Mental Retardation:A Historical Review 1966-1985

DOCUMENT RESUME

ED 278 202 EC 191 769 AUTHOR Krause, Fred J. TITLE President's Committee on Mental Retardation:A Historical Review 1966-1985. INSTITUTION President's Committee on Mental Retardation, Washington, D.C. PUB DATE [86] NOTE 38p. PUB TYPE Information Analyses (070)-- Reports Descriptive (141)

EDRS PRICE MF01/PCO2 Plus Postage% DESCRIPTORS Civil Rights; *Committees; CommunityPrograms; Federal Legislation; Federal Programs; History; *Human Services; *Mental Retardation; Public Relations; *Resource Materials; State Federal Aid; *Welfare Services IDENTIFIERS *Presidents Committee on Mental Retardaticn ABSTRhCT Recommendations of the President's Committeeon Mental Retardation to encourage collaborationamong government, voluntary, individual, community, and privatesector efforts are reported in this publication which presentsa historical review of the Committee from 1966 through 1986. The backgroundand establishment of the Committee are discussed in the firstsection, covering appointment of a panel (1961),a national advertising and awareness campaign (1963), a White House Conference (1963), and major legislation for mental retardation planning,program development, and construction (1963). The Committee's initialwork (1966-1972) is described in the second section, including informationon early leaders, major publications, concern for native Americans,goal setting, and the legal rights movement. The work ofthe Committee from 1973-1980 is discussed in the third section, coveringsuch areas as White House activities, emphasis on communityprograms, and prevention of mental retardation. The Committee'scurrent activities are discussed in the final section, including formation ofa new committee, addressing rights of mentally retardedpersons, and sponsoring activities concerned with the preventionof mental retardation. Appendices present:a list of members of the President's Panel on Mental Retardation;a list of vice chairpersons and executive directors; the executive order establishingthe President's Committee on Mental Retardation; statementof goals and accomplishments; a list of committee members; and listsof annual reports and other publications of the committee. (CB)

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Points of vpw or opinionsstated in this docu . ment do hot necessarilyrepresent official OERI position or policy.

President's Committee On Mental Retardation: A Historical Review 1966-1985

Prepared by:

Fred J. Krause, Former Executive Director, PCMR and PCMR Ad Hoc Committee Members A Preface

Over the past three decades,we have witnessed retardation in the foregmund. Duringthe decade of many accomplishments in the field of mental retarda- the 1970's to the present, considerableactivities have tion. In the 1950's, in response to the social activism taken place under the leadership ofthe President's of families and professionals concerned with the con- Committee on Mental Retardation. The resultsof this dition of mental retardation, theDepartment of collaboration between government, voluntary, Health, Education, and Welfare established in- the dividual and community effoi ts, andthe private sec- Secretary's Committee on Mental Retardation. This tor are reported, in this publication. was the first emerging effort to coordinate Federal ac- Itis hoped that this historical account willbe tivities in mental retardation. helpful to future members of the Pmident'sCommit- In 1961, President John F. Kennedyestablished the tee on Mental Retardation, State Developmental President's Panel on Mental Retardation,which DisabilitiesCouncils,Associationsfor Retarded resulted in the involvement of theexecutive and Citizens, and to the many voluntaryand charitable legislative branches in setting policiesand establishing groups whose contributions are an everyday event. new programs. Federal initiative was matchedby the Today the field of mental retardation isentering a fifty States as governors and their administrators period of change, with greater communityinvolve- followed the lead of President Kennedy. ment and awareness, and the developmentof closer Since 1966, the President's Committee on Mental alliances between organizational interests,because of Retardation has been successful in meetingits objec- this, we feel an historical account is timelyonethat tives through coordination of all threebranches of will provide both background and directionfor future government. In addition, it has encouraged advocacy accomplishments. organizations to keep the rights of peoplewith mental

Acknowledgement

In 1986, the President's Committee on Mentaltributed significantly to establishingthe authenticity Retardation will commemorate its twentieth anniver- of this report. Major credit is givento PCMR sary. In preparation for this, the committee members member Marguerite Shine, whose requested a report outlining the history of the encouragement to com- the author helped make this projecta reality. mittee.This accounthighlightsthe major ac- Many of the PCMR staff were importantassis- complishments since the initial President's Panelontants, particularly Nancy Borders and Helen Mental Retardation. Cald- well, as well as the public affairs staffof PCMR. The contributions of all committee members have The histoty of PCMR is, in fact, been impressive under the able leadership of Chairper- a product of everyone who has served on the President's Commit- sons Leonard W. Mayo, George Tarjan, M.D., Vice tee on Mental Retardation since 1966, includingstaff Chairperson, Robert Aldrich, M.D., Congressmanand consultants. Clair Burgener, Lorraine Beebe, Henry Cobb, Ph.D., Finally, my appreciation tomy wife and family, Herbert Cohen, M.D., Elsie Helsel, Ph.D. andmostwhose understanding and assistance recently Albert L. Anderson, D.D.S. were exceptional. The assistance of members, staff,and colleagues has been invaluable in documenting thishistory of the President'sCommittee on Mental Retardation (PCMR). Their expertise and dedicationhave con- Fred J. Krause , SERVICES OF HEALTH ANDHUMAN THE SECRETARY WASHINGTON. D.C.20201

The President House The White 20500 Washington,D.C.

Dear Mr.President: account ofthe submit anhistorical honor to This report and It is an MentalRetardation. officials, Committee on Federaland state President's cooperation of state whohaveresponded the people in every acknowledgesthousands of Committee onMental literally thePresident's .to theleadership of Retardation. Mental Committee on had on of thePresident's Committee has The history the impactthe the demonstrates policies, and Retardation andrehabilitationthe preventionand social,educational, made towards provides an contributions This document significant of mentalretardation.and privatesector amelioration of public society to demonstration influence our encouraging which willcontinue to citizens who are collaboration, responsive toour be moreaccepting and retarded. mentally the supportyou have leadership and continued appreciate your together for We forward toworking provided, andwe look future. progressin the Sincerely,

Otis R.Bowen, M.D. Secretary

3 THE WHITEHOUSE WASHINGTON

September 7,1984

I wantto thank Committee all the behalf on Mental membersof the ofa Retardation cultyin group of foryourPresident's representingAmericancitizens effortson You themselves. whohave haveserved diffi- zenswell. our six special Your million problemsactionsin mentallyretarded regulations thatwoulddrawingattention citi- specific affecting becreated tothe legislation,them,and of bychanges positions speak our needto in correspondwithwell ofyour support Your my concern. continuing Administration's These important support policies. me issuesis ofthis callingfor thegreatly Administration in privateappreciated. onmany employing sectorto Thereport serviceto themmentallyretarded recognize to to all and workers thewisdom Americans. potential was notonly employers;itwas a a Now,once service effortsare.again,youare The provinghow ourRetardation theme ofyour important effortstoAwareness,"calls current your tardation. combatthe upon all meeting,"Mental The causesandAmericansto asappropriate an Americanpeople effectsof assist integralservicesand to are being mentalre- havemy part of accept askedto complete our mentally support support.society.For retardedpeople Nancy thosegoals, and Isend you success. youour best wishesfor everyfuture

Q.-.10. History of President's Committee on Mental Retardation Background

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he foundation of the President's Committee on various other countries, including Russia, England, Mental Retardation was established in October, Denmark and Sweden. 1961, when President John F. Kennedy an- The President's Panel on Mental Retardation nounced the formation of the Presidential Panel on published its report, A Proposed Program for Na- Mental Retardation. The panel of distinguished tional Action to Combat Mental Retardation, in Americans, led by its chairman, Leonard Mayo, laun- 1962. This report, with three supporting documents ched a plan to respond to the President's charge to by the Task Forces on Education and Rehabilitation, review the status of programs for persons with mental Behavioral and Social Research, and Law, con- retardation. Eunice Kennedy Shriver served as a stituted a major milestone in the history of mental special consultant and liaison between the panel and retardation in the United States; nothing on this scale the White House. With the cooperation of several had been done before. The panel's plan of action, as Federal departments and agencies, the intensive in- laid out in that report, represented a unique effort by vestigation took many of the panel members into twenty-seven committee members of diverse every region of the United States, as well as into background and wide experience. It included the

8 findings from a series of public hearings (planned by December 1962Dr. Stafford Warren appointed Leonard Mayo and Eunice Shriver) in several parts of Special Assistant to the President on the country, intended to provide broad public input Mental Retardation. before the report to the President was submitted. In response to the President's charge, the panel com- February 1963Presidential Message to Congresson pleted its work in two days less than the year it had set mental health and mental retarda- for itself. (See Appendix A for a list of members.) tion. The chronology for implementing the proposed program of national action included the following February 1963Four bills introduced in both houses highlights: of Congress representing the first phase of implementation of major October 1961The President's Panel appointed. recommendations.

