Document Z0jdvwLmvxO15z4jojdbapo7

Health Policy Advisory Center No. 48 January 1973 HEALTH PAC BULLETIN BULLETIN BULLETIN THE POLITICS OF MENTAL RETARDATION It has been estimated that as much as three percent of the population - six mil- lion Americans are mentally retarded. Based on the definition of the Ameri- can Association on Mental Deficiency (AAMD) that mental retardation is " sub- average general intellectual functioning which originates in the developmental pe- riod and is associated with impairment in adaptive functioning, " this estimate would include children and adults who are able to live on their own and perform marginal unskilled jobs as well as those who are incapable of such minimal func- tions as eating, sitting up, or being toilet trained. And this number is increasing as more and more severely and profoundly retarded infants survive to adulthood as a result of medical advances. Until recently, it has been public policy to institutionalize people of all levels of retardation. There are now more than 200,000 people, half of them children, warehoused in 167 public institutions for the retarded. Another 50,000 people are on waiting lists. The annual expenditure for maintaining these institutions runs over $ 500 million with the average daily maintenance cost per resident being 6.72 $ in 1966. (New York ranked 29th in the daily amount spent.) With the 1960's Federal emphasis on developing community resources and the media spotlight on institutional ware- houses like Willowbrook State School (see article, Page 11), institutions have be- gun to restrict their population to the more profoundly and severely retarded. Ninety- five percent of the mentally retarded popu- lation resides in the community despite the virtual absence of public services for the majority who are mildly and moder- ately handicapped. However, institutional warehousing still continues in all parts of the country. In- deed, less is spent annually on the 95 percent living in the community than is spent on those in institutions. And the atti- tudes which historically led to the segre- gation and isolation of the retarded in this country still affect all aspects of Federal, State, and local retardation programs. There is no place in this society for " productive non -" people, be they aged, young, or mentally retarded. Mental re- tardation, as determined by intelligence tests, is a measure of performance and reflects the emphasis on economic produc- tivity which mirrors the society's con- cerns (see box, Page 5). Poverty and mental retardation are inextricably inter- twined, particularly in the case of the " borderline " mentally retarded. Undoubt- edly, the rate of mental retardation among the poor is higher due to poor nutrition and lack of medical care. On the other hand, it is clear that much of this rate re- flects not the intellectual potential of the persons being measured, but rather the social and economic biases of the psycho- logical tests used as well as the poor quality of education available in poverty areas. Most " borderline " retarded persons could be taught to perform basic skills and could hold many unskilled and semi- CONTENTS 1 Retardation Policy 11 Willowbrook skilled jobs. However, in a society where there are not enough jobs for those who are not handicapped, the mentally re- tarded don't stand a chance. Thus institu- tional warehousing becomes the only way of dealing with " the problem. " Retardation has always been viewed from a social perspective even more than from a scientific or medical one. Through the years, attitudes toward men- tally retarded people have dovetailed with major trends in religious and eco- nomic thought; and the treatment ac- corded the retarded has changed with every significant social upheaval. How- ever, except for a few brief and confident periods of history, retarded persons have received little but fear and brutality from society. Furthermore, the welfare of re- tarded people (or any people for that mat- ter) has never been seen as the collective business of society. The Wild Child The history of efforts to treat the retard- ed starts with Dr. J. Itard, teacher of the Savage of Aveyron (subject of the recent Truffaut film " The Wild Child "). He is credited with the first disciplined educa- tional effort directed toward a mentally deficient person - in this case an orphaned child captured in a French forest in the 1790's. While Itard felt that he failed in his instruction of the boy, his work was picked up by other European intellectuals, espe- cially those most influenced by the demo- cratic social ideals of the French Revolu- tion. Educational work with the retarded attracted them because of their own no- tions of the " natural man, " the expand- ability of intelligence, and the perfect- ibility of man. One of the most influential of these was Seguin (also French) who came to the US in the mid 1800's - , a time of great social and intellectual ferment. He, along with Samuel Gridley Howe (Boston abolitionist, educator and head of the Perkins School for the Blind), was instru- mental in starting a number of schools for the retarded. The schools were not de- signed as custodial institutions. They were to be small, located in cities and com- munities and they were not to care for residents permanently. While their ob- jectives were somewhat qualified (they did not work with the profoundly retard- ed) they were optimistic. Seguin reported: " Idiots have been improved, educated, and even cured. Not one in a thousand has been entirely refractory to treatment, not one in a hundred who has not been made more happy and healthy. " It is doubtful that there has been any signif- icant educational effort made for the re- tarded in this country, in the 100 years since Seguin was quoted. The early educational efforts of Howe and others coincided with Dorothea Dix's reform campaign to create special institu- tions for the " insane and feebleminded. " She toured Massachusetts towns observing the treatment given these outcasts in jails and almhouses " in cages, closets, cellars, stalls, pens! Chained, beaten with rods and lashed into obedience. " Her eloquent statement " Memorial to the Legislature of Massachusetts " in 1848 described one common and pernicious custom in town- ships across the state. Every year, the town's dependents would be auctioned out to the lowest bidder for care. This early form of " foster care " almost guar- anteed that these persons would suffer horrendous deprivations in food, clothing and shelter as well as sadistic punish- ments and confinements. Dix's expos worked and the first State School was es- tablished that same year under Howe's directorship. New York State established a State school the next year and other states quickly followed suit. From School to Asylum Before long however, it became clear that most of the retarded residents of these schools were not merely suffering from slowly developing intelligence, but were, in fact, permanently impaired. The Published by the Health Policy Advisory Center, 17 Murray Street, New York, N. Y. 10007. Telephone (212) 267- 8890. The Health - PAC BULLETIN is published monthly, except during the months of July and August when it is published bi monthly - . Yearly subscriptions: $ 5 students, $ 7 other individuals, $ 15 institutions. Second - class postage paid at New York. N.Y. Subscriptions, changes of address and other correspondence should be mailed to the above address. New York staff: A. Sandra Abramson, Constance Bloomfield, Oliver Fein, Marsha Handel- man, Nancy Jervis, David Kotelchuck, Ronda Kotelchuck, Howard Levy and Susan Reverby. San Francisco staff: Elinor Blake. Thomas Bodenheimer, Judy Carnoy. San Francisco office: 558 Capp Street, San Francisco, Cali. fornia, 94110. Telephone (415) 282-3896. Associates: Robb Burlage, Morgantown, West Virginia; Desmond Callan, New York City; Vicki Cooper, Chicago; Barbara Ehrenheich, John Ehrenreich, Long Island; Kenneth Kimmer- ling, New York City. 1973, 2 schools became larger as fewer students were returned to the communities from which they came. By the 1880's the idea of educating the retarded was rejected and schools became asylums. The Rome, New York Custodial Asylum for Unteachable Idiots was open- ed in 1893, with the governor pronouncing his benediction: " Give them an asylum, with good and kind treatment; but not a school. A well - fed, well cared - for idiot is a happy creature. An idiot awakened to his condition is a miserable one. " (The governor did not explain how an " un- teachable " could be " awakened " to his condition.) The conditions in these insti- tutions are not described, but for a brief period the rhetoric accompanying the care of retarded people was dripping with benevolence. A writer of the time waxed on: " Here and there, scattered over the country, may be'villages of the simple, ' made up of the warped, twisted, and incor- rigible, happily contributing to their own and the support of those more lowly- ' cities of refuge,'in truth; havens in which all shall live contentedly, because no longer misunderstood nor taxed with ex- tractions beyond their mental or moral capacity " (1885). This period of benevo- lent paternalism came to a quick end in the early 1900's, but only after many large and remote institutions were " scattered over the country. " Sterilization and Segregation As immigrants by the thousands came into the cities, the political and social climate changed. Philanthropists and leg- islators, among others, seemed to be over- whelmed by nationalistic ambitions and racist fears. The retarded, insane, poor and " different " all came in for undifferen- tiated hatred and damnation. All sorts of social inequities and repressive policies were justified by the atmosphere of laissez - faire economics and Social Dar- winism. Alexander Johnson, president of the Na- tional Conference on Charities and Cor- rection (now the American Association on Mental Deficiency), was one among many civic minded advocates of " final solu- tions " to retardation: " I do not think that, to prevent the propagation of this class it. is necessary to kill them off or to resort to the knife, but if it is necessary, it should be done. " Based on false notions of inherited mental and moral traits, ster- ilization became widely proposed, as necessary to " conserve the mental virility and moral integrity of the race. " The American [Cattle] Breeders Association which became the American Eugenics So- ciety, propagandized for selective breed- ing. State after state passed preventive marriage and compulsory sterilization laws. It is not known how many people were sterilized, but the idea was soon dropped as impractical. According to