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Originally Processed With FOIA(s): FOIA Number: S S FOIA MARKER This is not a textual record. This is used as an administrative marker by the George Bush Presidential Library Staff. Record Group/Collection: Donated Historical Materials Collection/Office of Origin: Frieden, Lex, Collection Series: Printed Materials Subseries: Papers/Books OA/ID Number: 52108 Folder ID Number: 52108-008 Folder Title: [Articles/Papers: L] [1987-1990] Stack: Row: Section: Shelf: Position: World Rehabilitation Fund, Inc. New York, N.Y. The Latin American Family and Public Policy in The United States: Informal Support and Transition into Adulthood By H. Rutherford Turnbull, III Ann P. Turnbull The University of Kansas Department of Special Education and Bureau of Child Research Lawrence, Kansas 66045 February, 1987 1 INTRODUCTION We received a World Rehabilitation Fund (WRF) grant to study in Latin America and to report on the following topics: (1) the Latin American family and its adaptations, coping strategies, and use of informal support in maintaining within the family a child or adult with a disability; and (2) the Latin American family and its traditions, attitudes, and behaviors with respect to the transition of the member with a dis- ability from adolescence to adulthood. Throughout this report, the term Latin American(s) will be used when referring to citizens or residents of the United States whose ancestry is from Central or South America or Mexico. This is done in an effort to be sensitive to the cultural and national preferences of the topic population without the confusion of more than one term. We conducted our research in Montevideo, Uruguay; Buenos Aires, Argentina; and Rio de Janiero, Brasil during a three-week period in August, 1986. By and large, the parents were middle-class to upper- middle-class and, among them, the mothers were more accessible and vocal than fathers. Only occasionally did we have an opportunity to speak to brothers or sisters or to non-relatives who had become part of an extended family. The parents were from several countries, part- icularly Uruguay, Argentina, and Brasil but also Equador, Paraguay, and Costa Rica. Most were of Italian or Spanish origin and none were of South American Indian origin. They also were fairly diverse with respect to their children's disabilities, with mild, moderate, and severe mental retardation most commonly represented. In addition, some 2 have children whose disabilities are multiple, consisting of mental retardation coupled with physical or emotional disabilities. Finally, although most of the parents were middle-aged or older, some were in their late 20s or early 30s and were parents of preschoolers and elementary-school-aged children. Many of the parents have children who are in transition from secondary-level special education to adult services or who already have left public school. Among the professionals, there were physicians (particularly pediatricians and neurologists), special educators, psychologists, physical and occupational therapists, speech therapists, vocational rehabilitation counselors, administrators of rehabilitation and special services programs, clergy, and political economists. The greater number of the porofessionals were from Uruguay, Argentina, and Brasil, although some were from Equador, Paraguay, and Costa Rica. Most were upper middle class, of Italian or Spanish ancestry, and not themselves parents of children with disabilities but of nondisabled children. We recognize that the people we interviewed represent only a small slice of Latin American views. It is impossible to homogenize Latin American family perspectives into a single stereotype. By following procedures of qualitative analysis in organizing and synthesizing our interview data, we have identified trends that we will present in this report. In this following report we set out the rationale for our study, the information we learned, and the relevance of this information for policies in the fields of special education, adult rehabilitation, and social services in the United States. In reporting interview data, we have concentrated on the majority themes of our findings, with minority views stated in some cases. 3 RATIONALE FOR STUDY Our interests in studying Latin American families and their responses to the presence of a member with a disability were based on several factors. These are: (1) the fairly well-documented reliance of Latin American families on informal support (i.e., family, neighbors, and friends) to enable them to cope with the presence in the family of a person with a disability and the Latin American family's strong hold on its young adult members; and (2) the obvious need to have disability and family policy in the United States reflect the very pluralistic population of this country. We will discuss these two rationales and, together with them, some of the underlying facts about changed attitudes and population in the United States. New Ethic of Interpersonal Commitment and New Disability Policies Early in the 1980s, Yankelovich (1981) reported the results of his national survey of attitudes in his new book, New Rules: Searching for Self-Fulfillment in a World Turned Upside Down. Yankelovich concluded that citizens of the United States were, indeed, seeking material, improvement and could fairly be characterized as increasingly materialistic. But he argued that materialism, although an end and goal, is not the only end and goal, indeed not the only or ultimate one. He described people as moving toward relationships, community, interpersonal commitment, interdependence, and self-satisfaction by devotion to others. He contended that, although the formal structures of the national economy will persist and be valued as means for greater opportunity for personal autonomy and free choice, the informal structures and supports will take on increasingly important roles as people seek self-fulfillment through relationships. 4 These seemingly paradoxical trends are relevant to the Latin American families' ever more important presence in the United States and, indeed, to the role of "the family" in society and policy. There is a re-emergence of policy that seeks (or gives lip-service to) the value of the family. There is more recognition that psychic compensation, not just financial benefits, are important ingredients of employment satisfaction. And, particularly relevant to the lives of people with disabilities and their families, there are insistent, persistent, and largely successful attempts to structure national, state, and local policy that emphasizes interpersonal relationships among people with and without disabilities (Halpern, 1985) and that also assures that home-based and community- based care, not institutional-based care, will be the policy of the national and state governments. Moreover, there also is emphasis, as policy seeks to move away from the institutional to the home/ community model, on increasing the range of choice available to families and other caregivers by such means as vouchers, family- support services, and optional services funded by social services, Medicaid, or educational agencies. Thus, as the new ethic of interpersonal commitment seems to take hold and as policy either reflects or enables that ethic to be operation- alized, it seems important to understand how the Latin American family, which is so family-centered, has been so able to do naturally what federal and state policy seems to encourage Anglo families to undertake as new behavior, namely, to use informal family-based supports to maintain the person with a disability at home or in the community. In short, 5 what do Latin American families do naturally that Anglo families will have to learn to do (again) as policy moves toward home and community-based care? And how do Latin American families respond to federal and state transition policies that reflect Anglo values of separation from the natural home by the movement of the person with a disability into a group or other home away from the biological family and into employment? Changing Demographics in the United States The United States again has become a nation of active immigration and a great number of recent immigrants (1971-1985) have come from countries in Central and South America. In 1971 to 1980, 1,813,000 people immigrated from Mexico, Central, and South America, and 1,588,200 from Asia. In 1980 through 1985, 1,119,000 immigrated from Mexico, Central, and South America, but 1,553,700 immigrated from Asia. The national and regional economies of Mexico and Central and South American countries, and the internal warfare in some of them, provide the impetus for immigration from those areas to the United States; and a new national immigration law, enacted in 1986 (P.L. 99-603), facilitates even more immigration. Moreover, in some of the nation's states and cities, the Latin American population is the largest of the majority population. That population is the highest minority population in 11 cities of over 250,000 population in the United States, however (Bureau of the Census, 1980). It is fair to say that there has been a reversal of demographics in those parts of the United States and that the new or emerging minorities are the former majority Anglo populations. It is both futile and contraindicated, therefore, to ignore the traditions and behaviors of the new Latin American citizens or aliens. 6 Clash Between Pluralism and Conformity At the same time as the demographics of the United States have begun to change, there have been neo-conservative forces that have sought to ignore or defy these demographic data. For example, the attempts in federal and state educational policy to retreat from bilingual education arguably reflect a new know-nothing attitude, not exactly comparable to the know-nothing ideology of earlier times in this country, but not exactly unlike it either. The rise of neo-conserva- tism and fundamentalism in religion, morals, and politics also arguably reflects a reaction to the new data. More than that, anti-bilingualism, neo-conservatism, and fundamentalism may both reflect and give new power to a drive toward conformity in life in the United States. Simultaneously and contrarily, the new demographics, particularly in certain states and school districts, and the emergence of the Latin American citizens as political powers, seem to indicate a different trend, one that reveals the increasing pluralism in the United States. This is a trend that is also reflected in the emergence of new, politically influential, and policy-relevant populations, particularly feminists, gays, and people with disabilities. Some mediation of these two trends--the one trend that moves toward conformity and the other that moves toward pluralism--is' desirable if the cohesiveness of this country is to be maintained and enhanced. Complexities of Pluralism in the United States Finally, there is the compounding fact that pluralism in the United States does not simply mean that there are Anglo, Latin American, and Black families. Particularly in the field of disability, there are 7 emerging and well-established models of relationships and care that are borrowed from and reflect other cultural traditions. For example, the Camphill movement has taken firm roots in the United States. Founded on the philosophy of anthroposophy as developed by the Viennese intellectual Rudolf Steiner and given expression in the field of special education by schools operated under a model developed by Karl Konig, the Camphill Villages in New York, Pennsylvania, and Minnesota reflect a Middle European cultural tradition. By the same token, the L'Arche communities that flourish in the United States reflect the highly Roman Catholic views of a French Canadian, Jean Vanier (1976, 1981). Camphill and L'Arche thus represent two different cultural tradi- tions and different philosophical or religious approaches to interper- sonal relationships. Despite these differences, however, they have a powerful common characteristic. They are "intentional communities," places where people without disabilities have chosen to live as peers of people who have mental, emotional, or physical disabilities. In Camphill and L'Arche, one finds the interpersonal commitment that Yankelovich (1981) described as the emerging theme of the 1980s in the United States. Also in Camphill and L'Arche, one finds, too, the strong interpersonal bonds that characterize the Latin American family. If the tradition of political, religious secular, and cultural pluralism prevails in the United States, it will be important for the new and emerging disability policies (with their emphasis on home-based and community-based care) to be sensitive to and to imitate, to an extent, the cultural traditions of the intentional communities and the Latin American families. 8 Thus, the time is ripe for an understanding of the Latin American family and its natural abilities to fulfill itself by interpersonal com- mitment and to provide family-based care; and for an understanding of how transition policies in the field of developmental and physical disabili3ties can be made sensitive to and perhaps even reflect the traditions of the Latino family, particularly because of the changing demographics of the United States. The Latin American Family: Coping and Informal Support In this section, we will discuss how the Latin American family copes with the fact of a family member being disabled and particularly how it does so by using informal support systems. We begin by defining the Latin American family and its members' roles. We then discuss the central importance of the family in Latin America, and, next, the values that the family cherishes. Definition of Latin American Family. It is important to recognize at the very outset, that the Latin American family is not just a group of people. It is, equally important, a feeling. Let us consider these two elements in turn. "Family" from a Latin American perspective consists of people. Foremost, there are parents, with the father and mother playing different but equally invaluable roles. There also are grandparents, especially grandmothers, who have significant roles. And then there are uncles, aunts, and counsins, even to the fourth degree of relationship. More than blood and marriage defines the members of the family, however. Godparents are integral members of the family; so, too, are maids, who seemingly are employed in not just upper-income families but also in middle-income families and who have tremendously 9 important roles within the family. Finally, neighbors and friends sometimes are members of the family, but they seem to be so usually among lower-income families. Parents described family as "an emotional commitment." They expressed their "felt need" for family and family interdependence, saying, "We have Latin blood; we think with our hearts" and "We are romantic, more emotional than you; we don't want to lose our feeling for our family." Just as important as the words they used is the passion with which they spoke them, with a deep-seated and obviously unabashed sincerity. Family Roles As was to be expected, various members of the family play separate roles. Mothers tend to be the primary caregiver to the member with a disability and, indeed, to all other members of the family. But grandparents, especially, the grandmother, perform this role, too; and, if there are no grandparents, then sisters or aunts. Mothers also typically stay at home with the member who is disabled and with all other members, too; they usually do not work outside of the home. (Whether this is by choice or tradition, or because there is not work for which they may be employed outside of the home because of the economic conditions of these countries, is not clear, but probably it is because of choice and tradition.) As one parent said, "The mother takes on the whole burden" of care. Generally, that seems to be true in the families we interviewed. In giving care to their family members, mothers tend to give primacy to their children over other family members and, among their children, to the child with a disability. Such a child is "first among 10 equals" and "although the mother has equal love for all her children, she gives the greatest protection for the one who is disabled." Typically, fathers "do not do much child rearing." They tend to "reject and deny" the child with a disability and to reflect a Latin American attitude of machismo: "I earn the money. I am a man. I don't have time to take care of the children." Yet, the father seems to be the one who makes the major decisions about the family; at least, the father does so formally and titularly, if not actually. Likewise, there are exceptions to the stereotype that fathers are not caregivers, and some parents told about families (sometimes their own) in which "all responsibilities fell to the father" to provide care and to make the ultimate decisions affecting the family. What was unexpected was the pivotal role that maids play in the family. First, it was unexpected that so many Latin American families employ maids on a full-time or nearly full-time basis; that habit seems to be one that both upper-income and middle-income families have adopted and continue to follow. Second, it was unexpected that maids would play such an important role within the family. They were char- acterized as being not just members of the family in the sense that family members emotionally identified them as members; but they also were regarded as family members in the sense that they often were the primary or at least co-equal (with mothers) caregivers to members with disabilities, not just raising the child with the mother but often providing thereby important respite for the mother. Although this has obvious benefits for the mother and perhaps other female caregiving members of the family, some parents and professionals pointed out that the maids often are the ones within the family who keep the child 11 with a disability the most dependent and provide the least amount of training in self-care. Finally, there are characteristics of the family that depend on size and economic levels. Typically, the larger the family, the more easily it assimilates the child with a disability and