October 1962Panel report submitted to the Presi- June 1963Initial approach to Advertising Coun- dent: A Proposed Program for Na- cil for a national campaign on mental tional Action to Combat Mental retardation (carried out in 1964-1967 Retardation. with funding support from the Na- tionalAssociationforRetarded Citizens, the Joseph P. Kennedy, Jr., Foundation, and the Department of Health, Education, and Welfare).

September 1963White House Conference on Mental Retardation;participantsincluded representation fromstategovern- ments, as well as leaders in the field.

October 1963Major legislation for mental retardation planning, program development and construction. Public Law 88-156 and 88-164 signed into law. The President's Panel saw clearly the need to develop the entire plan of action into a cohesive, flexi- ble, dynamic and effective attack on the totalpro- blems concerning programs for the mentally retarded persons in this country. To this end, the panel made several recommendations regardingorganization, planning and cociAlination of programs. The history of subsequent Federal legislation to implement these recommendations during theadm:Inistrations of Presidents Kennedy, Johnson and Nixon is an in- teresting and significant story, detailed in the PCMR Report MR 76: Mental Retardation Past and Present.

State Responses

It is noteworthy that state planning and organization of services was a first priority of the Secretary of Health, Education and Welfare. The Secretarywas authorized to make grants to states for comprehensive planning in mental retardation. Thiswas the 6 substance of Public Law 88-156 and Planning President's Committee on Mental Amendments of 1964 and 1965, and resulted in com- Retardation is Formed prehensive plans being submitted byfifty-three jurisdictions on an appropriation of $2.2 million As the panel's recommendations began to be im- dollars. plemented, it was becoming obvious that some over- The governors of every State were asked to review view and coordination of the public and private effort the array of major services relating to mental retarda- in mental retardation on a continuing basis was tion outlined in the President's Panel Report. In necessary. This coordination could not come solely order to qualify for Federal funds, the States were from government sources, nor could it come only further required to establish an inter-departmental from the private sector. Clearly a combination of the mechanism for joint planning and coordination. Each two would be required for mobilizing and coor- State carried out these recommendations in the pro- dinating the wide variety of interests. The original in- cess of planning and in the subsequentdevelopment itiatives undertaken by the Office of the Assittant to of a wide variety of organizational models. The State the President for Mental Retardation had been crucial planningprocessesemeeged witha common in the formulation and passage of basic legislation. characteristic of moving toward a coordination of Now, however, a new vehicle was needed to mold na- human service programs for individuals with mental tional forces into a representative alliance of govern- retardation in every State of the union. ment and private citizens who could provide an ongo-

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4-- _k ing forum to underscore the needfor greater well- being of persons with mental retardation.President Lyndon B. Johnson established the President'sCom- mittee on Mental Retardation byExecutive Order 11280 on May 11, 1966, signedat a White House ceremony. The Secretary of Health, Education and Welfare was named chairperson. TheSecretary of Labor and the Directors of the Officeof Economic Opportunity and of other Federal agencieswere listed as ex-officio members. The main body of the committee was comprised of twenty-one citizen membersap- pointed by the President for staggeredthree year terms. (The first Executive Order is shownat Appen- dix B.) The PCMR Executive Order set forth thefollowing conditions: (1) The Department of Health,Education and Welfare, now the Departmentof Health and Human Services, was designatedas the agency, "which principally shall provide thecommittee with necessary administrative services and facilities." (2) The post of the Executive Directorwas established, and David B. Ray, Jr., was appointedas the first Ex- ecutive Director. Secretary of HEWJohn W. Gard- ner, Chairman, swore in the original committee members on June 22, 1966, and namedthe former Director of the National Institute ofChild Health and Human Development, Robert A. Aldrich,M.D., as Vice-Chairman. Chairman Gardnerchallenged the members to, "look at the whole fieldand try to see the relative priorities," andto help design the strategies fcr progress in the mental retardationfield.

ACTIVITIES OF PCMR,1966-1972 fi 411/4?_: The Committee Begins Work

r,rk -7 The minutes of the first meetingstated that Chair- man Gardner enjoined the committeeto criticize, to stimulate, to raise questions,to bring information from the grassroots, andto provide the broad perspective that every such largeundertaking needs. The first meeting of thecommittee members established the broad goals thatPCMR has held since that time. These included: (1)environmental and biomedical prevention; factors whichcause mental retardation; (2) early recognitionand treatment of the condition, with emphasison special education and habilitation services; (3) identificationof human and legal rights, and the attainmentof these rights for mentally retarded citizens; and(4) greatly expanded public awareness as the key torealization of the goals.

11 Public awareness has been the fabric on which PCMR has woven its strategies throughout the years. The first PCMR publication was "The Mentally Retarded: Their New Hope." This booklet was distributed through a saturation campaign of radio, television, and print ads conducted by the National Advertising Council, and was sponsored at that time by the Joseph P. Kennedy, Jr, Foundation. Between HEW and the National Association for Retarded Citizens(NARC),approximatelytwomillion booklets were distributed in a two-year period. With the mandate from the Executive Order clearly defining its purposes, the committee began to develop itsstrategies soon after the initial meeting. The PCMR began to investigate .all Federal governmental resources, and to seek support and information from major national health and educational agencies. Public agencies, private volunteer organizations, and many experts in the field of mental retardation provided consultation. One of the first activities of the committee was to hold public forums. Through this vehicle, PCMR was briefed by national leaders and provided with valuableinformation fromgrassrootsources, espeCially from families, State and local planners and program managers. A series of meetings, forums, and site visits Were conducted in 1967 and 1968 which took PCMR members to various cities across the country. The committee was also in contact with officials in Canada. One result, in cooperation with the Institute for the Study. of Mental Retardation and Related Disabilities at the University of Michigan, was a joint United States-Canadian Conference on manpower needs in mental retardation programs held in Banff, Alberta, Canada, in 1969. The President's Committee on Mental Retardation published the proceedings in a booklet, "Manpower and Mental Retardation: An Exploration of the Issues." The First Caribbean Men- tal Retardation Conference was another joint ven- ture, with a meeting held in Jamaica. A report was published entitled, "Mental Retardation in the Carib- bean: Needs, Resources, and Approaches." Reaching out on a still wider scope, the first Pacific Forum on Mental Retardation was held in Honolulu, Hawaii, in September of 1971, under the sponsorship of the President's Committee on Mental Retardation, with assiitance from several co-sponsors. Participants came from Asia and the South Pacific, including New Zealand, Japan, Korea, Hong Kong. A report on the conference was published in 1972. 6 kr -

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*tag- Wrec., 44. alga josArr.". Early Leaders ex-officio members from other Federal departments From 1970 to 1972, Dr. Joseph Douglass servedas and agencies; extensive support from the field; and, the Executive, Director. Due to poor health, Dr. most importantly, the personal interest and involve- Douglass 'resigned in 1972, and his deputy, Fred J. ment of each of our Presidents. It should be noted Krause, formerly the Executive Director of the that respected public figures, such as Eunice Kennedy California Council of Retarded Children,was named Shriver, Muriel Humphrey, Jeannette Rockefeller, as the Executive Director. Governor Thomas J. Meskill, and Congressman Clair One can trace the President's Committeeon Men- Burgener, served on the President's Committee on tal Retardation's earlier activities through thecom- Mental Retardation and were always available to lend rnittee's newsletters. These were published quarterly their help and support. through October, 1976, at which time Federal funds The support and consultation of many volunteer were no longer authorized for Federal agency and organizations, such as the American Association on committee newsletters. Mental Deficiency and the Council for Exceptional The committee's early success was due to the Children, were noted in all the committee'spro- caliber of the members; the active participation of the ceedings.It would be difficult to name allthe Secretary of HEW as Chairman; the interea of the members of the committee who.made a measurable

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contribution, but in the early years, Leonard Ma-Yo;' poverty creates mental handicaps." George Tarjan, Robert Cooke, Elizabeth Boggs, and A monograph in 1968 titled "Changing Patterns in EuniceKennedyShriverservedbothonthe Residential Services for the Mentally Retarded" was President's Panel and the President's Committee on published by PCMR. Some fourteen contributing MentalRetardation,providingcontinuityand authors provided the editors, Dr. Robert Kugel and balance to the committee's deliberations. Wolf Wolfensberger, an imaginative planning approach to residential living for mentally retarded 'leo- 'Major Publications pie. The principle of normalization made an impact . On September 24, 1968, the committee members on the American scene. Many other PCMR publica- met with President Lyndon B. Johnson at the White tions followed on residential and community services. House to present its second report "MR 68The In 1968, the committee held a national conference Edge of Change." Accepting the report, President on education problems of children in the inner city. Johnson drew particular attention to the report's mil- The PCMR report, "The Six-Hour Retarded Child," _,phasis that "three-fourths of this nation's mentally was a product of the conference, and called for retarded people live in either urban or rural slums." change in the special education of children in the He continued, "Poverty creates not only misery, but public educational system. Robert Finch, HEW