Stanley Davies, head of the New York State Charities Aid Associ- ation and author of the classic history of retardation (Social Control of the Men- tally Deficient), " segregation became the most practicable and acceptable means of control. " The advisability of segregating the retarded gained in popularity when a study of a much beleaguered - family, the Kallikaks, was released in 1914. Research into this family's history, it was believed, proved that mental retardation and moral degeneracy were linked and were inher- ited. Bad blood would affect countless gen- erations and would spread geometrically throughout the race. NOTICE Health / PAC is changing We have a new face, as you can see. We have also changed our publica- tion schedule. In order to provide you with a more comprehensive analysis of health issues we are publishing eight Bulletins per year: January, Feb- ruary, March, April, May, September, October and November. To meet the expressed need for popular material, we will publish three special reports in pamphlet form during the year. A reminder: Effective January 1, 1973, subscriptions to the Health / PAC Bul- letin are $ 15 for institutions. Student rates and individual rates continue to be $ 5 and $ 7 respectively. New York State was quick to respond to the threat of hordes of retarded that was conjured up in the public mind. Citing " the well known propagating tendency of the feebleminded, " the State Commission to Investigate Provisions for the Mentally Deficient declared that there were at least 21,000 persons who needed immediate segregation. " The mentally defective man or woman at liberty constitutes a serious menace to the State. " The State Charities Aid Association supported segregation as " the only means of protecting the public not only from the moral menace of the feebleminded but also from the danger of murderous assault, arson and crimes of sexual perversion. " By the 1920's New York was well on its way toward estab- lishing its present complement of State Schools. 3 Now, however, little thought was given to the happiness, comfort or education of the residents. Segregation was, in ef- fect, advocated because sterilization didn't work and murder was somehow out of the question. Considerable thought was given to cost. The per capita cost of care plum- meted. Institutions which had budgeted several hundred dollars a year for the care of each resident now attempted to get the per capita cost under $ 100. Fernald, an influential leader in the devel- opment of State Schools in Massachusetts, realized that " the cost of housing them must be reduced to a point where it can- not be criticized by the business man and the taxpayer. " Residents were put to work for little or no pay and what is now re- ferred to as " institutional peonage " be- " It is true, that the plea of ignorance can be made in excuse for the neglect and ill treatment - which they have hitherto received; but this plea can avail us no longer. Other countries have shown us that idiots may be trained to habits of industry, cleanliness, and self respect. .-. . " -Samuel Gridley Howe 1848 came common. Davies noted in his book that one of the advantages offered by farm colonies was an " answer to the ques- tion frequently raised as to whether the segregation program is not creating an aristocracy of the feebleminded, housed as many of them have been in costly buildings, and waited upon by paid at- tendants. " This was written in 1930! During the Depression and war years out and - - out hostility toward the retarded diminished, but no new forms of treat- ment were developed. Instead, more schools were built by the Works Progress Administration (WPA) and the bureauc- racies controlling the state programs be- came more entrenched and short sighted - . 4 In 1950, the National Association for Retarded Children (NARC) was founded. This group, with its state and local affili- ated chapters, was the first significant or- ganization of parents and friends of the retarded. NARC has tried to remove the stigma associated with retardation and it has encouraged public discussion and education on the subject. And while NARC has lobbied to improve conditions in state schools, its most important function has been to sponsor community services for the retarded. These services are the only alternatives to the degradation and pain of confinement of the state school system. In an area where few people are ac- tive or concerned, even a weak organiza- tion can become powerful. This has hap- pened to NARC in the area of community services. NARC affiliates and several other small local organizations now control all the community options as the states con- trol all custodial options for the retarded and their families. These options can in- clude day care, special schools, family counselling, sheltered workshops, and rec- reation programs. Recently some residen- tial services, such as hostels and group homes have been initiated. These services are, by and large, oriented toward the middle class; they are random and discon- tinuous; they serve the least retarded; and they focus on children, rather than adults. In all, only five percent of retarded people benefit from community services. Privately initiated and privately oper- ated community services grew up in the vacuum created by public indifference and hostility toward such programs. They have, in effect, taken government off the hook, although they now operate largely with public funds. A symbiotic relation- ship has developed between the private organizations and government; as a result, the organizations have become close, friendly and less critical of the public bureaucracies and more removed from their parent roots. This form of privately- run, publicly - funded service received a large boost under the Kennedy Adminis- tration of the early 1960's. Kennedy and National Policy John Kennedy was the first popular figure to openly discuss retardation, as it had affected his family through his re- tarded sister. Until he became President there was no federal program which ad- dressed itself to the issue of mental retar- dation. In 1961, Kennedy appointed the President's Panel on Mental Retardation. Its report, " A Proposed Program for Na- tional Action to Combat Mental Retarda- tion " dealt with research into the causes of mental retardation, prevention through maternal and infant care, and so forth. The Report stressed community services and recommended that no residential insti- tution for the mentally retarded should accommodate more than 1,000 people and that no new facility should be planned for over 500 residents. While ( most states have followed this advice, New York has been a notable exception.) Kennedy and his family performed a valuable educa- tional service by discussing retardation eral government significant influence in mental retardation policies, but it did not give the states and localities significant amounts of money to deal with the issue -nor in fact did they choose to. The amount of money authorized was indecent -only $ 203 million for retardation facil- ities and programs for the entire nation. To compound the indecency, by 1969, only $ 137.4 million of this money had been The Economics of I.Q. The emphasis of early psychologists such as G. Stanley Hall and Alfred Binet on the development and measurement of intelligence made mental retardation a natural area of study for the burgeoning field of psychology. In fact, the first intelligence tests were developed at the beginning of this century by Binet as a way of identifying and sorting out students who could not be expected to benefit from traditional education. Mental deficiency or " mindedness feeble -" was de- fined as an IQ of less than 75 and was divided into three grades based on IQ: idiot 0-24 ( IQ), imbecile (25-49 IQ), and moron (50-69 IQ). These classifications were in vogue as late as 1964. A standard introductory psychology text, Principles of General Psychology by Kimble and Garmezy (1963) gave the following description of the behavioral characteristics which were taken from British legal definitions: " Idiots... are often incapable even of feeding and clothing themselves. Imbeciles can be taught these simple skills and may learn to do a certain amount of manual labor. The moron group can usually master the skilled semi - occupations and need protection mainly in managing their affairs. " The presently accepted classification of levels of mental retardation, devel- oped by the American Association on Mental Deficiency, purports to be much more scientific and descriptive than the earlier categorizations of idiot, imbecile, and moron. It is still based on IQ scores and is described by a National Insti- tutes of Health pamphlet as: OE Profound retardation (0-24 IQ): " person requires care for all bodily needs; " OE Severe retardation 25-39 (I Q): " person is unable to learn reading and writ- ing but is capable of some useful work; " OE Moderate retardation (40-54 IQ): " person has some earning power but needs much supervision and protection; " M@ Mild retardation (55-69 IQ): " person has ability for self support - with some supervision; " OE Borderline retardation (70-84 IQ): " person is able to support himself with little or no supervision. " This category used to be called borderline intelligence! (Emphasis ours.) What is evident from these descriptions is that IQ is a measure of economic performance and productivity, not a " pure " measure of intelligence. openly; in February, 1963, he addressed Congress on the taboo subject. He stated that " services to both the mentally ill and the mentally retarded must be community based " and that Federal money ought to be used " to stimulate State, local and pri- vate action. When carried out, reliance on the cold mercy of custodial institutions will be supplanted by the open warmth of community concern and capability. " Congress responded by passing the " Mental Retardation Facilities and Com- munity Mental Health Center Construc- tion Act of 1963 " which Kennedy signed into law only several weeks before he was murdered. This legislation gave the fed- spent of this only $ 61.5 million went to community facilities since the legislation did not require retardation programs (un- like mental health programs) to be com- munity based. So much for the " open warmth of community concern! " Annual appropriations for mental retardation were subsequently dropped. Developmental Disabilities Act In 1969, Congress passed the Develop- mental Disabilities Act authored by Ted Kennedy. This act deals with mental re- tardation as one of several " develop- mental disabilities " (diseases or injuries of the central nervous system). Accord- ing to Gunnar Dybwad, a