Background

In 1991, Secretary of Health and Human Services (HHS), Louis W. Sullivan, MD, recognized the progress that the United States had made in serving children, including those with special needs. Dr. Sullivan outlined the actions to continue to meet the needs of these children. He emphasized requests for help received from Central and Eastern Europe and asked HHS’s Health Resources and Services Administration (HRSA) to identify ways to respond to the plight of institutionalized children, particularly those with profound disabilities.

The systems-of-care approach was considered the best way to help children and youth with special needs. HSRA developed a plan to present the principles of this approach to selected countries in Central Europe. The result was the first meeting of the International Children’s Congress in June 1992. The Congress, with 60 representatives from the US and the Czech Republic, Slovakia and Hungary, focused on helping children with disabilities and their families become an integral part of their home communities. The countries learned how to develop family-centered care; to build partnerships across different agencies and with families; and to build systems of services using professionals from different disciplines at the local, neighborhood level.

Afterwards, with assistance from public sector organizations and private foundations, HHS continued to work with representatives from those Central European nations to advance the systems-of-care approach for their children and youth with special needs.

Subsequent Congresses were convened, first annually, and then every two years, to share best practices and the systems-of-care approach:

• In 1993 (Washington, DC, USA), the Congress focused on early intervention and on the creation of networks that joined local teams of family and community services.
• In 1994 (Naples, Florida, USA), the Congress identified those practices that were working best and how to use them in other Central European nations and communities.
• In 1996 (Washington, DC), the Congress broadened its scope beyond Central Europe, and included representatives from 19 nations. They shared their work and model programs to promote community-based systems of services and supports for children and youth with special needs and their families. An “Agenda for Action” was adopted to help guide work both for future Congresses and in their home countries.
• In 1998 (Washington, DC), with 140 participants from 37 nations, the Congress focused on exploring: (1) exemplary family-centered programs; (2) advocacy initiatives; (3) effective partnerships that promote inclusion; and (4) building community-based networks of care and services. The World Bank, African Development Bank, Save the Children/UK, USAID, and DANIDA joined in supporting the Congress.
• In 2000 (Edmonton, Canada), more than 350 participants attended the Congress, many from developing nations. The value of using computer-based technology for children and adults with disabilities was explored, as was the state of services for persons with disabilities worldwide. Best practices for both developing and developed nations were shared.
• In 2002 (St. Luis, Argentina), the Congress hosted more than 400 representatives from 50 countries. A pre-Congress workshop on family advocacy was developed and run by a multi-national team. The Congress continued its child and family focus, and also explored other topics, including: the transition from adolescent to adult and how health and education systems manage this transition; concepts and services for people with disabilities among indigenous populations; and how the systems-of-care approach could best be used in developing nations.
• In 2004 (Stravanger, Norway), the theme of the 8th International Congress was “Towards Full Citizenship.” More than 400 participants from more than 40 countries focused on how to include children and youth with special needs in every part of society. The Congress addressed the role of families and communities, and the importance of education, health services, the transition from school to work, and higher education.

2006: 9^th International Congress

The 9th International Congress on Community Services for Children, Youth and Families with Special Health Care Needs will return to the Washington, DC area on December 4-7, 2006. Its theme will be: “Community Access and Resources for Everyone” (CARE).

While the roster of nations and number of people participating in the Congress has grown, and progress has occurred, for example, with the growth and improvement in adaptive and computer technology to help reach children and youth with special needs worldwide, the underlying precepts and goals of the Congress have remained constant:

• Including all children, particularly children with special needs, in all activities in their communities.
• The primary importance of families and their vital partnerships with professionals.
• The importance of an approach that brings together professionals from different disciplines to create and maintain supports and services at local levels.

HHS Leadership Role

Since 1991, HHS has taken a lead role – if not the lead role – in developing the program, gaining the support of federal agencies and private sector organizations, and ensuring the quality of the information shared at the Congresses. After a dozen years of work both during and between official meetings, the International Congress on Community Services for Children, Youth and Families with Special Health Care Needs continues to promote the vision of community-based, integrated services. It has fostered international exchange about best practices for both developed and developing nations to better serve and promote lives of dignity and worth for children and youth with disabilities and other special needs and their families.

Each HHS Secretary since Secretary Sullivan has endorsed and supported these efforts. Leaders of other host nations and countries have participated in each Congress since 1992. To their credit, the Congresses have provided more than “take home messages” from the meeting sessions. Each has created partnerships across nations to identify best ways to apply the state-of-the-art best practices to the needs, cultures, and capacities of the participating countries. These partnerships have endured; programs have been built and the children with disabilities and their families have benefited for more than a decade.

In October 2002, the HHS Office on Disability was established in response to the President's New Freedom Initiative (NFI). The NFI is a comprehensive strategy across all agencies of the US government to promote the full integration of people with disabilities into all aspects of American life. The HHS Office on Disability is responsible for coordinating NFI-related efforts both within the Department and with other US agencies and departments. In addition, responsibility for the International Children’s Congress was assigned to this office, and its Director, Dr. Margaret Giannini, was asked to assume the lead. She gave an opening address at the 8^th Congress in 2004.