ECOUMENT RESUME

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TITLE The President's Ccmmittee on Mental Retardaticn: theDecisive Decade.

INSTITUTION President's Committee cn Mental Retardation,Washington, D.C.

PUB DATE 71NOTE 53p.

EDFS PRICE FIDES Pice ME-50.65 hC-$3.29DESCRIPTORS *Annual Reports, *Exceptional Child Education,

*Mentally Handicapped, *Mental Eetardation, ResearchNeeds, Services

ILENTHIERS *Presidents Ccmaittee cn Mental Retardation

ABSTRACTThe fourth annual report of the President's

Committee on Mental Retardaticn ccazents upcn .areas of significantprcgress ana ct critical need in mental retardation. The problem cfmalnutrition, improvements in residential care, and advancements indiagnosis, trEatment, and prevention through research are discussed.Specific reccraEndations fc/ acticn in inner city schools and betterEchcol services are listed. Also summarized are the Ccmmittee'spresent and future studies and initiatives in the areas or deliveryof state services, legal rights and guardianship of the retarded,manpower planning and utilization, and international informationexchange. 000

The President's Committee on MentalTHE DECISIVE DECADE

s Committee on Mental Retardation:ADE

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U S. DEPARTMENT OF HEALTH. EDUCATIONWELFARE

OFFICE OF EDUCATIONTHIS 00CLIMENT WS BEEN REPRODUCEDEXACTLY AS RECEIVED FROM TEE PERSON ORORGANIZATION ORIGINATING IT POINTS OFVIEW OP OPINIONS STATED DO NOT NECESSARILY REPRESENT OFFICIAL OFFICE OF EOVCATION POSITION OR POLICY

The President's Committee on Mental Retar-dation was established by Executive Orderof the President ;n 1966.

The Committee is composed of 21 citizenmembers and three ex-officio members ap-pointed by the President to advise' him onwhat 1, being done for the mentally re-tarded; to recommend Federal action whereneeded; to promote coordination and co-operation among public and private agen-cies; to stimulate individual and groupaction; and to promote public understand-ing of the mentally retarded.

5

The PresidentThe White HouseWashington, D.C.

My dear Mr. President:

It is my privilege to transmit to you the fourth annual reixn t of the President's Committee on MentalRetardation.

This rep' t concisely reviews the area: in which the Committee has focused its attention in 1970. It also previewspromises of the coming decade for plc\ end% e measures and amelioration of the national inoblem of mentalretardation. The report highlights improvements in residential care and the breakthrough in research; it alsooutlines the need for farther advancement in programs including education. the delivery of services, and continuedbehavioral and biomedical research for the mentally retarded.

Among the programs the Committee will focus its attention upon during the coming months will be a workconference on the reexamination of intelligence testing and classification procedures: a study of states systemsfor delivery of services to the mentally retarded; and a report on the constitutional rights and guarantees ofthe mentally retarded.

Tire Co,mnittee is deeply grateful to you for your interest and inspiration and asks your eontinucd guidance.

Faithfully yours,

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Elliot L. RichardsonChairman

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Mr. President:We see the decade of the '70s as one in which decisive progress can be made in overcoming mental retardation

and its causes. Exciting work being done in a score of fields and at every level of national life is intensifyingtoward real achievement in this so-long neglected area. Research in the biomedical and behavioral sciences

has discovered many caust:s of this mind - snuffling condition. Ways have been found to prevent some of these

causes, and we are on the threshold of discovery of other preventive measures. It now seems probable that atleast one major cause of retardation could be dramatically diminished by assuring all Americans a basically ade-

quate diet. And the effects of the inental retardatic n that cannot yet be prevented can be reduced in many cases

through education and training programs begun in early childhood. These disco/eries can be translated in-

to practical programs and service delivery systems. Much of the base for making up-to-date, effective programs

at,ailable to the mentally retarded has been established. Each state has a comprehensive plan for the develop-

ment and improvement of services for the retarded. A framework for school services for the retarded is establish-

ed. The Federal Government supports essential research, training and innovative assistance programs. Fundamental

reform in the multi-million-dollar -a-year field of residential services for the severely retarded is beginning. Agen-

cies and citizens generally are making the journey from old attitudes of pity and revulsion to a view of the retarded

individual as a human being with dignity and potential. Increasingly, programs focus on heiping the retarded per-son participate as fully as he can in the community's life and work. This report, Mr. President, our second toyou, will comment on several areas of most significant progress and most critical need in mental retardation, We

ask your help in commending this report to key individuals in public and private agencies and organizationswhose action can bring about the advances now.

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ost days, working with the rota'A...

w-,a no be t of roses. Its often so dillit

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or the ipproximately 275,000 peopleFwho Ihe in the nation's public andprivate residential facilities for the

mentally retail ed, and the thousands morewho are on walind lists to enter those facili-ties, there's hi,; news: fundamental changeand improvement are on the way.

When these changes are made a part of thelife of each retarded person who requirescare away from home, we will havetriumphed over the institutionalized de-humanization and neglect to which we naveso long relegated many of our mentally re-tarded under ti e guise of care and concern.This will be major accomplishment intern-is of lives made productive and seif-reliant.

Several develor ments during the past yearencourage the President's Committee onMental Retarda ion to optimism and hope.