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Secretary and Chairman of PCMR, stressed the im- held conferences on early screeningof newborn in- portance of the recommendations of thoseattending fants and young children. PCMR theconference;participants published reports dealtwithearly and recommendations on theseimportant subjects. childhood education, the family,teaching, labeling, educational research, school responsibilityand com- Concern for Native Americans munity participation. These subjects becathe the When Lorraine Beebe servedas vice chairperson, targets of PCMR agenda for the early 1970's. she asked the committee membersto focus attention In April 1970, PCMR met withPresident Richard on the problem of American Indians living Nixon and released the annual on reser- report, "The Decisive vations. A subcommittee madesite visits and met Decade." PCMR, in concert withthe President's with various Indian Committee on Employment of groups. The Departments of In- the Handicapped, terior and Health, Education andWelfare signed a published "These, Too, Must BeEqual." The report PCMR joint agreement of cooperation contained thirty-nine recommendations to improve for habilita- coordination of programs and services,in order to tion and employment of individuals-with mental better serve the special education, health retardation in the United States. and social The Chairman of the service needs of families having children President's Committee with mental on Employment of the Handi- retardation who live on Indianreservations. capped, Harold Russell, andSecretary Robert Finch, Chairman of PCMR, jointly announcedactions to Setting Goals disseminate the report to all State and local voca- On November 16, 1971, PresidentNixon, after tional rehabilitation and employmentagencies, and to meeting with members of the President's the Governor's Committee Commission on Employment of the on Mental Retardation, announced from theWhite Handicapped of each State. House a pledge to continue expansion Led by Vice Chairman Clair of Federal and Burgener, and later, State programs, and calledon the nation to pursue Lorraine Beebe, as vice chairperson,the committee two major goals; 4:1 N,1 t, at-1 ; v, , da-m-g&k, yvi.' (1) To reduce by half theoccurrence of mental retardation in the United States before the end of this century. (2) To enable one-third of themore than 200,000 retarded persons in public institutionsto return to useful lives in the community. The President stated, "These goalsare realistic and achievable; we already have most of the knowledge and many of the techniques they will require, and the rest are within reach of research." President Nixon also directed the Department of Justice to takesteps to strengthen the assurance of full legal rights for mentally retarded citizens. In thesame statement, he directed other Federal departments and agenciesto be energetic in their efforts, and to collaborate with the President's Committee on Mental Retardation toward these national. goals. The Committee and staff builtupon this Presiden- tial statement and began to translate the President's goals into specific publicawareness activities. The Committee produced films and radio announcements to promote community acceptance and to stress prevention. All executive departments and State agencies were asked by the PCMR chairmanto evaluate their programs with a view to providemax- imum support to the two goals.

Legal Rights Movement of the 1970's Concurrently with the goals and initiatives growing out of the President's support, legal suits in sixstates were filed following the Federal court action in Alabama establishing standards fortreatment of residents in state institut.ons. This Alabama legalac- tion on human rights and standards oftreatment, along with the Pennsylvaniacase on the right to education for all handicapped children, resulted in landmark court decisions that were thecornerstone of subsequent legislation establishing legal rights for Lawrence Kane, a Cincinnati attorney and member of mentally retarded and other disabled people. the President's 'Committee on Mental Retardation, Under thechairmanshipofSecretaryElliot was Chairman for this conference sponsored by Richardson, and later Caspar Weinberger, the Presi- PCMR. It was supported by HEW funding and had dent's Committee on Mental Retardation continued the cooperation of Ohio State University, and through the early 70's with an energetic effortto resulted in the highly regarded publication,"The review the research, training, education and residen- Mentally Retarded Citizen and the Law." Atthat tial services for individuals with mentalretardation. time, a total of forty-four class action suits and legal Simultaneously, a broad public awareness campaign actions were being pressed on all fronts for the rights was undertaken with regional forums in various parts of mentally retarded citizens in education,treatment, of the country. Emphasis was directed towardim- habilitation, and in zoning ,forgroup home living. plementation among the states of the Presidential In the decade of the 70s, anew self-advocacy goals in 1973. President Nixon senta message to the movement, People First, began to take form. People first National Conference, "The Mentally Retarded First groups organized in the far West and in New Citizen and the Law," held in Columbus, Ohio. England. Later, the organization, United Together,

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Fe4kdoe4eca-444atoee4., was given support and consultation by PCMR. This Litigation through the Federal courts resulted in self-advocacy movement, for people who were men- measures to protect the right to treatment in institu- tally retarded and developmentally disabled, con- tions, the right of education in public schools, and in- tinues to grow as an active and influential group. creased recognition of the right to special services for PCMR's role in the legal rights of mentally retard- people with mental retardation within local, State and ed people has been an important one. It can be at- Federal correction facilities, and in the courts of law. tributed to many members, with special appreciation Stimulated by the 1969 research of Dr. Bertram to Larry Kane and David Udall, and to consultants Brown and Dr. Thomas Court less, the committee Julius Cohen, Dennis Haggerty, Gunnar Dybwad, continued to provide leadership in this area of con- Michael Kindred, Paul Friedman and Stan Herr, who cern through many endeavors, including publishing provided assistance on numerous issues. several documents. The latest, a comprehensive text, The committee was also able to encourage the "The Retarded Offender," was edited by PCMR American Bar Association, Juvenile Justice judges, as staff member, M. B. Santamour. A report by the well as legal rights groups, to become active on behalf committee, "Silent Minority," dealt with the quality of the rights of people with mental retardation. of life for citizens with mental retardation.

15 18 PCMR, 1973-1980 Georgia. Mrs. Carter had a special interest the broad areas of mental illness and mental retardation. "Century of Decision" In April, 1977, Mrs. Carter met at the DepartmF_Ttof On March 28, 1973, President Richard Nixon in- Health, Education and Welfare with members ofthe vited members of the President's Committeeon Men- President's Committee on Mental Retardation.Ex- tal Retardation to the Oval Office for the signing ofa pressing a high level of interest andsense of priority new Executive Order, 11776. The committee an- for programs of mental health and mental retarda- nounced plans to prepare a comprehensive long-range tion, she asked for a detailed reporton the practical report examining the history of mental retardation in effects of programs of prevention andtreatment. this century, and setting the future agenda for im- In November of 1977, the committee, throughits provement of services for persons with mental retar- Chairman and Secretary of HEW, Joseph A. Cart- dation. Dr. Henry Cobb, committee member,coor- fano, Jr., sent Mrs. Carter the report, "A Renewed dinated the preparation of this majorreport, assisted National Commitment for the Mentally Retarded," by all the members, divided into key subcommittees. containing recommendations directed tonumerous The report, "Mental Retardation: Century of Deci- Federal agencies. The report emphasized the needto sion," was presented to President Gerald Fordat a avoid unnecessary institutionalization of individuals meeting on October 11, 1974. President Ford issueda with mental retardation and highlightedways to statement at that time, reaffirming our nation'scom- strengthen mental retardation preventionprograms mitment ,o the field of mental retardation. through immunization against childhood diseases.In The report, "Century of Decision," consistedof a this report, the committee presentedrecommenda- series of five publications, including,"Report to the tions, as well as estimates of the budgetaryimpact of President," which projected in detailthe nation's the committee's recommendations. needs in mental retardation through theYear 2000, That same year, the White House Conferenceon and included recommendations on actions to be taken the Handicapped was conducted inWashington, to meet those needs. The other volumes provided D.C.Prior to this meeting, eachstate held con- background support for these recommendations.The ferences and selected delegates. Mental retardation publication, "Mental Retardation: The Known and was emphasized by members of PCMR, as wellas by the Unknown,"presented an account ofthe the ARC movement. PCMRwas represented through knowledge of mental retardationup to that time, theconference, anditsrecommendations were pointing up the important gaps in knowledgeof the highlighted in relation to community services,im- causes and treatments of mental retardation,as well provement of health care, strengthening of special as gaps in data relative to mentally retardedpersons education for students with mental retardation,and in the United States. Anotherdocument was a through vocational education and rehabilitation historical publication, "Mental Retardation:Past employment programs, which would increasethe and Present," prepared by Dr. Henry Cobb.Round- economic usefulness of most people with mental ing out the series, "Century ofDecision" was a retardation. The four-volume report of theWhite rebort, "Trends of the States in Provisionsof Mental- House Conference on theHandicapped was ly Retarded Persons," anda book, "Mental Retarda- presented to President Carter. tion and the Year 2000." Asa supplement to the series, PCMR also reviewed Federalprograms and Spotlight on Community Programs described the roles of approximately fifty-two of the Thecommittee'sactivitiesin1978included programs in the provision of services to persons with preparation of "Mental Retardation: TheLeading mental retardation and other disabilities.PCMR Edge, Sevice Programs That Work,"a report in fur- defined action to be taken by organizationsor agen- ther response to Rosalyn Carter'srequest of the cies with major resources to enablepersons with men- previous year. PCMR members, consultants,and tal retardation and their familiesto receive needed staff prepared a compilation of serviceprograms services. found to be working effectively. Illustrationsin the report portrayed the warm human qualities ofthe White House Activities people involved from all parts of the UnitedStates. President Jimmy Carter came into the WhiteHouse The report provided the country with examples of with national awareness of hispast actions in the field public education, community services, andemploy- of mental retardation while servingas Governor of ment programs which demonstrated the improvement