noted scholar in 5LO the field of mental retardation, this " per- verted the concept of developmental dis- abilities into an administrative mechan- ism through which money for mental retardation must now be shared with cere- bral palsy and epilepsy. " Some mental from society was so urgent that the state took on the entire cost also localities - have not had to pay anything for this service. The rationale for institutionalization has long since vanished, but the institutions " It appears... that a relatively high level of access had been achieved by the Association (NYARC) with the Bureau of Mentally Handicapped Children for the Division of Handicapped Children in the State Education Department. For the Association, as the largest supplier of the newly state financed - services, the relationship was one of cooper- ation and compromise rather than strict enforcement of regulations too stringent for NYARC chapter school compliance. " -Herbert J. Lerner in State Association for Retarded Children and New York State Government, 1948-1968 retardation professionals claim that as pal- try as federal contributions to retardation programs were before, that now that funds must be shared, the federal contribution is even less. Thus fighting among the various disabilities interest groups, like NARC, will be even greater. In all, the federal government spends $ 585 million on mental retardation; more than one third - of this is through Social Security. This is an astoundingly insignif- icant amount of money when one realizes that New York State annually spends $ 111.6 million on its money starved - State Schools alone. Despite the rhetoric of federal programs, it is obvious that the real action in retar- dation comes from the states. New York is illustrative of most states in that it is primarily interested in managing unman- ageable custodial institutions. To the ex- tent that the brutality of these schools is ex- posed, the state pays the voluntary agencies to run community services. New York and the State Schools New York, like other states, took on the entire responsibility over one hundred years ago, of caring for its communities ' mentally retarded inhabitants. A massive system of State Schools has grown up to ensure the segregation of over 25,000 peo- ple. The demand to remove these people 6 remain and, in fact, grow. In 1967, the State opened Suffolk State School for 1,780 residents and it added 12 new build- ings at Willowbrook. More recently, it has opened three more schools (Kings County, Syracuse and Oswald D. Heck) each of which has more than 750 res- idents. Only an estimated one tenth - of the retarded population needs a totally shel- tered residential environment. Yet the New York State Department of Mental Hygiene spends over 24 times as much on institutional services as it does on par- tially sheltered services in the community (171.6 $ million as opposed to $ 7 million). By the State's own statistics, 8,000 mem- bers of the State School population could leave these institutions immediately- another 5,000 could leave with transitional rehabilitative help - and yet in 1968 when the " Study on the Appropriateness of Con- tinued Institutionalization " was done, there were community services for only 2,180 of these people. Thus while one half - of the school residents could be freed, the State Department of Mental Hygiene concluded that " 9 out of 10 persons. required continued institutional residency. " That same year, the State had nine new State Schools in the design stage. There are a number of important factors which maintain and expand New York's institutional emphasis. There is a bureauc- racy of psychiatrists and administrators which has a vested interest in the schools. It remains influenced by old ideas and im- pressed by the power and size of institu- tions. (Some have been proud that Wil- lowbrook is the largest of its kind in the world.) As with the remote mental hos- pitals and prisons, entire towns are eco- nomically dependent on the Schools and their upstate legislators dominate State politics. The State is notoriously influenced by the construction industry and union lobby; Rockefeller is especially known for large building projects with little or no programmatic content (the edifice complex). Lastly, because the State is wedded to its institutions, there exists no alternative to institutional care. So thou- sands of families must add their relatives Where the Money Goes Most New York State mechanisms for funding and developing community services are not under the control of the Department of Mental Hygiene (DMH). But, like Local Services which is under DMH, they use State and Federal money to fund private agencies which provide community services. This, in effect, frees local governments, particularly local school boards, from having to provide public State mandated - programs for the mentally retarded and physically dis- abled. It also has the effect of segregating these people from the larger com- munity. What has happened is that the programs which have been developed provide only for the mildly, moderately, and less severely retarded child and adult. The only alternative for most severely and profoundly retarded indi- viduals is still the State School. @ Developmental Disabilities: The Developmental Disabilities Council ap- pointed by Rockefeller doles out New York's allotment of Federal money under the 1970 Act to local agencies, primarily private ones. In 1971, more than one- half of their $ 760,000 budget was used on construction. By 1971, New York's share had increased to $ 1.4 million, all of which was used for services. The small amount which was funnelled to public agencies went to local Boards of Cooperative Education Services (pronounced BOCES - " sees bo - "). The State estimated that the 110 project requests for Developmental Disabilities money totalled $ 13 million in 1971. @ BOCES: These boards were developed by the State Office of Education to get individual communities off the hook of having to provide special services in their public schools to a small number of retarded and multiply handicapped children. It has developed into a technique whereby small urban and suburban communities band together to provide segregated, specialized public facilities. A dual system has evolved which is financially advantageous to the local school boards but educationally and socially disadvantageous to the handi- capped child. OE Greenberg Law: Section 4407 of the State Education Law, otherwise known as the Greenberg Law, provides $ 2,000 tuition subsidies for the private education of retarded and multiply handicapped children when a local school board has demonstrated that it has no adequate public facilities for these chil- dren. It was originally intended only for use by unusually physically handi- capped children in out state - of - facilities. In 1966, the New York Association for Retarded Children (NYARC) successfully lobbied to have the law apply to the mentally retarded and to private New York facilities as well. As a result, the budget for 4407 has expanded from $ 10,000 in 1960 to nearly $ 14 million in 1972, all of it State money, much of it going to local AHRC facilities. OE Family Court Act 232: While 4407 pays only for tuition and has a per capita maximum of 2,000 $ , Family Court Act 232 (also known as Section 4403 of the State Education Law) provides funds for maintenance, transportation, home teaching, and tuition. Because of the absence of stringent regulations, it is often used to supplement 4407 funds. In contrast to 4407, there is no maximum per capita allowance and the city or county of residence must, in most cases, pay 100 per cent of the cost as determined by the Family Court. Also in contrast to 4407, facilities receiving this money do not have to be approved by the Office of Education. It is not clear how much of the money directed to be spent is actu- ally spent. For example, in New York City the City Comptroller has refused to release funds for these purposes. 7 to the school waiting lists, proving in the State's view, the overwhelming demand for yet more State Schools. New York and Community Services Despite New York's huge investment in its institutions, recent publications by the Department of Mental Hygiene flaunt its new community approaches. Most of these are administrative in nature and in- volve no new programs and not much money. In fact, while the Department of Mental Hygience has direct responsibility for retardation, it spends less for com- munity services than do other state agencies which are only tangentially in- terested in the subject (such as Social Services or Education). The money that it does spend on community services goes to private voluntary agencies, under a pro- gram called Locally Operated - State Aided Programs. In 1971, the Department spent $ 7 million on Local Services. These funds were matched 50-50 with city and voluntary agency funds to support, along with fees, 198 community programs reaching over 25,000 people. The State's $ 7 million share goes to pay for services which reach the same number of people as are served in institutions at a cost of $ 171.6 million. In all, only 10 percent of the state's retarded population is affected by Department of Mental Hygiene programs. In mental re- tardation, as in other areas, the public sector ends up spending too much to run the wrong thing badly, while it gives a little money to the private sector to do the right thing badly. As a result, public man- agement is completely discredited and the solution appears to be to provide unac- countable private management with more money. However, very little public control or direction goes along with the money. The funds are allocated through the Com- munity Mental Health (and Retardation) Boards which were established in most states following the Federal community mental health legislation. The Boards are usually composed of representatives of social and mental health agencies, both public and private. In New York City, the Board was so controlled by voluntary agency interests that considerable public pressure forced it to be disbanded. It was replaced by the weak Department of Mental Health and Mental Retardation, which one well placed - observer charac- terized as " an erand boy... a'nothing ' among agencies... which doesn't do a damn single thing for a human being in direct services. " The Bureau of Mental Re- tardation is the part of that department which runs errands for the mental retarda- tion agencies. This year the Bureau is bringing 4 $ million down from Albany 00 which it is giving to 35 voluntary agencies for community service contracts. While the Bureau is supposed to con- duct compresensive