have an enormous stake in expanded coverage for CYSHCN. Certainly it is in their self-interest to see uninsurance reduced. But members of the American Academy of Pediatrics, family practitioners and pediatric specialists have long been leaders in movements to expand coverage and benefits for CYSHCN. The current campaign to promote the medical home model reflects this history. Other providers – nurses, therapists, mental health clinicians, home care providers, and social workers – are also important partners.

Legislative Advocates and Executive Branch Leaders need to be included in any stakeholder coalition, because the reality is that any large-scale initiative needs legislative and executive branch champions. The work of insurance reform, Medicaid reform, premium support and small group purchasing support, for example, all require legislative action and then executive branch action. These stakeholders are critical members of state-based coalitions.

Other National Policy and Advocacy Organizations Many groups work at the national or state level to enhance systems of care for CYSHCN or to improve health care financing for vulnerable groups generally. The Catalyst Center seeks to learn from and collaborate closely with these groups both to avoid duplication and to ensure that their insights are brought to bear on our work. We are particularly committed to collaboration with other centers funded by the Federal Maternal and Child Health Bureau to improve care for CYSHCN and their families.