.19 that L possible in the quality of life for people who strategies were formulated at the conference, attend- are mentally retarded. ed by State mental retardation commissioners and As a supplement to the report's publication, the Developmental Disability Council members and staff. committee held nationwide press conferences, providing certificates of achievement to those State and Prevention community programs that received attention through In 1979, the committee extended its survey of "pro- the report. grams that work" to the area of prevention, and The interest of the committee in community ser- reconfirmed the high priority of effective prevention vices ranged from pre-school programs,special strategies. An international conference on prevention education, vocational training, and workshops, to was held with the consultative participation of the job placement. The committee conducted quarterly committee. It was emphasized that mental retardation meetings, and the agenda frequently had delibera- is America's number one health problem. The con- tions on issues and policies related to community and ference papers from participating countries indicated residential services. that each year, unless there is an intensified inter- In 1979, PCMR planning began under Herbert national prevention effort, an ever-increasing number Cohen, M.D., Vice Chairman, to examine the of babies who are mentally retarded would be born in delivery of community services. The University of all parts of the world. The risks are not only prevalent Wisconsin was the site for a national conference, in impoverished countries, but also in highly in- "Mental Retardation-1980Directions for Com- dustrialized countries. munity Services." Numerous short and long term The PCMR Subcommittee on Prevention em-

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17 barked on a study to determine the significant multi-factoral conditions of teenagepregnancy, nutri- features of strategies known to be successfulin tion, and lead poisoning. preventing mental retardation. With the assistanceof While there are numerous existing prevention State and local ARC groups, PCMR toured America resources,thecommitteeundertookeffortsto in search of health programs and medicalprojects im- heighten public awareness, and to emphasize the need plementing prevention strategies. The committeecon- for higher priorities and financingto carry out these clusions resulting from this intensive studywere effectivepreventioninitiatives.The committee presented to President Carter inan annual report, worked actively with the Department of Justice and "Prevention Strategies That Work". Thereport with the Department of Health and Human Services, highlighted the benefits of bio-medical prevention in efforts to strengthen the government's roleto through genetic counseling, prenatal and intensive enable babies with birth defects to live,to be treated care, and immunizations. It further emphasized the for their conditions, and to be assisted through importance of environmental controls in preventing medical treatment toward a healthier future. mental retardation, placing heavy emphasison the rWW,,..

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PCMR: Into the 1980's State systems to provide services for citizens with A New Committee mental retardation should be re-examined,in order to determine ways in which these systems could be im- A new committee was formed in the Spring of 1982, with the appointment of twenty-one proved. As a result, at its first meeting thenew com- new committee mitteeestablishedaSubcommittee on Systems members. Richard Schweiker, Secretary of the Depart- Simplification: a) to review Federal and Statelaws, ment of Health and Human Services, chaired thecom- regulations, and procedures; b) identify significant mittee, and Dr. Elsie Helsel was appointed Vire gaps, overlaps, or service delivery barriers; and c) Chairperson. In 1985, Dr. Albert L. Andersonsuc- make major policy recommendations forrevising ceeded Dr. Helsel. In 1983, Margaret Hecklersuc- those factors found to make service deliverymore ceeded Richard Schweiker as Secretary of the Depart- complex or costly than necessary. The committeealso ment, and as Chairperson of the PCMR. In 1985, Dr. sought to establish a more issue oriented focus incer- Otis Bowen succeeded Margaret Heckler. The nation's tain areas. commitment to mental retardation was reaffirmed in In March, 1983, Fred Krause, who hadserved as Ex- December 1982, when President Ronald Reagan issued ecutive Director of PCMR since 1972,became ill and Executive Order 12399, in .support of PCMR. was replaced on an acting basis by Acting Executive Although the committee membership changed, the Director, Dominic Mastrapasqua. LindaTarr, Ph.D., core subcommittee structure through which it had was appointed as Executive Director in February, operated in the past, (Full Citizenship, Prevention, 1984. In December, 1984, Jim F. Youngbecame Acting Family and Community Services, and Public Aware- Executive Director. Susan Gleeson, R.N., ness), was retained for continuity and to facilitate M.S.N., was appointed Executhe Director in July1985. maximum national leadership and impact. In addition to viewing these topicsas important, Full Citizenship the committee also believed that both Federal and This subcommittee became active in maintaininga

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41.-t-41411,(.. .6.4alt4rtA,ar.at.4:124- 042 leadership role in addressing thefights of citizens with ing the content of a supplementary notice in the mental retardation. With significant input from Federal Register modifying the requirements families, the ARC's, advocates, and othersources, regarding burden of proof; thissubcommittee helped-/develop background implementation of a forum on the Chaffee Bill, materials for a number offPCMR actions. Informa- SB 2053, "Community and Family Living 1 tion collection sessions of each of the initial material Amendments of 1983;" and provided needed data to the committee: formulation of recommendations for statutory and regulatory changes and private initiativesto development of policy statements for the Presi- meet housing needs of mentally retarded people. dent on the "Baby Doe" case; development of a policy statement on the Educa- In 1983, the committee focused considerable attention for All Handicapped Children's Act, PL tion on economic issues, with special emphasis \ on 94-142, and on Section 504 of the Rehabilitation employment. Toward this end, a forum, "Community Act, that influenced the White House not to sup- Forum on Employment and Mentally Retarded Per- port proposed changes weakening the rights ofsons," was held in Tucson, Arizona in October 1983. handicapped persons; This forum, spearheaded by PCMR member Vicki consultations with the Department of Justice on Click, was to serve as a model for other communities proposed_regulations implementing Section 504 in improving their own employment opportunities for for Federally conducted programs, and influenc- persons with mental retardation. In support of this con-

20 state, and the Trust Territories, Guam, and Puerto Rico. Models of prevention programs were examined at State and community levels. The U.S. Surgeon General actively participated in this conference, emphasizing the importance of healthy mothers and healthy babies, and acknowledging PCMR's con- tinuous support in alerting the medical community to prevention strategies that are known to be successful in reducing the incidence of mental retardation and ameliorating its effects. In November 1983, the committee sponsored a conference, "Assessment of the National Efforts to Combat MentalRetardationfrom Bio-Medical Causes," in Washington, D.C. This biomedical assessment was completed in May of 1984 by the forum, "National Open Forum on the Prevention of Mental Retardationfrom Environmentaland Psychosocial Causes," held in Boca Raton, Florida. Recognizing the important role for states in the area of prevention, the committee has undertaken a strategy focusing specifically on state issues. Towards this end, PCMR is developing a Model State Prevention Plan addressing causes of mental retardation. This plan will be disseminated to each state and territory as a technical assistance resource, to be used in developing and implementing comprehensive community programming and services to prevent this handicapping condition. Finally, PCMR has sponsored the development of a series of publications on various aspects of prevention, including:

O "Assessment of the National Effort to Combat Mental RetardationTechnical Proceedings" cept, PCMR plans to publish a "how-to" resource O "The Role of Institutions of Higher Learning in document for community leaders that details steps to Prevention of Mental Retardation" (a mono- be followed in conducting such forums. The guide pro- graph) vides a generic model forum, as well as a case study O "Will You Help Your Baby's Brain Develop?" of the Tucson experience. (a brochure) To underscore the importance of employment, the O "National Prevention Showcase and Forum 1983 annual report to the President, "The Mentally Technical Proceedings" Retarded Worker: An Economic Discovery," focused on employment of mentally retarded persons. Other Topics of Continued Interest Prevention PCMR remains active in addressing issues of men- Prevention has continued to be a priority agenda tal retardation as they relate to the criminal justice item for PCMR, and this committee has continued a system. A report, "Mental Retardation and the Law," series- of major conferences on various aspects of has been prepared. A PCMR staff member has trained prevention. In September 1982, PCMR sponsored a prison officials and staff regarding programs for of- forum,"NationalPrevention Showcase and fenders with mental retardation. Forum," in Atlanta, in cooperation with the Atlanta PCMR works with other agencies and programs of Association for Retarded Citizens. This national systems simplification have been established with the

