All Aboard the 2010 Express: A 10-Year Action Plan to Achieve Community-based Service Systems for Children and Youth with Special Health Care Needs and their Families is designed to accompany Healthy People 2010 (HP 2010). In Healthy People 2010, the U.S. Department of Health and Human Services, in partnership with States, communities, and many organizations in the public and private sectors, has set out a series of objectives to "bring better health to all people in this country." All Aboard the 2010 Express is a 10-Year Action Plan for the nation that addresses the objectives in Healthy People 2010 related to the care of children and youth with special health care needs. The ultimate goal of this Action Plan is to put in place community-based service systems for children with special health needs and to assure family-centered care for all children.

The plan builds upon the sustained efforts of numerous individuals and groups in both the public and private sectors over more than two decades. During the 1980’s the U.S. Surgeon General’s Office and the Maternal and Child Health Bureau launched an initiative to establish comprehensive, coordinated, culturally-competent, community-based systems of services to be based on family-centered principles built through family professional collaboration. This initiative included many partners—public programs, professional organizations, parent/family leadership organizations, voluntary organizations, and elected officials. In 1989, this model was incorporated into authorizing language for the Title V Maternal and Child Health Services Block Grant. That new language mandated the Title V programs, at the Federal and State levels, to assume a leadership role in "the development of community based systems of services…for children with special health care needs" as a way to achieve family-centered care.

Work begun in the 1980s also led to the incorporation in Healthy People 2000 of an objective to create community systems of services in all States. Two objectives in Healthy People 2010 (Objective 16-22 and 16-23) reiterate the need to build such systems, and All Aboard the 2010 Express is intended to help attain those national objectives. It, too, is the result of an exemplary private-public partnership, led by the Maternal and Child Health Bureau (MCHB) in the Health Resources and Services Administration (HRSA), the March of Dimes, the American Academy of Pediatrics, and Family Voices. It reflects the efforts of a wide range of other organizations and individuals, old partners and new.

This document presents a blueprint for the organization, financing, and delivery of family-centered services for children and youth with special health care needs that can and should be fully implemented by 2010. Equally important, it sets forth a framework for effective partnerships between families and professionals, among professions, between the private healthcare system and public health, among agencies and officials at the Federal, State, and community levels, and among public agencies, businesses, and voluntary organizations in the private sector. The ultimate goal of this plan, and of these partnerships, is to ensure that all of America’s children and youth with special health care needs live, learn, grow to adulthood, and reach their full potential, regardless of where they live. It is a goal that we can achieve—together.

In January 2000, the Department of Health and Human Services unveiled Healthy People 2010. This document calls for increasing the proportion of States and territories that have community-based service systems for children with special health care needs. The publication of Healthy People 2010 gives us an exciting new opportunity to recommit to our shared vision of family-centered care for all children and youth with special health care needs and to our shared goal of putting community-based systems of services in place for them and their families. In order to realize that vision and accomplish that goal, this monograph is a call to action—action by Federal, State, and local governments, communities, families, businesses, health care professionals, educators, professional and voluntary associations, professional development programs, private foundations, and policy makers.

During the past 20 years, partnerships among these groups have already accomplished a great deal. We have created a new model for serving children with special health care needs: community-based, family-centered, culturally competent, and coordinated care, delivered within comprehensive and integrated systems of services. In this country, as well as abroad, the model has been recognized as the one that serves children and families best. Over the past two decades, working together, we have developed and refined this model, we have demonstrated that it produces significantly better outcomes for children and families, and we have begun to implement it in many communities across the nation. But that is not enough. It is time now, after two decades, to move to full implementation, to include all children, all families, all communities in our success stories, and to ensure that none are left behind.

As we move forward, it is helpful to remember where we have been. Three decades ago, the term "children with special health care needs" was not part of our vocabulary. Children with special health care needs, particularly those with complex medical conditions, often did not survive to adulthood and many did not finish school or obtain employment. Families struggled to find services for their children. Their expertise was often overlooked or ignored. Families often felt powerless, but learned to support one another as they struggled to find services from the systems meant to serve their children.

A series of important initiatives, starting in the 1980’s, began to change this situation. The 1982 Surgeon General’s Workshop on Children with Handicaps and their Families served as the catalyst for a transformation in our national vision of what could be possible for children with special health care needs and their families. In 1987, parents and other family members, health professionals, financing experts, partners in school and social service agencies, and local, State, and Federal government came together to develop a National Agenda for children with special health care needs. The agenda was endorsed by families and more than 70 professional associations and was the subject of a second Surgeon General’s Conference in 1988. These activities led directly to the Healthy People 2000 objective that called for implementing family-centered community-based systems of services for these children in all states.

The Omnibus Budget and Reconciliation Act of 1989 (OBRA ’89) amended the Social Security Act and mandated the Title V Maternal and Child Health programs for Children with Special Health Care Needs to "facilitate the development of community-based systems of services for such children and their families." Since that time, much progress has been made in putting these systems in place, but a great deal remains to be done. During the 1990s increasing emphasis on building family leadership and parent-professional partnerships led to the creation of State and national family-led organizations that have begun to change policies and practices for children with special health needs.

At the same time, during the 1980s and 1990s, several major private foundations, sometimes in partnership with the public sector, launched a series of initiatives to strengthen services and improve conditions in poor urban communities. These programs focused on supporting communities in their efforts to become safe, empowering environments for children and families. These public and private initiatives were based on a common premise: that, in order to produce substantial and lasting change, it is critical to finance and rebuild community infrastructures in a comprehensive, integrated way. While progress has been made, community revitalization and system building efforts must be broadened to include all children and youth, including those with special health care needs, and their families.

Families and professionals alike continue to be frustrated by the fragmentation of services for children with special health care needs. We know that all children and youth with special health care needs and their families require the same basic opportunities—a comprehensive system of services and supports that allows them to live at home, go to school, play, and build relationships in their own communities. The present fragmentation of services is unnecessary, expensive, inefficient, and a barrier to true family-centered care.

As one step in addressing this problem, a new definition of children with special health care needs has been developed and is now widely accepted. "Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally." This definition is purposely broad and inclusive. It encompasses children and youth who not only require health and health-related services, but who may also have other needs, including early intervention services, special education and related services, vocational education, mental health and substance abuse services, and social services. Moreover, their families may require family support and other services, such as transportation, respite care, and employment as they raise their children in this nation’s homes and communities.