the more its members share in the care of the child. Likewise, the poorer the family, the more it creates extended family members from neighbors and friends. The same is true when the mother works outside the home: extended family members are recruited and assume the mother's role. The Centrality of the Family Time and time again, parents and professionals described Latin American society and culture as family-centered. Their terms reveal precisely that fact when they spoke of the family as "the center of society," "the source of society," "a union and team," and as a culturally and generationally transmitted "ethic." They gave the strong impres- sion that all of the institutions and forms of society take into account and reflect the central role of the family in Latin America--the gov- ernments, churches, and social and economic systems and traditions. They admitted that religious (especially Roman Catholic) and regional traditions (especially the Spanish-Italian and South American Indian ancestral roots of many Latin Americans) affect the family, the way it is regarded and treated in Latin America, and particularly how its members with disabilities are regarded and treated. Similarly, the economy of a country or region affect the central role of the family (for example, in Uruguay and Argentina, the largely middle-class family is still sustained by the residuum of the previously relatively pros- perous national economy, while in Brasil there are wide disparities of 12 economic class and strata) by enabling it, for example, to hire maids. Nonetheless, they all consistently emphasized that the family, not organized religion, national economies, or federal governments, pro- perly is the strongest influence in Latin America. "We have pride in family, in belonging to something." Just what is that something? And why is membership in it so important? What values are expressed by reason of and through the family? Family Values As parents and professionals described the Latin American family, its functions, and its central role in the culture, they emphasized over and over again that there are four dominant values held by the family. These include family unity and permanency, interdependence, pro- tectiveness, and acceptance of the child or adult with a disability. Unity and permanency. The value of unity and permanency was made manifest early in our visit by discussions we had with several of our hosts. When asked how they would respond to the possibility that their children, upon attaining the age of majority, would move out of their parents' home and establish homes of their own while they continued their education or worked, one said, without hesitation, "It would be a tragedy. A shame would fall on our family. We cannot contemplate it." Another explained that the Latin American tradition is that the family remains a tight-knit and permanent unit. Its members continue to live in the parental home even after they became adults. When they marry, they may still continue to live in the parental home, in part because the tradition accommodates the two families in a single home. Many other parents and professionals confirmed these judgments. It is informative to have their exact words, because direct quotations 13 not only inform but also express the spirit that reveals the tradition of family unity and permanence. *"There is a relationship between parents and children that never breaks." *"We never separate from our children. We never cut the cord." *"Sons and daughters stay in the family although that limits the mother's life." *"It is against the family for the children to live alone as adults." *"Young married couples live at their parents' home; it is Latino tradition." *"Families live in the same house always has been that way." When discussing this tradition of unity and permanency in connection with children who have disabilities or other dependent members, parents and professionals underscored the traditions' application to those children. *"We can't allow the elderly to be put out of the house." *"We want to keep love within the family to make the disabled child feel that he is part of the family." *"I would feel guilty (if I were to send my aged parents to a nursing home)." Even after sons and daughters marry, establish their own families, and move out of the parents' home, there still are activities that give evidence of the value attached to family unity and permanency. *"We get together every week we are passionate, committed to each other." 14 *"There is always much celebration within the family. We rejoice in being with each other, in being together." *"We are always together in each other's company." *"We frequently get together for big dinners and parties." *"We telephone each other often." *"We always go to our parents' house for Sunday dinner." *"We return home on Sundays to eat together." *"When we have a meal together, we talk together." *"There are strong physical ties we live close together." Undoubtedly the most telling evidence of unity and permanency as a value comes from a story that one parent told. She said that, when a member of a family dies, the body is buried with the other members' bodies. "We bury all our family together. And, after a few years, we rebury the body (in a smaller plot) to make room for the rest of the family." More than any other quotation, this one shows that a person is a family member always and forever and that the tradition is to enlarge the boundaries of the family, to keep it forever flexible, so that there always will be room for all members, however large the family becomes. To borrow from the vulgate, the Latin American family exists not just from womb to tomb but from womb to beyond the tomb. Interdependence. The value of unity and permanence is a means to make another value possible, which is interdependence. Unity and permanence make it possible for family members to help each other and to depend on each other for help. Again, the direct quotations express not only the substance but also the emotion of interdependence. 15 *"We all help each other because we all live together." *"We all help pay for each other's (habilitation) services." *"The family does problem-solving together." *"The family is a service vocation on behalf of the member with a disability." *"Family interdependence is the soundest possible way of support for each member." *"Children and parents all desire interdependence." The value of interdependence will become more evident as the values of protectiveness and acceptance, the use of formal ànd informal support by families, and expectations concerning transition are discussed below. Protectiveness. Again, family unity and permanence and family interdependence not only are ultimate but also are instrumental values. They are instrumental--means toward ends--in that they enable and encourage families to be highly protective of each other and parti- cularly of members with disabilities. Direct quotations reveal not only the fact of protectiveness but the intensity with which it is valued. *"Families are protective, even overprotective; but they treat the disabled and nondisabled child alike in that respect." *"Families take too much care of the child with a disability and even call adults by the term mia niño (translated: my new one, my baby)." *"Children are always children. They do not go their own ways, as a rule." *"The adult child is pampered (by his parents)." 17 But--and this is the predominant message that parents and professionals gave--there is, in the end, acceptance. Abortion of a fetus that is diagnosed or suspected as having disabilities is almost never practiced. Not only do Roman Catholic doctrines forbid abortion, and those doctrines are the prevailing religious ones in Latin America; but also the cultural centrality of the family, and the sense that a person is a member of the family from the moment of conception (from womb) until and beyond death (beyond the tomb), mitigate against abortion. In addition, nontreatment of newborns with birth defects is not a deliberate practice among pediatricians, other physicians, and families. Again, both religious and cultural norms are powerful barriers against this form of rejection. As to be expected, there is both a price to be paid and a value to be acquired when the child is accepted. Parents and professionals pointed out that the presence of a child with a disability skews the use and allocation of family resources, particularly caregiving and financial ones, in favor of the child and in disfavor of other members. In some instances, the unintended neglect of nondisabled members may mean that they, and their parents' marriage and even the marriage of the nondisabled children, can suffer in various ways. And, particularly with upper-middle income and upper-income families, there can be stigmatization not just of the child but also the family itself. Against these disadvantages, typically families still not only accept the child but also maintain the child within the family structure over the parents' entire lifetime. Nor is the child's presence a source of wholly negative results. Especially parents, but in some cases, too, professionals told about the 18 positive contributions that the child makes to the family, a contribu- tion that enables acceptance, protectiveness, interdependence, and unity and permanence to exist. *"My child gives me and my family big satisfactions; she is our impulse to go on with life." *"My child makes us all more sensitive. She carresses people's hearts." *"I wouldn't change my child (who has profound and multiple disabilities) for anything in the world. I will take him just as he is." Informal Support for Families It is not enough for any family that has a child with a disability that the child gives the family an impulse to go on with life or caresses the heart. Undoubtedly, these are significant contributions-- the gifts that cement parents and families to those children, the adhesive that is indispensable for unity and permanency, interdepen- dence, protectiveness, and acceptance. The fact remains that families need more than good feelings in order to go forward with life. In Latin America, families use both "informal" and "formal" support systems to fulfill that need. Informal support systems are distinguished from formal support systems in Latin America by one major characteristic: they are not organized and provided by governmental or private agencies. That is not to say that informal support networks are not organized or funded, only that they do not derive their information and financing from governments or private sources. 19 In all of the Latin American countries with whose citizens we spoke, the Associations for Retarded Citizens (not usually called by that name) are important parts of the informal support network. Parents reported that the associations provide mutual support for parents, furnish practical advice about services that are or can become available, help parents see and demonstrate to others the positive contributions that children with disabilities make to families and others, create services such as schools, group homes and workshops, and provide an "outlet for anger." Parent associations are not the only informal support groups. Churches themselves have a role, albeit a very minor one in one respect. The organized religions, dominated by the Roman Catholic Church, were characterized as not being involved in any significant way with families. They were reported to not be advocates for people with disabilities or their families and to not provide services or even facilities for other groups to operate programs, and there is no special ministry to families or people with disabilities. On the other hand, spiritual support and faith in God were reported as highly important and useful. Parents told about their belief that God will help them; that the child with a disability is part of God's plan and design for them and the world; and that they derive strength from their faith in God. The family, itself, is a means of informal support for the members who provide care for the child with a disability. Increasingly, fathers are involved in caregiving and in helping to organize and operate the parent associations; they also are forming "fathers only" groups to provide mutual support: "We can say things to each other that we cannot say to others." Neighbors become members of the extended 20 family and thereby become caregivers and supporters of the family. There are exceptions, of course; among higher-income families, the members of the family are less apt to be involved as caregivers, and among lower-income families, neighbors are more apt to be involved as extended family members. Formal Support for Families In general, formal support systems--those organized, funded, and operated by or under the auspices of governmental or private agencies--tend to be child-centered, not family-centered; they provide, for example, education, medical services, and psychological services to the child but, in doing so, tend to pay relatively little attention, or none at all, to the needs of the family to be supported in its work with the child. There are some programs, however, that involve parents and family members caregivers in a variety of ways, largely by teaching them how to care for the child. This type of formal support for the child may have benefits for the family, but the focus continues to be on the child. Family income tends to shape the type of formal support services that families use. Higher-income families tend to use private agencies; lower-income families tend to use public agencies. Higher- income families will use public agencies only after they exhaust the private-sector; and lower income families will use the public agencies only after they exhaust the informal support systems. When using a private or public agency, families are apt to regard the professional as "a kind of god," as highly worthy of parental respect and obedience. It is clear that teachers, physicians, psychologists, and 21 physical and occupational therapists have great standing and, of course, great power in dealing with families. The power relationship between families and professionals is a result not just of the fact that the professional has knowledge. It also is a result of a cultural ethic in which government itself is relatively unchallenged. Parents reported a form of paternalism in which the cultural expectation (to the low extent that there is one) is that government "will take care of us." This expectation naturally augments the status of professionals who are employed in governmental agencies. Formal support for the family begins to evaporate and then seems to nearly disappear as the child with a disability becomes older and moves into adolescence and young adulthood. At the secondary school level, emphasis is placed on the development of strong functional academics (reading, writing, and math), especially in schools that serve families from upper-middle to upper-income strata. For youths with more severe disabilities, this emphasis is relatively inappro- priate. As a consequence, many students with moderate to severe mental retardation do not attend high school and, instead, stay at home during the days. The impact on the family, then, is that the formal service system cannot be characterized as useful. To an even greater degree, the adult service system is irrelevant because it is not useful. * "Nothing in reality, there is nothing." * "There is a need to develop schools and workshops, places where our children can be and not be unhappy." * "Our dream is a commune, a place where our children can live, work, and be with friends." 22 * "Transition? Transition to what? There are no services." That poignantly expressed plight--transition to what?--brings up the other subject of this report: the Latino family and transition. The Latin American Family: Transition from Adolescence to Adulthood In this section, we discuss the meaning of the definition, central- ity, and values of the Latin American family to the transition into adulthood of the child with a disability. We focus on cultural expectations, issues of residential and vocational placement, friendships and interpersonal relationships, financial planning, and the timing of and preparation for transition. The centrality of the family, and the family values of unity and permanence, interdependence, protectiveness, and acceptance of the child with a disability present major problems for Latin American families as they experience their children's passage into adulthood. Cultural Expectations On the one hand, the family is cohesive and reluctant to have any of its members, particularly the child with a disability, separate from it. It is interdependent and inclined by reason of long cultural tradition to be self-reliant and to regard itself as the most certain source of assistance in accommodating the child. It is protective and will con- tinue to embrace the child, both literally and figuratively, to prevent or minimize the risks that are inherent in adulthood. And it is accepting, regarding the out-of-home placement of the child, and indeed of any of its members, as anathema. On the other hand, transition is inevitable as the child matures chronologically and even developmentally, as school-based services evaporate and disappear, and as adult-service opportunities, however 23 sparse, present themselves. The dilemma is clear: how to retain and live by the values of unity and permanence, interdependence, protectiveness, and acceptance, and yet enable the child to develop? *As one professional remarked, "Transition is a challenge to the values of the family. It is contrary to our Spanish and Italian traditions." *Another professional noted: "There are conflicted goals in transition. Parents and professionals tend to train the child to be as independent as possible; certainly that is the goal. But parents still delay the child's adolescence, adulthood, and independence. But they do this for all of their children; only with the disabled child, it is more of a problem." *And one parent commented: "Our dream? The growth of our child and family, health, happiness, but all near the family. Work and recreation, independently. But we want to grow with our children." For many families, their expectations for transition and, indeed, the type of transition depends on the extent of the child's disability. For children with mild disabilities, work in the community but resi- dence at the parents' home is the norm. For children with moderate and severe disabilities, work is not the norm, but residence at the parents' home is. The cultural expectations, then, are to maintain the unifying and permanent, interdependent, protective, and accepting domain and values of the family. Transition does not mean--and not just for economic reasons but more for cultural reasons--the establishment of a life independent of the family. 