- forum brought together representation from each mutualinterest.Liaisonrelationshipsregarding

21 24 Ofehato( getrot), urliedt, dfferwmtruoi et/pu ax.ust444 #72, all-a#7.7A1,4;t1 "nail Cetien-Ae

Departments of. Housing and UrbanDevelopment,its advocacy and advisoryrole as intermediary bet- Justice, and Education. The interagencycommittee,ween the Federal government,states, localities, and Special Needs of Mentally RetardedOffenders in thefamilies across the nation, inproviding information, Criminal Justice System, has beenestablished byidentifying needs, and makingcritical recommenda- PCMR, with the Department of Justice andthe Ad-tions that providea powerful influence in thecourse ministration on Developmental Disabilities(ADD).of improvement of lifeforretardedpeople PCMR is represented on ADD'sEmployment In-everywhere. In addition, PCMRhas successfully itiative and on the Department ofEducation's Na-achieved, through its quarterlymeetings and the work tional Institute on HandicappedResearch. The Com-of its subcommittees,a highly significant impact on mittee is also working with the NationalInstitute ofnational policies. It has producedand assured the Mental Health on a dual diagnosisconference, i.e.,availability of many/highly utilizedreports. The in- mental retardation and mental illness. fluence of the committees hasbeen internationalas PCMR has continued its major role ininternationalwell as national inscope, involving collaboration with activities. Meetings have been held withUnited Statesthe International League ofSocieties for Mentally and United Nations representativesfor the Interna-Handicapped Persons, and theInternational Society tional Decade of the Disabled andthe InternationalforScientificStudy ofMental Deficiency,in Year on Youth. Liaison has beenestablished withnumerous symposia and internationalstudies, and in several International organizations,including theconsultation with governments ofmany countries. Organization of American States, WorldBank, The President's Committeeon Mental Retarda- United States Information Agency, andthe Pantion, with the active leadershipof its members and American Health Organization. staff, has historicallyproven itself to be a highly ef- In May of 1984, the PCMR inauguratedits first an-fective voice in the field ofmental retardation. And nual scholarship award. Thisprogram received na-yet PCMR is only on the threshold;its impressive ac- tional attention, and is wellon its way in attractingcomplishments can be consideredonly the prologue bright students into careers in thevarious fields ofto the exciting prospects in theyears ahead. mental retardation. (The best summary of PCMR'saccomplishments is one that cites the major goals that PCMR Conclusion has enun- ciated, and then reviews the The President's Committee progress made in address- on Mental Retardationing those goals. Thissummary is provided in Appen- can take pride in the list of its accomplishmentsand indix C.)

25 Appendix A President's Panel on Mental Retardation

Members Leonard W. Mayo, S. ScD., Chairman George Tarjan, M.D., Vice-Chairman

David L. Bazelon, B.S.L.Lloyd M. Dunn, Ph.D Joshua Lederberg, Ph.D Wendell M. Stanley, Elmer H. Behrmann, Louis M. Hellman, M.D.Reginald S. Lourie, M.D. Ph.D Ph.D. (Msgr.) Herman E. Hilleboe, Oliver H. Lowry, Ph.D., Harold W. Stevenson, Elizabeth M. Boggs, M.D. M.D. Ph.D. Ph.D. Nicholas Hobbs, Ph.D Horace W. Magoun, W. Wallace Tudor Robert E. Cooke, M.D. William P. Herder, Ph.D. Henry Viscardi, Jr., Leonard S. Cottrell, Jr. Ph.D., M.D. Darrel J. Mase, Ph.D. LL.D. Ph.D. Seymour R. Kety, M.D. F. Ray Power Ernest P. Willenberg, Edward Davens, M.D. Irene A. Wright Anne M. Ritter, Ph.D. Ed.D.

Consultant to the Panel: Mrs. Sargent Shriver

Appendix B Executive Directors: List of Vice Chairpersons and David Ray 1966-1970 Executive Directors Joseph Douglass, Ph.D. 1970-1972 Robert Aldrich, M.D. 1966-1970 -Fred J. Krause 1972-1983 Clair Burgener 1970-1972 Dominic Mastrapasqua, Ph.D.1983-1984 Lorraine Beebe 1972-1976 (Acting Executive Director) Henry Cobb, Ph.D. 1976-1979 Linda L. Tarr, Ph.D. 1984-1984 Herbert Cohen, M.D. 1979-1981 Jim F. Young 1984-1985 Elsie Helsel, Ph.D. 1982-1984 (Acting Executive Director) Albert Anderson, D.D.S. 1985-Present Susan Gleeson, R.N., M.S.N. 1985-Present

ur:" 26 Executive Order 11280 anniversary of the date of this Order, the terms of

ESTABLISHING THE PRESIDENT'S 4, seven shall expire on the second anniversary, and the COMMITTEE ON MENTAL RETARDATION terms of seven shall expire on the third anniversary. (B) The term of each succeeding appointment shall expire on the third anniversary of the expiration of WHEREAS the Maternal and Child Healthand the predecessor term, except that an appointment Mental Retardation Planning Amendmentsof 1963 made to fill a vacancy occurring before the expiration and the Mental Retardation Facilities andCommuni- of a term shall be made for the balance of theunex- ty Mental Health Centers Construction Act of 1963 pired term. (77 Stat. 273; 282) have establisheda firm statutory basis for cambating mental retardation; and SEC. 3.Functions of the Committee. (a) The WHEREAS the mental retardation activities of Committee shall provide such advice and assistance in Federal, State and local government agenciesand the area of mental retardation as the Presidentmay foundations and other private organizationsare ex- from time to time request, including assistancewith panding rapidly and require careful review in order respect to: that maximum benefits may be achieved; and (1)evaluation of the adequacy of the national ef- WHEREAS there is a continuing need to mobilize fort to combat mental retardation; the support of the general public and of specialized (2)coordination of activities of Federal agencies professional groups for mental retardation activities; in the mental retardation field; and (3)provision of adequate liaison between such WHEREAS re-evaluation of existingprograms to Federal activities and related activities of State and determine their aClequacy and considerationof pro- local governments, foundations, and other private posalsfor new mental retardationactivitiesis organizations; and necessary: (4)development of such information, designed NOW, THEREFORE-,- by virtue of the authority for dissemination to the general public,as will tend to vested in me as President of the United States,it is reduce the incidence of mental retardation and ordered as follows: ameliorate its effects. (b)The Committee shall mobilize support for SECTInN 1.Committee established. There is mental retardation activ- Wes by Meeting with,and hereby established the President's Committeeon providing information for, appropriate professional Mental Retardation (hereinafter referredto as the organizations and groups broadly representative of Committee). the general public. (c)The Committee shall make such reportsor SEC. 2.Composition of Committee. The Com- recommendations to the President concerning mental mittee shall be composed of the followingmembers: retardation as he may require or the Committeemay (1)The Secretary of Health, Education, and deem appropriate. Such reports shall be madeat least Welfare, who shall be the Chairman of theCom- once annually. mittee. (2)The Secretary of Labor. SEC. 4.Cooperation with the Committee. All (3)The Director of the Office of Economic Op- who may be in a position to do soare requested to portunity. furnish the Committee information pertinentto its (4)Not more than twenty-one other members work and otherwise to facilitate the work of the Com- who shall be appointed by the President frompublic mittee. or private life and may include specialists in medicine and other healing arts, human development, special SEC. 5.Administrative arrangements. (a) Asmay education and employment problems, andmembers benecessary,eachFederalagency whichis of foundations and other private organizationsactive represented on the Committee shall furnish assistance in the mental reta: -!on field. Exceptas the Presi- to the Committee in accordance with the provisions dent may from tim . ',TIE' otherwise direct, ap- of Section 214 of the Act of May 3, 1945(59 Stat. pomtees under this shall have terms as 134;31 U.S.C. 691), or as otherwise permitted by law. follows: (A) Of the membersfirstappointed The Committee may have an ExecutiveDirector who hereunder, the terms of seven shall expireon the first shall be designated and compensated inconsonance

