Provide and promote family-centered, community-based, coordinated care for children with special health care needs and to facilitate the development of community-based systems of services for such children and their families.

Since 1989, this agenda has been the foundation of State Title V programs for Children with Special Health Care Needs (CSHCN). Endorsed by more than 70 professional and voluntary organizations, the agenda calls for the development of systems of care for CSHCN that are family-centered, community-based, coordinated and culturally competent. 

Documenting and measuring systemic changes in terms of meaningful indicators, however, has been challenging.

The long-term outcome of systems development is that all families are able to access health and related services along the continuum of care in a manner that is both affordable and meets their needs; policies and programs are in place to guarantee that children have access to quality
health care; providers are adequately trained; financing issues are equitably addressed; and families play a pivotal role in how services are provided to their children.

A long-term national goal was articulated in Healthy People 2000: National Health Promotion and Disease Prevention Objectives (also included in the 2010 edition) as follows:

Increase the proportion of states and territories that have service systems for children with or at risk for chronic and disabling conditions as required by Public Law 101-239.

Six Critical Indicators of Progress

Medical Home. Once identified, children with special health care needs require a medical home: a source of ongoing routine health care in their community where providers and families work as partners to meet the needs of children and families. The medical home assists in the early
identification of special health care needs; provides ongoing primary care; and coordinates with a broad range of other specialty, ancillary, and related services.

Insurance Coverage. Families must have a way to pay for services. The Childrens Health Insurance Program (CHIP) has begun to address the issues of children who are uninsured,
but the problem of under insurance remains a major concern for CSHCN and their families. In addition the range of wrap-around services needed by families requires the availability of private and/or public health insurance that covers a full range of needed services.

Screening. Infants and children with high risk health conditions must be identified early in order to help assure that they and their families receive the care and assistance to prevent future morbidity and promote optimal development. Advances in brain research, the Human Genome Project, and
increased effectiveness of early intervention have expanded our capacity to identify children with special health care needs and offer an opportunity for early intervention.

Organization of Services. In order for services to be of value to CSHCN and their families, the system has to be organized in such a way that needs can be identified, and services provided in accessible and appropriate contexts, and that there is a family-friendly mechanism to pay for them. Thus, effective organization of services is a key indicator of systems development.

Families Roles. Families are the constants in the child's life and are pivotal in making any system work. Family members, including those representative of the culturally diverse communities served, must have a meaningful, enduring, and leading role in the development of systems at all levels of policy, programs, and practice. Family voices must be heard and families should be at each table in which decision making occurs. Thus, the involvement of families is a key indicator of systems development.

Transition to Adulthood. Youth with special health care needs, as adults, must be able to expect good health care, employment with benefits, and independence. Appropriate adult health care options must be available in the community and provided within developmentally appropriate settings. Health care services must not only be delivered in a family-centered manner, but must prepare individuals to take charge of their own health care and to lead a productive life as they choose. The broad definition of children with special health care needs includes those who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions who require health and related services of a type or amount beyond that required by children generally.

Critical Indicators for Measuring Success
in Achieving the National Agenda

The National Agenda for Children with Special Health Care Needs builds on past experiences and success to assure that policies and programs are in place to guarantee that:

• children have access to quality health care services are coordinated
• providers are adequately trained
• financing issues are equitably addressed
• families play a pivotal role in how services are provided to their children and
• children grow up healthy and ready to work.

These changes must occur in ways that will provide optimal outcomes for children with special heath care need and their families. As the next step in the implementation of this agenda, six national outcomes have been selected as critical to guide efforts within the Division of Services for
Children with Special Health Care Needs.

Core Outcomes to be Achieved

1. All children with special health care needs will receive coordinated ongoing comprehensive care within a medical home.
2. All families of children with special health care needs will have adequate private and/or public insurance to pay for the services they need.
3. All children will be screened early and continuously for special health care needs.
4. Services for children with special health care needs and their families will be organized in ways that families can use them easily.
5. Families of children with special health care needs will partner in decision making at all levels, and will be satisfied with the services they receive.
6. All youth with special health care needs will receive the services necessary to make appropriate transitions to adult health care, work, and independence.

A Call for Action

MCHB is once again asking all of our partners to join us in a common effort to develop and improve community based systems of care for children with special health care needs and their families. As we work towards achieving these outcomes, each partner in this collaborative effort can contribute uniquely to this agenda by helping to document and measure success in the following ways.

Families: We call upon families to be knowledgeable and effective users of health and related services. Families, as the constants in their children's lives are, critical informants with respect to whether a systems of services is appropriate, accessible, affordable, acceptable and effective in meeting their needs. As such, families of all types, cultures and socioeconomic levels must be able to participate in all aspects and at all levels of measuring the success of thais agenda. Effective family coalitions and family/provider networks across the country have provided data about the informational needs of families and their satisfaction with services, as well as provided training to families around health care, financing and advocacy.

Communities: We call upon communities to assist states in documenting the degree to which all children with special health care needs have access to a medical home, including early and continuous screening; the degree to which services are organized in ways that are appropriate, affordable, accessible, acceptable and effective; and the degree to which families participate in all levels of decision-making. Community coalitions have been formed to address issues within the national agenda and they have been instrumental in helping to develop measures and models of service systems that work collaboratively with families. Communities now must help us by participating in collaborative efforts to collect data on the six key indicators in ways that allow common measurement across communities and enhance the ability of the state to report progress on a statewide basis.

States: We call upon states to continue to carry out their legislative responsibilities to develop community systems of services, to provide or arrange for uncovered services, and to measure progress in systems development. Through block grant reporting, states can begin to document progress using the indicators listed here. By partnering with a diverse variety of families, communities, policy councils, providers, and others, states will ensure that systems are truly responsive to all families and their priorities.

Service Providers: We call upon service provider networks to assist in efforts to document and evaluate the spectrum of existing systems of identification and referral to help ensure that data systems are linked and coordinated in ways that create more effective, technologically appropriate, and modern methods for identifying children. Data systems need to be responsive to the complex issues of confidentiality and privacy while preserving ways to share data. As important partners in the service system, all providers, including those in education, child care, and health, can provide important information and data to document the range and the coordination of services for families with children with special health care needs.

Managed Care: Managed care entities are an important source of information with respect to insurance coverage and costs, as well as the utilization and types of services provided to families of children with special health care needs. As with all service providers, linkages with other data systems, confidentiality issues, early identification of children with special health care needs within managed care settings, and provision of appropriate care within a medical home needs to be documented within these settings.

Federal Partners: In concert with families, federal partners must collect and report on these six indicators, aggregating information from communities and states across the country to help inform us of our progress as a nation. The ongoing process of measuring progress in implementing the National Agenda for CSHCN, by measuring our success in achieving intermediate outcomes, and narrowing the gap between the vision and the reality, must be coordinated at the national level.

Through collaborative action, we will be better able to monitor our progress, communicate the value of our efforts, and focus our limited resources on those activities that will best ensure enduring systems of care for CSHCN and their families within the ever changing health care environment.