A key development has been the formationof a Federally lunded Council for the Ac-creditation of N'ental Retardation Facilities,working within the Joint Commission onAccreditation of Hospitals to developgenerally accep ed standards of perform-ance for mental retardation facilities, pro-grams and staffs. Guidelines, chiefly thosedeveloped by the American Association onMental Deficiency already exist. The stand-

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ards now being formulated will eNthose guidelines and cover prevfofinc.d areas such as day care staof the major national citizen orgworking in the a.ea of care, rehand education of the mentally recooperating in the accreditationdevelopment project.Simultaneously, there has been rrress in defining desirable cond.goals for services to the retarded

The International League of SccietMentally Handicapped has focusinterest on residential servicesLarded, with a Special Symposiunto the definition of ideal progran

The National Associa'ion forChildren, in a conference on r

service>, urged that the reasonstarded individual's admission to a rfacility be specified and the indivicgram be geared to attain those en

The President's Committee on Mtardaticn, culminating (our years'promotion of action in the r

service field, has issued an Lacticproposal; sponsored a nation?l crof facility and agency leaders to diways of spurring meaningful (kingdential programs for the retard

Residential Servicesformulated will evolve from

5 and cover previously unde-h as day care standards. Allational citizen organizationsarea of care, rehabilitation

of the mentally retarded arethe accreditation standards

roject.

there has been major prog-g desirable conditions ande.; to the retarded.

at League of Societies for theic.3pped has focussed majoridential services or the re-Special Symposium devotedin of ideal programs.

Association for Retardedconference on residentialthat the reasons for a re-

al's adrnission to a residential'tied and the individual's pro-f to attain those ends.

Committee on Mental Re-linating four years' study and

action in the residentialhas issued an action policy-1ored a national conferenceagency leaders to discuss theig meaningful change in resi-'irns for the retarded; and

stimulated press aid broadcast media ac-counts of the proposal nationwide. The Na-tional Association of Coordinators of StatePrograms for the Mentally Retarded hadan important part in drafting the proposal,which fostered meaningful dialogue amongthose who clamor for immediate reform,and thosesuperintendents and programdirectors for the most partwho, restrictedby budget and peisonnel problems, are un-able to make changes, however great theirwish to do so may be. The goals of thedialogue are to produce the improvementsthat can be made now, as well as create aclimate of public and legislative awarenessfrom which can come enduring change.The PCMR's proposal makes the followingbasic points:

0 The primary purpose of residential serv-ices is to enable Cie retarded individual todevelop his physical, intellectual and socialcapabilities to the fullest extent possible ...develop emotional maturity . . . develop,whenever possible, skills, habits and atti-tudes essential for return to communityliving , .

NACSPMR was formcd in 1970 on the basis of aPCMR recommendation. It is initially funded by agrant from Ihe Social and Rehzbilitation Service,DtiEW.

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o The mentally retarded shall have the sameconstitutional rights and guarantees as everyother American citizen.

O The residential facility should be used forprogramming, not punishment.

o Good residential programs provide bothlong-term and short-term services....

o It is the obligation of the residential facil-ity to develop each individual's economicpotential.. ,.

o It is essential that a residential facility co-ordinate its programs with other regionaland community mental retardation servicesfor the development of a full range of com-prehensive services.

O The model resident:ai environmentshould provide a warm, stimulating socialsetting, devoid of dehumanizing conditions.

O Administrative policies should recognizethe importance of the interrelationships ofparents, volunteers, staff and residents.

O Staff must reflect attitudes and behaviorsconsistent with the concept that they serveas family surrogates while the relarced arein their care.

Implementation of the action propoial, itsintroductory statement dsserts, "will be asaving actin human resources, in 1 gram

grlirvaimdsu.al served through human se

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pro-effectiveness, and in financial cost per in-

Roth the National Association to. F.elardedchildron and the American Association on

132

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rovide both-es....dential facil-s economic

11 facility co-her regionaltion servicesnge of corn -

environmentating social

conditions.

Id recognizeltionships ofsicients.

d behaviorst they serveretarded aro

proposal, its"will be a

, in programcost per in-service pro -

for Retardedsociation on

Mental Deficiency are promoting implemen-tation of PCMR's Action Policy Proposal onresidential care through their regional mem-13Arship meetings. AAMD plans a series ofreg'onal forums to publicize and discussways of spurring action follow-up. The pro-posal's educational implications will be ex-plored during the Council for ExceptionalChildren's 1971 convention. The recentlyformed National Association of Superin-tendents of Public Residential Facilities forthe Mentally Retarded is urging the institu-tion field to take every possible action inimproving residential services. And PCMRis asking each state to review its mental re-tardation program planning in light of thenew Federa' Developmental Disabilities Actand take appropriate action to bring thebenefits of the legislation to the retarded.

Thus has come about for the first time aconcerted national effort to remedy and im-prove the conditions of residential living forthe mentally retarded. This is a majorachievement for the countless parents andfriends of the retarded throughout the na-tion, in high places and humble ones, inpublic and private life, who have worked&ring the past quarter-century to bringpublic awareness, concern and action onbehalf of the retarded. Although the comingof change where it countsin the lives andprosp-cts of the individual retardedmaybe gallingly stow to those who have workedso hard and waited so long for it, there isnow at least certainty that progress is onthe wayindeed, is well launched in a fewstates.

And that is good new indeed.

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alnutrition andMmajor causes omental developr

Animal studies prove thundernutrition of motherlain critical pre-birth anr'of rapid growth:

o impair both physical a:ment;

O can cause permanenttardation, regardless ofnutrition;

o are most harmful whelack of specific nutrientssential vitamins, amino

Moreover, neurologicmalities caused by door r

at those early, rapid staghave been found to bewhen physical signs of

corrected.

Chronic food deprivatirthan one generation hasduce increasingly seriothin reduction of learning

And pourly nourished anbehavioral and emotioninteract with the ecneurological and mentalpairing learning ability.

alnutrition and undernutrition aremajor causes of impaired humanmental development.

nimal studies prove that malnutrition orIdernutrition of mother or offspring at cer-in critical pre-birth and post-birth periodsrapid growth:

impair both physical and mental develop-ent;

can cause permanent and irreversible re-rdaron, regardless of the quality of lateritrition;

are most harmful when they consist of ack of specific nutrients such as certain es-ntial vitamins, amino acids or proteins.

oreover, neurologic and mental abnor-alities caused by poor nutrition that occurthose early, rapid stages of development

we been found to be permanent, evenhen physical signs of poor nutrition haveyen corrected.

hronic food deprivation spanning morean one generation has been found to pro-uce increasingly serious effects, particularly

reduction of learning ability.

nd poorly nourished animals usually showhavioral and emotional aberrations that

teract with the equally-hard-to-treateurological aril mental deficiencies in im-iiring learning ability.