planning, contract su- pervision and new program development, it is in an extraordinarily weak position to do these things, and does not seek to take an aggressive or independent role in men- tal retardation services. It has only four staff persons which means that there is no one to even supervise contracts in Queens or Staten Island. The planning process originates in Borough advisory groups which are primarily composed of volun- tary agencies and are usually dominated by one or two of the largest. Plans are forwarded to the Bureau, which is sup- posed to be advised by another advisory council of agencies, citizens and com- munity groups. This council does not exist, so the Bureau meets with an ad hoc Ad- visory Council composed only of the con- tracting agencies, without even one con- sumer or community representative. One long - time observer of the mental retarda- tion scene characterized most agencies as " bureaucracies run for the benefit of ad- ministrators; using largely public funds to operate what amounts to private busi- nesses and taking care of only the easier people. " Even the Bureau's Annual Plan (draft) acknowledges the agencies'control and biases: " To an extent, mental retardation services continue to spring up not on the basis of an objective evaluation of unmet needs, but rather on the basis of a par- ticular agency's specific program or re- search interest. " Until recently, the agencies were not even held to providing services within their own geographic areas. For example, only 25 percent of the money given to agencies in Manhattan was spent on Man- hattan residents. This reflects the agencies ' ability to discourage poorer parents and families of the wrong racial or religious background from using their services. In poor neighborhoods, where there are no voluntary agencies (or those that exist serve another population) there have been no services. The Bureau will not run its own pro- grams; and thus it will not take the one step which could both meet the needs for new kinds of community services and put pressure on the agencies to be more re- sponsive and responsible. The Bureau's strong private agency orientation is not surprising since its Director, Ted Lucas, was previously director of the New York City Association for the Help of Retarded Children. He believes that " good business management " indicates that " the City shouldn't run any programs. " While Lucas describes his Bureau's function as " catalytic, " it may just as easily be community services are shared by the described as supplicant. To get new ser- State, 50 percent; City, 10 percent; and vices started, Lucas uses a tactic called private agency fund raising, 40 percent. " gilting the carrot any way we can. " Under Unified Services, shares will most This means that the Bureau writes up a likely be divided as State, 80 percent; the description and plan of new services, City's 10 percent will probably remain the gives it to the agency which has to do same (because it now only amounts to a little more than fill in the blanks, and then stingy $ 500,000); and the voluntary fund- funds it. " If it needs 100 percent funding, raising will drop to 10 percent. While the 1 then we'll get it for them. " agencies are chided for their unsophisti- Agency Bonanza cated fundraising techniques (one pro- Soon the agencies will have access to gram director complained that all his " If we are unable to form a coalescence between our bricks and money, on the one hand, and our philosophies and practices, on the other, I know that the community centers planned for our future will differ from current ' human warehouses'only in size and, for awhile, in smell- but not in the per capita harm they will promote unwittingly and the wasted lives they will not be able to salvage. " - Burton Blatt Exodus from Pandemonium even more public funds. In the near future, the legislature is likely to pass the Unified Services Bill which it is hoped will encour- age the development of community - based services and discourage local reliance on institutional non solutions - . Essentially, the bill will establish a formula in which local- ities will have to start paying about 20 per- cent of an individual's institutional care, rather than not being at all responsible for it; the State, for its part, will up its contribution to local services to about 80 percent of the cost. This double incentive to the local units of government may over- come some of the traditional hostility to maintaining retarded people in society, but it does not address itself to other as- pects of the problem. There is the obvious lack of assurance that the total State budget for both forms of retardation ser- vices will increase. Also, while existing community programs will receive more State funds, the creation of new services will be left to chance and local inclination. However, for the local agencies, almost all of which are private voluntary organ- izations, it is clear that Unified Services will yield a bonanza. For example, in New York City the present costs of agency - run agency did was " have Bingo parties and go stand in Port Authority with donation cans one day a year "), it is startling how well these agencies have fundraised in Albany. When their receipts from pub- licly supplied - fees (see box, Page 7) are added in, the voluntary agencies will be receiving well over 90 percent of their budgets from public sources. Politics of Community Care Community care is becoming an in- creasingly popular notion as exposs like the Willowbrook State School scandal make it more and more difficult to justify institutionalization as a beneficial or civil- ized treatment for mentally retarded peo- ple. Reformers in the field are turning to the Scandinavian countries where retard- ed persons receive almost utopian ser- vices when compared to their peers on this side of the Atlantic. Denmark and Sweden have had national programs since the 1950's which provide public services to the retarded in communities. The com- prehensive services (housing, recreation, education, etc.) are designed to integrate the retarded person into the fabric of so- 9 ciety as much as possible. Similarities, rather than differences, are emphasized; this means that when an individual's handicaps prevent him or her from living in a " normal " environment, a special en- vironment (whether it be work, home, or play) is " normalized " as much as pos- sible. Services are continuous, as well as comprehensive, so that public programs can assist the retarded person and his family from cradle to grave. In this country, however, treatment of and local public agencies have virtually no interest in or experience with the re- tarded. Lastly, although community ser- vices are relatively new in this country, they are tending to become segregated services already. Integration and normal- ization, while talked about, have not been put into practice widely. This is the result of the private, charity orientation of the retardation agencies, which have to fight each other, the other special handicap charity organizations, and " normal " so- Progress: 1848 to 1972 Dorothea Dix 1848 "... I was conducted into the yard, where a small building of rough boards was imperfectly joined. Through these crevices was admitted what portion of heaven's light and air was allowed by man to his fellow - man. The shanty or shell enclosing a cage might have been 8 or 10 feet square. ... It was very cold. The air within was burdened with the most noisome vapors, and desola- tion with misery seemed here to have settled their abode.... The person who conducted me tried with a stick to rouse the inmate. I entreated her to desist, the twilight of the place making it difficult to discern anything within the cage. There at last I saw a human being, partially extended, cast upon his back, amidst a mass of filth, the sole furnishing, whether for comfort or necessity, which the place afforded. " Suit Against Willowbrook State School (1972) The school is sued for " barbaric restrictions " which amount to " cruel and unusual punishment " - " Placing residents in locked solitary isolation rooms for extended periods of time. At the present time at least 11 residents are confined almost continuously, many of them nude, in locked, solitary isolation rooms that have no sinks or toilets, no sheets or blankets, and no furnishings other than a vinyl mattress. At least five of those residents have been continuously confined in seclusion for more than one year, and at least three have been continuously confined in seclusion for more than five years. Tying or strapping residents to their beds or chairs for substantial periods of time, or restricting their movements through the use of straitjackets and similar devices. Confining residents to locked wards and buildings. " New York Times, November 19, 1972 " The Pennsylvania State police are investigating the operations of two homes for retarded children. * The state police announced recently that the deaths of thirteen children from May, 1959 to November, 1961 were " suspicious. "... Mr. Reilly [operator of the homes and father of a retarded child] faces a murder charge as a result of the death of one retarded youth, Frank Dickerson, 23, from pneumonia allegedly caused by his being forced to stand naked in the snow as punishment for trying to run away. " " x the retarded has developed in an alto- gether different way. First, there is neg- ligible Federal commitment to provide any form of program to the retarded. States took on the burden of the responsibility and they have carried it out by building large, dehumanizing, isolated institutions. Secondly, the impetus for developing community services has come from an- guished families and friends of the re- tarded. As a result community services are private and oriented to the middle class. Almost all public funds for com- munity services go to private agencies 10 ciety for the miniscule expenditures which go to people with special needs. Burton Blatt, director of the Center on Human Policy at the University of Syra- cuse has observed that, without changes in attitudes and values, community ser- vices "... planned for our future will differ from current'human warehouses ' only in size and for a while, in smell - but not in the per capita harm they will pro- mote unwittingly and the wasted lives they will not be able to salvage. ' -A. Sandra Abramson and Constance Bloomfield WILLOWBROOK: FROM AGONY TO ACTION The story of America's institutions for the mentally retarded is a story of neglect, abuse and superstition reminiscent of the Victorian era for which they were named: Creedmoor, Belchertown, Letchworth, Wil- lowbrook. Occasionally the spotlight of