We know that many, many children in this country meet this definition and require services they may not be receiving. But how many? Estimates of the number of children and youth that have special health care needs range between 15 and 20 percent of all children. This percentage excludes the "at risk" group. Those estimates, however, are based on categorical definitions and data that are not current. To answer this question much more definitively, the first National Survey of Children with Special Health Care Needs is being supported by HRSA and undertaken by the National Center for Health Statistics.

By early 2002, for the first time, we will have accurate State and national prevalence estimates of children with special health care needs. The survey also will provide us with valuable information about what services children with special health needs and their families require and use, the adequacy of their health insurance coverage, and the extent to which they receive care coordination services. In addition, it will tell us about the impact of children’s special needs on their families and about family satisfaction with the care they are receiving. Results of the survey--along with the products of other measurement initiatives being undertaken by family organizations, researchers, and professional organizations--will create a comprehensive national database on children with special health care needs. Data gathered from all of these efforts will enhance our abilities to perform needs assessments, measure performance and quality of care, and advocate for and implement improved services and systems for these children.

The Maternal and Child Health Bureau, together with our partners, has also identified core outcomes for the community-based system of services mandated for all children with special health care needs under Title V, under Healthy People 2000, and now under Healthy People 2010. The following six outcomes reflect our commitment to accountability, as required by the Government Performance and Results Act of 1993. Equally important, they give us a concrete way to measure our progress in making family-centered care a reality and in putting in place the kind of systems all children with special health care needs deserve.

• 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;
• All children with special health care needs will receive coordinated ongoing comprehensive care within a medical home;

• All families of children with special health care needs will have adequate private and/or public insurance to pay for the services they need;
• All children will be screened early and continuously for special health care needs;
• Community-based service systems will be organized so families can use them easily;
• All youth with special health care needs will receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.

While we want to measure success, achieving success is much more important. We embrace Healthy People 2010 as a unique opportunity to move beyond development, demonstration, and partial implementation to full implementation for all children with special health care needs and their families, wherever they live. To truly achieve success, it is critical to meet all of our six core outcomes and to recognize how closely they are intertwined. If we are to attain the Healthy People 2010 objective of community-based systems of services in every State, children and youth must have access to medical homes, must be adequately insured, and must be screened for special needs on a regular basis. There must be concerted efforts, at the community level, to develop systems of services that families can use easily and in which they are actively involved as partners. Finally, our community-based systems must also ensure that youth with special health care needs are assisted in making the transition to adult health care, work, and independence, so that we can reach our ultimate goal—a new generation of healthy, successful, and productive adults.

Through active collaboration among HRSA’s Maternal and Child Health Bureau, Family Voices, the March of Dimes, the American Academy of Pediatrics, and numerous other organizations and individuals, we have created a 10-Year Action Plan. The Action Plan, which follows, outlines a series of concrete, practical steps toward accomplishing the Healthy People 2010 objective of community-based systems of services for all children with special health care needs in all States. It turns our six core outcomes into six achievable goals. It is a plan for the nation as a whole, based on a model of public/private partnership, and requiring the commitment of a broad range of individuals, institutions, and groups. Together we can make the plan a reality.

Family-centered care is based on the recognition that almost all children, including children with special health care needs, live within the context of families—which may include biological, foster, and adoptive parents, grandparents, other family caregivers, and siblings. In developing community-based systems of care, we must always keep this primary context in mind. Family-centered care is a process to ensure that (1) the organization and delivery of health care services meet the emotional, social, and developmental needs of children; (2) the strengths, and priorities of their families are integrated into all aspects of the health care plan. Active partnership between families and professionals is the cornerstone of family-centered care. Family-centered care supports families as they participate as integral partners in the medical home and work with their children’s health care professionals in making informed health care decisions. Family-centered care recognizes, in fact, that families are the ultimate decision-makers for their children, with children gradually taking on more and more of this decision-making themselves.

Family-centered care goes beyond that, however. It also supports families in learning more about how health care is financed, delivered, and organized so they can become involved in decision-making on a much broader level. By telling their stories and sharing their unique expertise, families can assist other decision-makers as no one else can. The inclusion of families in decision-making and policy formulation at the community, State, and Federal level is critical if we are to improve services and supports to children with special health care needs.

Families are essential in providing information and peer support to other families as they look for ways to effectively access resources, navigate the system, and participate on task forces and commissions. Families also have a unique ability to act as advocates on behalf of their children and others. Family advocacy is successful when families form relationships with other stakeholders and advocate for systems improvements on behalf of children and youth with special health care needs.

Over the past few decades, remarkable advances have been made in bringing families to decision-making tables and finding ways to increase their satisfaction with services. Family Voices, which was formed in 1992 by family leaders around the country, is now now a national grassroots organization that provides support and education to families of children with special health needs and providers in every State. Through the leadership of Family Voices and that of many other family organizations, families are now in the forefront of national, State, and community efforts on behalf of children with special health needs, whether in the area of program, policy, or practice.

However, great challenges remain, including identifying ways to implement full family participation in decision-making. It is also critical to find strategies to ensure that all families, including those from culturally, linguistically, economically, and geographically diverse backgrounds, are satisfied with the services they and their children receive and with the systems in which these services are delivered.

Ensure that partnerships between families and professionals are a key element of the medical home.

• Encourage medical homes to adopt policies and practices that support family-centered care, family/professional partnerships, and cultural competency.

• Assist professionals within medical homes to actively partner with families in: (1) professional development that enhances professionals’ services to and interactions with children, family, and community; (2) family advocacy and leadership activities; (3) care planning and implementation.
• Make family-to-family support an essential element of the medical home.

• Develop a public awareness campaign about the critical role families play as decision-makers. Among others, this campaign should target families, Federal, State, and community agencies, CEOs and CFOs of businesses and health care organizations, neighborhood/community groups, professional organizations, university training programs, legislators, Governors, and advocacy groups.

• Encourage schools of public health, medicine, nursing, social work, occupational therapy, education, and physical therapy, as well as other related professional schools, to incorporate elements of family-centered care, family/professional partnering, and cultural competency as standard components of educational curricula.
• Include families in designing medical and other health professional education and in the teaching of professionals.