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MalnutritionIt is diffirult to apply the results of experi-ment, on ahimals to human beings. Similarexperimentation on humans is unacceptable.But every observation that researchers havethus far been able to make of human indi-viduals and groups subjected to poor or de-prived nutritional conditions argues that theconclusions reached about the effects of in-adequate nutrition on animals apply equallyto people. Items in the evidence:

o A large number of studies conducted withcontrols for age, sex, race and socio-economic background have shown thatmalnourished children have severely im-paired or retarded newological and mentalfunctions as well as emotional and behav-ioral abnormalities.

0 An examination of the brains of infantswho had died of Marasmus (a starvation-related condition marked by progressiveemaciation) found their structure and char-acteristi:s significantly altered and abnormalin the same ways as the brains of younganimals catering from starvation.

0 A group of South African children whohad been severely malnourished in infancywas studied for more than 11 years.Although full physical recovery seemed tohave taken place, significant IQ differencesover 20 points) between this group and a

control group of average children persisted.The heads of the once malnourished chil-dren never reached normal size, and these

18.

children had continuing visual andabnormalities. Similar studies in MexicGuatemala have found persisting abnoties and memory deficiencies amondren who were malnourished befmonths of age.

0 A study in which genetic differenceallowed for found that children withcal signs of earlier malnutrition ratedsistently and significantly low in tes

eurological functioning.

0 A preliminar, report of the Nationtrition Survey, in which the U.S.Health Service is collecting nutritionon 70,000 persons, found evidence c

'P.:* nutrition in an unexpectedly large pcage of low income group members, wto a third of the children studied sh

t malnutrition-associated characteristic -tar to those of undernourished populin some of the world's poorest nation

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The evidence that poor nutrition in nand child causes mental retardationas other major handicaps is no overwing that it is time to cease quibblinincomplete-as-yet research on thenency of poor nutrition's effect onbeings. ft is time . . . and past timeget on with the essential work of pre%a cause of mental retardation that i

so extensive and so possible to eradkthe United States.

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visual and motordies in Mexico and p

?rsisting abnormali-r.icies among chil-iurished before 6

is differences were rhildren with physi-utrition rated con-y low in tests for

.1 the gitional Nu-1 the U.S. Publicting nutrition datai cv;dencc mai-eclly large percent-, rncmbc rs, with upn studied showingharacteristics simi-lashed populationsoorrnt rations.

nutrition in motherretardation as wells "s so overwhelm-ase quibbling overch on the perma-'s effect on humand past time ... towork of preventingJation that is bothible to eradicate in

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Poor nutrition in the United States is almostcomplete!, a phenomenon of urban andrural low income areas. Nor is there anymystery a'pout why the condition exists inthose are is. it exists there simply becausemany of the people who live in those areasdo not a id cannot get enough food andenough c the right kinds of food. The rea-son is nr): 'hat poor people cannot recognizeor will n<lt buy nutritionally valuable food;a 1965 Pepartment of Agriculture studyfound, in ,fact, thi t low income householdsget more calories and nutrients per fooddollar spr nt than do higher income house-holds. Thy! reason, President Nixon stated inissuing tF e call to the 1969 White HouseConferenr;e on Nutrition: "Millions of Amer-icans ar& simply too poor to feed theirfamilies pi-operry."

Upwards 11)f 25 million Americans live on in-comes oil less than $3,300 3 year for afamily of [our, and half of these Americans--includirlg some 5 million childrenlivein househplds having an annual income of$2,200 or /,ess. To maintain an adequate diet,such famil.es would have to spend over halfof their iicome for food. Almost no onerealisticaIN can budget so large a part ofincome for' food, and the actual result of the

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Lower IQs

ReducedLearningAbility

ImpairedPh; ical

Functions

An Estimatedmpaired 20 Millionwrological Americans Suffer U'unctions From

Malnutrition

MemoryDeficiency

Irritabilityand

ImpairedJudgment

BrainAlteration

andDamage

IrreversibleMental

Retardation

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clamoring competition of necessities in thelives of the "hard core" poor is an endemicsen i-starvation. The National Council onHunger and Malnutrition estimaLs that per-haps 20 million Americans suffer from mal-nutrition.

This is not the place, nor this Committee theapp-opriate group, to wrestle with themyr d economic, social and public policyque Mons posed by the existence of so largea group of Americans living in poverty. Wehope that the various programs and ap-proi.ches proposed by this administrationwill open she way to opportunity and a justshare of America's prosperity for those whohavo been living on too t.Itle.Food has historically been looked on andstudied as a production and consumptioniten- in the American economy; until veryrecently there were few surveys that at-tempted to link food with people's nutri-tional status. The small band of nutritionistsand dietitians around the country have hadto strive against general ignorance and in-difference about food as a foundation ofhealth.Th rt ignorance and indifference, moreover,seems to be growing rather than diminish -ins,. Reduced consumption of milk, less

breast feeding for infasee., meals, fast increafood outside the Isomhabit trends ro-ol. 3heat too much thetionally speaking, or tofood. And, finally, ahcould make fuller utilprograms to bring thistion of the American

These are all developnmust do something ab(health and fiber of ouand our children's chi

In 1971, the President',tal Retardation vs,11 psenting in detail whthrough research and (relationships of malnutmental deficiency anding the report, whichstages of preparation,mhke practical recomthat private organizatiat all levels can take toand most needless ofretardationlack ofour and of plenty.