24 2 7 with law. The Department of Health, Education, and SEC. 6.Construction.Nothing in this Order shall Welfare is hereby designated as the agency which be construed as subjecting any Federal agency, or any principallyshallprovidetheCommitteewith function vested by law in, or assigned pursuant to law necessary administrative services and facilities. to, any Federal agency, to the authority of the Com- (b)Each member of the Committee, except any mittee or as abrogating or restricting any such func- member who then receives other compensation from tion in any manner. the United States, shall receive compensation for each LYNDON B. JOHNSON day he or she is engaged upon the work of the Com- THE WHITE HOUSE, mittee, as authorized by law (5 U.S.C. 55a), and shall May 11, 1966. also be entitled to receive travel expenses, including (F.R. Doc. 66-5456; Filed, May 16, 1966; 11:04 a.m.) per diem in lieu of subsistence, as authorized by law (5 U.S.C..73b-2) for persons in the Government ser- Source: FEDERAL REGISTER, Vol. 31, No. 95Tuesday, vice employed intermittently. May 17, 1966 pages 7167 and 7168

25 Appendix C

President's Committeeon Mental Relevant Accomplishments RetardationImpact St atementon Goals and Accomplishments O CoordinationwithFederal andnational organizations supporting deinstitutionalization. O A significant contribution toward planning for Numerous goals have been established throughout the reduction of the institutionalized popula- the history of the President's Committeeon Mental tion made by many of PCMR's publications, Retardation. Listed below are the major goals,as well i.e., "Changing Patterns of Residential Ser- as the relevant accomplishments made by PCMR in vices." seeking to meet these objectives. PCMR has lent its O Development of alternative services and smaller endorsement or support to many other Federal community residential homes. policies that have aided in theprogress of service for O Reductioninthepublicinstitutionalized citizens who are mentally retarded and their families. population.

GOAL: To reduce by half theoccurrence of mental GOAL: The attainment of full citizenshipstatus, in retardation in the United States before the law and in fact, for all individuals withmen- end of this century tally retarded individuals in the United States, exercised to the greatest degree possi- Relevant Accomplishments ble under the conditions of disability

0 Support of a national education effortsup- Relevant Accomplishments porting planned pregnancies. 0 Efforts towards genetic diagnosis and counsel- O Establishment of a special litigation branch of ing services. the Office of Civil Rights, Department of O Sponsoringof numerousconferenceson Justice. prevention with medical organizations and O Encouragement of the rights of education, State officials. rehabilitation and treatment forpersons with O Establishment of a national forumon preven- mental retardation. tion with representatives from each State. O Establishment of a nationwide system of public 0 Sponsoring State prevention committees in the legal advocacy services specializing in thepro- field of mental retardation. tection of rights. 0 Reduction in Downs Syndrome and metabolic O Sponsorship of important conferences andthe disorders. publication of major articles and bookson the O Lead poisoning testing mandated instates. legal rights for citizens with mental retardation. 0 Sponsorship of universal measles immuniza- O Establishment of the Committee for the Dis- tion. abled within the American Bar Association, and O Conductedaconference,"Multi-Cultural other legal groups. Aspects of Prevention." O Establishment of a case law review of thelegal status of citizens with mental retardation. GOAL: To enable one-third of themore than two O The support of numerous State and regional hundred thousand persons in public institu- symposia on legal rights of people with mental tions to return to useful lives in thecom- retardation. munity GOAL: Adequate and humane service Systems forall retarded persons 29 Relevant Accomplishments study their health and educational systems. 0 Aiding Third World countries in their develop- O Encouragement of the development of com- ment of services for persons with mental retar- munity service systems within states. dation through Peace Corps operations. O Emphasizing coordination, simplified and uni- fied procedures of interdepartmental policies at GOAL: To achieve a firm and deep public accep- the Federal, State and local levels. tance of mentallyretardedpersonsas O Making services more equitable, and encourag- members in common of the social communi- ing public and private agencies to provide quality and as citizens in their own right ty services. O Increasing the opportunity for mentally retarded persons to live in local community settings of their own choice. O Establishment of standards of quality and ac- countability acceptable to the individuals with mental retardation. O Production of data showing increased number of community agencies servicing citizens with mental retardation.

GOAL: Attainment of a high and stable level of in- ternationalrelationsinthecooperative preventing and ameliorating of mental retardation

Relevant Accomplishments

O Maintenance of United States government's participation in international affairs relating to mental retardation. O Maintaining a relationship with the U.S. State Department andwiththeInter-American Children's Institute of the Organization of American States. O Cooperativeactivity with the International Societies for the Mentally Handicapped and the International Association for the Scientific Study of Mental Deficiency. O Conducted conferences in Hawaii with Pacific and Southwest Asian countries, and in Puerto Rico and Panama with Latin American coun tries. O Representatives of PCMR attended many Euro- 512444-a.e. OpieSMØ(r,4. o,4 pean and Scandinavian conferences. nAssa` .tewinvea, O Intensive work with developing countries to 1.41.01-44 -.1.z - -,--....._____.----_----' ..e.___-,_7____Ir.: ','".:"-'114,,,, ,_, . - ,-;- , ,,, 1

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Relevant Accomplishments Relevant Accomplishments

O Consistent concern by PCMR with public at- O Coordinated and comprehensive planning of titudes toward persons with mental retardation, Federal, State and local efforts in the area of and attempts to advance the value of every per- mental retardation. son with mental retardation to demonstrate O Continuation of an interdepartmental planning their productivity and accomplishments. system On mental retardation in the Federal O The -publication of numerous reports which governments. Affiliation of PCMR with each strive toward bringing media attention to im- department's active participation in inter- and plementation- of value-oriented approaches of intra-governmental programs. human relationships. O Participation in various planning effortsto O Education of children, and greater stress on create a national information system on mental community living and job placement, via films retardation, and to gather research and data and meetings. that would assist in policy development. O Inclusion of courses on mental retardation and O Monitoring the funding processes for people related disabilities in the curricula of students in with mental retardation. medicine, law, education, religion, psychology, O Establishment of Federal joint agreementsfor and numerous othercriticalprofessional bilateral and multilateral policy and regula- disciplines. tions. O Reviewing problems in Social Securityand GOAL: Equitable, coordinated, efficient, and effec- Medicaid, and sponsoring meetingsor forums , tive use of public resources in all mental to bring a resolution to critical issues. retardation programs O Enactment of administrative proceduresas a result' of PCMR's consistent and effectiverela- tionship with various levels of governmental operations in the field of mental retardation.