• Assure that the Maternal and Child Health Bureau and its State counterparts: (1) model family-professional partnerships in all activities, including Special Projects of Regional and National Significance; (2) demonstrate cultural competence by using the principles and concepts recommended by the National Center for Cultural Competence; (3) include families in all workgroups and advisory committees, at local, State and Federal levels; and (4) provide families with adequate training, support and compensation. This will be accomplished through grant guidance, strategic planning, and contract language and requirements

• Provide Federal funding to establish and maintain a Family-to-Family Health Information Center in every state.

Support the participation of traditionally under-represented families in all decision-making, learning, and advocacy activities

• Establish and maintain programs that support fathers as caregivers and partners.
• Develop an easily accessible databank for health and related materials in multiple languages and in various formats.
• Ensure that health and related materials are available in multiple languages and in cassette and video, as well as written, formats. .
• Support the services provided by medical interpreters, design standardized training for these interpreters, and develop quality indicators for interpreter services.
• Provide cross-cultural pre- and in-service training to providers and other staff that interact with children and youth with special health needs.
• Improve outreach and support to culturally diverse providers and community organizations.
• Establish and maintain programs that support fathers as caregivers and partners.

• Expand outreach to families who traditionally do not access health care, including mental health and dental, services for their children with special health care needs by (1) identifying the barriers that keep families from establishing and maintaining successful relationships with health care providers, schools, and community agencies; (2) developing concrete strategies to address these barriers.

• Develop performance measures for the Title V Block Grant application related to cultural and linguistic competence, similar to the "family participation" measure. Incorporate similar measures into the new reporting system for Special Programs of Regional and National Significance (SPRANS).
• Increase and improve pre- and in-service training to professionals who work with children and families from culturally diverse backgrounds.

Develop and promote measures for determining family satisfaction with health care services.

• Develop appropriate measures to examine family, youth, and child satisfaction with critical elements of the system of care, including care coordination, financing, primary care, specialty care, subspecialty care, and therapies, decision-making, provider-family communication, and transition.
• Create a variety of family-friendly, culturally competent ways for families to register quality and access concerns. These can also serve as a clearinghouse for information about the cumulative experiences of families.

• Assure a continuous loop of feedback to and from families about their experiences with systems serving their children and practices being used in those systems.
• Mandate collection of data on family satisfaction at the community, State, and Federal levels and the utilization of that data in systems and program development.

Simply put, a medical home means a source of ongoing, comprehensive, family-centered care in the child’s community. Child health care professionals and families agree that medical homes provide important and unique benefits to children and youth with special health care needs. The needs of the child and the family are central to the medical home approach. Professionals who are part of the medical home ideally develop a trusting partnership with families, respecting their diversity and recognizing that families are the constant in a child’s life, as well as their most important caretakers. Consequently, professionals have a responsibility to share clear and unbiased information with the child and family about the child’s medical care and management, as well as about the specialty and community services and organizations they can access.

In developing medical homes for all children and youth with special health care needs, we emphasize the unique role of licensed primary care professionals in the community, such as pediatricians and family practice physicians. The medical home can and should provide preventive services, immunizations, growth and developmental assessments, appropriate screening, health care supervision, and patient and family counseling about health and psychosocial issues. It can assure convenient, prompt care for acute illnesses, 24 hours a day, 7 days a week, 52 weeks of the year. The medical home also can and should ensure that children have continuity of care from visit-to-visit, from infancy through transition into adulthood. In addition, it must be supported to provide care coordination services so that each family and all the professionals serving them work together, as an organized team, to implement a specific care plan and to address issues as they arise. Finally, pPractitioners in a medical home should be responsible for maintaining an accessible, confidential, comprehensive, central medical record that contains all pertinent information about the child.

As we validate and strengthen the role of the community primary care professionals in the care of children with special health care needs, it is critical to recognize the equally important role that specialists, sub-specialists, and specialty programs play in the care of these children. Identification by the primary care professional of the need for specialty and subspecialty consultation and for the appropriate referrals at the appropriate time is a vital part of the comprehensive care provided through the medical home. Regular attention to oral health and developmental/behavioral issues is critical. Collaboration between the primary, specialty, and subspecialty providers to establish shared management plans in partnership with the child and family and to formulate a clear articulation of each other’s role is a key component of the medical home concept.

Equally key is the partnership between the primary care professional and the broad range of other community providers and programs serving children with special health care needs and their families. The medical home concept includes a responsibility for primary care professionals to become knowledgeable about all the community services and organizations families can access. Beyond this, the medical home must actively engage with other community health care professionals, including mental health and dental professionals, early intervention programs, Head Start and childcare, schools, and other public and private community agencies to be certain that the special needs of the child and family are addressed. They should be instrumental in bringing together the inter-professional team required to meet those needs in a way that is comprehensive, coordinated, family-centered, and culturally-competent.

While many medical home service components currently exist and simply need to be fully integrated and coordinated, others remain to be developed. Training resources are needed to provide primary care professionals working in communities with the strategies necessary to develop medical homes, as well as to educate specialty, subspecialty, and non-health professionals about medical home concepts. Partnerships that have provided leadership to the medical home movement include those between public and private institutions. For example, Family Voices, the National Association of Children’s Hospitals and Related Institutions, the National Center on Cultural Competence and The Shriners Hospitals for Children have collaborated with the AAP and the MCHB in developing a national training program that promotes the medical home approach. For the medical home concept to succeed, families need to play a leadership role in the process because they bring immense insight and experience into the care of their children with special health needs.

Information and incentives are necessary for the buy-in of purchasers and administrators of insurance to ensure adequate reimbursement for the provision of medical homes. Additionally, resources to guarantee accurate data collection based on health outcomes are needed to further garner support and funding.

Action Step 1

Standardize the core elements of the medical home.