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Research

iomedical and behavioral research in

13 mental retardation and allied areaspays off. little noticed amid the m...1-

titude of multi-million-dollar searches forcauses of cancer, heart disease and othermajor cripplers, the comparatively modestefforts of mental retardation, human de-velopment, learning handicap and neuro-logical researchers have been making extra-ordinary progress in early diagnosis,prevention and relief of

Fact. Some 27 heritable metabolic disordersthat can lead to mental retardation (amongother effects) can now be identified in thefetus from study of fluid or cells taken fromthe pregnant mother's amniotic sac. Thisprocedure, called amniocentesis, has beendeveloped during the past decade and isnow available at most university and otherlarge medical renters. Among the conditionsthat can be diagnosed through this methodare galactosemia, Tay-Sachs disease, Hurler'ssyndrome, Gaucher's disease and glycogenstorage disease, all of which produce severemental ietardation.

Also identifiable by the same procedure areorganic genetic defects in the fetus causedby absences or irregularities in the chromo-somes that program an individual's develop-ment. One of these chromosomal abnormal-ities, Down's Syndrome (Mongolism), afftcis

one baby in Every 600 born. Thisalone accounts for 10 percent of tFliving in residential facilities fortally retarded at an average lifetimtaxpayers of over $100,000 per per

A related procedure now makes ito identify individuals who facethan-average risk of producing aing genetic defects that could leadretardation. TI- is procedure, justavailable through medical and rese:ers, studies ar adult's tissues orcellular evidences of genetic irri'.vhich may, especially when in corwith similar irregularities in a spcduce a defectiNe fetus.

These products of biomedical resgether with evolution of new attabortion, are making it possible fotime in history to predict an inchances of conceiving a normalknow whether a fetus is normal orand to give affected persons oppomake their de:isions in these mthe basis of farts.

Fact. Viral diseases that can leaddefects and mental retardation hdealt heavy blows by research teaing on new vaccines. The mostimportant of these vaccines just n

600 born. This condition10 percent of the people

al facilities for the men-n average lietime cost to5100,000 per person.

ire now makes it possibleluals who fice a greater-of producing a child hay-

ls that could lead to mental:procedure, just becomingmedical and research cen-dult's tissue!- or blood for'5 of genetic irregularitieslaity when in combination

:ularities in it spouse, pro-fetus.

)1 biomedical research, to-:lion of new attitudes onsing it possit le for the firstto predict an individual'seiving a nx-nal child, to'etus is normr I or defectiveled persons opportunity toions in these matters on

ces that can lead to birth101 retardation have been.s by research team work-ccines. The most criticallyse vaccines just now is the

26

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rubella (German measles) vaccine that hasbecome available during the past 18 months.If enough children can be immunized withthis vaccine, there is hope that there cannever be a recurrence of the cyclic rubellaepidemics, the most recent of which in 1964produced thousands of babies afflicted bymental retardation and physical birth defects.

Other recently developed vaccines are nowgreatly reducing the incidence of mumps,measles and other viral diseases whose com-plications have often led to neurologicaldamage and mental retardation.

Fact. Now intensive research findings havemade it possible to prevent nervous systemdamage in the Rh positive child of an Rhnegative mother. This condition can resultin mental retardation. Besides the well-known exchange blood transfusion tech-nique (which, dramatically, can now becarried out before birth), there has beendeveloped an immunizat'on that preventsthe tzuild-up in the mother's system of sen-sitizing antibodies that react on the child.

Fact. Sophisticated new techniques of mon-itoring the fetus before and during birthtoday make poss,ble the prevention of manyphysically and mentally crippling "acci-dents" of pregnancy and birth. These tech-niques also make possible the instituting ofeffective measures to help the high-risk babybefore, during, and following birth.

These major advances are but beginnings,however, in an endeavor that must find

27,

many more answers before decisive actment in the prevention or relief of nretardation can be claimed.For example, much as we know nowthose conditions that result in menttardation at or soon after birth, there regreat voids in our understanding. Theof approximately 75 percent of merittardation is still unknown.

Studies of the effects of viruses on hdevelopmentboth in the short andtermsare in their infancy, despite thnificant achievement of vaccines for riand other conditions. The rubella imirthat can presently be given is incoirand may not be permanent. The infilon human growth and developmciviruses that lie dormant in the bodyears may be immense. Especially nrare cooperative, interdisciplinary studiboth biomedical and behavioral seeinto improved early diagnosis and pratrnirg for mild and moderate developrrproblemsthe great majority and theknown.

This Committee urges, as it has sir(establishment and as did the Pres (Panel on Mental Retardation almost aade ago, that basic research in all pha!the biomedical and behavioral sciencescontit,ue with as broad support as posSome of the most significant discoverthe diagnosis and prevention of menttardation made during the past decade

more answers before decisive achieve-in the prevention or relief of mental

cation can be claimed.ample, much as we know now aboutconditions that result in mental re-

tion at or soon after bath, there remainvoids in ou- understanding. The causeprox mately 75 percent of mental re-tion i; still unknown.

es of the effects of viruses on humanopmentboth in the short and longare in their infancy, despite the sig-nt aciievement of vaccines for rubella)they conditions. The rubella immunitycan Presently be given is incompletenay rot be permanent. The influenceIumar growth and development ofs that lie dormant in the body for

may be immense. Especally needed°operative, interdisciplinary studies bybiomedical and behavioral scientists

mpro7ed early diagnosis and program-for ri ild and moderate developmentalemsthe great majority and the leastn.

Comrnittee urges, as it has since its',1ishment and as did the President's! on Mental Retardation almost a dec-Ago, that basic research in all phases of,iomedical and behavioral sciences mustnue with as broad support as possible.

of the most significant discoveries inliagnosis and prevention of mental re-tion nade during the past decade have

come from studies not originally concernedwith retardation.

