This Blueprint resulted from a multistep process designed to identify and address the health-related concerns and recommendations of the community of individuals, families, and providers who are concerned with health and MR. The first step occurred at a March 5, 2001, Senate Appropriations Subcommittee hearing, called by Senator Ted Stevens (R-AK), to receive a literature review of the health and health status of adults, adolescents, and children with MR. Authors of this study and other witnesses reported that people with MR had poorer health and far less access even to basic screening and corrective treatment for vision, hearing, and oral health problems than others and that diagnosis and treatment of mental illnesses and other serious disorders in this population were often delayed, inadequate, or not provided at all.
At the hearing, the Surgeon General announced his intention to focus the attention of the Nation on the health needs of adults, adolescents, and children with MR. Subsequently, the community of people concerned with health and MR were invited to help plan a national conference on health disparities and MR by communicating their experiences, concerns, and ideas to a dedicated website and at a national Listening Session held on October 10, 2001. The estimated 8,500 comments and suggestions sent to the website and expressed at the Listening Session formed the basis for planning the national Conference. (Appendices E and F are a summary of the Listening Session and a list of speakers at the Listening Session, respectively.)
The purpose of the national Conference, held December 5–6, 2001, in Washington, DC, was to identify important issues in health and MR and to develop action steps to address these issues. In inviting Conference participants, every effort was made to reflect the broad diversity of people with MR and others concerned with their health. Officials of Federal agencies attended the Conference as observers and as “resources,” providing information requested by participants.
Eight Conference work groups identified priority issues from those proposed during the planning process and from their own experiences. Work group topics ranged from provider attitudes and health care financing, to appropriateness of services across the lifespan and health promotion. Before the work groups began their deliberations, plenary session presentations provided background information on what was currently known about each group topic, and described examples of diverse programs providing health care and related services to adults, adolescents, and children with MR.
To draft the Blueprint, it was necessary to consolidate nearly 50 issue areas and 200 action steps recommended by the Conference work groups. All records of the work of the groups were reviewed, including plenary session presentations of highlights of the work group decisions and written notes and audiotapes of group deliberations. An informal discussion among work group moderators as well as review of these records enabled drafters of the Blueprint to array the action steps under six broad goals that reflect priorities shared among the work groups. Action steps shown under the goals have been distilled from multiple group deliberations and reports.
“Potential strategies,” also derived from group deliberations, have been added to provide examples of activities, topics for research, and the like. These action steps and strategies should not be considered the only ways to achieve the six goals. The resulting Blueprint presents a consolidation of the problems identified and solutions proposed by participants from the website, the Listening Session, and the Conference. It is intended for multiple audiences, from the community of people who live with MR on a daily basis, to the health care providers, researchers, agencies, and others that can contribute to a more inclusive health care system. Each partner and combination of partners will bring their own priorities and ideas to the task of improving the health of people with MR.
Throughout the Conference, certain core values permeated the deliberations of the work groups and the general Conference discussions at plenary sessions. As expressed by several Conference participants, these values include the following:
“We ought to be about keeping people healthy….”
“For things to change, we must change the stigma [of MR] to understanding and respect.”
“[Every action must fully include]…people with MR,…family involvement, and…people telling us what they need, as opposed to our telling them what they want.”
“Providers have to look beyond the disability and see the person—talk to us!”
“…If we do all [of the action steps], and we don’t do it in a person’s first language, and we don’t do it showing respect…for their culture, it means nothing….”
“[There must be] coordinated, community-based services that [are] integrated, available, and accessible. Let’s not make it all so difficult.”