• Clarify the concept of medical home to ensure that it includes partnership with specialty and sub-specialty medical professionals, oral health and mental health professionals, and with other service providers, programs, and organizations in order to meet the comprehensive needs of children and families.
• Establish an outcome-based rationale for the definitive elements of medical home as a standard of care for all children based on consensus statements from stakeholders and analysis of existing and emerging research that demonstrates the importance of medical homes to the health and well being of children with special health care needs.
• Demonstrate the efficacy and feasibility of the medical home through a variety of models including pediatric practices, family practice, mental health clinics and health clinics.
• Obtain consensus from all stakeholders, including families, youth, child health/mental health/oral health professionals, other disciplines serving children with special health care needs, and State programs, on the definition of medical home and the rationale and evidence for medical home as a standard of care.
• Disseminate a common evidence-based definition of medical home to all stakeholders. Develop a guide on how to implement the core elements of a successful medical home.

Promote the medical home approach.

• Implement a national communication strategy utilizing distance learning, web sites, national meetings, and a public marketing campaign to educate families, businesses, insurance plans, child health professionals, State public health programs, mental health professionals, advocates, policymakers, and all other stakeholders at the community, State, and national level about the benefits and feasibility of the medical home approach.
• Implement the recommendations on medical home made in The Future of Pediatric Education II (Pediatrics, 2000) on Graduate Medical Education and Continuing Medical Education for child health care professionals and incorporate medical home concepts into interdisciplinary training programs so that professionals from a wide array of disciplines understand and support the medical home concept as a way of achieving family-centered care.
• Implement a national medical home training program for child health professionals and create a national mentorship network to provide support and technical assistance to medical home providers, families, health plans, State public health programs, and other stakeholders at the national, State, and community level who are providing leadership in medical home implementation.
• Develop and disseminate successful models of coordination between primary and specialty/subspecialty health care professionals, as well as successful strategies for implementing the medical home at the practice level. Disseminate these models through a national recognition program that highlights these models and encourages the adoption of the medical home concept.
• Assist other community-based professionals who care for children (e.g., childcare providers, Head Start and school staff, case managers, and office personnel) to coordinate with the medical home. Support and recognize coordination and collaboration among existing community-based and national organizations to promote the core elements of the medical home approach.

Achieve universal access to medical homes.

• Identify and/or create a statewide focal point to provide leadership in the development of medical homes. State Title V Programs, with the legislative authority for systems development, should assume this responsibility, in collaboration with child health care professionals, families, and other stakeholders.
• Expand efforts to link all children and youth to medical homes in their communities. Work with stakeholders at the community, State, and Federal level to address access barriers, including transportation.
• Improve medical transition services for youth within the medical home and strengthen the capacity of adult providers to serve as medial homes for youth and young adults with special health care needs.
• Support initiatives in telehealth, and other innovative delivery systems, that are built on the medical home approach and enhance the capability of medical homes to provide confidential, comprehensive, high quality family-centered care in areas where there is limited provider, particularly specialist, capacity. Assist families to understand the uses of telehealth.
• Ensure that a child may remain in his/her medical home even if his/her insurance status changes.
• Work to establish Centers of Excellence in children’s hospitals, Shriners Hospitals, and major pediatric medical centers to serve as specialty/sub-specialty provider networks for statewide systems of care. Strengthen Title V’s role in developing, disseminating, and replicating statewide models for effective collaboration between medical homes and specialty/subspecialty services.
• Establish adequate reimbursement for key elements of the medical home, including screening and care coordination, through Medicaid, S-CHIP, and private insurance.

Use the medical home as a measure of quality care.

• Convene a consortium of primary care professionals, specialists, sub-specialists, and families to examine the interrelationships that are required to make medical homes successful at all levels of care provision.
• Develop continuous quality improvement (CQI) tools for different practice settings and populations that use new and existing data collection systems to monitor the quality of the medical home.
• Create outcome indicators to reflect the development and progress of the medical home approach on an individual State level.
• Collect and distribute data that demonstrate the long-term quality benefits of the medical home (e.g., improved outcomes due to timely and appropriate referrals to specialty and sub-specialty providers, prevention of unnecessary and costly hospitalizations, reduction in length of hospital stays, enhanced family-professional partnership, and increased family satisfaction) and publicize results to policymakers and payers as well as to the medical home community.

• Expand training in cultural competency and family-centered care so that all families feel welcomed into a medical home. Validate approaches to the medical home that incorporate culturally and linguistically competent principles and practices.

Health insurance coverage plays a critical role in ensuring access to family-centered care for children with special health care needs. Data from the 1994-95 National Health Interview Survey indicated that 11.2 percent or 1.3 million children with special health care needs had no insurance coverage. Nearly 80 percent of uninsured children with special health care needs lived in families with incomes below 200 percent of the poverty level. Insured children with special health care needs are much more likely than their uninsured counterparts to receive family-centered care in a have the main elements of a "medical home.," including a usual Insurance coverage is also strongly associated with the ability to obtain needed medical care, dental care, mental health services, assistive technology, durable medical equipment and prescription medications. In fact, uninsured children with special health care needs are three times more likely than insured children to have unmet needs for these services. Of particular concern: more than 25 percent of uninsured children with special health care needs have no physician contact over the course of a year.

However, even when insured, children with special health care needs can experience access problems. For example, one in seven lack a regular clinician, one in ten go without needed care over the course of a year, and one in five families of insured children with special health care needs report being dissatisfied with their child’s care. These problems experienced by insured children with special health care needs testify to the impact of under-insurance, most commonly expressed as inadequate benefit coverage and limited out-of-pocket cost protections. Several studies examining the scope of private health insurance benefits for children with special health needs identify consistent gaps in coverage for services, including ancillary therapies, home health care, mental health services, dental services and durable medical equipment, whether a child is covered by a managed care plan or a conventional indemnity plan.

Parents of insured children with special health care needs often experience difficulties finding experienced pediatric providers. Some health plans do not include experienced primary care, pediatric sub-specialists, oral health professionals, and other providers in their networks. In response, families increasingly request approval for out-of-network care or standing referrals to their child’s specialty provider. Many families also report access problems due to service authorization policies, which often define medical necessity in narrow terms using adult standards and deny critical services, such as speech therapy.

In addition to assuring that children with special health care needs have access to insurance coverage and comprehensive benefits, adequate financing and reimbursement for services must also be in place. Capitation rates paid by purchasers to health plans are often inadequate and do not reflect the fact that health care for children with special health care needs is more costly than care for children in general. Pediatric providers report that reimbursement is often not sufficient to cover their costs in providing the extra time and services required by these children. Consequently, many experienced health providers now limit the number of children with special health care needs they will serve.