Fact. Behavioral science has been accumulat-ing evidence over the past two dec des onthe crucial importance of the e7..ly years inthe ..levelopment of personal competence.

FREQUENCY OF SPECIFIC DEFECTS

AMONG 376 CHILDREN FOLLOWINGMATERNAL RUBELLA

No defect

Deafness

Heart disease

Cataract (2)

Cataract (11

GlaucormRetinopathy only 1

Psychomotorretardation

MildModerate

Severe

Purpura

Deaths

70

252

182

59

12267

47

Only Defect

68

7

1

170

84 (cerebral palsy 21)

40 (cerebral palsy 8)

46 (cerebral palsy 17)

85

61

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II is becoming increasingly evident that en-vironment plays a major role in shapingboth the developmental course and rate ofhuman ability. Earlier concepts saw growthand development occurring according to afixed genetic pattern and pace in a closedsystem that did not change. The latest find-ings point to growth and development as aninteracting process beto.een the individual'sgenetic endowment and his environment inan open system. This new conception willhave a profound effect upon chid rearingand educational practices in the develop-ment of a competent and productive society.

We urge, therefore:

Continued support for biomedical and be-havioral research activities and facilities;

Continued development of programs fortr lining medical students rn research careers;

Cc ntinued development of needed legisla-tion such as the Developmental DisabilitiesAct;

Continued dissemination of research resultsto the agencies and individuals needingthem;

Continued widespread involvement of citi-zens in such activities as measles immuniza-tion campaigns, birth defects informationefforts and volunteer assistance in the cen-ters, classrooms and agencies where the re-sults of research are being put to work forthe people.

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fncidence of RabeNew York City, 0

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300

t3 203

100

1 291 31 1 3128 30 32

Naiieriai

CLINICAL M

Detect

Neonatal purpuraHeart disease

Cataract or glauconDeafness

Neurologic deficitTotal children*

Of-parlmrol of rof MerN ono, Nov

Incidence of Rubella from 1928 to 1967, in ten selected areas, Maine, Rhode Island, Connecticut,New York City, Ohio, Illinois, Wisconsin, Maryland, Washington, and Massachusetts.

700

600

k5008

400

300

3 200

100

291 31 133 35 37 39 41 43 45 47 49 51 153 55 57 59 61 63 65 6728 30 32 34 36 .38 40 42 44 46 48 50 52 54 56 58

YearNational Communi7.tbie riicratr Center, Atlanta !Dr. /ohn f. Witrt

60 62 64 66

CLINICAL MANIFESTATIONS OF CONGENITAL RUBELLA CORRELATEDWITH TIME OF MATERNAL INFECTION

%tooth of Prconancy

Defect Fird Second Third fourth.

>FourthNo CT rical Insufficient

Rulttila InformationNeonatal purpura 14 43 7 2 0 12 7

Heart disease 34 62 17 2 1 29 7

Cataract or glaucoria 30 31 6 0 0 28 2

Deafness 50 76 55 21 0 39 11

Neurologic deficit 34 63 20 11 0 33 8Total children* 60 106 82 43 16 50 19

Educationn late summer 1969, PCMR sponsored, with theBureau of Education for the Handicapped of theU.S. Ofiice of Education, a conference on the learn-

ing problems of inner city children.

The conference was held at a time of rising naronal con-cern about the increasing education problems of the de-prived child. Standard techniques for testing and placementseemed to exclude or defeat the child rather than providethe framework for productive, fulfilled living.

For example, when a standard IQ test was given in Spanishto Mexican-American children assigned to classes for theeducable mentally retarded, the children's IQ score jumpedan average of 14 pointsan increase which took some ofthe children out of the state's mental retardation classifica-tion. Already a topic of widespread discussion was a studyof classroom performance in relation to teacher expecta-tion which found similar groups c f children bearing outwidely differing performance expectations on the part oftheir teachers. Court suits on disproportionate assignmentof minority group children to special education classesalready have been filed.PCMR's interest in this area has grown out of a bond-scaleeffort to find out how many mentally retarded persons ofschool age there are, how many are in school, whether theyreceive appropriate school and community services andwhat might be the best services and curricula for them.

The Committee discovered that making such determinationsis no easy thing to do. Slate laws differ, with one state,for example, calling IQ 78 the level at and below which achild is considered retarded, while another may place the

top of the classification at IQ 70. Some states have vaguecircumlocutions or obsolete definitions in their stat;itesconcerning the retarded. in few states is the mandatoryschool attendance law seen as applying to all children whycan benefit from school services and programs.

The principal facts are: (1) the majority of those Americansdeclared mentally retarded at any time in their lives are solabeled by the schools, (2) most of the children so namedby the schools aro from minority and low income groups,and (3) much of the under performance being diagnosedin children as mild mental retardation is preventable andreversible if attacked early, since the cause may be purelyenvironmental.

The August 1959 conference delved into these complexquestions. It identified a new inhabitant of the troubledschool scenethe "six-hour retarded child," the child whosesocial adjustment is adequate but whose school perform-ance is poor and often grows consistently worse. And the92 participantsschool administrators, teachers, officials,and inner city citizens--made seven recommendations foraction in inner city schools and better school services:

RECOMMENDATION 1 Provide early childhood stimula-tion, education, and evaluation as part of the continuumof public education.

RECOMMENDATION 2 Conduct a study of histories ofsuccessful inner-city families who have learned to copeeffectively with their environment.

RECOMMENDATION 3 Restructure education of teachers,administrators, counselors. Retrain those now in the field.

:31

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AGE DISTRIBUTION OF MENTAL RETARDATION CLINICAL CASEREGISTER COMPARED WITH AGE DISTRIBUTION OF POPULATION

Agcl

45-49

UNDER 50 IN A SOUTHERN CALIFORNIA COMINAUNITY

40.44

30-34

25.29

20-24

15.19

Color areas represent the populet on of the rornni,inity under 50Double line delineatr s the profile of the population of the MenialRelatdation Clinical Cse Register.