24 Even when the more Anglo-like, culturally atypical parents con- template transition out of the family home as a normal rite of passage for their children, they think of transition to parent-owned and operated cooperatives--to group homes, farms, and workshops that parents will operate and that will be family-like but probably not family-sized. These options, one parent reported, will mean the child, though an adult, "will still be in the family." And, indeed, when the child's family is deceased, there will be another "family" created for the child, as surrogate. Residential Issues As noted, the Latin American tradition is for the child to remain at home as an adult; it is contrary to the tradition--"not normal" for the child to leave home. The family typically stays together, even after one of the adult children marries. Accordingly, the adult child with a disability is accommodated at home across the child's lifespan. *"Prolonged childhood? Of course! It is crazy for the child to leave home." *"It would be a pity just terrible for any of our children to leave home. We (parents) would just die we can't bear the thought." In this cultural context, the child with a disability is expected to live with the parents or other family always. The ideal is for the child to live at the home of a relative, preferably a sibling, after the parents die. Families report that there is "no problem" with the adult with a disability living at home; and institutionalization "is rare." Yet there is a small trend toward the development of group homes that are operated by associations of parents. Other parents plan for 25 communes and communal living arrangements--intentional communi- ties--that accommodate people with and without disabilities. And those parents that are part of this trend recognize not only that it is contrary to tradition but also that it is likely to be consistent with the future of families, particularly as nondisabled siblings increasingly leave parental homes and strike out on their own. Employment Issues The cultural tradition of maintaining the adult with a disability within the unifying and permanent, interdependent, protective, and accepting family discourages the employment of adults with disabilities. But that tradition is consistent with the harsh economic realities of South American countries, where unemployment is high, national economies are precarious, and jobs for people with dis- abilities accordingly are scarce or non-existent. Three other factors make transition to employment problemmatic. One is that an element of Latin American culture regards work "as a curse." A second is that the secondary-school emphasis on functional academics--reading, writing, and mathematics--may be irrelevant to job-skill development for some people with disabilities. And a third is the fear that some parents have about the physical, social, and psycho- logical risks that their children may undergo in competitive employ- ment. It is not surprising, therefore, that the movement toward employment of people with disabilities, and particularly their employment in competitive situations, is delayed. For many Latin American families, transition into employment is no more appealing or possible than transition into residential options outside the family home. 26 Interpersonal Relationships Because transition in residential and employment domains of a person's life is unlikely to result in placement outside the family, it follows that transition into new personal relationships, outside the family, is not part of the Latin American tradition. In a very real sense, the boundaries of the social life of the person with a disability are coextensive with the family's social contacts. There is a paradox, perhaps, in this fact. On the one hand, Latin Americans describe themselves as very affectionate. *"When we feel affection, we show it." *"It is natural to touch and kiss our friends." On the other hand, sex education and sexual behavior by children with disabilities is suppressed. *"Sex is taboo." *"Sex is terrible to families." *"Families cannot face their children's sexuality." *"Families have a paralyzing fear about sex in their children ." For the typical family with a child with a disability, then, transition in interpersonal relations means transition within the family and certainly not transition to sexual activity. There are, we assume, exceptions, such as the one mother (a widow) who recruits and pays prostitutes to be with her son. But this mother was the only parent identified by any parents or professionals who took deliberate steps to tolerate, much) less to provide, a sex life for the adult with a disability. 27 Financial Planning Transition of the child into adulthood normally elicits a single response from parents and professionals who consider the implications of the financial support of the child and the financial burden of the child on the family during adulthood. That response is that the family, first, and government, second, will provide financial support respec- tively through the personal resources and national pension (Social Security) system. The personal finances of many Latin Americans--exacerbated by the stress that the national economies have experienced over the past several years--underscore this primary dependence on the families' own resources and the secondary dependence on a national pension system. So, too, does the civil tradition of paternalism, the expectation that "governments" will "take care of things." But trust in government should not be placed too strongly, people told us, because governments change and national economies are not dependable, either. For families that have assets to bequeath, there are ways of using gifts in trust to the child with a disability to supplement the governmental pension and reduce the risk that the assets will be dissipated. But fewer and fewer families have assets so sizeable that they find trusts advantageous. As a result, the financial planning of families tends to be relatively passive, reflective of the expectations of cultural paternalism. 1 Timing and Planning The impression exists that typically families do not seriously plan for transition--for their children to establish their own residences, secure jobs, and develop friendships too far outside the family. 28 *"Parents don't think about the future." *"Families tend to take life a day at a time." That is not to say, however, that they do not worry about the future. For many parents, the main concern is: What happens after I die? Yet that concern is powerfully mitigated by the Latin American family traditions and values of unity and permanence, interdependence, protectiveness, and acceptance--traditions and values that enable parents to assume that the family will care for the child. *"When I die, my family will take over." *"The family cares for its own." Because of these traditions, values, and expectations, and because there is a strong tendency to maintain the child at home and to treat the child as a child even when adulthood is reached and fully entered, transition planning is delayed and transition itself is postponed, usually until the parents' death. Indeed, the time when families begin to plan for transition is calculated to be soon enough before the parents' death (expecting a normal life) that a new residence and new informal support system can be put into place, but not so soon as to result in a premature move out of the parents' home. Relevance of Observations for Policy in United States For the purposes of discussion only, it may be useful (1) to high- light-- to give a sharper contrast than perhaps is strictly warranted-- the differences between Anglo and Latin American families and (2) to assume that the Anglo family tradition is reflected in federal and state disability policies. By highlighting the Anglo and Latin American differences and safely assuming that Anglo-based policies have prevailed in the United States, it will be possible to point out more clearly the implications for 33 accomplish the demolition of the extrusion policies by providing long-term care in home and community sites, as an alternative to institutions, and transition out of public school, into work, residence, and interpersonal relationships in the community. Long-term care policy: A challenge to values. With respect to long-term care, the 98th and 99th Congress have passed up an opportunity to provide home- and community-based long-term care to persons with severe disabilities, failing to hold hearings, much less enact, the Community and Family Living Amendments of 1983 (S. 2053) and 1985 (S. 873). Yet long-term care remains as one of the most important of the developmental disabilities issues, with the clear direction being the provision of that care in home and community settings. Early in 1987 there seems to be a developing consensus that the Medicaid funding stream created for public institutions for people with mental retardation by the 1972 amendments to Title XIX of the Social Security Act must be reformed in this major respect: The funding stream must be directed away from supporting long-term care in institutions and toward supporting in-home and community sites. It is instructive to consider the background and implications of this consensus. What began as an attack on the institutions, by the policy of deinstitutionalization (through reform of the conditions in the institutions, depopulation, and prevention of new placements), has become an effort to create home- and community-based care. In short, the problem of the institutions has become the problem of the family and community: how may people who have disabilities that render them dependent on others receive appropriate developmental, habilitative, 34 medical, and educational services not in institutions but in their natural environments, that is, in families and communities? On the surface, this policy question appears to be one that involves only two critical elements: first, the creation of a service system that facilitates home- and community-based care; and, second, the funding of that system by a large and steady stream of dollars (viz. those of the Social Security Act). In fact, however, this policy question is far more complex. At its core, it involves an attempt to reform the family traditions and social values that created and supported the institu- tional model of services. If it is correct to say that the family values in the United States are nuclear and not extended; encourage separation and not unity; emphasize the development and early maturation of the child but not his/her protection within the family; stress independence instead of interdependence; rely on formal support in place of informal support; are extruding instead of accepting; are individualistic instead of collective and communitarian; are achievement-oriented instead of happiness-oriented; are future-oriented instead of present-oriented; are competitive instead of cooperative; and reflect the relative transitoriness of a family instead of its relative permanency--if all of that is correct, then it is clear that the policy effort to provide home- and community-based long-term care for people with disabilities is nothing short of an effort to change the cultural values relating to the family and its members with disabilities. Whereas CFLA and long-term care options once began as anti- institutional policies, whose techniques stress small, family-like, family-based, and community-based care, they now clearly must be 35 seen as pro-family policies. These options declare that the family as a unit of social structure has a peculiar value itself; that family unity and integrity are valid social values that policy must identify and advance; and that the strategies for securing these values are two-fold. First, the strategy is to provide the funding streams and service- delivery systems that do more than simply enable home- and community-based care. Second, the strategy is to declare that such systems and care--such re-emergence of the family as the pivotal provider to members with disabilities--are the presumptively correct and valued ones. In short, the attempt to create long-term care systems based in families and communities is nothing less than an effort to create the family as the natural habitat of people with disabilities. Indeed, it may be a reflection of the interpersonal commitment ethic that Yankelovich (1981) identified early in this decade. Anglo and Latin American traditions relevant to long-term care. If this analysis is correct, then the policy direction of home- and community- based long-term care for people with disabilities faces potentially formidable obstacles in the Anglo population and enjoys potentially hospitable resources in the Latin American population. With respect to the Anglo population, values, traditions, and policies have reinforced --or, arguably, caused--the extrusion of people with disabilities. Without regard to the issue of causation, the implication is the same: The Anglo population is not as accustomed as the Latin American population to retaining within the family the person with a disability. By contrast, the policy of extrusion runs directly contrary to Latin American values and traditions of unity and permanency, interdependence, permanence, and acceptance. 36 So, too, the policy of home- and-community-based care is consistent with the Latin American tradition. In a sense, the direction of long-term care policy in the United States toward home- and community-based care might be said to be a course that is headed for a collision. The strategy of home- and community-based care arguably is at least inappropriate to and at worst contrary to the Anglo policies, and thus to the Anglo family habits, values, and traditions, of the last eight decades. If it is to be successful, the strategy therefore must become more consistent with (or at least not more inconsistent with) the values and traditions; alternatively, the values and traditions must be changed to accommo- date the strategy. In either event, it is clear that, as the debate about long-term care has been formulated over the past four years (since the introduction of S. 2053 in the 98th Congress), the strategy has not yet been made sufficiently relevant to the underlying values and traditions of the Anglo family. Yet it is highly consistent with the values and traditions of the Latin American family, including the Latin Americans who are now citizens or residents of the United States. It now should be apparent, if this analysis is correct, that the enactment of a policy of home- and community-based long-term care for people with disabilities and, more important, its successful implementation will depend in part on how the Anglo family can be induced and supported to adopt Latin American values, traditions, and habits. At this point, it is apt to emphasize that the following discussion of strategies for changing disability policy in the United States does not necessarily carry our complete or uncritical endorsement, anymore than the foregoing critique of long-term care options (e.g., CFLA) is a 37 rejection of them. We ask the reader to bear in mind these two obser- vations, which state our values and beliefs, and then to consider our discussion of strategies. First, Anglo families who want to emphasize family centrality, cohesion, interdependence, protectiveness, and accommodation, and who want to provide family-based long-term care, should be supported in doing so by governmental funding that allows in-home services to be purchased for the person with a disability and that also provides for purchase of services for the family itself. Second, Anglo families who adhere to values of independence, achieve- ment, separation, and competition should have an opportunity to analyze the values and practices of cultural groups such as Latin Americans as an example of an alternative approach. Anglo values of separation (moving out of parents' home at age 21) should not be automatically reinforced as "right" for everyone. Families might be encouraged to explore the benefits of informal family support, not required through policy to adopt Latin American practices or values. Strategies responsive to cultural values. Several strategies come to mind that will support families to adopt Latin American values and traditions. For example, the original Community and Family Living Amendments Act (S. 2053) and its more recent version (S. 873) provided that the services fundable under T. XIX (Medicaid) will include those that furnish educational, habilitative, or rehabilitative services to people with disabilities themselves, as well as those that support families. These included case management, individual and family support services, and protective services. Case management included information to the person and the family about, and referral to, appropriate social, educational, vocational, medical, advocacy, or other 38 services; assists in procuring those services; cooperates with personnel in school, employment, or treatment settings who are responsible for the care of the individual; and is available to the individual or the family for consultation or crisis intervention. Family support services included in-home and out-of-home services, non-medical personal care, assistance in ambulating or transferring, limited domestic services, and assistance with communicative devices and aids; and services that assist the family in providing services to the person, including respite care. Another strategy is one adopted by various states--namely the transfer of financial aid in the term of a "family subsidy" (Zimmerman, 1984). Already, states have enacted laws and funded programs of family subsidies, transferring cash to the family so that it may purchase services that it needs to care for a member with a disability in the family's home. Other strategies might include the creative use of the federal income tax laws to provide deductions (over the now-allowed 5% of adjusted gross income) for medical, habilitative, rehabilitative, or special educational expenses incurred by the family that maintains at home a person with a disability. Similarly, and more beneficial to the family, income tax laws might allow a credit against taxes due, up to a certain ceiling, for such expenses. Currently, child-care expenses are creditable against taxes due, up to a certain ceiling. The extension of that provision to families that provide home-based care seems warranted on the same ground that sustains the child-care tax credit. These are the retention of members in the family and the availability, through creditable child-care expenses, of employment opportunities 39 for members of the family who otherwise would have to provide care at home and thereby be taken out of the employment market. In brief, long-term care policy in the United States that heads in the direction of home- and community-based care must include induce- ments to change family behaviors. It must inculcate into Anglo family values and traditions the values and traditions that are more natural, because more habitual, among Latin American families. Simultaneously, policy must attack the attitudes that have developed concerning the presence of a person with a disability in society and in the family. Those attitudes have been unwarrantedly prejudicial to the person with a disability, who has been portrayed as "suffering from" or "afflicted with" a disability, as someone who has an undesirable social trait and who consequently experiences deep stigma. Whether these pejorative attitudes are the result of policy or the views of caregiving professionals (in medicine, education, psychology, sociology, or other disciplines) is beside the point. The fact remains that the person with a disability is perceived by professionals, policy- makers, and, arguably consequentially, families as burdensome. Such a view of the person encourages extrusion. Such a view therefore is a barrier to long-term care policy that seeks home- and community- based services. To the extent that policy declares that people with disabilities have the same basic rights as people who are not disabled and policy implements and funds those rights, it will go a long way--and already has travelled a good distance--in dispelling the stigma of burden- someness. 