There is little research on health-based capitation methods suitable for children with special health care needs. Existing methods designed for adults with disabilities or the elderly do not address the variability in the prevalence and severity of childhood chronic conditions, as well as the developmental differences between adults and children.

For the last decade, there has been tremendous growth in managed care, both in the public and private sector. Some families and health professionals believe that capitated managed care systems are inappropriate for children with special health care needs because the emphasis on cost containment will always place this group of children at a disadvantage. Others think managed care holds the potential for comprehensive, coordinated, and efficient care. As managed care continues to evolve, there will be a need to evaluate its impact on the financing and delivery of services to children with special health care needs.

All children require adequate, portable, renewable and affordable medical, dental, and mental health insurance. Insurance benefits and medical necessity standards should be consistent with recommendations from the American Academy of Pediatrics, with parity between acute and chronic conditions, as well as between physical and mental health conditions. Payments from purchasers to insurers and from insurers to providers should be adequate to support the services needed by children and youth with special health needs. Insurance plans must include financial and administrative incentives to encourage access to pediatric primary or specialty care. Finally, all insurance programs must be able to identify children and youth with special health needs so they can appropriately track and monitor their care.

Expand insurance to all uninsured children and youth with special health care needs.

• Strengthen Medicaid and S-CHIP outreach and enrollment efforts for children and youth with special health care needs. , with particular attention on uninsured Hispanic children, adolescents and uninsured children in the South and West.
• Increase S-CHIP income eligibility criteria to adolescents ages 19-21
• Allow families without affordable comprehensive private health insurance to purchase Medicaid coverage.
• Expand premium subsidies that enable families to purchase private health insurance.
• Provide financial incentives for employers to offer dependent coverage up to age 22 at the same premium contribution level as the employee.
• Expand allowable tax deductions for health insurance premiums and other unreimbursed expenses.
• Assist families and child health professionals to participate in and evaluate legislative and regulatory proposals to extend health insurance to uninsured children and their families, assessing the degree to which these proposals benefit children with special health care needs and their families.
• Extend the requirements of the Health Insurance Portability Act (HIPAA) to eliminate waiting periods for pre-existing conditions.

Assure comprehensive coverage for children and youth with private and/or public insurance and address the issue of under-insurance.

• Support and give incentives to States and health plans to implement and monitor safeguards and quality assurance standards for all children with special health care needs.
• Foster greater collaboration among key stakeholders including State agencies (e.g. Medicaid, S-CHIP and Title V) Federal agencies (e.g. HRSA, the Centers for Medicare and Medicaid Services, and the Substance Abuse and Mental Health Services Administration), health plans, providers, and families on issues related to children with special health care needs.
• Provide incentives and technical assistance to States to expand public insurance programs to include services needed by children and youth with special health care needs, such as respite care, home health, oral health and mental health services, therapies, durable medical equipment, and assistive technology.

• Offer tax and other purchasing incentives to employers to expand their standard health insurance package to include the services, including mental health and oral health care, needed by children and youth with special health care needs.

• Design and fund a "wraparound benefit package" to supplement private insurance plans and develop strategies to administer these supplemental benefits.
• Work with key stakeholders such as health plans, state insurance commissioners, employers, providers and families to educate employers and other purchasers of the unique health care needs of children and the importance of purchasing an appropriate benefits package for children.

• Support efforts to improve the identification of children with special health care needs.
• Promote the use of quality of care measures for children with special health care needs, including the development of a rating card and the adoption of the revised measure for the HEDIS/CAHPS 2.5 Child Health Survey.
• Develop new standards for assessing the adequacy and capacity of provider networks, including oral health and mental health professionals, for children with special health care needs.

• Support efforts to modify legislative, regulatory, or contractual language to be consistent with medical necessity criteria that support the criteria such as those defined by MCHB and the Joseph P. Kennedy, Jr. Foundation and/or those adopted by the American Academy of Pediatrics.overall physical and mental growth and development of children and youth to achieve or maintain maximum functional capacity.
• Encourage the financing and delivery of integrated physical and behavioral health services for children and youth with special health care needs.

• Promote the use of the purchasing specifications for children and youth with special health care needs by purchasers and insurers.

• Strengthen benefit contracts to include the necessary safeguards for children and youth with special health care needs.

Strengthen the financing system.

• Estimate health expenditures and costs of services for children with special health care needs based on recommended clinical practice guidelines.
• Monitor the appropriateness of rates paid by purchasers to health plans, as well as the reimbursement of providers, including oral health professionals, from health plans.
• Encourage the development and adoption of reimbursement methodologies (e.g. risk adjusted rates) appropriate for children with special health care needs.
• Determine the impact of other financial strategies (e.g. risk corridors, risk pooling arrangements, and reinsurance) on reimbursement to providers and risk reduction.

• Encourage insurers to make use of CPT codes for services important to children with special health care needs (e.g., team conferences, mental health screening, telephone calls) in order to help ensure adequate reimbursement for health professionals.
• Offer tax and other incentives to purchasers to reduce cost-sharing requirements, lower annual out-of-pocket maximums, and increase lifetime limits on benefit coverage.
• Review statutory, regulatory and administrative policies to identify opportunities and obstacles to combine multiple funding streams.

In public health, screening often refers to a population-based procedure to detect a particular condition or disease. However, as used in the context of this goal, screening is much more comprehensive and includes ongoing monitoring and assessment of children and youth to promote health and well-being through family-centered care practices. Seen this way, screening has two major goals. First, it is critical to identify, as early as possible, children in the general population who have special health care needs as early as possible so that they and their families can be given appropriate services to address those needs and reduce the long term consequences and complications of those needs. Some needs may be identified in infancy, or during the perinatal period, while others may emerge later in childhood and adolescence. Second, and equally important, children and youth with special health care needs must have ongoing assessments to identify newly emerging issues for them, including developmental/behavioral issues, oral health, and psychosocial issues, and to prevent secondary conditions that may interfere with their development and well-being. Ongoing assessment should also focus on identifying the unique strengths of each child and family.