10-14

5.9

0-4

I

5 10 15 20 25

Adrpted from forthcoming report The Eligibles and !he tat pled, fent" E.: ,N gum., rh

33

/I NICAL CASEII POPULATIONWIN ITY

ider 50Mcntar

100

90

80

SOelOCUI I URAI STATUS AND IQWREI A'1"N ICAN-A.0ERICA

AND NrIs.,0) ..GHILDRFN IN A)(JTliEV:.CAL11:6KNIA

82.7

tommes rim Mexican-American Mean IQ

^ Negro Mean IQ

25 30

r R Nfercrr, Ph

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34

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I

Jii RECOMMENDATION 5 Corfunding for research and de

viler . provement for disadvantaged

tf

I RECOMMENDATION 6 The'

rtutes accountability, allocate

:the responsibility entailed an

ffor providing quality educate

1

RECOMMENDATION 7 Invcitizen groups, students, andin total educational effort.

RECOMMENDATION 4 Rectelligence testing and classific

As a major follow-up to thence, PCMR plans a nationaland evaluation of instructiorfor the mentally retarded.by the Council for ExceptiorEducation for the HandicappLion will be held in 1971.reexaminatioo of intelligerrecommended by the innSome 100 special educatrpsychologises, curriculum arartd minority group represcrlabeling, testing and scree,in U.S. schools. Both currcrand program changes that r

would require will be exam

In anoth'.r phase of its br,grams for the mentally retaworkshops to evaluate curuse in classes for the etruc,,miller, as a resuit iE urgingand publishers to deelop Imater'als for the retarded

RECOMMENDATION 4 Reexamine present system of in-telligence testing and classification.

RECOMMENDATION 5 Commit substantial additionalfunding for research and development in educational im-provernent for disadvantaged children and youth.

RECOMMENDATION 6 Thoroughly delineate what consti-tutes accountability, allocate sufficient funds to carry outthe responsibility entailed and hold the school accountablefor providing quality education for all children.

RECOMMENDATION 7 Involve parents, citizens andcitizen groups, students, and general and special educatorsin total educational effort.

As a major follow-up to the inner city education confer-ence, PCMR plans a national conference on child placementand evaluation of instruction in special education programsfor the menially retarded. This conference, co-sponsoredby the Council for Exceptional Children and the Bureau ofEducation for the Handicapped of the U.S. Office of Educa.tion will be held in 1971. Its principal topic 4011 be thereexamination of intelligence testing and classificationrecomrnended by the inner city education conference.Some 100 special educators, university representatives,psychologists, curriculum and guidance specialists, parentsand minority group representatives will probe the issues oflabeling, testing and screening procedures used routinelyin U.S. schools. Both current practices and the curriculumand program changes that mproved screening procedureswould regdire will be examined.

In another phase of its broad-scale study of school pro-grams for the mentally retarded, PCMR last year held fourworkshops to evaluate curriculum materials designed foruse in classes for the educable mentally retarded. The com-mittee as a result is urging all education materials plannersand publishers to develop better, more relevant curriculummaterials for the retarded.

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uring the past decade the mentallyDretarded have entered the workworld in significant numbers for the

first time. It has been an eye-opening experi-ence fe: all concerned.Employers whose original motivation in hir-ing retarded workers came perhaps morefrom charity than business sense have dis-covered that there are many jobs that theretarded can do welloften better thanother workersand that intelligence is notthe only qualification for successful employ-ment.

Friends and families of the retarded are dis-covering to their surprise in many cases thatthe trained retarded can earn and live theirown way, that the true dignity of work liesin doing well and productively those thingsthat one can do.

And the retarded themselves are findingthemselves liberated into "real" Inc.f Theygo to work, earn pay, have their ow n placesto live and their own possessions. T ey havebecome people!

38

Along the wayof most retarcthat potential,tion and worktors in programLarded. Voca ticthe skills and da retarded indipotential can gl

The President'sof the Handicagether come t

education andlarded personented from theipointed towardactually exist itAnd school prtraining For theenough to deoattitudes in theamong the retaschool program,also continue ur

ntaflyworkit theperi-

1 hir-more, lis-t thethan

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ndingThey

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Along the way of discovering the potentialof most retarded people and developingthat potential, we have learned that educa-tion and work are the most important fac-tors in programs developed to help the re-tarded. Vocational training, education andthe skills and disciplines of work that bringa retarded individual up to producing at hispotential can give him new life.

The President's Committee on Employmentof the Handicapped and POOR have To-gether come to the conclusion that theeducation and training of a mentally re-tarded person should be vocationally ori-ented from their beginning. They should oepointed toward the kinds of jobs that willactually exist in the area i.) coming years.And school programs or education andtraining for the retarded should be flexibleenough to develop good work skirls andattitudes in the broad range of ability levelsamong the retarded who can benefit fromschool programs. These programs shouldalso continue up to the point at v ich the

V t

Employmentretarded individual moves into the job hewits hold (no gap between training andwork), with counseling assistance continu-ing as needed at least until the new workeris demonstrably adjusting well to his work-ing conditions, co-workers, and being onhis own.

In a nation that holds as one of the yard-sticks of progress and prosperity the num-ber of its people employed, the training artemployment of handicapped workers innecessary, productive and economically sup-porting jobs is a dollars-and-cents invest-ment in the health of the nation's economy.At the same time, the values in the form ofdignity and pride accruing to the handi-capped workers who receive thereby a pieceof the action of real life, are 1-,o less realfor ihe difficulty of their measurement. How-ever, the nation must remember, and ifnecessary be reminded, that training of thementally retarded which enables them to"get a piece of life's action" is a continuingneed, not just a one-shot matter.