40 Likewise, to the extent that research, especially as funded by federal or state policy-making entities or their related research institutes, enables scholars to demonstrate that there is, indeed, a positive contribution that people with disabilities make to society, families, and other people, it too will help dissipate the stigma. Finally, if policy heads in these directions, it may create a cognitive adaptation among families, persuading them that extrusion is unwarranted and presumptively wrong and that they can find benefit in the presence in the family of the person with a disability and gain a sense of control, and indeed, real control, over their lives as affected by that person's presence. In brief, policy in the United States may begin to change beliefs and practices that have been characteristic. of the Anglo tradition of exclusion and it may thereby help all families, not just Anglo ones, to adopt and practice Latin American values of unity and permanency, interdepen- dence, protectiveness, and acceptance. Family Values, Family Traditions, and Disability Transition Policies in the United States The ebb and flow of policy on behalf of people with disabilities reflects, in large part, how professionals view them and, in turn, how the general public views them. As noted above, the first several decades of this century were years in which the policies were to exclude them and to establish systems of dual citizenship. The reform era that began in the 1960s and that has continued unabated through the middle of the 1980s has been a time when policy has increasingly sought to dismantle the restrictions that law and society have placed on people with disabilities, to create new 41 affirmative rights on their behalf, and to empower researchers to understand more fully the cognitive, behavioral, and biomedical basis for disabilities, in the hopes that cures and amelioration would follow. These policies reflected in large part the professional view that people with disabilities are educable to a degree not previously thought attainable and that they have the capacities for work, social and personal relationships, and residential living that are very comparable to the capacities of non-retarded people. It is little wonder, then, that the Education of the Handicapped Act (EHA) was amended in 1975 by the Education of All Handicapped Children Act (P.L. 94-142) in an affirmation of the educability of children with disabilities, including even profound and severe/multiple handicaps, and further in an affirmation of their right to be educated, to the maximum extent appropriate for their education, with non- disabled students. Likewise, the enactment of legislation that created job opportunities for them, assured federal funding for housing in the community, made available for home- and community-based medical care the Title XIX funds, and otherwise sought the assimilation of such people into the mainstream of American life reflected a new and very much more optimistic view of the capacities of people with dis- abilities to work, live, and have social relationships with nondisabled people and in the regular circles of those peoples' lives. Transition policy's characteristics. The current federal initiative toward securing the transition of people with disabilities from school to adult services and from status as children to status as adults is but a piece of the larger reform-era policy. It also is highly consistent with the values and traditions of Anglo families; by contrast, it is 42 highly incongruent with the values and traditions of the Latin American families who live in the United States. And herein lies both an oppor- tunity and a challenge. Transition, as noted, is a policy that seeks to assure the movement of people with disabilities from school to adult services and from status as children to status as adults. It is therefore a policy that may be limited in the following ways. First, it is time-fixed, in that it focuses on the several years before a student leaves school and the several years after the person enters adult service systems. Second, it is system-fixed, in that it takes into account the school system and, among adult services, the employment (vocational system) and resi- dential options (community-living system) that are available or may be created. Third, it is person-fixed, in that it concentrates on the move- ment of the person with a disability and tends to disregard the effects of the planning for and actual movement of that person on the person's family. Fourth, it is age-fixed, in that it begins a few years before the person attains the age of majority and usually ends a few years after that. Fifth, it is process-fixed, in that it assumes that planning by rational and systematic means, rather than acting on instinct or instinct coupled with plans, not only is the way in which families plan but also is the way in which they should plan and that they should do so in cooperation with a host of professionals. We believe that transition is more properly conceived as a whole-life approach, one that applies to every movement of a person with a disability from one stage in life to another (e.g., from the inten- sive-care nursery to out-patient pediatric care; from home to preschool; from preschool to school; from school to work, residence, 43 and social life as an adult; from adulthood to old age; from old age to death) We also believe that transition should be conceived as a whole-family process, one that takes into account the simple fact that any decision made about a person with a disability probably involves and most probably affects other members of that person's family. It follows that the very limitations that have built up around transition will make it less than a successful policy. Time-fixed transition should be reformed to be a "transition through life" instead of a "transition out of school" view. System-fixed transition should take into account not just schools, vocational, and residential options, but, more importantly, interpersonal relationships. Person-fixed transition ignores the effect of a decision about the person with a disability on the rest of the family. Age-fixed transition disregards the fact that there are many transitions in a person's life, and therefore in the family's life, and that each needs to be addressed according to the families' assessment of priority. And process-fixed transitions, focusing on deliberate and systematic planning, are not the only ways--nor even the best ways--for all families, professionals, and persons with disabilities to make decisions. Implicit in these views is a notion that the values of transi- tion--the movement out of school to work, out of home to independent residential living, out of school-based relationships to other relation- ships--are not to be accepted absolutely and uncritically. Yes, inde- pendence is important; but SO too is interdependence. Yes, willingness to take a risk on the person's and family's future by letting go of the family ties is important; but so too is finding ways for the natural 44 protective instincts of parenthood and family status to be expressed. In short, implicit in these divergent views of transition is the recog- nition that Anglo ways give up a lot and that Latin American ways preserve a lot that is valuable in any culture, society, and family. With this definition of transition, critique of its limitations, and reassessment of its values in mind, it will be useful to see just how transition is both an opportunity and a challenge to the Latin American families in the United States and how their family values and traditions are relevant to and functional for transition policy. Transition opportunities. It seems that there are three major opportunities for Latin American families, and especially for Latin American students in special education, that derive from the transition initiatives. First, transition initiatives mean that the national policy is forward-directed; it looks very strongly to the future of people with a disability as a future that is lived in integrated settings--where work will be performed in competitive employment, where residence will be in the community and of the typical size and organization as other people's homes in the community, and where interpersonal relationships will be with people who are and are not labelled as disabled. In short, transition policy means that the nation is not willing to back-pedal and to retreat to the era of institutions and low-expectations of the capcities of people with disabilities. Second, transition policy means that people with disabilites, whatever their ethnic or cultural origins, will be given opportunities for real work, not segregated employment; for residences, not just group houses; for friendships, not just "special populations" programs. Transition means, among other things, that there may be a chance to 45 recognize and respond to the fact that the community-based programs of today, which are largely segregated, are in fact the institutions of tomorrow. Finally, transition means that Latin American students and their families will have opportunities to escape the ethnic and cultural discrimination to which they have been subjected in education, principally through the use of psycho-educational testing and classification. To the extent that transition means that Latin American students will be better prepared for movement from schools to adult systems and from childhood to adulthood, it may mitigate the discrimination that they experience in school and will, unfortunately, experience in their adult lives. Transition challenges. Against these real opportunities for the nation and its Latin American citizens, there stand some major challenges in the implementation of transition policies. First, transition policy, being person-fixed and concentrated on the family member who has a disability, tends to isolate that person and his/her disabilities and transition plans and prospects from the person's family. It is decidedly not a "whole-family" approach, nor is it a Latin American approach. The Latin American approach to transition is grounded on the unity and permanence, interdependence, protectiveness, and acceptance that the family feels towards its members, particularly its member with a disability. Accordingly, the Latin American approach is one that regards planning for one person as planning for all; this is the implicit result of Latin American values. To the extent that transition policy in the United States will be successful with Latin American citizens, therefore, it must begin to take a more whole-family approach, recognizing that a singular focus on the member with a disability is culturally incongruent for the Latin 46 American family. Second, transition policy, being time-fixed and concentrated on the exiting from school or attaining of legal adulthood for the member with a disability, tends not to take a "whole-life" approach. Transition seems to be more aptly described as "transition to" adulthood rather than "transition through" adulthood. Yet the Latin American values are for the permanence of the family and even the delayed maturation and independence of its members, especially the person with a disability, It is difficult to reconcile the "transition to" approach--with its emphasis on exiting from the school and family and entering employment and new residential sites--with the Latin American cultural ethic of having a person be a member of the family from birth even unto after death. Third, transition policy is highly future-oriented. It looks to the next year in terms of individualized educational/transitional plans; it contemplates goals for the next year and objectives for the next month. It is based on an expectation that there will be a tomorrow that is worth planning for today, Yet the Latin American cultural view of the present and future are somewhat at odds with that view, there being no fear of the future because of the confidence placed in the family, and that active family planning is not necessary when one trusts that there will be inter-personal, intra-family commitment. Fourth, transition policy seeks the independence of the person with a disability, especially in work, residence, and interpersonal relationships. Its dominant motif is separation from the family; its mosaic is scatteredness. Yet the Latin American tradition and value is not independence but interdependence. Members of a family are not expected to move from their parents' homes upon reaching the age of 47 majority or even early in their marriages. The dominant Latin American motif is cohesion; its mosaic is concentrated togetherness. Fifth and finally, transition policy tolerates and even encourages the taking of risks, where the risks are incurred in the striking out of the person with a disability on his/her own. Its dominant strain is that of a frontiersman; it rings with the frontier mentality--a striking out into a self-set and self-implemented direction. By contrast, the Latin American tradition and value is not risk-taking but exactly the opposite: protectiveness. Children who become adults still remain children; the child with a disability, even as an adult, is still "mia niño." The dominant strain of the Latin American tradition is that of the settled, not the settler; of a person and family enmeshed in relationships, fixed in time and place, protective of its members, hesitant about the future. In short, transition policy in the United States, while promising much to Latin American citizens (just as it promises much to Anglo citizens), still poses greater challenges than it presents opportunities for Latin American. Without doubt, it is a policy that cries out for cultural tolerance--for a leavening understanding that, although the policy is sharply reflective of mainstream Anglo values and traditions, it is but a clouded mirror of Latin American values and traditions. Indeed, in a very real way, transition and future-planning are irrelevant to the traditional habits and values of Latin American families for most of them assume that, whatever happens to them or their family, there always will be other family to provide for them: Once family, always family; family above all else, always, unfailingly reliable and present. That is an assumption that many Anglos and Anglo families do not and cannot make. 48 Two Lessons: What May We Do with What We Know? What in general may we do with what we have learned about the paradox that we have only partially articulated? First, what is the paradox? The paradox is this: the Latin American tradition and values accom- modate rather well the policy direction of home- and community-based care for people with disabilities, yet they are relatively inhospitable to the policy for transition and future planning. One would have expected that Latin American tradition and values would have been either accommo- dating or not to both policies, since both seem to be headed in the same direction, namely the provision of opportunities for life in and of a community. Hence the paradox: the Latin American traditions and values are accommodating of one policy but not the other. Second, what shall policy do with this knowledge? It has two options. The first deals with relationships. Relationships. In the development of long-term care policy that stresses home- and community-based services, we need to understand more fully how the Latin American family comes to unity and permanence, interdependence, protectiveness, and acceptance, and then we need to develop policy options that create similar attributes among families that are formed by blood, marriage, or intention (just as the