When screening achieves these goals, it is clear that it results not only in improvements in the quality of life for children and families, but also in cost savings for the health and educational system. The undeniable benefits that have accrued to children and their families in certain types of screening programs, such as newborn heelstick screening, newborn hearing screening, and lead screening, point to the desirability of expanding our efforts in the screening arena.

Making effective screening available to all children and youth will require addressing several critical challenges. For example, currently screening is done according to different standards. A variety of screening guidelines are promoted by professional organizations, such as the American Academy of Pediatrics, State or Federal government agencies, and by private groups, such as the Health Employer Data and Information Set (HEDIS) of the National Committee for Quality. Reimbursement policies of third-party payers, such as Medicaid, health maintenance organizations, or private insurance companies, also influence what screening is done.

Screening of children and youth is also done in many different places: health care professionals’ offices; hospitals; early intervention and Head Start programs, daycare centers, schools, and clinics of the Women, Infants and Children (WIC) program for supplemental nutrition for women and children. Because children spend time in so many different places and interact with so many different systems, it is probably impossible to avoid some overlap and duplication of screening services. However, it is critical to eliminate unnecessary duplication and to put effective coordinating mechanisms in place for linking screening programs to each other and to the end user—the family. The best place for the coordination to happen is the child’s medical home. Medical homes should ensure that children and families receive screening results in a timely and helpful manner, as well as appropriate, ongoing follow-up and services by health care professionals and referrals to the other community services that may be needed. This will require building systems, at the community and State level, that enhance the capacity of medical homes to coordinate screening activities and assist medical homes and community and hospital screening programs to work more effectively with each other to provide services that reflect the principles of family-centered care.

A wide variety of sources now pay for screening. These include, among others, the WIC program, Early Intervention, Head Start, the Individuals with Disabilities Education Act (IDEA), Medicaid, and State Title V CSHCN programs. In some cases, parents must pay for these services themselves. In other cases, health insurance programs cover it. Some States have established specific funding programs for screening, while others have not. By making the medical home the coordination center for all screening data, we will be able to better focus on the way in which screening is financed in both the public and private sectors.

Inadequate reimbursement is a significant reason why Early and Periodic Screening, Diagnostic and Treatment (EPSDT) activities are not being adequately implemented. Assuring full implementation of EPSDT to provide any service that is "medically necessary" as defined by Title XIX is more critical than ever to ensure that improved screening ultimately leads to improved care for all children with special health care needs. The involvement and cooperation of many different stakeholders, including health care professionals, government agencies at the Federal and State levels, families, advocates, professional organizations, businesses, and private insurers, will make it possible for all children to receive early and continuous screening, follow-up, and all the services they require.

Action Step 1:

Improve access to and availability of screening services.

• Through Title V, expand and strengthen newborn screening systems and promote their linkage to medical homes, early intervention, and family-to-family support programs
• Incorporate Early and Periodic Screening, Diagnostic and Treatment (EPSDT), including mental health, dental health, and substance abuse screening and treatment, into medical homes through collaborative work among the Centers for Medicare and Medicaid Services (CMS), State Title V, and State Medicaid programs. Work with CMS and State Medicaid programs to increase compensation rates for EPSDT.
• Revise Bright Futures to be fully inclusive of children with special health care needs, serve as the national standard for health supervision for all children, and reflect the needs of culturally and ethnically diverse populations.
• Integrate Bright Futures/EPSDT screening standards into private insurance coverage.
• Develop, describe, and disseminate models for medical homes and the existing network of specialty/subspecialty providers (including University-Affiliated and tertiary care centers) to provide an adequate system of screening, follow-up, referral, and management.
• Expand pre-service and in-service education and training initiatives for physicians, nurses, dentists, day care providers, schoolteachers, case managers, social workers, and public health professionals, as well as opportunities for meaningful collaboration among them around the issue of screening. These initiatives should emphasize the importance of prevention and the benefits of screening performed in the context of the medical home. The goal of these initiatives is to help providers translate new technological and scientific knowledge into services and ensure they are adequately trained on accepted screening procedures, including brief, standardized, validated screening tools in the detection of developmental/behavioral/mental health problems.
• Fund projects to use telemedicine tools and techniques to provide screening, follow-up, and care coordination to children and families in rural and/or remote areas. Assure adequate confidentiality and ethical safeguards for families.

Support data capacity for integration of screening results.

• Support States in coordinating activities among different screening programs and integrating child-related public health agency data (e.g. newborn heelstick screening, newborn hearing screening, developmental and behavioral screening, lead screening, immunization, etc.) to allow tracking, assessment, and evaluation with a goal of creating more effective systems of care.

• Create a standardized report form (such as a Health Diary) for parents to keep track of results of screenings, immunizations, etc. until an electronic system is established.

• Develop an informatic system to make screening and follow-up data information easily available to the end user, while addressing confidentiality concerns.

Improve screening guidelines and standards.

Strategies:

• At the Federal level, convene a working group of the Federal Interagency Coordinating Council to oversee the coordination of various Federal programs related to early and continuous screening using the Bright Futures standards.
• At the State level, establish a working group with broad responsibility (e.g., prenatal to age 21, newborn heelstick screening to abuse/neglect) to specify appropriate screening tools and procedures (e.g., Pregnancy Risk Assessment and Monitoring Systems), standardize protocols, and achieve consensus as to who can do screening. This group would function under the authority of the State Department of Health.
• Develop and distribute better screening protocols for children with complex health conditions, such as cerebral palsy, spina bifida, autism, sensory impairment.
• Ensure that all professional training programs emphasize the importance of screening and include information on appropriate screening tools and best practices.

Promote awareness of the need for and benefits of early and continuous screening.

• In cooperation with families, advocacy and professional groups, and foundations, convey the importance of early and continuous screening as part of a national campaign to promote 2010 goals.

• Through family-professional collaboration, provide consistent and culturally appropriate health promotion information, anticipatory guidance, and prevention information via State Title V CSHCN programs, Head Start, IDEA Part C, and other Federally funded programs.
• Create a collaborative network for the development and dissemination of culturally appropriate information on screening, focusing, in particular, on new and emerging genetic information that will assist individuals in making informed choices.
• Require applicants for grants funded by the Maternal and Child Health Bureau to document how they will incorporate Bright Futures Guidelines into their projects wherever appropriate.

