Magazine article The Exceptional Parent

The President's Committee on Mental Retardation

Magazine article The Exceptional Parent

The President's Committee on Mental Retardation

Article excerpt

When John F. Kennedy entered the office of the Presidency, no federal programs existed that addressed the needs and interests of people with mental retardation. Inspired by personal experience (his sister, Rosemary, has mental retardation), President Kennedy created a President's Panel on Mental Retardation in 1961 to advise him on how the federal government could best meet the needs of this neglected population. Emanating from that panel was a research agenda placed under the auspices of the newly created National Institute on Child Health and Human Development.

In the following administration, President Johnson formally chartered the President's Committee on Mental Retardation (PCMR), and the Committee has served every president since in an advisory capacity.

Many of the field's most distinguished professionals and advocates served on the PCMR, most notably the incomparable Dr. Elizabeth M. Boggs. Dr. Boggs, a physicist who gave birth to a son with profound mental retardation, initiated the Facilities Construction Act, which provided funds for service programs throughout the states, many for the first time. PCMR recommendations led to the formulation of the developmental disabilities concept and established the national network of programs we have all come to depend upon: University Affiliated Programs, Developmental Disabilities Councils, and Protection and Advocacy Systems.

The President's Committee charter incorporates prevention as a keystone of its mission. Promoting healthy pregnancies, immunizations, child safety, and early interventions for infants and toddlers remain at the core of PCMR initiatives.

* PCMR conducted National Collaborative Academies on Mental Retardation, inviting the governors of the states to appoint teams to come to Washington, D.C. for intensive immersion in best practices and policy issues. Over five years, teams from 40 states and Native American tribes participated in the academies and developed action plans for inclusion. The 1999 academy even hosted a delegation of 17 team members from Great Britain! As a result, Louisiana has replicated the experience in state academies for the past five years; the Navajo Nation held a Four Corners Academy bringing tribes together in the Southwest; a long-standing deinstitutionalization lawsuit was successfully resolved; and waiting list legislation appropriated funds for new community supports and services in several states.

* PCMR, in collaboration with the Reaching Up Foundation, created the National Alliance of Direct Support Professionals. The goal of this organization is to promote the quality of life and educational opportunities for frontline workers in human services, a key to successful life in the community for citizens with intellectual disabilities. That collaboration continued in the publication of "Opportunities for Excellence," which deals with quality direct support, and a five-part series, With a Little Help From My Friends (full text available free at

* Another strategy PCMR employed for developing the workforce was the initiation of a national conference for emerging young leaders in the field aged 35 and under. "The Next Generation of Leadership Symposium" will bring young people with disabilities, young parents, direct support professionals, educators, agency administrators, advocates, elected officials, researchers and all other interested parties to Washington this summer for the fifth year in a row. Entitled the "Millennium Summit," the conference will focus on learning skills in collaboration, behavioral support and quality assurance, and will examine emerging policy issues of the new century. …

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