Camphill and L'Arche intentional communities are created and sustained). We also need to recognize that formal supports--provided by governmental or private agencies with their legions of caregiving professionals--are necessary but not sufficient. Formal supports are indispensable to people with disabilities and their families, and their curtailment is neither politically feasible nor socially warrantable. On 49 the other hand, there is ample evidence that informal support, as from family members and friends, is highly sustaining to those who have disabilities and to their families. As long-term care policy is crafted, provisions must be made, therefore, for the reimbursability of non- traditional habilitative and rehabilitative services such as respite care, hospices, and life in intentional communities. Family subsidy programs are an apt policy strategy. Similarly, exceptions must be made so that intentional communities, whether as small as a L'Arche home or as large as a Camphill Village, are encouraged and lightly regulated, if at all, as a condition of their members' receipt of disability funds. There may be--and most likely are--other ways to encourage, through funding streams and regulatory schemes, the development and enlargement of a system of services that sustains the "family," whether the natural or a supplanted one. Along these lines, the emphasis in federal education, transition, employment, housing, and medical-care policy on the integration of people with disabilities into the community must acknowledge that, although policy has headed rightly in the direction of making people with disabilities members in a community, it has not done enough to help them become members of a community. Mere presence in the community--being "in" the community--is important, but only as a means for the real goal: being a member of a community, a participant in its bloodstream, not a bystander, segregated in sheltered workshops and group houses, looking on while the non-disabled community returns the look and says, self- contentedly: "They are in the community. What more do they want?" 50 The relationships that make it possible for people with dis- abilities to be in and of a community are the ingredients for successful integration. It is precisely those relationships--known. in policy terminology as "associational rights and benefits"--that respond to the New Ethic of Interpersonal Commitment. It is precisely those rela- tionships that are mirrored in the Latin American traditions and values of family unity and permanence, interdependence, protectiveness, and acceptance. Funding streams, research initiatives, and regulatory schemes need to focus more on the relationships that can be built, in addition to the vocational skills that can be taught, the group houses that can be zoned, the buses that can be retrofitted, and the recreation that can be created for people with disabilities. Perhaps emphasis on the interpersonal relationships at school (from elementary grades through higher education), work, residence, and community presence should be the first focus nowadays, since many of the educational, vocational, residential, and other systems are in place or are being put into place. In short, one lesson that we may profitably learn and practice is the lesson of relationships. That is a lesson to which the Latin American traditions and values, centered on family, point us. Transition. The second lesson that we may learn affects transition. In the development of transition policy and in its implementation, we need to understand that there is a potential conflict of values: the Anglo values seem to run contrary to the Latin American values. No more important contribution could be made to this nation's future, considering the changing demographics of the country and its history of 51 cultural pluralism, than to temper the Anglo goals of transition with the realization that Latin American goals, and indeed Latin American time frames for transition and Latin American techniques of dealing with the future, are not only not to be tampered with if professionals truly seek to serve people with disabilities and their families, but also that those goals, time frames, and techniques are in fact to be valued. The reason for placing such a value on the Latin American response to transition is that it is a response inherent in an important and growing segment of our population. Pluralism. Moreover, it is a response that, precisely because we have a national history of cultural pluralism, should be honored and preserved for culturally pluralistic purposes. We cannot espouse our history and future as a nation of immigrants and disregard immigrant traditions. In short, we must be true to our own national heritage, and we can only do that if we are true to the national heritage of each and every one of us. References Braddock, D. (1987). Federal policy toward mental retardation and developmental disabilities. Baltimore: Paul H. Brookes Publishing Company. Bureau of the Census (1980). City population by race and Spanish origin. Washington: U.S. Printing Office. Elkind, D. (1981). The hurried child: Growing up too fast too soon. Reading, MA: Addison-Wesley Publishing Co. Halpern, H.S. (1985). Transition: A look at the foundations. Exceptional Children, 51 (6), 479-486. Vanier, J. (1978). On the particular therapy of L'Arche. In L'Arche (Ed.), The International Federation of L'Arche, Richmond Hill: Daybreak Press. Vanier, J. (1981). Introduction. In L'Arche (Ed.), The Challenge of L'Arche. Ottawa: Novalis/Winston. Yankelovich, D. (1981). New rules: Searching for self-fullfillment in a world turned upside down. New York: Random House. Zimmerman, S.L. (1984). The mental retardation family subsidy program: Its effects on families with a mentally handicapped child. Family Relations. 33, 105-118. Lex's Master Copy U.S.NEWS Liberation day for the disabled Forty-three million will soon win basic civil-rights protections. Their growing movement has brushed aside the opposition and is changing America he day before the Senate passed T proclamation for people with handi- historic legislation to protect the caps" that will fundamentally change civil rights of disabled people, their lives, getting more of them out of Mary Jane Owen got another rude their homes and institutions and into full reminder of the daily discrimination that participation in society. Under the new faces people like her. Owen, a writer who law, restaurants, stores, hotels and the- is blind and uses a wheelchair, was lobby- aters can no longer turn away a person ing senators for the disability-rights bill. with cerebral palsy, epilepsy, AIDS or But when she moved onto Constitution any other disability. Employers would Avenue to go home, a taxi driver at TNE be prohibited from rejecting qualified curbside sped away rather than pick up a workers just because they are disabled, woman in a wheelchair. and they would be required to fashion ATION It is similar acts, repeated hundreds of generally inexpensive modifications to thousands of times a day to the nation's the workplace to make it accessible to 43 million disabled, that fueled an angry the disabled, such as putting a desk on political movement that has brought the blocks to raise it for a wheelchair user. It nation to a path-breaking moment. In a would also require that new buses be few weeks, President Bush is expected to equipped with lifts so that wheelchair sign the Americans with Disabilities Act, users could get on public transit. New a broad statement that will extend to the buildings, or those undergoing major re- disabled the same protections against construction, would have to be made discrimination that were given to blacks accessible to disabled people, with eleva- and women in the 1960s and 1970s. The Countless frustrations. Angry protesters in San tors installed in shopping malls and new Senate passed the measure 76 to 8 last structures higher than two stories. Tele- written" that it is unclear how far, and to week, and the House is likely to approve phone companies would have to hire op- it next month. The bill is a profound what expense, a business will have to go to erators who could take a message typed avoid being open to a lawsuit. Sponsors of rethinking of how this country views dis- by a deaf person on a Telecommunica- abled people, defined as anyone with a the bill said estimates that its implementa- tions Device for the Deaf (TDD) and tion might cost billions of dollars were physical or mental impairment that then relay it orally to a hearing person "substantially limits" everyday living. wildly exaggerated. Past experience on another phone. shows they may be correct. For the first time, America is saying the Cost of access. Businesses, particularly biggest problem facing disabled people is When Congress in 1973 protected dis- small ones, are wary of the changes. John not their own blindness, deafness or oth- abled people from discrimination by insti- Sloan, president of the National Federa- er physical condition but discrimination. tutions that receive federal funding, tion of Independent Business, complained North Carolina education officials esti- The bill, says Senate sponsor Tom that the bill will "impose costly require- mated it would cost them $15 billion to Harkin (D-Iowa), is "an emancipation ments on businesses" and is "so broadly make state university buildings accessi- JOHN VAN BEEKUM FOR USN&WR WIN McNAMEE FOR Why the rights law has moved swiftly Most leaders behind the Americans with Disabilities Act have special reasons to promote it-they are disabled or have relatives who are. President Bush, whose son Neil, left, has dyslexia and son Marvin, right, has had a colostomy, guaranteed the bill's passage with his support. 20 U.S.NEWS & WORLD REPORT, Sept. 18, 1989 ROBERTA BARNES-SAN ANTONIO LIGHT a civil-rights bill, particularly one that was rushing through Congress. More im- portant, businesses in the last few years Right have seen disabled people as a new source of labor and customers. "If they can get to the stores, business is going to increase," says the U.S. Chamber of Commerce's Nancy Fulco, who nonetheless lobbied to limit the rights bill's impact on business. "Hidden army." The mixed feelings of business groups underscored how disabil- ity rights is a civil-rights movement dif- ferent from any other. Unlike the black and women's movements, disability- rights groups have never filled the streets with hundreds of thousands of marchers. Instead, the disability movement boasts WE NEED "a hidden army," says former Represen- tative Tony Coelho, who has epilepsy. ARIDE Since a fifth of the nation's population has some form of disability, ranging from OWORK mental retardation to severe arthritis, Coelho argues, "disability impacts prac- tically every family." DER Nowhere was that clearer than in Congress and the White House, where ION key supporters of the rights bill felt a particular need to win the bill's passage because they personally know about dis- abilities. Most important was President Bush, who has two sons with disabilities. Bush's strong statements in support of the bill during the 1988 campaign won him important support in the usually Democratic disability community. Nev- ertheless, the rights bill was in trouble until mid-June because of business fears about its cost. Then, on the day he left Antonio wheel through the streets to protest the lack of accessible public transportation Congress, Coelho called Bush to ask him to renew his commitment to the bill. ble, says architect Ronald Mace of Barri- conform with the schedule of lift- Within a few weeks, White House Chief er Free Environments. Instead, many equipped buses. Another 30 percent of of Staff John Sununu convened a strate- changes were simple and cheap. To ac- the accommodations were achieved for gy session with key senators to negotiate commodate students in wheelchairs, between $100 and $500. That included a compromise. That was easy to achieve classes were moved to ground floors rath- such changes as giving a telephone head- once sponsors agreed to the White er than installing elevators to carry them set to a quadriplegic telephone operator. House request they drop the provision to top floors. The cost so far has totaled Despite the concerns of business that would have allowed the disabled to $15 million, says Mace. Similarly, a 1982 groups, their opposition to a bill that sue for punitive damages if they were study for the Labor Department found would open them up to a new spate of discriminated against, a provision that that half the accommodations made in lawsuits was surprisingly muted and not was the most opposed by business lob- the workplace cost little or nothing. For nearly as vociferous as their fight against example, it was easy for companies to bies. From that moment, the compro- the 1964 Civil Rights Act. For one thing, mise bill has been on a fast track. change a wheelchair user's work hours to no one wanted to look like a bigot fighting The success of the disability move- DARRYL HEIKES-USN&WR Ted Kennedy is one of several GARY KIEFFER Senate Republican leader Bob key lawmakers backing the bill Dole, left, cares about disability who know life with the disabled. issues, in part because his right His sister Rosemary is retarded arm was rendered useless by and his son Teddy, Jr., left, lost war wounds. Former House a leg to cancer. Tom Harkin Democratic leader Tony (D-Iowa), chief Senate sponsor, Coelho, who has epilepsy, has a deaf brother and a. turned the House fight over to quadriplegic nephew. Former Steny Hoyer (D-Md.), whose Senator Lowell Weicker (R- wife has epilepsy, too. Atty. Conn.), who has a son with Gen. Dick Thornburgh, whose Down syndrome, first support was critically helpful, introduced the rights bill. has a retarded son. U.S.NEWS & WORLD REPORT, Sept. 18, 1989 21 U.S.NEWS ment is extraordinary because it sprang once they tried to find jobs. A recent up with little noise and little notice. One Census Bureau study concluded that the essential ingredient has been the growth gap between the earnings of disabled and A PERSONAL REFLECTION of a new class consciousness among the their nondisabled co-workers is growing. disabled. Seventy-four percent of them A disabled worker in 1987 made only 64 feel they share a "common identity" percent of what his nondisabled col- The mixed with other disabled people, and 45 per- leagues earned. In 1980, it was 77 percent. cent argue that they are "a minority in The 1985 Harris survey found that 70 the same sense as are blacks and Hispan- percent of working-age disabled people blessings of ics," according to a 1985 poll by Louis were unemployed. Of those, two thirds Harris & Associates. "All disabled peo- said they wanted to work but were pre- ple share one common experience-dis- a movement vented from doing so because, among crimination," says Pat Wright of the other reasons, they faced discrimination Disability Rights, Education and De- in hiring or lacked transportation. Those who do not work now collect federal T his summer, a paraplegic park fense Fund. Often it is crude bigotry. In ranger named Mark Wellman cap- January, an airline employe in New disability and welfare checks, costing tured national attention by climb- York who resented hav- nearly $60 billion a year. ing a sheer rock cliff in Yosemite Na- ing to help a 66-year- "It doesn't make sense to tional Park. After reaching the top, old double amputee THE COST FACTOR maintain people in a de- Wellman said his feat showed that phys- board a plane instead pendency state when ical handicaps should not stop people threw him on a baggage Businesses are concerned from achieving their dreams. "I don't about the costs imposed those people want to be dolly. A New Jersey productive, tax-paying consider myself disabled," he said. private-zoo owner a few by the civil-rights bill: citizens," argues Jay Wellman's fame did not please every- summers ago refused to Buildings: The cost of Rochlin of the Presi- one, especially those fighting to pass the admit children with making accessible new dent's Committee on Americans with Disabilities Act. Bill Down syndrome to the buildings and those Employment of People Bolte, a disabled activist, has confessed monkey house because, existing structures that with Disabilities. to feeling "hate and fury" for people like he claimed, they upset are undergoing major Although no one Wellman, "whose pursuit of personal his chimpanzees. renovations runs between knows precisely how fantasies hurts the struggle for equal It is that kind of out- 0 and 1 percent of many millions of dollars rights." Movement members refer to the rage and countless more building costs. could be saved by bring- disabled such as Wellman as "super- subtle discriminations Transit: Changes ing the disabled fully crips," and they worry that glorifying that fueled the move- required of bus and into the work force, Syl- such people inadvertently undermines ment that now wants to transit systems to help the via Piper, an Ankeny, support for legislation aimed at those change the image of the disabled over the next 20 Iowa, mother, says she less strong or more severely impaired. disabled. Many now re- years might cost several saved taxpayers $4.8 Boyhood pursuits. I happen to admire ject the traditional atti- hundred million dollars. million by ignoring Wellman's grit and his unwillingness to tudes of society that sug- physicians who urged consider himself disabled. As a kid gested their lives were Phones: It will cost tragic and pitiful. Many $250 million to $300 her to institutionalize growing up near St. Louis, I, too, loved million a year to hire her retarded son, Dan, climbing cliffs and trees, anything tall. now loathe charitable when he was born. In- One winter afternoon when I was 14, I appeals such as the an- operators to work relay stead, she kept him at climbed to the top of what I thought was nual Jerry Lewis Tele- systems so deaf people thon that raised $42 mil- can communicate with home and sent him to an abandoned telephone pole but was an those who can hear, public school with non- electric pole carrying 7,000 volts. My lion for the Muscular according to federal and disabled children, the next memory is of lying on the ground, Dystrophy Association AT&T estimates. kind of