A community-based system of services is an infrastructure that operates across service sectors. It facilitates the integration of services in several dimensions—including organization, delivery, and financing. In the context of this Action Plan, a community-based system of services refers to the framework within which a variety of programs work together to meet the many, varied needs of children, youth, and families in communities.

The development of community-based systems of services is a response to the complexity and fragmentation of services for children with special health care needs and their families. Multiple service programs--each with theirits own funding streams, eligibility requirements, policies, procedures, and service sites—serve our children with special health needs. It is clear that communities and their resources affect the way families of children with special health needs find and use services. Therefore, the health of communities themselves can have a positive effect on the growth and development of children with special health care needs. There now exist a number of initiatives to develop community-based systems of services and a number of related community development initiatives in communities throughout the nation. The public sector has furnished much of the impetus for such initiatives, but the private sector, especially several national foundations, has increasingly become active in instituting such initiatives.

Development of community-based systems of services requires the establishment and maintenance of organizational units responsible for facilitating the integration of the organization, delivery and financing of services at the community level. The units responsible for systems development may vary. What is crucial is that their governance, planning, and management of these units involve key community stakeholders. It is equally critical that linkages be forged between Federal and State agencies, and between public sector and private sector to promote, support, and advocate for systems development at the community level. The Maternal and Child Health Block Grant specifically mandates State CSHCN programs to play a leadership role in developing community-based systems of services for children with special health care needs. Since these programs have special expertise around this population, they can and should assist communities to develop systems of services for children with special health care needs and their families.

To organize community services in a family-centered way, stakeholders must engage in capacity building, including the enhancement of leadership and collaboration skills among key community stakeholders. Federal and State governments and national and regional foundations can play valuable roles in this effort by fundamentally redefining and restructuring technical assistance and education to make them more responsive to the needs of local communities.

Adequate funding is essential in the building of community-based systems. The successful development of community-based systems of services is also linked to the devolution of substantial authority for decision-making and for funding from the Federal government to State governments and to communities. Devolution has given rise to concerns about accountability on the part of communities receiving Federal and State funds for the development of systems of services and the provision of needed community services. These concerns are resulting in the rethinking of traditional methods of monitoring and evaluation in the community context and ongoing attempts to devise new and better ways of assuring accountability through monitoring and evaluation.

Assist communities to develop service systems that are fully inclusive of children and youth with special health care needs and their families.

Establish and maintain units at the community level with responsibility for development of systems of services that are fully inclusive of children with special health care needs and their families.

• Devolve substantial decision-making authority for the organization and delivery of services from the Federal government to State governments and to communities.

• Create community collaboratives and other freestanding organizational units and/or designate existing organizations at the community level to be responsible for systems development. Assure that the governance, planning and management functions of these units involves key community stakeholders that include and promote partnerships among culturally diverse ing consumers, such as families of children with special health care needs, youth with special health care needs, medical home practitioners, specialty and sub-specialty professionals, business, civic, and religious leaders, and elected officials.

• Help collaboratives to conduct community needs assessments to identify gaps in and duplications of needed community services. Families’ needs for transportation, home care coordination, respite, adaptive equipment, telephone access, sibling care and support, and access to emergency assistance funds should be included in these assessments.
• Improve collaboration at the community level in policies, procedures, and service provision within and between service sectors (e.g., common application and intake procedures and joint evaluation, service planning, and care coordination services.

• Eliminate Federal and State legislative and administrative barriers to collaboration at the community level and create incentives for it. Establish a mechanism for communication between local governance bodies, State coordinating bodies, including State Interagency Coordinating Councils (ICCs), and Federal coordinating councils to address barriers to service integration and coordination.

• Develop and expand strategic alliances between the public sector and the private sector initiatives to support the development of community-based systems of services.

• Support family organizations as they engage families of children with special health care needs in effective partnerships with local planning/governance bodies.

Build the capacities of key community stakeholders to develop community-based systems of services.

• Provide technical assistance, training and financial support to enhance the knowledge and skills, including communication facilitation, conflict management, and community organization skills, of key community stakeholders. Match technical assistance and training to the requests and circumstances of different communities.
• Improve coordination of training and technical assistance activities at the community and State levels by enhancing collaboration among State and Federal agencies supporting these activities. Use existing Federal and State coordinating bodies, such as the Federal Interagency Coordinating Council (FICC) and the State Interagency Coordinating Councils (SICCs), to help accomplish this.
• Support family leadership programs that identify families as leaders and potential leaders in the development, planning, implementation, and evaluation of community-based service systems.
• Create inter-professional training programs to change the way services are organized and delivered to children and families at the community level.
• Create, expand and improve computer-based clearinghouses for information on development of community-based systems of services.

Provide adequate public financing for community-based systems of services and the provision of needed community services.

• Ensure that Federal and State legislation and administrative regulations allow communities to allocate funding in a flexible way, based on their own needs assessments.
• Help communities adopt proven strategies for maximizing the use of multiple funding streams for needed services. These include combining, or de-categorization, of separate Federal, Federal-State, and State funding streams into a single community controlled fund and sharing of personnel for joint activities such evaluation, planning of services and coordination of planning.
• Finance services for children with special health needs through blending of public sector and private sector funding
• Make funding available to establish and maintain community collaboratives. This should include support for personnel, operating and capital expenditures.

Assure that every community has adequate services for all children with special health care needs that are, organized so families can use them easily.

• Support community efforts to assure and monitor capacity, determine if current capacity results in desired outcomes, and make adjustments accordingly. Support the efforts of professional, family, and advocacy organizations to identify key capacity issues for providers and families at the community level and to examine the adequacy of existing provider network and service availability.
• Address the lack of services and providers in under-served areas by asking State and regional planning and governance bodies to support local capacity building efforts.

• Through Federal coordinating councils, address nationwide capacity issues identified by local and State planning and governance bodies.

• Through existing Federal coordinating councils, identify Federal funding policies that are barriers to family-centered community-based care and make recommendations to appropriate Departments for changes in Federal statute and regulation.

• Encourage Federal agencies and private foundations to collaborate in helping States and communities build integrated management information systems (MIS) across child- and family-serving programs.

• Establish strong partnerships among public programs, private providers, and voluntary agencies to utilize all available community capacity.