public attention pierces the gloom of these human warehouses and the public mo- mentarily recoils with shock and pity. Soon after, public officials, politicians and commentators, exhausted by their own rhetoric, steal away and the institutions return to the backwaters of public priority, out of the sight and mind of all but those who must live, work, or maintain their relatives there. Last year the spotlight focused on Wil- lowbrook State School for the Mentally Retarded on Staten Island, the largest such institution in the country. But unlike the past, this time a movement of parents, relatives, friends and workers has devel- oped which may disrupt this weary ritual and possibly alter the entire system of ser- vices to the mentally retarded in New York State. During the winter of 1970, New York State slashed its budget and froze all hir- ing. These cutbacks hit hardest at New York's schools for the retarded where staff turnover is normally high. At Willow- brook, they threatened to push conditions beyond the already strained - limits of toler- ation. At that time Willowbrook housed 5,268 residents - 500 more than its rated capacity and 1,800 more than its suggest- ed capacity. Willowbrook clasified 77 per- cent of its residents as " severely or pro- foundly retarded " (see classification, Page 5); 60 percent as not toilet trained; 76 percent as unable to dress themselves; 30 percent as having a history of seizures; and 70 percent as having " behavior prob- lems. " Like many of New York's schools for the retarded, Willowbrook looks like a se- cluded, well groomed - , pleasant college campus from the outside. Most of the school was built during the late thirties and 27 sturdy brown brick residential buildings together with a school, adminis- tration building and staff quarters dot its 380 bucolic acres. On the inside however, Willowbrook is quite another story. Conditions there are so bad that officials admit that it does not meet licensing standards for State institu- tions or those for privately - operated facil- ities. Most residents sleep in barrack - like quarters with 60 to 100 identically - made beds lined up in rows, sometimes as little as six inches apart. There are no night stands, chests or other furniture. Residents own few, if any, personal possessions and there is no personal touch to break the barrenness and uniformity. Occasionally large cutout letters displayed across the wall of a ward cruelly proclaim (to peo- ple who cannot read): " This is your home. Keep it clean. " Developmental programs of any kind are virtually non existent - at Willowbrook. Only 13 percent of the school age chil- dren and four percent of the adults receive any kind of schooling; only 37 percent of the residents participate in recreational programs; only 10 percent receive speech development programs; and only six per- cent receive physical therapy. Even these figures, supplied by Willowbrook officials, are deceptive. For instance, they do not reveal that the physical therapy program, esential to prevent irreversible paralysis in many residents, is staffed with only one 11 licensed physical therapist. Without programs, most residents spend their days milling, lurching, rocking, moaning and sleeping in dayrooms fur- nished only with rows of hard benches and a TV set. On the wards for babies and young children, not a single toy is in evi- dence and children can be seen playing The spirit of hopelessness and demoral- ization engulfs not only the residents, but the staff as well. On a normal day ten percent of Willowbrook's 2900 employees are absent. Overall staff turnover is 30 percent a year; turnover among staff giv- ing direct patient care is much higher. At the time of the hiring freeze, the staff was Into the Courts Legal initiatives on behalf of mentally handicapped persons are setting important precedents and within the last year include: @ The Right of the Mentally Retarded and Mentally Ill to Adequate Treatment - In the case of Wyatt v. Stickney, the Federal District Court in Alabama ruled for the first time that the institutionalized mentally ill and mentally retarded have a constitutional right to adequate treatment. The court found that treatment at Bryce State Hospital was inadequate and in an emergency order, forced the State to fire proof - buildings, control drug distribution and hire 300 new employees within thirty days. With the assistance of expert witnesses, the court established minimal standards of care which the State must implement: minimal staffing standards; minimal nutritional standards; detailed physical standards; evaluation of residents; habilitation plans and programs: provision for a Human Rights Committee; and a number of measures to ensure a " humane psychological environment. " The State is presently appealing this decision. Recently the federal court in New York ruled that individuals running an institution could be held personally liable for not providing adequate treatment. The plaintiff, Donaldson, who had been confined 15 years without treatment, won $ 38,500 in damages from the superintendent and chief psychiatrist of the institution. The case is being appealed. The Right of Retarded, Emotionally Disturbed and Other Exceptional Children to Free Public Education - In case of Mills v. the Board of Education, the latter conceded that it was violating a District of Columbia law requiring it to " provide a publicly supported education for each resident of the District of Columbia who is capable of benefitting from such instruction. " Virtually every state has a similar law. The Court also required the Board of Education to make a special outreach effort to identify all children in similar situations and to offer its services. @ Protection From Involuntary Servitude - In the first case ever to challenge " institutional peonage, " Mrs. Dale, a former mental patient, is suing for dam- ages for pain and suffering and for violation of 13th Amendment protection against involuntary servitude. Expert witnesses testified that there was no evidence that Mrs. Dale's 16 years of work in the laundry, kitchen and in various janitorial capacities was part of any treatment plan, was tailored to her needs, was compensated, or was even noted in her records. Rather, they testified, it was clear that the work was done for the benefit of the institution and not the patient. The case has been heard and the outcome is being awaited. for hours with a piece of thread or fleck of dirt. What all Willowbrook residents do most and best is wait. At ten in the morn- ing they are " waiting for lunch. " At two in the afternoon, they are " waiting for sup- per. " Everyone, including the residents. themselves, knows that they, like the resi- dents of many old age homes, are waiting for nothing, except possibly death. The difference is that Willowbrook residents are five, fifteen or thirty - five years old, not eighty. 12 already 300 short. Then, during the next year Willowbrook lost 650 more em- ployees, until in many areas the number of vacant positions exceeded the number of actual staff. Typically, total care for a ward of 50 to 60 residents would rest on two attendants. In wards where residents are totally disabled, the task is mind- boggling. " It's easier to clean up the floor than it is to try to diaper them, " com- mented an attendant in such a ward. Often attendants are forced to feed resi- dents in as little as three minutes apiece. Under circumstances like these, it is all attendants can do to provide for the most elementary of human needs. " With the hiring freeze we could see conditions deteriorating before our very eyes, " commented one parent. With fewer staff filth accumulated; illness rose; acci- dents, incidents of self abuse - and attacks by other residents soared; the death rate, particularly due to choking, jumped 30 percent; and more than ever, the institu- tion had to rely on seclusion, physical restraint and drugs to control the residents. On top of this, the State continued to ad- mit new residents. Parent Organizing At this point, several professionals on the Willowbrook staff began organizing parents, using as an entry their access to information about conditions at the insti- tution and the parents'complete lack of it. " We were blind, dumb and ignorant, " commented the mother of a twelve - year- old boy. " We would come on Sunday af- ternoons and wait in the reception area until an attendant brought our child. We never saw the wards or the living condi- tions behind those reception areas. " If a child appeared with a gash or extensive bruises, as they often did, parents were told they must speak with the supervisor or doctor in charge to find out what hap- pened. Of course, the particular doctor or supervisor was virtually unavailable on Sundays, and when parents finally did. track them down, a standard reply was ready: " We don't know what happened, " or " He fell down. " Questions about why a child was transferred from one building to another or what programs he was receiv- ing were always answered in the vaguest possible terms. " Whenever we tried to ask questions, we were treated coldly. We were told that we were ignorant - they were the professionals. If we pressed to get our child into a program, we were told that he was too retarded to benefit and that he would only be taking the opportunity away from some who could. Most parents were afraid to make too much of a fuss ' for fear the staff would take it out on their children. After a few months or years, you come to accept this. " The first steps in parent organizing were simple. Mike Wilkins, a doctor, and Elizabeth Lee, a social worker, set up office hours in one building on Sunday afternoons and informed visiting parents and relatives that they were available for consultation. Here they gave parents their first glimpse of the real situation at Willowbrook. " Yes, your son was beaten up by another resident; there was only one attendant on duty that night for 60 residents. Or, " Yes, of course the officials told you your daughter is in physical ther- apy. What they failed to tell you is that Willowbrook has one licensed physical therapist for all its 5,200 residents. " Out of the dismay and rage kindled by discovering the truth about Willow- brook, some parents began to meet regu- larly at the building level, to pool their experience, knowledge and frustrations and to discuss what they could do. Each building is a world unto itself, and it is here that parents could deal with the many immediate and concrete problems affecting their children. In the beginning, building organizations had to deal with the pervasive guilt that haunts all parents of retarded children- guilt at having produced a " defective " child, guilt at having to put the child in a place like Willowbrook. " Parents of re- tarded children aren't like other parents, " commented Diane McCourt, one of the most active parent organizers. " When they come to visit their child, they run right in to get him and run right out again, looking at the floor the whole time. They don't go near each other on the grounds, and if they are sitting together at a play- ground, they don't talk to each other. They are embarrassed. " She described typical parents of the past as either " those who are passive, who feel God has given them a difficult lot in life and their role is to bear it quietly; those who have made their niche perhaps - by buttering up a supervisor or talking with an attendant- and who feel they have something to lose; or those who are angry, but are fighting on their own and don't see the need for relating to others. " Of the parents who have become active, many are the young ones who have not yet been ground down by the inhuman- ities of Willowbrook. The building organ- izations took on the most immediate complaints - beatings, injuries, filth, un- explained transfers, lack of clothing, lack of programs, etc. The elected captains who could collect and relay information as well as take action between meetings, call meetings and formulate agendas. They also established a grievance com- mittee which relieved the fear of reprisal inhibiting individual complaints. As the parents organized, they began to hold large meetings and demonstrations which focused public attention on Willowbrook. Concerned groups both inside and out- side the institution became involved, and a local newspaper began a series of ex- poss of conditions at Willowbrook. As with so many " total institutions, " Willowbrook could not tolerate the pub- lic eye. Willowbrook Director Jack Ham- mond summarily fired Mike Wilkins and 13 Elizabeth Lee, both of whom were pro- visional employees, for organizing parents and speaking with the media. He further forbade all Willowbrook employees from speaking or meeting with parents without his permission. This escalated the conflict and resulted in a full scale - national expos of Willowbrook. The day after he was fired, Mike Wilkins led Geraldo Rivera of ABC - TV into the back wards of Willow- brook. For the next several weeks New York residents viewed the plight of Wil- lowbrook residents on the evening news. Eventually it was featured nationally on an hour - long news special, as well as on the Dick Cavett Show. This further galvan- ized concerned groups and put the Wil- lowbrook administration and the State Department of Mental Hygiene on the ex- treme defensive. Unfortunately, it also polarized relations between parents and workers at Willowbrook. Worker - Parent Conflict Willowbrook has traditionally handled dissatisfaction both among workers and among parents by exploiting their natural differences and setting one against the other. Attendants are always the first targets of parent anger and frustration, for it is they who are present, visible, and seemingly responsible for the misfortunes that befall the residents. This natural prejudice is often confirmed because the impossible conditions under which they work soon causes indifference and uncon- cern on the part of many workers. More- In " 1966-67 per diem costs over the country (excepting Alaska) ranged from about $ 14 3- $. In contrast, five of the largest zoos even a few years back spent an average of over $ 7 for their large animals. " -President's Committee on Mental Retardation, 1969 over, those who try to fulfill the demands of their job are under such stress that they sometimes react by taking out their frus- trations on the residents. 14 The workers are equally prejudiced about parents. Parents put a child into Willowbrook when they can no longer cope with him at home. " If two parents can't cope with a single child at home, what do they expect from two attendants who must cope with 60 such children on a ward, " the workers reason. Many work- ers feel angry that parents have aban- doned their children at Willowbrook and feel they alone are concerned about resi- dents'welfare, receiving support from neither parents nor the administration. Their feelings are substantiated by the fact that the rate of parental abandon- ment is high, particularly as residents grow older. Beyond this, workers feel threatened by parents'demands for better conditions at Willowbrook. They fear it will place an even greater burden of work on them. They also fear the loss of their jobs. Many workers are poor, black, uneducated, older women, and they fear that no other jobs are available for them. They fear that the " upgrading " of Willowbrook, were it ever to happen, would squeeze them out. Even worse, they fear the clos- ing of the institution. There are attendants who are dedicated and whose efforts go far beyond the call of duty. Were it not for them, many feel Willowbrook would collapse. When Wil- lowbrook hit the media, it was these workers who reacted most strongly. Not only did no one understand their impos- sible predicament, but they felt they were being blamed for the inhumanity of Wil- lowbrook. Many were embarrassed to ad- mit to friends that they worked there. This made fertile ground for pitting work- ers against parents. After massive public protest of parents and other concerned groups, the Department of Mental Hygiene first agree- ed to reinstate Dr. Wilkins and Ms. Lee. But on the day this was to happen, Wil- lowbrook workers held a large rally and threatened to strike if the two were taken back. Circulated among the crowd and to the press were leaflets accusing Wilkins and other leaders of being Communist- Maoist - Black Panther agitators. Many par- ents believe that the strike initiative, as well as the red baiting - , originated within the Willowbrook administration. The De- partment of Mental Hygiene then used the occasion to renege on its offer, and it has been entangled in a lawsuit over the issue ever since. The lack of worker support seriously hurt the cause of the parents. Many now feel the national publicity was premature and possibly unfortunate. Organizing con- tinues, although on a more sober note and with a longer timetable. There are now organizations in six of Willowbrook's 27 buildings. Parents report that as time passes, worker opposition is relaxing and volunteers, donating equipment, holding " sunshine parties " for residents, and pro- viding a social milieu for its members. It Project Exodus One of New York State's so called - community oriented programs is " Project Exodus. " A direct result of the Willowbrook State School expose, this project, like its name - sake, is designed to get residents out of that particular concentra- tion camp. The recently established - community service units of all the State Schools have been assigned quotas of Willowbrook residents to place else- where ideally - in community - based programs. In this way the State can live up to its promised reduction of Willowbrook's population by 2,000 at the end of 1973. So far 300 people have been evacuated from Willowbrook. Since the project lacks overall coordination and direction, the fate of these residents has been left up to chance and the bureaucratic needs of the State Schools. Although the community service units are supposed to develop and utilize community resources, most of the residents have not been placed in community facilities or programs but simply in other State Schools. For ex- ample, adult residents are being transferred to the retardation unit of Creed- moor State Hospital. In order to get the consent of families who don't want their relatives placed in Creedmoor (known well - as another abominable institution) the name of the unit has been changed to " Glen Oaks. " Manhattan State School (a new facility located in a building once housing Rockefeller's highly publicized, but do nothing - drug treatment program) has been given a Project Exodus quota of 200 Willowbrook residents. However, the new School's function and value other ( than for gubernatorial public relations) has not been settled yet, so none of the former Willowbrook residents are being placed in this facility. Instead, Manhattan State is seeking out community placements. Nonetheless, the School has not been able to place one single person in all of the borough because of the lack of community programs. It has transferred 25 people from Willowbrook and so far all of them have been sent to a private, profit making - residence in the Catskill Mountains (a newly - con- verted summer camp called Cochecton School). One Project Exodus staff person complains that " All of these mild and moderately retarded people are good candidates for true community placement, but now they're being sent off to the boondocks again. Without any follow - up from social workers, they don't have a chance of ever getting back to society. " some ties between parents and workers are being established. One " building captain " reports that workers now seek her out to report difficulties and com- plaints they think the building organiza- tion should take to the administration. 