role models who staring up at a paramedic. The burns I over Labor Day week- inspired him to get a job received cost me one arm and all feeling end. Such extravaganzas this summer. Dan, now and movement in my other hand. seek funds by emphasiz- 18, saved $800 from his My injuries have long since healed, ing the most desperate cases. That kind of pay as a drugstore stockroom worker. and, while there are things I can no approach, activists say, suggests that dis- His first purchase was a gray bedroom longer do, such as fishing, I lead a fairly abled people are to be cared for and rug, upon which he slept the night it typical thirtysomething life-Acura, cannot be contributing members of soci- arrived. The next morning he was ready mortgage, attractive wife and a baby on ety: "We don't want to be dependent any for work early and announced, "I've got the way. I, like Wellman, do not consid- more," says Lex Friedan of the Institute to work harder and make more money." er myself disabled. for Rehabilitation and Research Founda- Once again, says his delighted mother, Yet I, too, have a problem with the tion in Houston, who is a quadriplegic Dan grew when faced with a challenge. hoopla surrounding his ascent. The cam- wheelchair user, the result of an automo- The nation's changing demographics eras would not have been at the top of that bile accident. "We want to be part of have added to the urgency of meeting the cliff had Wellman not been paraplegic. He society in every way." needs of the disabled. By 1990, there will does not want to be considered disabled, Such new attitudes reflect fundamental be 6.2 million elderly Americans with one yet there was the nation, gawking at his changes in the lives of disabled people. or more basic disabilities, up from almost dangling legs, transfixed as much by his Since 1975, when federal law first ensured 5 million in 1984, according to estimates disabilities as by his achievements. all disabled children access to schools, hundreds of thousands of disabled stu- by the Urban Institute, a research organi- I don't climb cliffs any more, but as I dents have gotten a better education zation. And the explosive growth of the attempt to scale the journalism profes- number of those with AIDS and HIV sion, I am repulsed by the thought of alongside nondisabled peers. Many grew infection has already added hundreds of being viewed as a pretty good journal- frustrated after college, when they found thousands more disabled to the popula- ist-for a crippled guy. I expect, and there were few such protections to help tion. That is why AIDS-policy advocates 22 U.S.NEWS & WORLD REPORT, Sept. 18, 1989 JAY MATHER-SYGMA mostly receive, judgment may sound hopelessly sun drenched to based on the average level of you, but it doesn't to me. I experience it performance of my peers. every day. Happiness is achieving, as a Years of neglect. America might not Zen master might put it, a want to deal with another disadvantaged state of unself-consciousness interest group. But we have only our- regarding my injuries. selves to blame. Public buildings, private I realize that I am some- companies and transportation facilities thing of an extremist on this have been inaccessible to the disabled for point, but the desire to be decades, but little has been done. Dis treated like everyone else is abled people have been subject to other among the most common feel- forms of discrimination, but too often ings of people with disabil- we've looked the other way. As a democ- ities. The same noble idea in- racy long guided by interest groups, we forms the disability rights have left it to the disadvantaged to orga- movement. Unfortunately, nize themselves. the movement does for politi- The disability movement is still cal advantage what TV net- young, and its leaders have justice and works do for ratings: It draws common sense on their side. And if they the nation's attention to dis- will not tone down their self-conscious- ability. It "raises the con- ness, they might at least jettison a few sciousness" of people about myths, such as insisting "we don't want disability and helps forge a special treatment, just equality.' But "common identity' among they are asking for special treatment, in the disabled. Yet in doing so the form of regulations and subsidies. It the movement runs counter to is O.K. to admit that. Corporations and a wonderful unself-conscious- professional groups enjoy similar bene- ness that is already happen- fits, many of which are far less beneficial ing, in big and small ways ev to the nation. ery day. Similarly, disabled activists ask peo- Take, for instance; tooth- ple to stop "pitying" the disabled and paste. Getting the stuff out of realize how they are "victimized" by those roll-up tubes used to discrimination. Yet is it not natural to drive me crazy. Tube-squeez- Super crip." Mark Wellman climbing in Yosemite pity a victim? Or to feel self-pity upon ing devices are advertised for LINDA realizing that you are a victim? It is sale in catalogs distributed to dicey for the disability movement to physical therapists, but I nev- play the victim game, because it is risky er bought one, preferring, to use disabilities for dramatic effect rightly or wrongly, to struggle against others who know that fate, not unaided rather than fill my society, is usually to blame for the af- home with and become de- flictions of the disabled. pendent on various doodads Many activists insist that there is designed for the handicapped. nothing sad or negative about disability Then the demographics of the that cannot be altered by changes in marketplace came to my res- attitudes, behavior and public policy. cue. Eying growing markets But what is true for blacks, women and of the arthritic elderly and of gays is not necessarily so for the dis- young parents tired of chil- abled. Stereotypes should be eliminated, dren wasting toothpaste, man- Benefits. Curb cuts' are not just for the disabled but physical afflictions are sad and nega- ufacturers developed the easy- tive. Nothing short of medical miracles to-use pump tube. Today, I can pick one heels. Curb cuts probably cost far less will change that Like any misfortune up at K mart, just as I can saunter into than society gains in ease and added a bad marriage, a business failure-it is voguish housewares stores and, without productivity. But the greater benefit is best to move on and not let the misfor- a trace of self-consciousness, purchase spiritual. They let people in wheelchairs tune define one's self or dominate the fat-handled cutlery and lever-operated share public streets in a way that does rest of one's life. That, anyway, is how faucets. not advertise "specialness." Other I've decided to play it. For people with Movement activists are right in saying changes called for in the legislation, such more-severe afflictions or poorer circum- that crucial aids to the handicapped of as wheelchair lifts on buses, will also stances than mine, that is tougher to do. ten do modestly improve many other blend in, while helping disabled people Congress and the White House will lives. Government-mandated changes to do the same. We might even achieve a make it easier by passing and imple- like "curb cuts;" which make city side- society in which a wheelchair-bound menting this legislation. Then perhaps walks accessible to wheelchairs, are a person would not be seen, either by oth- Washington can share some of the tri good example. Notice how all sorts of ers or by himself, as disabled, because in umph that properly belongs to the dis- people take advantage of them: Delivery a very real way he would not be. He ability activists. people with hand trucks, parents push- would be earning a living and paying his ing baby carts and even women in high taxes just as everybody else does. This by Paul Glastris U.S.NEWS & WORLD REPORT, Sept. 18, 1989 23 U.S.NEWS teamed up with disability groups to make sure civil-rights guarantees under the bill also applied to those with AIDS. People with AIDS had won federal court rulings protecting them under existing disability- rights laws, which apply only to federally funded programs. The new bill will ex- DERK FOR USN&WR pand that protection to the private sector, so that people with AIDS and HIV infec- tion cannot be fired from jobs or denied service in restaurants. Galvantzing Issue. Along with being better educated and more independent, the new generation of disabled people has become more politically sophisticat- ed. Some 200 independent-living centers, which have sprung up since the 1970s to provide a mix of counseling and support services to severely disabled people, be- came bases of advocacy. One galvanizing issue came in the early 1980s, when a Reagan administration antiregulation ef- fort tried to eliminate key federal protec- tions that prohibit discrimination by any Independence. Kevin Ryan is part of a test case against community protests program or contractor receiving federal funds. Negotiating sessions over the reg- Uncle Sam's NIMBY attack ulation first brought then Vice President Bush face-to-face with Evan Kemp, who headed Ralph Nader's Disability Rights L ike most parents of mentally re- ever they want. The antidiscrimina- Center. The regulation was never tarded children, Thomas and tion law is so strong that if the Jus- changed, in part because of Kemp's ad- Rosemary Ryan worry about tice Department wins the Illinois vocacy and growing friendship with who will care for their son Kevin suit, it could actually end NIMBY Bush. Last week, the President named after they die. Today, 30-year-old cases involving group homes for the Kemp, a member of the Equal Employ- Kevin lives with them in their Park mentally retarded. ment Opportunity Commission since Forest, Ill., home. He earns money The NIMBY syndrome had pre- 1987, to chair the civil-rights agency, assembling boxes for a local depart- sented a dilemma to communities. which will handle job-discrimination ment store, volunteers to help re- Most states are under pressure, often cases brought under the new law. tarded kids and is an usher at St. from court orders, to close down The disability-rights movement is dis- Irenaeus Catholic Church. "Kevin large mental institutions, but relocat- tinctive, too, because it has never had a wants to be part of the world, says ing the residents thereof is often very. Martin Luther King or a Betty Friedan his mother. Ideally, that means he difficult because of local opposition to lead it. Part of the reason is that there would move to a supervised group to group homes. Paul Marchand, of are hundreds of different disabilities. home with 14 other retarded adults the Association for Retarded Citi- Nonetheless, disabled people, such as where he will be more self-reliant. zens of the United States, says that student protesters who last year gave But construction of the ranch- neighbors will eventually realize that Gallaudet University its first deaf presi- style house in the adjacent suburb of the group home next door will not dent, I. King Jordan, are now adopting Chicago Heights, where the Ryans significantly hurt property values or on a small scale the protest tactics of the hoped to place Kevin, is being increase crime. Several national civil-rights movement. Thirty members blocked by neighborhood opposi- studies have supported his conten- of American Disabled for Accessible tion. The board of commissioners, tion. As a result; Marchand says, Public Transportation, which uses tac- responding to pressure from neigh- resistance to group homes will fade. tics of civil disobedience, on Labor Day bors who fear a rise in crime and a Nonetheless, several other appli- backed their wheelchairs against buses drop in their property values, de- cations of the new law are under at the Los Angeles Greyhound terminal nied the zoning-law exemption nec- way. In July, in the first court test and disrupted busy holiday traffic in a essary to build the proposed home. of the new law, an Erie County, Pa., protest for wheelchair lifts on buses. This is the common American court struck down a local zoning As the historic legislation was being story of NIMBY, or the not-in-my- ordinance that banned group debated, there was a curious twist. back-yard syndrome. But this time homes. Similarly, in Bucks County, Watching with interest was a paraplegic there is a twist. The U.S. Depart- Pa., Pittsburgh and Swansea, Ill., visitor from Moscow, Ilya Zaslavski. He ment of Justice recently sued Chica- advocates for the mentally retarded made history earlier this year when he go Heights, arguing it has discrimi- have filed suits against local govern- won election to the new Soviet national nated against the disabled. The ments. Meanwhile, Maryland and legislature, the first person anywhere in Justice Department is intervening cities such as Cambridge, Mass., the world to run as a disability candidate. for the first time in such a case, have moved voluntarily to comply Zaslavski watched the work of Congress using part. of the new fair-housing with the new law. and announced plans to introduce law, which guarantees the right of SDA-a Soviets with Disabilities Act. mentally ill, mentally retarded and by Joseph P. Shapiro with other disabled people to live wher- Lynn W. Adkins in Chicago by Joseph P. Shapiro 24 U.S.NEWS & WORLD REPORT, Sept. 18, 1989 LIBERTY, EMANCIPATION - THE AMERICANS WITH DISABILITIES ACT A CALL FOR ACTION Article for March Edition of HORIZONS MAGAZINE Dorman Cordell, Editor Work: 739-0239 Home: 692-6231 Prepared by Ralph D. Rouse, Jr. 3409 Faulkner Drive Rowlett, Texas 75088 (214) 475-9511 - Home (214) 767-4056 - Work LIBERTY, EMANCIPATION - THE AMERICANS WITH DISABILITIES ACT A CALL FOR ACTION CURRENT STATUS Today is an exciting time in which to live! Taking note of the events that have transpired in less than a year's time across Europe, causing changes in the Soviet Union, and with the most recent release of Nelson Mandela it is time to recognize the need to liberate the 43 million people with disabilities here in the United States. On September 7, 1989 the Senate passed the Americans with Disabilities Act (ADA) by an overwhelming vote of 76 to 8. On November 14, 1989 the House Education and Labor Committee unanimously reported the bill after several weakening amendments were defeated. My representative, U. S. Congressman Steve Bartlett, a member of the House Education and Labor Committee, provided strong leadership in getting ADA through this House Committee, a major victory. Congress went back into session on February 20, 1990 and will continue their consideration of ADA. The bill still has to work its way through three other House Committees (Public Works and Transportation Committee, Judiciary Committee, and Energy and Commerce Committee) before it can be voted on by the full House. This is a compromise bill, the product of months of discussions between the White House, the Justice Department, OMB, other affected federal agencies, Democrats and Republicans in the Congress, the business community and the disability community. Page 2 - Liberty Almost 200 major national disability, civil rights, religious, civic and health organizations support the compromise bill, which meets the basic access needs of the disability community while addressing the concerns of the business community. The President of the United States strongly supports this bill, and the Bush Administration helped work out the compromise bill. Despite all of this effort at compromise, the business community still has major concerns with the bill and is actively working to weaken it. The Chamber of Commerce, National Federation of Independent Businesses (NFIB), National Association of Theater Owners, Shell oil, National Association of Retailers and others, as well as private transit industry and some public transit authorities, continue to generate erroneous information about the bill to their memberships in an attempt to weaken it. They have organized letter writing campaigns to Congress and have outnumbered our letters and phone calls five to one. Word on Capitol Hill about ADA is that efforts are currently underway to make a number of changes to the measure, setting the stage for a fight between the four committees that have jurisdiction over the bill, H.R. 2273. A draft substitute of the bill has been shown to some congressional staff, who say they were surprised at the extent of the changes proposed. Though the draft may undergo further modifications before being introduced, some say the tone of the draft is "disturbing." Among the changes proposed is a deletion of reference to the 14th amendment as a basis for the measure, in effect denying that Page 3 - Liberty the ADA is a civil rights bill, said one congressional staffer. Instead, the draft proposes to cite the commerce clause of the Constitution as a basis for the bill. In another major departure from the current bill, the draft proposes to base the time limits for compliance not on enactment of the legislation, but on issuance of regulations. Such a move is widely opposed by the disability lobby, which fears the removal of incentives for federal agencies to issue rules in a timely manner. The draft proposal also includes major changes to the provisions on accessibility of Amtrak cars and in public accommodations. If vastly different versions of the ADA come out of the four House committees, final action on the measure could be delayed even more while the House leadership decides whether to work out the differences on the floor or to piece together one bill from the four. The version passed by the House must then be reconciled with the bill passed by the Senate last fall, opening the door for even more changes. The only House committee that has taken formal action on the ADA is the Education and Labor panel, which approved its version in November. Action in the other committees has not yet been scheduled. WHY THE PARANOIA BY BUSINESS? As I testified at the House Education and Labor Committee Field Hearing on ADA in Houston on August 28, 1989 and as I addressed some 300 owners of intercity buses from throughout the country at the first ever joint national trade shows of the United Bus Owners Page 4 - Liberty of America (UBOA) and the American Bus Association (ABA) in Dallas at the Loew's Anatole Hotel on January 24, 1990, I