.1q 17

StateServices

Progress and improvement in the livesand prospects of the nation's mil-lions of mentally retarded individ-

uals depend, ultimately, on how well theservices they need are delivered. And howwell the services are delivered depends pri-marily on the planning, efficiency and effec-tiveness of the state and community agen-cies that administer and furnish public pro-grams and services for the handicapped.

Each of the 50 states and territories has aplan whose purpose is to assure that theretarded receive both the individual andcomprehensive services they need throughthe action of agencies acting singly and co-operatively. However, reports from parentsof retarded children as well as specialistsworking in the field continue to tell of frag-mentation in services, insurmountable bar-riers in bringing individuals the kind orrange of services they need, and vast publicconfusion about what kinds of services, ifany, are available

Early in 1970, the President's Committee onMental Retardation began a study of thedelivery of services to the mentally retarded.Although the advantages of early interven-

4 0

tion in developmental problems is now gen-erally accepted, two of the five states studiedrefuse admission to a state residential facilityto any retarded child under the age of six,regardless of the degree of mental retarda-tion. Retarded children under six in thosestates are sent to private institutions--for afee that ranges from $100 (for welfare reci-pients) up to $350 a month, depending onthe family's resources.

In most states a constitutional guaranteeoffers free, public education to all children.But in many states the guarantee is tacitlyignored in regard to those handicappedchildren whose intelligence range is less than"normal." Special education programs forthe mentally retarded are not widespread,and many school districts simply elect notto provide such programs. The programs lagin many school districts, even in the twostates in which their attorney general hasruled that the constitutional guarantee offree, public education applies to all children.

Still neglected in many states are the post-school period and the adult years. Fewstates' programs concern themselves aboutthe period between completion or leaving

0 Million 100 Million 200 Million 300 Million 400 Million 500 Million 600 Million

1965

1966

196'

1968

1969

1971test)

Sec/via/Cs Commitice on Alen!rif Reford.nonn, Deparfment nl IleAh, Jrwi Wellato

FEDERAL MENTAL RETARDATION BUDGET 1965-1970-1971 (EST) INCLUDED

UM I

5211111MINCEServices Training Research Construction Other

DIRECT SERVICES INDIRECT SERVICES

The Committee is continuing its specialproject on economics. The study and analy-sis of economic factors and comparativecost of programs ar I services will provideus understanding on which we may be,,future direction and plan services.

41

school vocational training practual beginning of a job.numbers of the retardedduring this period to the weachievement of self-relianceFar too few vocational trainithe retarded operate to prdents for jobs tha' will actuence and available when Icompleted training, and therfacilities available for the rtarded workers when ernpchange.

The mentally retarded adulhuman being in many starewelfare recipient or an insthe is likely to be eking colevel existence through we

....40""" margins of the economy. Fcmunities have an adequateshop, activity or recreationthe adult retarded living in

*4../ & and fewer still have elf(1 is

lcounseling resources.

'Se

, '(7

l''..A five slates currently being s'

have made sioificant prr,:.

"19I I 42

ng programs and thejob. Yet, uncountedfed are lost foreverle work force and tolance for themselves.training programs foro prepare their stu.actually he in exist-

-len the student hasI the e are almost nothe retraining of re-employr ent needs

adult is a forgottenstates. If he is not a

institution resident,g out a subsistence-) work on the veryy. Few states or corn-luate range of rvork-ational programs forig in the commdnity,

effective, on-going

ng studied by PCMRprngress toward the

goal of coordinating the z.ctivities of stateagencies to provide a flow of service as thementally retarded child grows and his needschange. But even in these slates, servicesare often limited by agencie.;' lack of staffand fundinga problem that can create in-adequacies in services and can lead to actualneglect of state areas or segments of popu-lation, while other areas or populationgroups are receiving complete services.Moreover, agency eligibility requirementsfor services vary from state to state and fromagency to agency within states. Licensing offacilities for the retarded is not done accord-ing to uniform standards. And agencies tendto concentrate their services on particularpopulations -those traditionally workedwith or those with whom the agency mosteasily makes contact

The President's Committee on Mental Re-tardation urges every state to make a dosestudy of its programs and agencies that serve,or are intended to help serve the mentallyretarded, and to take every action needed toassure that the needs of the retarded aremet through uniform, equitatle, high qualityand generally available services.

43

1'162

1162

1962

6)69.

GROWTH OF STATE SERV+CES IN NORTH CAROLINA 1%2-1%9

Day Care Services

I) 15 20 25

Sheltered Workshops

0 15 21 25 10

Special Education 1Number of Classes)

Special Education (Number of Students Traina )1e)

1962

16.0

0

l'th2

V169

500 1.1Xio 1,500

Special Ehcation (Number of Students Educable)

11111111111:k

44

6,1 000 400

N 1962-1969

1(1 33 4(7

2.5(.1

43

all

'000

1,000

45 21

Additional Action Areasuring the past year, the President's

DCommittee on Mental Retardationhas continued its long-term studies

and initiatives in the areas of legal rights andguardianship of the retarded, manpowerplanning and utilization, and internationalinformation exchange activities.

Legal Rights and GuardianshipIn June, the Committee sponsored a meetingof experts to examine the status of guardian-ship provisions for the retarded r,nd suggestways in which those provisions may bemade more realistic and effective. Fifteenrepresentatives from state and Federal agen-cies and from such organizations as the Na-tional Association for Retarded Children andthe United Cerebral Palsy Associations ofAmerica attended.

Most states' provisions for guardianship ofthe retarded are relics of a time when thementally retarded individual was consideredan incompetent who had to be kept awayfrom normal social and work contacts. They13rgely consider or assume the retardedperson to be without rights, deny him dueprocess or the equal protection of the laws,and often encumber his family's estate for

46

years as the price of the state's assuming hiscare. The damage done to retarded individ-uals who are capable of self-support andself-reliance, to those who have becomecaught up in the judicial process, and tofamilies who can be in effect held responsi-ble for a retarded individual into a secondgeneration is incalculable.