1 PCMR Members and Years Served

Robert A. Aldrich, M.D., 1966-1971 Aris A. Ma llas, Jr., 1971-1974 Joseph A. Beirne, 1966-1968 Kenneth S. Robinson, 1971-1974 G. Barry Bingham, 1966-1969 Will Beth Stephens, Ph.D., 1971-1977 Horace Busby, 1966-1971 Margaret B. Ul le, 1971-1977 Robert E. Cooke, M.D., 1966-1969 Robert A. Collier, 1971-1974 John T. Dailey, 1966one year only Richard J. Elkus, 1972-1975 Patrick J. Doyle, M.D., 1966-1969 Ralph J. Ferrara, 1972-1975 Muriel B. Humphrey, 1966-1969 Melvin Heckt, 1972-1975 George Jones, 1966-1969 Miriam G. Wilson, M.D., 1972-1975 Mathilde Krim, 1966-1969 Robert B. Kugel, M.D., 1966-1969 Michael R. Gardner, 1973-1978 Leonard W. Mayo, 1966-1969 Thomas J. Meskill, 1973-1975 Lloyd E. Radar, 1966-1976 Henry V. Cobb, Ph.D., 1973-1979 Theodore S. Repplier, 1966one year only Bernard Rosenberg, 1966-1970 Geraldine M. Clark, 1974-1977 Eunice Kennedy Shriver, 1966-1968-1977-1980 Bill J. Doggett, M. Ed., 1974-1977 George Tarjan, M.D., 1966-1971 Phillip U. Martinez, M.D., 1974-1977 Thomas A. Tucker, 1966-1971 Henry Viscardi, Jr., 1966-1968 James D. Clements, M.D., 1975-1978 Raymond W. Vowell, 1966-1970 Jeanne C. Collier, 1975-1978 Robert H. O'Brien, 1966one year only Arnold G. Gangnes, 1975-1978 John P. Greene, 1975-1978 Leo F. Cain, Ph.D., 1967-1970 Morley A. Hudson, 1975-1978 Bess H. Jones, 1967-1970 Andrew L. Lewis, 1975-1976 Jeannette Rockefeller, 1967-1973 Cherrie Sevick, 1975-1978 Elizabeth M. Boggs, 1975-1976 Victor Bussie, 1968-1970 Victor R. Fuchs, Ph.D., 1968-1971 David M. Barrett, 1976-1979 Kenneth J. Ryan, M.D., 1963-1971 Jean K. Elder, Ph.D., 1976-1979 Frank J. Menolascino, M.D., 176-1979 Marianna Beach, 1969-1975 Dolores T. Nor ley, 1976-1979 William H. Borders, Jr., M.D., 1969-1972 Margaret V. Tedone, 1976-1979 Susann R. Ora, 1969-1972 Louisc R. Ravenel, 1969-1975 Robert G. Jordan, M.D., 1977-1981 David K. Udall, 1969-1971 Anderson W. Pollard, 1977-1980 Ludwig Rothbein, 1977-1980 N. Lorraine Beebe, 1970-1979 Florence K. Simons, 1977-1980 Clair W. Burgener, 1970-1973 Samuel Whitman, 1977-1980 David H. Echols, 1970-1973 Donald LeP Fox, 1970-1972 Andrew I.T. Chang, 1978-1981 Lawrence A. Kane, Jr., 1970-1976 Herbert J. Cohen, M.D., 1978-1981 William B. Robertson, 1970-1976 Ruth W. Diggs, Ed.D., 1978-1981 Luis D. Rovira, 1970one year only Shirley C. Miller, 1978-1981 Frank R. DeLuca, 1971-1974 Ana Navarro, M.D., 1978-1981 Cecil B. Johnson, M.D., 1971-1977 Edward J. Quilligan, M.D., 1978-1981 James N. Juliana, 1971-1977 Aileen A. Weiss, 1978-1981 32 Harvey A. Abrams, 1979-1981 Madeline B. Harwood, 1982- Janet Allen-Spilka, 1979-1981 Elsie D. Helsel, Ph.D., 1982- G. Thomas Bellamy, 1979-1981 Lawrence A. Kane, Jr., 1982-1985 Marlene F. Kopman, 1979-1981 Richard J. Kogan, 1982- Guy M. McKhann, M.D., 1979-1981 James L. Kuebelbeck, 1982-1985 Alba A. Ortiz, Ph.D., 1979-1981 D. Beth Macy, 1982- Edward F. Zig ler, Ph.D., 1979-1981 Timothy J. O'Brien, 1982-1985 Raymond M. Peterson, M.D., 1982-1984 A. Omie Brown, 1980-1981 Frederick J. Rose, 1982 Joseph A. Buonomo, 1980-1981 Anne C. Seggerman, 1982- Leonard G. Espinosa, 1980-1981 Marguerite T. Shine, 1982- Lilia A. Evangelista, M.D., 1980-1981 Lila Thompson, 1982-1985 Leida Herrell, Ph.D., 1980-1981 Virginia J. Thornburgh, 1982- William L. McGowan, 1980-1981 Ruth A. Warson, R.N., 1982- Velaida Smith Walker, 1980-1981 Albert L. Anderson, D.D.S., 1984- Kathleen M. Barrett, 1982-1984 Lois Eargle, 1985- Richard E. Blanton, Ph.D., 1982-1985 Matthew Guglielmo, 1985- Lee A. Christoferson, M.D., 1982- William Hummer, M.D., 1985- Dorothy Corbin Clark, R.N., 1982- Roger Stanley Johnson, M.D., 1985- Vicki M. Click, 1982-1984 James Bopp, Jr., 1984- Thomas J. Farrell, 1982- Jerry P. Larson, M.A. R.S.W., 1984- Vincent C. Gray, 1982- U. Yun Ryo, M.D., Ph.D., 1985-

Annual Reports

MR 67:The committee's first report. Outlinesten areas in which citizen and agency action can produce progress in combating mental retardation.

MR 68: The Edge of Change.The committee's second report. Covers grassroots developmentsin mental retardation programs. Surveys needsand makes recommendations on residential services,manpower development, and poverty-mental retardationlinks.

MR 69: Toward ProgressThe Story of ADecade. ,Surveys major mental retardation research andser- vice developments of the 1960's. Makes recommendations for programs and approaches to be developed during the 1970's.

MR 70: The Decisive Decade.Reports on residential services, malnutrition, research, education,employment, State services, and additional actionareas in mental retardation that pointup the '70s as decisive years.

33 MR 71: Entering the Era of Human Ecology.Fo- highlights the fact that of the more than two hundred cuses on the environmental and genetic causes of known causes of mental retardationincluding in- mental retardation, with additional sections on in- juries at birth, toxic conditions, inherited genetic fac- telligence, genetic damage, the law, Indian health and tors, measles, x-rays, metabolic disorders, Rh blood education, lead poisoning, Pacific Forum on Mental disease, etc.more than 50 percent are preventable. Retardation, economics, and recreation. The report cites as even more provocative, committee findings that a !,ip ficant!,, larger percentage of men- MR 72: Islands of Excellence.Annual Report of the tal retardation,fesulting from environmental in- \\President'sCommittee on MentalRetardation. fluences including sociocultural disadvantages, are Describes a number of national, State, regional, and preventable. It presents committee conclusions from JOcal programs that offer promising approaches to an intensive study of the distinguishing features of prevention and alleviation of mental retardation. strategies known to be successful in preventing mental retardation; it describes "representative models" of MR 73: The Goal is Freedom. PCMR annual programs and projects implementing such strategies. Report based on the concept of freeing retarded persons from various handicaps through a system of set- MR 80:The Mentally RetardedWorker: An ting goals to be achieved. The publication also deals Economic Discovery.The goal of this year's report withpreventionofretardationandcorrective to the President is to increase the awareness of the measures. private sector of the hundreds of thousands of people with mental retardation who are employable, but are MR 74: A Friend in Washington.Eighth annual unemployed because of misconceptions about their Renort of PCMR, reviewing one year in the life of the abilities to meet and maintain employment standards. committee, as it works to prevent and ameliorate These misconceptions held by some employers, place- mental retardation. ment officers, trainers, and parents may lead to a life of under-achievement, idleness and public dependen- MR 76: Mental Retardation Past and Present. cy. Yet the overwhelming evidence shows that mental- Reviews the historical shifts in our treatment of ly retarded persons can be productive members of the retarded persons, and assesses where we stand today. nation's workforce, and quite often are considered (There were three other reports in this series, "Cen- preferred workers. tury of Decision, The Known and the Unknown, and Mental Retardation: Trends in State Services.") Mental Retardation: Plans for the Future:The fif- teenth annual report to the President, describes the MR 77: A Renewed National Commitment for the number of ways in which PCMR, historically, has Mentally Retarded.Publication presented to Mrs. engaged in collaborative activities with other Federal Rosalynn Carter, at her request, with focus on pro- agencies, national constituency organizations, private posed national objectives in the total context of treat- sector groups and individuals, to fulfill its executive ment, prevention, national objectives and budget mandate. criteria for the field of mental retardation.

MR 78: The Leading EdgeService Programs That Work.This PCMR annual report focuses on a number of successful service programs throughout the United States that are currently directly addressing the accomplishments and potential of citizens with mental retardation. The programs address such topics as: the family, public school education, community residences, self assertion, the offender with mental retardation, mental health, and prevention.

MR 79: Prevention Strategies That Work.This document, constituting the twelfth annual report of the President's Committee on Mental Retardation, List of Publications

The Mentally Retarded in Model Cities.This report In Service to the Mentally Retarded. A directory of provides the long-awaited opening thatcan change national voluntary agencies that perform services for not just the neighborhoods, but also the lives of those persons with mental retardation. in the blighted areas where seventy-fivepercent of persons with mental retardation live. Mental Retardation in the Caribbean.Proceedings of a September 1970 conference sponsored by To Your Future With Love.For young people seek- pqrAR. ing meaningful volunteer andcareer opportunities. Many experiences are told by volunteers in theirown PCMR Is For People.Describes the composition, words. actioni, and goals of the President'sCommittee on Mental Retardation, with suggestionson citizen in- Hello World!Popularly written general informa- volvement in the field. tion booklet, with individuals whoare mentally retarded illustrating levels of retardation, itscauses, PCMR Message.Current news and features related and means of prevention. to the committee's activities and other pertinentmen- tal retardation items. These, Too, A2:,st Be Equal.Describes America's need for habilltation and employment of the mentally Delivery of Services to Mentally Retarded Children retarded, and lists proposals for action. and Adults in Five States. A study and analysis of stage systems for delivering services. Presents thepro- Residential Services for the Mentally Retarded:An blems and interprets the needs of State agencies and Action Policy Proposal: A proposedstatement on departments in providing diversified and integrated residentialservicesfor public and professional services. revirx A Very Special Child.Report from a conference on The Mentally Retwded: Their New Hope.This placement of children in special educationprograms booklet is part of a national campaign to inform the for persons with mental retardation. Re-examines public about the scope of mental retardation,and present system of intelligence testing and classifica- what must be done to assurepersons with mental tion, from the psychological, social, and legal angles. retardation their rightful place inour democratic society. Placement of Children in Special Classes for the Retarded.Background Position Papers.Papers The Six-Hour Retarded Child.Report on a con- presented at Conference on Placement of Children in ference dealing with educational problems of inner- SpecialEducation ProgramsfortheMentally city children. Includes recommendations forcon- Retarded. structive changes in the educationsystem. Citizen Advocacy. An exploration of theways in Background Papers.Presentationsfrom Con- which citizens can represent the interests of the han- ference on Problems of Education of Children inthe dicapped. Inner City. The First Pacific Forum on Mental Retardation. A Manpower and Mental RetardationAn Exploration report on a conference of the Pacific nationson their of the Issues.Proceedings of a joint United States- mental retardation problems and methodson dealing Canada Conference, 1970. with them. Attitudes Toward the Retarded. Asummary of studies evaluating attitudes toward persons withmen- tal retardation.