explained that the paranoia and fear being expressed by the business community about the Americans with Disabilities Act is predictable to those of us who experienced the days before Section 504 of the Rehabilitation Act of 1973. Section 504 is a federal civil rights law that, among other things, required public schools, colleges, universities and all health and social service programs that receive federal financial assistance to make their programs accessible to qualified persons with disabilities. The Americans with Disabilities Act has been patterned after Section 504 and has similar definitions, terminology and access requirements. In the 1970's the "Education Lobby" cried to Congress that Section 504 of the Rehabilitation Act, if enacted, would bankrupt educational institutions. Facts reflect that the costs have been minimal. One example of particular note was a college that was unusually vocal about the costs and the adverse economic impact on its educational programming that the required accessibility to its educational programs would cause. Later, a study was done of the costs incurred in program accessibility at that college. It was discovered that the college spent more in one year waxing its floors than it had cost to make its educational programs accessible to persons with disabilities permanently. Now the transportation and other business lobbies are singing that same tune, the "Bankruptcy Blues" about ADA. We have Page 5 - Liberty compromised and amended ADA enough. It is now time for swift and positive action on the part of Congress. WHAT DOES ADA CALL FOR? The ADA will protect people with disabilities from discrimination in employment, transportation, public accommodations, activities of state and local government, and telecommunications, giving protection which is comparable to that afforded other groups on the basis of race, sex, national origin, age and religion. Most provisions go into effect 2 years after enactment, other than fixed-route publicly-funded transit vehicles (see below). Employment: All places of employment with 25 or more employees are covered for the first 12 years; after that, employers with 15 or more are covered. Provisions are similar to Section 504 of the Rehabilitation Act of 1973 (application procedures must be nondiscriminatory, reasonable accommodation is required unless it would pose an undue hardship, employment criteria must be substantially related to essential functions of the job, etc.) Employers may require that an individual with a currently contagious disease not pose a direct threat to the health and safety of others, and may prohibit all workplace use of drugs and alcohol. Religious entities are not restricted from preferential hiring of people holding to their particular religious tenets. Transportation (publicly and privately owned) New purchased and leased bus and rail vehicles must be accessible. For publicly Page 6 - Liberty funded systems, this requirement goes into effect 30 days after passage. Publicly funded fixed-route operators must provide comparable paratransit service unless it would pose an undue hardship. All demand-response service which is provided to the general public and privately-funded fixed-route service, may purchase only accessible vehicles unless it can be demonstrated that the service is accessible when viewed in its entirely. The exception is privately-funded fixed-route service which uses vehicles carrying over 16 passengers, in which case new vehicles must be accessible. Over-the-road coaches (Greyhound-type buses) are exempted for six years in the case of large providers and seven years for small providers; after that, newly purchased vehicles must be accessible. The bill commissions a three-year study to determine the best way to provide access to over-the-road coaches. New bus and rail facilities must be accessible. In altered facilities, the altered area must be accessible to the maximum extent feasible. In major structural alterations, a path of travel to altered areas and restrooms serving altered areas must be accessible. Existing facilities must be accessible when viewed in their entirety. Rail: New vehicles must be accessible. One car per train must be accessible in no more than 5 years. Key rail stations must be accessible in no more than 3 years, with exemptions available for up to 20 years. Amtrak stations must be accessible within 20 years. Page 7 - Liberty Public Accommodations: Includes hotels, restaurants, theaters, halls, stores, offices, transit stations, museums, parks, schools, social service agencies, gyms. Eligibility criteria can't discriminate. Auxiliary aids and services are required unless the public accommodation can demonstrate undue hardship. Existing facilities: Must remove barriers when such removal is readily achievable. If not, must provide alternative methods of making goods and services available. Altered facilities: Altered area must be accessible to the maximum extent feasible. In major structural alterations, a path of travel to the altered area and restrooms serving the altered area must be accessible. New facilities must be accessible unless structurally impracticable, but elevators need not be provided in buildings under 3 floors or with less than 3000 square feet per floor, other than in shopping centers and health care facilities. Public Services: Activities receiving funding from state and local government are covered, with requirements as in Section 504 of the Rehabilitation Act of 1973. Telecommunications Relay Services: Telephone carriers offering services to the general public (interstate and intrastate) must provide TDD relay services by 2 years after enactment. Enforcement: Administrative remedies are available. Also, private remedies comparable to those in Titles II and VII of the Civil Rights Act of 1964 are available. Attorney's fees are Page 8 - Liberty available; punitive damages are not. The Attorney General can bring pattern or practice suits and seek penalties. States can be sued. Federal law (the Civil Rights Act of 1964) prohibits discrimination on the basis of race, sex, national origin and religion, but not disability. Thus, under federal law, a restaurant cannot refuse to serve a person because he is black, but they can exclude a person who is mentally retarded, has cerebral palsy, etc. Discrimination on the basis of disability is pervasive across America. It affects not only the persons who have the disabilities but also their entire families. The ADA will mean that people with disabilities will be able to do what all other Americans take for granted in their daily lives. The ADA is intended to insure that people with disabilities will be treated with dignity and respect. In a real sense the bill codifies basic notions of common courtesy (i.e., it doesn't require that a store braille all its price tags, it only requires that a sales person read the prices to a blind person). DATA FROM LOU HARRIS SURVEYS (1986, 1987) "Not working" is probably the most accurate definition of being disabled. As a group, disabled people lead isolated and secluded lives. Specifically, Harris found that: 67% (two-thirds) of people with disabilities do not work - 74% of the 67% have experienced employment discrimination. Page 9 - Liberty In addition, of the 67% who are not employed, 67% want to work and 62% say they would give up federal support payments for a full-time job. 80% of top managers in U. S. firms say disabled people face job discrimination. Many disabled people never frequent public accommodations - nearly 2/3 (64%) of disabled adults hadn't been to a movie in the past year, compared with only 22% of nondisabled adults - disabled people are 3 times more likely than nondisabled people never to eat in restaurants (major reason given: discrimination, including lack of physical access and fear of mistreatment). Currently the federal government is spending well over $60 billion per year to keep people with disabilities dependent on federal programs. In addition, State and local governments spend millions of dollars on dependency programs. As the population ages, these figures will only increase. The ADA will save billions of dollars by providing job opportunities for those individuals with disabilities who want to work but are facing discrimination. It will enable disabled people to be taxpayers and consumers, not tax-dependents. WHAT CAN AND MUST WE DO? The U. S. House of Representatives is considering the most important piece of legislation ever proposed for 43 million Americans with disabilities. We are in the stretch run of the Americans with Disabilities Act, and we simply must suck it up and outrun our competition (small business and transportation lobbies) to the finish line. Page 10 - Liberty Thanks to the efforts of my Congressman, Steve Bartlett, the House Education and Labor Committee voted unanimously to approve the version of ADA that passed in the Senate 76 to 8 with clarifications but without weakening amendments. This is an important first step in the House. However, three other House committees must vote ADA out of committee, it must be voted on by the full House as a whole, and then the House and Senate will have to negotiate any differences in their two bills before ADA can be signed into law by the President, who is in support of it. Our job in the next two months or SO is to work on our own U. S. Representative and the other Congressmen to convince them that they should vote to adopt the Senate version of ADA with clarifications as made by the House Education and Labor Committee and without any further weakening amendments. Emphasize that our objective is to have as many as possible of the 43 million Americans with disabilities working, paying taxes and buying goods and services rather than in a condition of forced idleness, on public assistance rolls and denied basic civil rights. Give them examples of the productive potential of people with disabilities and examples of basic rights of access and opportunity being denied. Explain to them that the same scare tactics of the alleged high cost of accessibility and equal opportunity being spread by small business and transportation lobbies have been proved untrue by the 12+ years of experience with compliance with Section 504 by colleges and universities, public school systems, health and social Page 11 - Liberty service agencies and institutions and other recipients of federal financial assistance. In 1977 when the HEW Section 504 regulations were published, colleges and universities and other recipient cried that compliance with these regulations (which actually are more stringent than ADA) would bankrupt them. Sound familiar? Facts and studies have shown just the opposite. Accessibility costs have been minimal and disabled children and adults for the first time have been able to become educated and receive some basic services. However, it does not help to educate a population if they have only limited opportunities for work, transportation, and public accommodation. This is where ADA will make the difference. Explain that the Section 504 compliance experience has shown that most individuals with disabilities require little or no reasonable accommodation to perform jobs effectively, and when they do, the costs are usually minimal. Give examples you know about. In other words, emphasize the economic common sense of ADA. The following is a listing of Congressmen who should receive cards, letters and telephone calls: John Dingell (D) - Michigan (Chair, Energy and Commerce) *Glenn Anderson (D) - California (Chair, Transportation) *Don Edwards (D) - California (Judiciary; Chair, Civil Rights Subcommittee) Bud Schuster (R) - Pennsylvania (Transportation; Ranking, Surface Transportation Subcommittee) Bill McCollum (R) - Florida (Judiciary) TEXAS: Jack Brooks (D) - Galveston, Beaumont (Chair, Judiciary) Greg Laughlin (D) - Victoria, Round Rock (Transportation) Pete Geren (D) - Fort Worth (Transportation) - NEW MEMBER Ralph Hall (D) - Tyler, Sherman (Energy & Commerce) Page 12 - Liberty Jack Fields (R) - Houston (Energy & Commerce) Joe Barton (R) - Fort Worth, College Station (Energy & Commerce) *John Bryant (D) - Dallas (Judiciary, Energy & Commerce) Lamar Smith (R) - San Antonio, Midland (Judiciary) *Martin Frost (D) - Dallas (Rules) ADA cosponsors are identified by the asterisk (*) by their names. Those who are not cosponsors need encouragement to become cosponsors. All need our encouragement not to allow further weakening amendments to ADA. All may be written by simply addressing cards and letters to: Hon. U. S. House of Representatives Washington, D. C. 20515 Two specific initiatives that have been developed and proposed are the "Western Union ADA Hotline Message" and the "Key Campaign. " HOW TO SEND HOTLINE MESSAGES 1) Dial Western Union's toll-free Hotline number, 1-800-257- 4900. This service is available 7 days a week, 24 hours a day. 2) Ask for HOTLINE OPERATOR 9565. 3) Give Hotline Operator 9565 your full name, address, zip code and telephone number. 4) Hotline Operator 9565 will send the ADA pre-stored messages to your Representative. It is not necessary for you to know the name of your Representative as Hotline Operator 9565 has this information. TDD #: 1-800-541-1792 5) The $4.95 cost of your Western Union message will usually be charged to your phone bill and will show up as a "Telegram Charge. " In some cases you may receive an invoice directly from Western Union. 6) You can also charge this to your major credit card: Visa, Master Card or American Express. Page 13 - Liberty HOW TO PARTICIPATE IN THE KEY CAMPAIGN Send old keys to members of Congress in an envelope with a message that says something like "The KEY to LIBERTY and EMANCIPATION of 43 million Americans with disabilities and all people is an immediate passage of the House Education and Labor reported version of the Americans with Disabilities Act without any further weakening amendments." Better yet, come up with innovative ideas of your own, organize people around them, do them and encourage other people to do the same. Through such efforts you have the opportunity to make the difference. Do not neglect to keep an ongoing dialogue with your U. S. Representative's local office manager. Call him or her and say you want your message of swift passage of ADA without further weakening amendments passed on to your Representative as soon as possible. Be sure to give your name, address and telephone number and the name, address and telephone number of others you are calling in behalf of. Believe me, those messages do get passed on and often you will get a letter from your Congressman in response. The potential for severely damaging ADA through weakening amendments in these House committees continues to exist. Efforts are particularly under way to weaken the transportation and public accommodation sections of ADA. We must overcome this resistance and these scare tactics by good one-on-one common sense discussions with our Representatives. Also continue to write letters, make telephone calls and use the ADA mailgram and get family, friends, Page 14 - Liberty neighbors, etc. to do the same. If you have done this before, Great! But it is absolutely necessary to do it again because the next two months are critical. What better gift can you give to 43 million people with disabilities and to all Americans than "LIBERTY and EMANCIPATION"? "YOU CAN MAKE A WORLD OF DIFFERENCE!' " Page 15 - Liberty Thank you for your efforts. If I can be of assistance, please contact me. Ralph D. Rouse, Jr. 3409 Faulkner Drive Rowlett, Texas 75088 (214) 475-9511 - Home (214) 767-4056 - Office Ralph Rouse has over twenty years experience working in the fields of rehabilitation and civil rights. Mr. Rouse was one of the founders and served on the original board of directors of the Dallas Mayor's Committee on Employment of Persons with Disabilities. He is a life member of the Association of the Disabled of Dallas, the Coalition of Texans with Disabilities and the National Rehabilitation Association. In 1982 he was the recipient of the "National Equal Opportunity Achievement Award" from the Secretary of the U. S. Department of Health and Human Services. In 1984 he was presented the "Public Employee of the Year Award" by the Mayor of Dallas, Texas. In 1989 Mr. Rouse was given the "Justin W. Dart, Jr. Meritorious Service Award" by the Coalition of Texans with Disabilities for outstanding contributions to improving the lives and equal opportunity of persons with disabilities. LIBERTY, INDEPENDENCE, PRODUCTIVITY - THE AMERICANS WITH DISABILITIES ACT, AN ECONOMIC IMPERATIVE by Ralph D. Rouse, Jr. 3409 Faulkner Drive Rowlett, Texas 75088 Home (214) 475-9511 Office (214) 767-4056 Today is an exciting time in which to live! Millions are being freed in Eastern Eurpoe. It is time to liberate 43 million people with disabilities here in the United States. President Bush has estimated that excluding 2/3 of working age people with disabilities from the work force costs America $300 billion per year. The Americans with Disabilities Act (ADA), strongly endorsed by President Bush, passed the Senate by an overwhelming vote of 76 to 8, was unanimously approved by the House Committee on Education and Labor and recently passed the House Energy and Commerce Committee. ADA makes good economic sense. By providing basic access to jobs, transportation and public accommodations, it will free millions of Americans to become employees, taxpayers, customers and full participants in our society while simultaneously breaking the welfare cycle. Regrettably, an effective ADA is being opposed by transportation and small business lobbies, which are claiming that it will impose unaffordable costs on business. That is just not true. Such fears are proven groundless by seventeen years of experience in implementing the law from which ADA is copied, Sections 503 and 504 of the Rehabilitation Act of 1973, that called for public school systems, colleges and universities, all health and social service programs that receive federal financial assistance and federal contractors to be accessible to qualified persons with disabilities. In the 1970's the "Education Lobby" cried to Congress that Section 504, if enacted, would bankrupt educational institutions. Experience has proven that the costs have been minimal. One