4 Another reports that workers attend build- ing organization meetings from time to time. The Benevolent Society As the situation at Willowbrook heated up, parents began to become active in Willowbrook's official parent organization - the Benevolent Society for Retarded Children, Willowbrook Chapter. " Benevo- lent, " as it is called, is a relatively pow- erful and affluent, traditional, charity- oriented organization which is affiliated with the New York State Association for Retarded Children. In the past, it has been geared to raising money, recruiting has consisted largely of a close circle of long standing - friends who had made their peace with the Willowbrook administra- tion and within limits, using their connec- tions, could " get things done " there. The new parents are, by and large, young and angry and their more militant, human rights approach is in sharp con- flict with the charity orientation - of the older organization. The scenario is a fa- miliar one with new parents charging that Benevolent had been " bought off " by the administration, and old members re- sponding, " where were you back when... " and " you just don't do things that way. " In May, when one third - of the Benevolent Board of Directors was up for re election - , the " new parents " elected their entire slate. Not surprisingly, Benevolent has be- gun to take more militant stands, demand- ing, for instance, that the State provide wheelchairs and other essential equip- 15 ment which the Benevolent Society has traditionally donated. As the official par- ent organization, Benevolent has rights and powers which it is only now begin- ning to utilize. It has access rights to the school and now conducts unannounced building inspections. It has obtained the right for residents to have visitors when- ever they please. It has also achieved the nominal right to have a voice in all im- portant policy decisions concerning the institution. The Legal Offensive Most recently, Benevolent, together with the New York State Association for Re- tarded Children and individual parents (with the legal assistance of the American Civil Liberties Union and Legal Aid So- ciety) have launched a class action suit on behalf of Willowbrook residents. The suit charges the Willowbrook administra- tion, the State Department of Mental Hygiene and Governor Rockefeller with knowingly running a flagrantly inhumane institution, devoid of developmental pro- grams and in gross violation of basic con- stitutional rights of the residents in rela- tion to the State's obligation to provide treatment and care for those who are de- pendent on its institutions. The Willowbrook suit is based on a precedent - setting Alabama case in which the federal district court ruled that the institutionalized mentally ill and mentally retarded have a constitutional right to ade- quate treatment, and that the adequacy of treatment can be established through standards for staffing, physical plant, nu- trition, habilitation programs, etc. The Willowbrook plaintiffs are also seeking massive emergency relief and the phas- ing out of Willowbrook in favor of small, decentralized, community - based services. Affidavits from parents, expert witnesses who evaluated care at Willowbrook, and replies from the State Department of Mental Hygiene provide the most compre- hensive empirical and human account of the situation at Willowbrook. In affidavit after affidavit, parents testified to the re- gression their children underwent upon entering Willowbrook. Children who could walk and talk and who were toilet trained - reverted to babyhood shortly after admis- sion. Parent after parent told of find- ing their children mysteriouly bruised, scratched, burned, having broken bones or deep gashes and having Willowbrook doc- tors deny the condition until parents got independent medical assistance. They told of rampant nakedness on the wards and of being told by attendants not to bring their children clothes, since they would only disappear in the laundry. Parents told of having to submit their child to medical 16 experimentation where children were in- tentionally infected with hepatitis, unless they wanted to wait years to have their child admitted to Willowbrook. " Since all residents are exposed to hepatitis within six months at Willowbrook anyway, " " they were told by Willowbrook officials, " wouldn't it be better for them to get the disease under controlled conditions? " The experts told of finding residents seg- regated in barren, unlighted isolation cells Policy Action Conference Goals... 1. A continuum of services must be available to all persons with spe- cial needs from birth through old age to insure them a dignified and pro- ductive life. 2. The prevention of, or the imme- diate intervention, in any type of handicap must be actively sought through organized programs, begin- ning with family counseling and continuing through all levels of health and education services. 3. Normal living and integration into community life must be the right of every person with special needs and their families. 4. A consolidated agency shall administer all programs, allocate all funds and resources, set standards of care and service, and regulate the quality of all services, and such ser- vices must be guaranteed to meet the specific needs of the individual, regardless of the complexity of the need or the profundity of the han- dicap. 5. The parent and consumer com- munity, with the aid and consulta- tion of professional providers, shall determine policy and priorities in the planning, direction and delivery of services to people with special needs, so that the professionals and techni- cians are fully accountable to the parent and consumer community. 6. The financial burden for ser- vices to people with special needs shall not be solely the responsibility of the individual family, but shall fall upon the state when it exceeds the basic expenditure for a normal child. ... And Proposal A new law would create a State Authority on Disabilities and Human Development and amend all existing laws in the State to end fragmenta- tion, exclusion from services, waste- ful duplication and competition among governmental agencies. The Authority would: OE Act as advocate by carrying on research to improve service, paying for legal aid to protect the constitu- tional and civil rights of people with special needs; educating the public about the needs and rights of people with special needs; establishing a registry of all people with special needs to ensure total planning and services; and overseeing statewide training programs in all present facilities. @ Contract all services to regional centers. The Authority would not pro- vide direct services, but would have money to buy services needed by each person with special needs, ser- vices that are not provided in the general community. Contracts will be renewed only if the services meet individual and collective needs of the people served. A Regional Cen- ter would form the administrative and service hub of a complex of pri- vate and public service agencies needed by individuals that are phys- ically or mentally handicapped. Accountability would be establish- ed in state, regional and area policy and planning boards. These would be independent from the Authority and formed from a broad base of consumers in each community who depend on services. The boards would be no less than 60 percent con- sumers not counting concerned cit- izens, public officials and agency representatives. These boards would analyze the needs in their communities, develop a plan each year or two and set pri- orities for all services relevant to peo- ple with special needs. The State plan would be based on regional plans which in turn would be based on area plans. These boards, at each level, would have the power to ap- prove, veto or recall officials, and would have veto power over major policies set by the Authority, if they were not in the public interest or spirit of area, regional and State plans. sometimes for years at a time; of finding residents in physical restraints or tied to beds and chairs; of finding 75 to 95 per- cent of the residents on some wards heavily drugged. They reported seeing wards of physically handicapped children who spend day after day and year after year packed two and three together in cripple ' carts, " lining the walls of the ward. Every expert told of a particular child with hemophilia who lies in a hos- pital bed with all four limbs tied down because no one can provide the kind of attention he requires. Bill Bronston, a Wil- lowbrook doctor and one of the leaders in the parent struggle, told of filling out death certificates for children who need- lessly choked on food because no one was around to save them. The testimony is heart rending - , shock- ing and revolting. What's more, the State does not refute its accuracy. In fact, formally parents and the State claim there is no philosophical difference be- tween them. Both agree that " normaliza- tion, " small decentralized, community- based services, integration into the com- munity insofar as it is possible, foster home care, hostels, half way - houses and small residential facilities represent the humane and progressive alternative to Willowbrook. The State says it is pursu- ing this course as rapidly as it can. But it has been saying this for the last five years. And during this time it has built or is building at least ten new institutions with capacities of 500 or more, while pro- viding hostel and half way - house care for less than 1,000 of its 26,000 institutional- ized mentally, - retarded residents. Historically, the State has shown its main desire to be keeping its retarded off the TV screen and out of the headlines. This time parents have managed to make the price pretty high at Willowbrook. Since the fury began, the State has re- stored $ 20 million cut from its statewide mental hygiene budget of $ 580 million; kicked Director Jack Hammond upstate; lifted the hiring freeze; halted all admis- sions; promised to reduce Willowbrook population by 1,000 this year, and another 1,000 next year (while maintaining the present staff); closed the experimental hepatitis ward; abolished the official use of segregation and instituted a " behavior medification program " for the 11 residents who had been kept in continuous isolation -some of them for up to 16 years; made unprecedented overtures to parents, in- cluding establishing a Task Force to write guidelines for patient and parents rights for all State institutions for the mentally retarded and mentally ill. Whether these changes will touch the daily lives of the 4900 residents who now remain depends 17 on the parents'ability to keep the price high. Parents are sober about the prospects. Building organization is proceeding slowly, and always present is the tension between the need for long term -, thorough - going change and the need to deal with small but urgent problems in the buildings. People look to the class action suit with a mixture of hope and fear hope - that it represents one of the most potent tactics they presently posess; fear that the ever- conservative more - Supreme Court will overturn the Alabama precedent and with it the other suits across the country which have followed in its wake. Beyond Willowbrook Regardless of the immediate outcome of the suit, the work done at Willowbrook over the last year has mobilized new peo- ple and new groups, breathed new life into old organizations, and kindled a small but growing civil rights movement among the physically and mentally hand- icapped in New York. Groups such as United Parents for the Handicapped on Staten Island, Voice for the Handicapped on Long Island, Citizens Action Commit- tee for the Handicapped in Westchester County, Working Organization for Retard- ed Children, Action for the Retarded Dis- abled in Action, and the Federation of Parents Organizations for New York State Mental Institutions have united previously disparate special interest groups and com- bined a civil rights stance with a direct- action style. Separately and together, these groups have conducted demonstra- tions and disruptions, held their own hear- ings and packed, testified at or disrupted others, engaged in legal offensives, etc. A