Day Care: Serving Children With Special Needs. Guidelines to integrated day care programs serving children with spe ial needs.

Action for the Retarded.Recommendations to the President on more effective Federal programs for the mentally retarded.

The Naive Offender.Findings from a conference on dealing with persons who are retarded who get into difficulties with the law.

Activity Centers for Retarded Adults. A study of programs where adults who are mentally retarded participate in organized, personnally meaningfulac- tivities which help them toward an optimal adjust- ment to family and community.

Screening and Assessment of Young Children at Developmental Risk. A monograph on methods of screening and assessing the needs of children at risk of beingdevelopmentallydelayed byintellectual, physical, or emotional problems.

Background Papers.Presentations from the Na- VI tional Conference on Screening and Assessment of Young Children at Developmental Risk.

Federal Programs for the Retarded. A reporton a ; review and evaluation by departments and agencies of Federal programs for persons who are retarded. Transportation and the Mentally Retarded. A report on a study of special transportation needs and problems of citizens who are mentally retarded.

Changing Patterns in Residential Services for the Mentally Retarded. A 435 page report by the Presi- , dent's Committee on Mental Retardation on residential facilities for citizens who are mentally retarded.

33 Originally published in 1969, it includes chapters by pursuit of happiness of citizens who are retarded, and fourteen authors discussing models in the United what can be done legally to protect their fundamental States and abroad,stressingthenormalization rights. principle. PI-MR.Directed at persons doing public informa- International Symposium on Volunteers.Report on tion work in the field of mental retardation. Reports a symposium co-sponsored by PCMR and NARC at on media opportunities, activities of PIO's, etc. Philadelphia in 1971. Focuses on the role of the Issued at irregular intervals. volunteer in terms of direct service and community leadership, and the motivation of governmentsto ac- Information Office News Clipping Service.Topical cept the responsibility to enable the population who clippings from the mental retardation field nation- are retarded to live within the community. wide.

Malnutrition, Learning, and Intelligence. Apaper Mental Retardation: Century of Decision. Areport presented by the late Dr. Herbert G. Birch,a leading to the President making recommendations for the researcher in the field, to PCMR Leadership In- next twenty-five years on prevention, humaneser- stitute. It concludes from a survey of the scientific vices, and full citizenship for persons whoare evidempe that malnutrition may contributeto a retarded. suboptin'tal level ofinettlectual functioning, but that improvements M al.facets of e ai -..1Asided 1W3atal Retardation: The Known and the Unknown. achieve increased intellectual growth of, Jisadvan- This publication compiles for the first time existing taged children. statistical and factual information about the extent, Mentally Retarded Citizens and the Law Enforcement the causes, and the treatment program for citizens Process.Proceedings of a conference held in St. who are mentally retarded. Louis, Missouri, October 29-November 1, 1972.Sub- jects covered included correctional administration, Mental Retardation: Trends in State Services.Iden- recognition by police, and sentencing. tifies trends in State and local services forpersons who are mentally retarded, and the impact of Federal Experimental Studies of Memory in the Mentally assistance. Based on a telephone survey. Retarded. A paper presented ata PCMR Leader- ship Training Institute, by John M. Belmont,Ph.D. New Environments for Retarded People.An album It presents results of research into the strategiesof of facility designs from many countries. learning used by both subjects whoare retarded and normal, focusing on both organization andretrieval People Live in Houses.Described representative of information. group homes, foster homes, and other types of residential settings for children and adults. Mental Retardation and the Law. A quarterlycom- pilation of legal actions affecting the rightsof persons What Are We Waiting For? Report of a conference who are retarded. Reports new cases andstatus of ac- on Early Intervention with High-Risk Infants and tions previously brought. Young Children, focusing on the needs for mother/ child/professional interaction. New Neighbors.Fourteencontributorsdiscuss philosophical and practical aspects of the citizenwho International Directory of Mental Retardation Re- is retarded and his need fora home in the community. sources.Resources in the field of mental retardation are briefly listed for the United States and many other Residential Programming.Position statement on countries under governmental, voluntary organiza- the contemporary issues affecting residential services tions, research, publications, history of services, and for persons who are mentally retarded bythe Na- information for visitors. tional Association of Superintendentsof Public Residential Facilities for the Mentally Retarded. P.C.M.R. Newsbreak.Published quarterly. Pro- vides current information on new innovativepro- Silent Minority.Deals with life, liberty, and the grams. Provides source for additional information.

3 7 The Problem of Mental Retardation.This booklet From Rights to Realities: Advocacy By and For is designed as a basic introduction to mental retarda- Retarded People in the 1980's.This 16 page pamph- tion, and an overview of the problems related to it. let traces the legal rights movement for retarded per- Mental retardation is defined, ways in which the pa- sons through the 1970's and provides the reader with tient can be helped are given, and the causes and the a discussion of resources for legal advocacy in the future of the problem are discussed. 1980's. Written in easy style, it discusses legislative successes and legislative landmarks in the quest by Retardation, Corrections, and Retarded Offenders: A citizens with mental retardation fol equal treatment. Bibliography of Relevant Research, Programs, and It is an excellent resource for lay people, as well as Literature, with Annotations. A companion piece professionals, in all disciplines associated with the to a "prescriptive package," The Retarded Offender field of mental retardation. and Corrections, designed to bridge the gap between the field of retardation and correction, and provide Retardation and CriminalJustice. A Training directions to individuals who are developing pro- Manual for Criminal Justice Personnel.Published grams for retarded offenders. The five sections of the in collaboration with the New Jersey Association for report include: Introduction to the Field of Retarda- Retarded Citizens. This fifty page booklet is written tion, Introduction to the Field of Corrections, Major specifically for criminal justice personnel as an in- ResearchProjects/TreatmentModalities, Con- troductory lesson into the nature of mental retarda- ferences and concludes with general literature. tion. It includes detailed curriculum on the development of habilitative correctional programs for of- International Summit on Prevention of Mental Retar- fenders who are retarded. Because of its discussion of dation From Biomedical Causes. A complete 198 the problems retarded people encounter inthe page account of the proceedings of an international juvenile and criminal justice systems, retardation pro- summit sponsored by the President's Committee on fessionals will also find this manual of value. Mental Retardation (PCMR), the American Associa- tion on Mental Deficiency (AAMD), the Canadian The Role of Institutions of Higher Learning in Pre- Association for the Mentally Retardation (CAMR), venting or Minimizing Mental Retardation.This and the National Association for Retarded Citizens sixty-nine page monograph is intended to increase (NARC), in cooperation with the Johnson Founda- professional and community awareness regarding tion. This summit convened at "Wingspread" in specific preventionoriented towards functions of Racine, Wisconsin, with the purpose of providing a colleges and universities. It represents a continuing forum which would facilitate the abilities of par- positive effort to develop and disseminate informa- ticipants to think, plan, collaborate, and develop tion that will reduce the incidence and prevalence of short and long range strategies to prevent mental mental retardation, especially as it relates to en- retardation. vironmental and sociocultural influences.

Proceedings of A National Multicultural Seminar on Mental Retardation Among Minority Disadvantaged FILMS Populations. A complete 116 page record of a national seminar sponsored by the President's Commit- A Little Slow.Dramatizes through the experience tee on Mental Retardation in cooperation with Nor- of Billy and Carol the problems persons with retarda- folk State College/Department of Special Education. tion face in obtaining their legal rights. The purposes of this "working conference" were 1) to address major issues related to impaired and It's Their World Too.Documents the experiences retarded\ human development associated with en- of three people who are retarded. The film offers vironmental conditions of racial and ethnic discrim- first-hand accounts from a young woman employed ination, poverty, deprivation, family disruption, and by a large corporation and a middle-aged man living consequent disadvantage; and 2) to develop recom- in a group home. The parents of a young child who is mendations and strategies for affirmative action retarded discuss the child's treatment, and their reac- toward reduction of the prevalence of mental retardation to professional services. tion associated with these conditions.

1986 - 491-276 - 114/53278