The President's Committee is working todevelop model guardianship provisions thatwill encourage the retarded individual toexercise all of the citizen rights that he iscapable of exercising, give him the benefitof equal protection under the law with allother citizens, and promote the develop-ment in states of public advocates for theretarded (and other handicapped) who willserve both as counselors and as surrogatesas necessary.

Manpower

Also in June, the President's Committee pub-lished the proceedings of a joint UnitedStates-Canada conference on manpowerplanning and use in the mental retardationfield. The report calls for new trainingcourses, programs and wort roles if services

'4

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411('944,

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2448

to the mentally retarded are toeffectiveness. Especially urgedcf obstacles that prevent the b(n ent, assignment and career groar d other supportive personnerer.trdation programs. The reportmends:

r) Intensive re-evaluation of spcVon programs in schools, particfor the educable mentally ret,the over-all objectives of putt'resources of the school to worktarded child, enlarging the teach'fives of special education pergivng regular classroom teachersadministrators better understandcial education aims and metho:

O The setting of performance styall levels of basic and supportivewith the maintenance of thus'made the responsibility of aorganization.

C The dnelopment of accreditadures for all facilities serving ththe retarded.

O The setting up of in-service trgrams for all categories of stabwith the retarded.

o A broadening of national altional o r k study exchanges to iiportive staff "so that eve yore

to the mentally retarded are to grow to fulleffectiveness. Especially urged was removalof obstacles that prevent the best develop-ment, assignment and career growth of aidesand other supportive personnel in menialretardation programs. The report also recom-mends:

O Intensive re-evaluation of special educa-tion programs in schools, particularly thosefor the educable mentally retarded, withthe over-all objectives of putting the fullresources of the school to work for the re-tarded 'hild, enlarging the teaching perspec-tives of special education personnel andgiving regular classroom teachers and schooladministrators better understanding of spe-cial Education aims and methods.

O The setting of performance standards forall levels of basic and supportive personnel,with the maintenance of those standardsmade the responsibility of a professionalorganization.

o The development of accreditation proce-dures for all facilities serving the needs ofthe retarded.

o The setting up of in-service training pro-grams for all categories of staff who workwith the retarded.

C A broadening of national and interna-tiona work study exchanges to include sup-! portise staff "so that everyone, from the

=MImrMdI

student to the professional, both basic andsupportive personnel, has the opportunityof enriching his views and approaches tovarious duties,"

International

In September, POOR sponsored the firstinternational conference on mental retarda-tion needs, resources and approaches in theCaribbean area, Delegates from 25 nationsattended.

The conference stated the need for the up-grading of existing facilities and the estab-lishment of services in many areas of theCaribbean where none presently exist.

Among other recommendations the con-ferees urged the establishment of a regionalsecretariat whose principal function will beto collect and collate all relevant informa-tion concerning the needs of the meniallyretarded in the Caribbean, and to initiateinterdisciplinary studies on relevant subjects.

Although the retarded child of today hasa far greater opportunity for a life of ac-tive adult citizenship than his predecessors,there are major opportunities to meet andsolve problems if the pas: is to be a pro-logue to a better future for the retardedindividual. The task before us is to applyour current knowledge so that the '70s will,indeed, be The Decisive Decade.

49

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Committee Members

Elliot L Richardson

Donald Lee Fox

JeannetteRockefekr

Robert A. Aldrich

401.4

Marianna Beach

zoomVictor R. Fuchs Lawrence A. Kane

Luis D. Rovira Kenneth J. Ryan

N. Lorraine Beebe

rt

Susann R. on

William H. Borders Clair W. Burgener

4C-

David Echols

Lloyd E. Rader Louise R. Ravenel William B.Robertson

George Tanjan Thomas A. Tucker David K. Udall Raymond W.Vossell

V. t C.01FP,MENT FPN1I,C. OFFICE 1.1, 0 111 III

)

MEMBERS (1970.71)

Elliot L RichardsonMartianRobert A. Aldrich M.D.Vice Chairman

Marianna BeachN. Lorraine BeebeWilliam H. Borders, Jr., M.D.Clair W. BurgenerDavtl EcholsDonald Lee ForVictor R. Fuchs, Ph.D.Lawrence A. Kane, Jr.Susann R. OraLloyd E. Rader, Sr,IOW* R. Raver:elWilliam B. RobertsonPunnet!' RockefellerLuta D. RavinKenneth J. Irv, M.D.Georg* Tarim, M.O.Thomas A. TuckerUavld K. UdallRaymond W. Vowel!

The Secretary of Labor, E OfficioThe Director of the Office ofEconomic Opportunity, Es Officio

PROFESSIONAL STAFF CONSULTANTSFred 1. KrauseActing Executive Director

Francis X. LynchDeputy Executive Director

George S. Morgan, Richard C. Thompson,Mary Kay Walsh, John P. WilhemProgram Specialists

Mary Z. GrayProgram Information Services

Ronald W. Conley, Ph.D.Economist

OFFICE STAFF

Diane BalkyNancy bordersHelen CaidwellEvelyn CochranGwendolyn ColemanRuth GrayBeverly KeithMelretia NealPriscilla Tithes

Charles E. AcuffCharles D. Barnett, Ph.D.Gerald I. Bensherg, Jr. Ph.D.Louis L Cooper, M.D.Ekanor ElkinThomas EtheridgeDennis E. HaggertyEdward L JohnstoneFrancis P. KelleyMarianna PaigeNnrrnan B. Pursley, M.D.Paul Rittnsanic, Ph.D.Donald 1. Stedman, Ph.D.Margaret B. Ulle

The Committee is grateful to the many Inch-iduals ingovernment at all levels, in the voluntary organizationsand in private life who have varnished invaluableencouragement and assistary.e.