coalition of these groups demonstrated at the United Nations, filing formal charges of " Crimes Against Humanity " against Governor Rockefeller. If in the end the UN failed to act on the charges, the protocol involved was embarrassing for all U.S. officials concerned. Disabled in Action has recently conducted two rush hour - wheel- chair disruptions of traffic in mid Manhat- - tan, protesting the fact that they are de- nied access to virtually all public trans- portation, public buildings, stores, apart- ments, etc. The City has not arrested them, possibly because of the publicity it would gain for arresting wheelchair pro- testors, only to find they would not fit through paddy wagon or police house doors. Out of this activity, but most impor- tantly, out of the Willowbrook struggle, an unprecedented new group has formed, the Policy and Action Conference (PAC). Its most basic premise is that all handi- capped people, their relatives and friends have to unite if they are to gain the 18 strength to change the social status of the handicapped. The similarities between the blind, the deaf, the physically and men- tally handicapped are greater than the differences, PAC maintains. Like Blacks, women, and other oppressed groups be- fore them, the handicapped are discrim- inated against, treated as third class - cit- izens, or as if they did not exist at all. Their presence causes discomfort and em- barrassment among the so called - " nor- mal. " The mentally and physically handi- capped are regularly rejected from public schools and denied jobs regardless of their ability. Those in wheelchairs are denied access to public transportation and to most buildings. For instance, architects standardly design bathroom doors smaller than the width of a wheelchair, in spite of the fact it costs no more to build them wider. PAC's approach is in sharp contrast to the fragmented, charity oriented - approach of the past. Because of their minority sta- tus and the urgency of their needs, most handicapped persons and their families have found it necessary to rely on private voluntary agencies which raise their money with pitiful posters and contribu- tions cans on street corners. As soon as a particular handicap is identified, be it cerebral palsy, spina bifida, or retinitis pigmentosa, a separate foundation is set up to raise money, lobby and protect the special interests of that group. The result is hundreds of special interests all com- peting with each other for the same char- ity dollar and a small piece of the public priorities pie. PAC's goals include public priority for the problems of the handicap- ped and a guarantee of their civil and human rights - both to be implemented through the creation of a single, independ- ent State " Authority on the Disabilities and 17). Human Development " (see box, P. The problem facing all of the handicap- ped is not one of changing stated policy or legislation. No one disagrees that hu- man warehousing is bad, that the state is obligated to provide free public educa- tion for all school - age children, that Fed- eral regulations require the design of buildings to provide access to the handi- capped where Federal funds are used, that the handicapped share the constitu- tional rights of all. The problem comes in the willingness of the Federal, State and local governments to live up to their own promises and rhetoric, to enforce these policies and uphold these rights. And here, only strong, unrelenting political pressure will alter the situation. Perhaps in the Willowbrook parents, their friends, and groups such as PAC, the seeds of that pressure have been planted. - Ronda Kotelchuck LETTERS TO THE EDITOR The Board of Directors of HIP has di- rected me to send this letter to you. There are many misstatements of fact in the October 1972 issue of Health / PAC BULLETIN in your article entitled " Crip- pled H.I.P. " Moreover, on page 18 of the Bulletin you state: " Nobody mourned for Brindle and Cohen. For years they had been ac- cused of mismanaging HIP. Allega- tions of the misappropriation of money were widespread. " The Board of Directors of HIP considers the above statement to be entirely un- founded, and is shocked and dismayed that such a statement would be printed by a responsible organization without proof or verification. No allegations of the mis- appropriation of HIP monies has come to our attention. If you have any information regarding the misappropriation of HIP monies this information should be prompt- ly directed to the proper authorities and to the HIP Board. Failing receipt of any such information, we must insist that this statement be withdrawn by you in the next issue of Health / PAC BULLETIN. I think you will agree that unless you have facts in your possession which can substantiate the statement made by you, the only fair thing would be to tender an apology. A statement such as you have printed unjustly maligns the reputation of the previous officers of HIP and of HIP itself. We request a prompt acknowledgment of this letter together with the text of a cor- rective statement on this matter as it will appear in the next issue of Health / PAC. ALLAN KORNFELD ' Acting President and General Counsel Editor's Note: Mismanagement or misappropriation, call it what you may. The salient fact is that HIP subscribers have been short- changed by HIP fiscal practices. For ex- ample, a couple of years ago, HIP spent about $ 11,000 to send 17 HIP administra- tive personnel to Hawaii on the occasion of James Brindle's inauguration as Presi- dent of the Group Health Association of America. It is hard to discern just how these days in the sun benefitted HIP patients. Or, take another example. HIP execu- tives exhibited poor judgement in commit- ting scarce monies to initiate the regional- ization program prior to obtaining any as- surance that the necessary rate increase would be forthcoming. HIP patients pay for this poor judgement in reduced ser- vices. Whether these are instances of misap- propriation or mismanagement, Health- PAC does not wish to quibble over words. Rather, we feel, HIP's 570,000 subscribers would be better served if the HIP Board addressed itself to the substance of Health - PAC's criticisms - the engaging structural defects in HIP rather than engaging in semantics. Dear Health - PAC: Thank you for the complimentary copy of your first Health - PAC Bulletin on occu- pational health and safety. Such efforts are needed to promote constructive, vol- untary compliance with the Williams- Steiger Act. Summarily, the legislative history of the Act indicated the lack of a unified effort in the control or prevention of occupa- tional injuries and illnesses. However, it also recognized the excellent, but splinter- ed efforts of governmental agencies, pro- fessional organizations and societies, and other employee and employer groups. We in OSHA (and NIOSH) are dedi- cated to " marshalling " these forces to- gether into vigorous enforcement and vol- untary compliance programs to the end of protecting the worker. OSHA is equally committed to fulfilling its standards - set- ting and enforcement responsibilities in a professional manner. My staff welcomes your efforts and will provide any assistance in accomplishing our mutual goal of improving the work- place for our most vital resource - the worker. Very truly yours, George C. Guenther Assistant Secretary of Labor To Our Readers We welcome your comments on articles. Keep writing. 19 News Briefs Occupational Hazard? It was no ordinary ribbon cutting - cere- mony, reports the New York Times, when Cleveland Mayor Ralph J. Perk, clad in a welder's smock and safety glases, step- ped forward to cut the titanium ribbon to the Metal Show and Materials Congress. Indeed, the sparks from his torch ignited first his hair and then his pants. When all was extinguished, the Mayor, in the prob- able understatement of the day by a poli- tician, said, " This job is more hazardous than I thought. " No Yellows for the Blues A new Illinois regulation on blood bank labeling may literally separate the blue bloods from the poor. The regulation calls for the labeling of blood transfusion units as either " purchased blood " or " blood from volunteer. " But currently, most hos- pitals get up to 60 percent of their supply from commercial sources. Commercially- obtained blood carries ten times the risk of transmitting hepatitis. It would seem that someone in the hospital will have to de- cide who gets which kind of blood. It is unlikely that the blue bloods will be the ones turning yellow. Sticking Pins in Acupuncture New York State authorities, with the strong support of the AMA, have ruled that acupuncture is the practice of med- icine and can therefore be performed only by licensed doctors or other authorized medical personnel. Hence they moved to close down several Chinese acupuncture clinics in New York City which have re- cently been flooded with patients who could find no relief for their ailments in more traditional medicine. Up in arms the patients, calling themselves " Acupunc- ture Now, " demonstrated in front of the State Education Department, which licen- ses professions, to protest the ruling. The Have's and Have - Not's Yes, Boris, there is a comprehensive health care, if you are an American or Russian exchange scientist, that is. For the visiting Americans, there was no prob- lem. They received the comprehensive benefits which the socialized medical sys- tem of the Soviet Union extends to all its citizens. Providing equivalent benefits for the Russians, however, was so easy. Solv- ing this " unique " problem, as Hospital Week called it, required a complicated arrangement between Washington, D.C. Blue Cross Blue Shield and the Depart- ment of Health, Education and Welfare, with a subsidy from the Agency for Inter- national Development. The cost: $ 18.98 per " man month, " not including preventive services. EVALUATION OF COMMUNITY INVOLVEMENT IN COMMUNTY MENTAL HEALTH CENTERS * The Health - PAC study which exposes the myth of community in community mental health centers. An in depth - analysis of how the community is manipulated, ignored and contained by the new mental health establishment. The project was done under the auspices of the National Institute of Mental Health. It includes six case studies on community mental health centers in Philadel phia, Pennsylvania: Pontiac, Michigan; Prestonsburg, Kentucky; Pine Bluff, Arkansas; Minneapolis, Minnesota and San Francisco, California. An eye opening - view of mental health across the country. The study is available for $ 6.00 from the U.S. Commerce Department National Technical Information Service 5825 Port Royal Road Springfield, Va. 22151 * Accession # PB 211 267 20