Assure results-based accountability of community-based systems of services.

While rapid advances in medical science have enabled more than 90 percent of children born with special needs to reach adulthood, youth with special health care needs are much less likely than their non-disabled peers to finish high school, pursue post-secondary education, get jobs, or live independently. Few coordinated services have been available to assist them in their transitions from school to work, home to independent living, and child and family-focused care to adult-oriented care.

Since the 1990’s, Federal legislation affecting children and youth with special health care needs has undergone sweeping reform. Some of these reforms mandate new supports for children (and adults) with disabilities. However, these new services are not well-integrated, due in part to a lack of coordination among organizations charged to work on behalf of this population. As documented in a 1996 General Accounting Office report, only 26 of the 130 Federal disability programs focus on employment, and only one percent of the resources in these programs were used to address this issue.

Transition planning must begin at diagnosis in order to move children and families along in a developmental fashion. One of the greatest challenges in planning is how to make a successful transition from the The transition from the pediatric to adult health care system has many challenges for youth with special health care needs. Health care professionals, on both the pediatric and adult sides, lack the training, support, and opportunities they need to promote the development of youth with special health care needs as partners in health care decision-making and policy formulation. Some adult health care providers may not be prepared to treat patients with complex medical conditions that begin in childhood. The benefits packages of public, private, and employment-based health insurance plans do not include the broad range of services and supports required by youth with special health care needs if they are to be healthy and productive citizens.

The result of this lack of focused, coordinated, well-funded services is that many youth and young adults with special health care needs are forced to remain dependent on family members, pediatric service providers, and public programs such as Supplemental Security Income (SSI), Welfare, and Medicaid, rather than having access to opportunities that will enable them to become Healthy and Ready to Work (HRTW).

Use Title V to facilitate the development of Healthy and Ready to Work (HRTW)/Transition systems for children, youth, and young adults with special health care needs and their families.

• Create a funding stream and accountability mechanisms, through the MCH Block Grant Program, to assure that all State Title V CSHCN programs provide, coordinate, and/or pay for HRTW/Transition services and facilitate the integration of these services into the continuum of care.
• Develop and test innovative approaches to the organization, financing, and delivery of HRTW/Transition services and supports, as well as to the professional training needed to ensure the provision of those services.
• Formalize a Federal HRTW Interagency Work Group, through a Presidential Directive or legislative change, with clear responsibilities and authority for ensuring that the appropriate Federal agencies work together to address the health issues of youth with special health care needs transitioning to adulthood.
• Develop collaborative partnerships through a National Title V HRTW Workgroup. The group would include youth and representatives from: State Title V CSHCN programs; the American Academy of Pediatrics; the American Academy of Family Physicians; family-leadership and other agencies; professional organizations; university training programs; advocates; and other stakeholders. These collaborative partnerships will assure that the HRTW/Transition Agenda is incorporated into the goals, objectives, and activities of these organizations and their constituencies.
• Develop and pilot models that State Title V CSHCN programs can use to provide and pay for HRTW/Transition services; facilitate the integration of these services and supports into the continuum of care.
• Integrate successful HRTW/Transition models into State Title V CSHCN programs and related State and community systems.
• Provide technical assistance and consultation to State Title V CSHCN programs, key stakeholders’ agencies, and other organizations to support State and community-based efforts to develop and maintain HRTW/Transition services and systems.

Assure that youth with special health care needs participate as decision-makers and as partners.

• Support skill-building opportunities for youth with special health care needs. Help them learn to act as decision-makers in their own health care, educational training, transportation options, interpersonal relationships, sexuality, living arrangements, inclusion in the community. Assist them to move from informed assent to informed consent.
• Develop, provide, and support skill-building opportunities that promote self-determination in youth through collaborative efforts with family-leadership professional and other organizations and agency stakeholders. Accomplish this through inter-professional education, joint Federal and State funding initiatives, and peer mentorship programs.
• Support skill-building opportunities for families and other components of youth’s support networks to enable and promote the development of youth with special health care needs as decision-makers in all of the above areas.
• Support skill-building opportunities for professionals to support and promote the development of youth with special health care needs as respected partners in decision-making and policy development and hold them accountable for their performance in this area.
• Support skill-building opportunities for youth with special health care needs to actively participate in health, education, employment, and disability policy development, as respected partners.

Make sure that all youth with special health care needs have accessible and affordable health insurance coverage.

• Expand public and private health insurance benefits packages so that they are more uniform, meet the needs of youth with special health care needs, and promote their well being, wherever they live. Such benefit packages should include, but not be limited to: personal health services and supports; assistive technology; other customized durable medical equipment; personal assistance services (PAS); youth/family education; comprehensive psychosocial services and referrals; counseling; and other services and supports that promote health and well being and that prevent the development of conditions secondary to the disability/primary health care condition.
• Develop guidance and recommendations regarding appropriate levels of reimbursement and billing codes for HRTW/Transition services, supports, and equipment for youth with special health care needs, as provided by pediatric and adult providers, programs, and facilities.
• Promote participation of every State in the Medicaid Buy-In Program legislated through the Ticket to Work and Work Incentives Improvement Act of 1999 (TWWIIA) through collaborative efforts with other agencies, professional organizations, and family-leadership stakeholders.
• Coordinate public, private, and employment-based health plans to promote flexibility and assure access and affordability, e.g., use State Medicaid funds to pay employer premiums or use employer funding to create high-risk pools.

Assure that all youth with special health care needs have medical homes responsive to their needs.

• Help pediatric and adult health care professionals to provide respectful, developmentally and age appropriate care to children, youth, and young adults with special health care needs by supporting training programs and other collaborative activities between professional organizations and youth and family-leadership stakeholders. These activities should focus on making internal medicine and family medicine physicians more comfortable with assuming the management of health care of children and youth with special health care needs as they become adults with special health care needs.
• Assure that there is universal access to a medical home for all youth with special health care needs. Provide services that are barrier-free (environmental/physical setting, communication methods, cultural relevance, language, attitude, transportation) in all settings in order to achieve 100 percent access and zero disparities in health care.
• Plan for the eventual transition of all youth with special health care needs to adult health care providers. Through State Title V CSHCN programs, coordinate and facilitate that transition over a period of time that meets the needs of each youth.