About the Consortium

For the past decade there has been a tremendous shift in policy and service delivery for children and their families. This shift is based on a consensus between policy makers, providers, advocates, researchers, and families that:

• children with special health care needs require a range of services and supports that are best delivered within their families and their communities, and
• these services are more effective and efficient when service systems and agencies are coordinated and organized to provide a system of care that is culturally competent and family centered.

For children with special health care needs and disability, the challenge to address these aims throughout our country has been complex. The advent of managed care, the fragmentation among agencies and providers, and difficulties with knowledge transfer have contributed to the slow implementation of strong community-based systems of care for these children and their families.

To improve rehabilitation outcomes for children and youth with disabilities with special health care needs, increasing the effectiveness of the system of care at all levels - the provider, program, and policy level - is critical. We address this goal in the context of the potent changes that are occurring in the environment. This project provides an innovative and timely approach to researching the complexity of the service delivery system through a consortium of three universities: Georgetown University (Child Development Center, including the Center for Child Health and Mental Health Policy), Brandeis University (the Heller School) and the University of Florida (Institute for Child Health Policy) in collaboration with Family Voices, a national parent organization for families of children with special health care needs.

This consortium has been formed to establish the National Rehabilitation Research and Training Center for Children with Disabilities and Special Health Care Needs (NRRTC). It is an exciting partnership among four entities that each have been concerned with improving the system of care for children and youth and have brought a special expertise to the partnership. A shared set of values regarding the importance of a family-centered, culturally competent approach underlies the work of all of the partners.

The Georgetown University Center for Child and Human Development (GUCCHD) was established four decades ago to improve the quality of life for all children and their families, especially those with disabilities. As a division of the Department of Pediatrics, it is founded on an interdisciplinary approach to service, training, research, community outreach, and public policy. For more than 20 years, the GUCCHD has provided leadership to conceptualize, design, and implement the components of a system of care that works for all children with special needs and their families through policy development, policy analysis, knowledge development, training, technical assistance, and publications. The center has worked internationally and nationally as well as with all states and many communities to implement family-centered, culturally competent, coordinated systems of care that involve public-private partnerships and effective allocation and management of resources. The center has a unique perspective of both directly serving children with disabilities and special health care needs (SHCN) and addressing policy and systems' development issues. The center is funded by a broad array of federal, state, local, and private entities to support its mission.

The Heller School at Brandeis University has been a leading research and graduate educational institution for studies on major social issues for more than thirty years. The Ph.D. and Masters in Management educational programs within the school are founded on an integrated, multidisciplinary approach that incorporates the economic, political, sociological, and quantitative perspectives of the policy process. The Nathan and Toby Starr Center for Mental Retardation and the Institute for Health Policy are two of six educational and policy research centers at the Heller School that are involved in the Consortium. The Starr Center's research activities are focused on the context and consequence of long-term, family-based care for persons with mental retardation and other disabilities, and the evaluation of social policies that support persons with disabilities and their families across the life span. The Institute for Health Policy (IHP) is one of the largest academically based health policy research groups in the country. IHP and the Starr Center are collaborators in operating a Children's Health Policy Center of Excellence that is currently funded by the Maternal and Child Health Bureau. The key personnel for this project from both the Starr Center and IHP are well known for connecting policy making with health services research and, as a result, demonstrating the importance of doing applied research to inform current policy discussions as well as shaping future policy direction.

The University of Florida, Institute for Child Health Policy, for more than a decade, has focused on supporting efforts to continuously improve health systems for children with SHCN and their families. The collaborative network of training and technical assistance initiatives have been funded through the Maternal and Child Health Bureau including a National Center for Policy Coordination and Partnerships, and MCH-NetLinks. A central theme of all of the work of the center has been promoting family-centered care systems for children with SHCN ages 0-21 and their families through the coordination, development, and analysis of policy and programs; and through the provision of training, technical assistance, information, and supports to Title V Children with SHCN programs, family leadership organizations, and other organizations with a responsibility for children with special needs. Areas of consultation and technical assistance have included the Title V Legislative Mandate, the Title V Block Grant Performance Measures, and the SSI program. Currently the Institute is supporting the national MCH effort related to youth in transition.

Family Voices is a national grassroots network of families and friends speaking on behalf of children with SHCN. Family Voices serves as a clearinghouse for information and education about ways to assure and improve health care for children with disabilities and chronic conditions. The network includes more than 18,000 families and friends, a volunteer Coordinator in each state, ten Regional Coordinators, and staff located in New Mexico, Iowa, Illinois, and Massachusetts.

This is a publication of the Consortium for Children and Youth with Disabilities and Special Health Care Needs funded by the National Institute on Disability and Rehabilitation Research of the U.S. Department of Education under grant number H133B001200. The opinions contained in this publication are those of the grantee and do not necessarily reflect those of the U.S. Department of Education.