example of particular note was a college that was unusually vocal about what the costs would be of makaing its educational programs accessible. Later, a study showed that the college spent more in one year waxing its floors than it had cost to make disabilities. its educational programs accessible permanently to persons with Page 2 - ADA, An Economic Imperative ADA in its current form is a carefully negotiated compromise with major concessions to transportation providers and small business. It provides for a gradual transition to an opportunity society. For example, ADA totally exempts all employers with fewer than 25 employees for the first two years, and those with fewer than 15 employees are permanently exempted. Employers covered must simply consider persons with disabilities for employment if such persons are fully qualified to do the job with "reasonable accommodation." Experience under Sections 503 and 504 has shown that most employees with disabilities require little or no accommodation. No employer is expected to provide accommodation if to do so would work an "undue hardship" of cost on the business. Existing public buildings are required to be accessible only if makaing them so is "readily achievable" without "significant difficulty or expense." Newly constructed public accommodations would have to be accessible; this adds only about 1/2 of 1% to the costs of the facility and provides better access for everyone (i.e., pregnant women, people with baby strollers, an aging population, etc.). Dependable transportation is a necessity in our society to working and being productive. Low income and economically deprived people must depend upon public transportation, and the disability of many people makes them dependent on public transportation. ADA requires that only new vehicles bought by public transit authorities be accessible; no retrofitting of existing public buses is required. For rural and small communities that buy used buses, they simply have to make a "good faith" effort to find accessible used buses. Studies have shown that buying new buses that are accessible to the disabled adds only 5% to the cost of the new buses. Most of these requirements already exist for federally funded public transit systems under Section 504 of the Rehabilitation Act. Opponents say people with disabilities do not ride accessible buses. The answer to that is that if a system has enough accessible buses to be a dependable system, the ridership will come. Denver has proven this. They have large numbers of disabled people riding their public bus system daily. For work and personal reasons people with disabilities also need access to intercity transportation. ADA does not require anything of intercity bus operators for six years for large providers such as Greyhound and for seven years for small companies. In the interim it calls for a study to determine the most feasible methods of providing accessible intercity transit. In any event it requires, after six or seven years, only that newly purchased buses be accessible; those buses in use are exempt. Finally, charter bus services will not have to purchase Page 3 - ADA, An Economic Imperative accessible new buses if they can provide an accessible bus for charter upon request. ADA also calls for all common carriers of telephone services to provide intrastate and interstate relay services for telephone calls made between users of telecommunication devices for the deaf (TDD's) and users of voice telephones. Seventeen (17) states already have such relay systems and 10 others are currently scheduled to begin operations. This will allow our deaf and hearing impaired population to do business by telephone. All of this emphasizes that ADA makes sense and is an economic imperative for our society. It does not make economic sense to educate a population if they have only limited opportunities for work, transportation, and public accommodation because they merely become welfare dependents and an economic burden rather than taxpaying contributors. As we look at the work force of the year 2000 and beyond, we recognize that the baby boomers are aging and that fewer and fewer young workers will be available. We also recognize that automation is changing the face of business. Both of these phenomena mandate making productive this untapped human resource, which can now do many more jobs because of advances in technology. This is where the ADA will make the difference. To coin a phrase, WE, the citizens with disabilities, given basic access opportunities, CAN MAKE A WORLD OF DIFFERENCE. ADA: DEFERENCE TO NEEDS OF SMALL BUSINESSES The ADA has been carefully crafted to make sure that its requirements take into account the needs and situations of small businesses. Some of the major ways in which the ADA has been tailored to consider and make allowance for the needs of the small business operator include the following: O Exemption for small employers With respect to employment, the bill totally exempts all employers with fewer than 25 employees for the first two years, and those with fewer than 15 after that. o Undue hardship limitation For these employers large enough to be covered despite the small employer exemption, the duty of making reasonable accommodations for employees with disabilities does not apply when an accommodation would impose an "undue hardship." Among the factors to be considered in determining whether an undue hardship exists, the bill specifically lists "the overall size of a business of a covered entity with respect to the number of employees, number and type of facilities, and the size of the budget." Thus, the requirement of making employment accommodations varies in relation to the size and budget of an employer, with less being required of a smaller, less prosperous business. 0 Readily achievable limit on barrier removal in existing public accommodations Places of public accommodation are required by the bill to remove architectural and communication barriers in existing facilities only if it is "readily achievable" to do so. Readily achievable means "easily accomplishable and able to be carried out without much difficulty or expense." In determining what is readily achievable the ADA again specifies that the size and budget of a business are to considered. A Mom-and-Pop store is held to a much lower standard than is a highly financed, big national concern. O Undue burden limitation regarding auxiliary aids and services Public accommodations are not required to provide auxillary aids and services if doing so would result in an "undue burden." As with "undue hardship" and "readily achievable," the ADA specifies that the determination of what is an undue burden must take into account the size and budget of a business. A struggling small business will be excused from providing an auxiliary aid or service in circumstances where a larger, more prosperous business might be required to provide it. (OVER) 0 The elevator exception for small buildings The ADA generally requires accessibility in new construction consistent with overwhelming evidence that the costs of accessibility at the design and construction stage are minimal. To further protect small businesses, however, the bill has added an exception to accessibility requirements with regard to small buildings. For buildings that are less than three stories or that have less than 3,000 square feet per story, (no matter how many stories), no elevator is required -- either for new construction or for renovation projects. O The readily accessible to and usable by standard The ADA does not require total or universal accessibility even in regard to newly constructed facilities. The "readily accessible to and usable by" standard drawn from previous statutes and regulations imposes accessibility obligations that are tailored to the type and use of each particular facility. It does not require that all parking spaces, bathrooms, stalls within bathrooms, etc. have to be accessible, but only a reasonable number, depending on such factors as their location and number. A small facility is likely to have fewer areas and services, and therefore, fewer areas and services to make accessible. The ADA does not require a business to add accessible drinking fountains and bathrooms if it does not otherwise provide fountains or bathrooms. Small businesses with the fewest "frills" will have fewer such services and conveniences to make accessible. o Telecommunications relay services The establishment of telecommunications relay services for individuals with speech or hearing impairments as provided for in Title IV of the bill was an accommodation to the needs of small businesses. This system was created to permit persons using telecommunications devices for the deaf (TDDs) to contact businesses through a relay system in lieu of requiring all businesses to have TDDs themselves to permit customer to call to make reservations, purchase tickets, check on store hours or show times, etc. o Absence of compensatory and punitive damages for discriminatory public accommodations A compromise in the Senate removed from the bill provisions that would have permitted the awarding of compensatory and punitive damages against employers or places of public accommodation found to have discriminated. Some had argued that the prior monetary damages provisions might be too harsh, and that many small businesses would be unable to afford legal counsel to advise them and so would risk serious financial liability. The remedies available now under the bill are highly advantageous to small businesses. The harshest remedy that will generally be available against a small public accommodation will be an injunction ordering it to stop its discriminatory activity. In employment, for those larger business that have over 15 employees, there is also no ability for plaintiffs to receive compensatory or punitive damages. ENT. BY:TDHS CIVIL RIGHTS : 3-14-90 : 1:12PM : 5124504748- 2147670432:# 2 Texas Department of Human Services Civil Rights Department Statewide Adaptive Equipment Fund. Purchases Location Disabling Position Job Restructuring &/or Condition Title Adaptive Equipment Reg 01/02 Mobility Impaired Eligibility Worker I Form Bins Reg. 05 Visually-Impaired Clerk Typist III Large Print Dictionary Reg. 05 Visually-Impaired Social Worker Visual-Tek Reg. 05 Visually-Impaired Eligibility Worker III Talking Calculator Reg. 06 Visually-Impaired Social Worker CCAD Talking Calculator Optacon w/typewriter Perkins Brailler Braille Embosser Reg. 06 Back Injury Investigator Back support device Reg. 06 Mobility-Impaired Social Worker CCAD Portable Tape recorder Reg. 06 Mobility-Impaired Clerk III Communications Headset Reg. 06 Mobility-Impaired Clerk III Electronic Typing Station Reg. 06 Visually-Impaired Word Processor Oper. IBM-PC Printer Votrax Type n Talk Reg. 08 Visually-Impaired Medical Eligibility Visual-Tek Reg. 10 Visually-Impaired PBX-Operator Braille Roledex Reg. 10 Mobility-Impaired all employees Emergency Carry-out Chair Reg. 11 Back Injury Admin. Tech. I Ergonomic Armchair Reg. 11 Back Injury Clerk III Ergonomic Armchair Reg. 11 Back Injury Data Entry Operator Ergonomic Armchair State Ofc. Visually-Impaired Programmer Visual-Tek Computer Terminal State Ofc. Visually-Impaired PBX-Operator Communications Headset Mini-microphone State Ofc. Back-Injury Program Specialist I Ergonomics Chair State Ofc. Hearing-Impaired Program Specialist I Telephone amplifier State Ofc. Visually-Impaired PBX-Operator IBM-PC software Votrax Type N' Talk State Ofc. Skin Allergies Administrator Specialized Chair State Ofc. Visually-Impaired Programmer IBM-PC and Visual-Tek State Ofc. Visually-Impaired Programmer IBM-PC and Visual-Tek Total employees, Texas Department of Human Services 12,727 Disabled employees 704 Accommodations with expense 23 Accommodations without expense 150 No accommodation required 531 This information is provided to the Governor's Office by all state departments 504 DAY Dallas City Hall Plaza Dallas, Texas Friday, April 29, 1988 WHAT WAS IT LIKE BEFORE 504? Presented By: Ralph D. Rouse, Jr. Division Director Office for Civil Rights U. S. Department of Health and Human Services 1200 Main Tower Building Room 1360 Dallas, Texas 75202 Telephone: (214) 767-4056 WHAT WAS IT LIKE BEFORE 504? Our society was closed to people with disabilities. Everywhere you turned there were barriers. The environment and the attitude of society forced and reinforced dependency. Effectively for disabled people the law of the land was "out of sight, out of mind." You seldom saw a disabled person in public. Where were we? We were in institutions and in the back rooms of our parents' inaccessible homes. They (society) were taking care of us. They had "special schools" for us and when we graduated, "sheltered workshops". We were separated and segregated from society by well meaning programs, and everybody knew we were not equal. Living independently, working and earning a decent wage were not practical for the "severely disabled." It was understood that most of us would be tax users (Welfare recipients, etc.) not tax payers (employees). Prior to the passage of the Rehabilitation Act of 1973 most laws restricted the involvement of persons with disabilities. There were state and local laws that denied disabled persons: - The right to marry; - The right to vote; - The right to hold public office; - The right to obtain a drivers license or a fishing license; - Some laws required sterilization of certain disabled persons. - There were laws that restricted disabled persons' ability to use public transportation not to speak to the fact that public transportation was inaccessible to a large segment of the disabled population. For example, there were laws that prohibited a blind person from sitting next to a person of the opposite sex on public transit vehicles. - Finally, there were even local laws that prohibited persons considered to be unsightly from being seen on public ways or thoroughfares. Why did we ever have such laws? Because it is human nature to fear, avoid and overreact to that which we do not understand. These laws were considered necessary for the "public good." Meanwhile disabled people languished and vegetated in institutions and back rooms with no hope and no future. Then along came the "Baby Boomers with Disabilities," and we began to question and confront society's attitudes and laws about us. Disability law and policy, and disability as a social movement underwent profound changes from 1960 to 1980. Traditional programs, policies and assumptions about disabled people were attacked in the courts and legislatures in terms of constitutional rights and liberties. Advocates utilized due process and equal protection challenges to attack dehumanizing institutions, segregated schools, and inaccessible transportation. Sympathetic members of Congress pressed to pass legislation to include handicapped individuals as a class protected by civil rights statutes. The concepts of the right to integregation and meaningful equality of opportunity, as well as methods and tactics utilized by other civil rights groups began to be employed in disability rights work. The 1960's provided the form and the 1970's provided the substance of the movement that is evolving today. From these efforts came the Rehabilitation Act of 1973. It is a Federal law, which supercedes State and local laws. Title V of the Act contains a series of Civil Rights laws. Section 501 established the Federal Interagency Coordinating Council for affirmative action employment of handicapped individuals in the Federal government. Gouncil responsibilities are to establish procedures for (1) recruitment, (2) employment and (3) advancement of qualified handicapped individuals. The Equal Employment Opportunity Commission (EEOC) is the Federal Agency that receives and investigates complaints of alleged employment discrimination by the Federal Government. Section 502 established the Architectural and Transportation Barriers Compliance Board (ATBCB) to enforce compliance with the Architectural Barriers Act of 1968, which requires that any building built or altered with Federal construction funds after September 1969 be built or altered according to standards that ensure accessibility. The ATBCB receives and investigates complaints pertaining to alleged violations of the Architectural Barriers Act of 1968. Section 503 is a law requiring a Federal contractor to establish procedures to take affirmative action to employ qualified handicapped individuals. A Federal contractor is a public or private firm that contracts with the Federal government to provide goods or services to the Federal government at fair market value. Procedures for affirmative action include (1) recruitment, (2) employment and (3) advancement of qualified handicapped individuals. The Department of Labor, Office of Federal Contract Compliance Programs receives and investigates complaints of alleged discrimination against Federal contractors. Section 504 is the key national mandate for conferring upon disabled people, as a class, the constitutional right to integration and equality of opportunity (equal citizenship). It is a law that requires that any agency or institution that receives, either directly or indirectly, Federal funds to operate a program may not discriminate in the way it provides benefits, services, and employment opportunities to qualified handicapped individuals. Each of 34 Federal agencies that administer programs of Federal financial assistance is responsible for receiving and investigating complaints of discrimination alleged against institutions delivering programs. The regulation implementing this law contains specific steps that the institution must take to comply with the regulation. These steps include: 1. Submitting to the Federal agency from which the Federal financial assistance came an assurance that the program will be operated in compliance with the regulation (84.5). 2. Conducting, with the assistance of handicapped persons or organizations representing handicapped persons, a self-evaluation of the program's current policies and practices and modifying those that deny equal access to qualified handicapped persons (84.6(c)). 3. Designating an employee responsible for coordinating the institution's efforts to comply (84.7(a)). 4. Adopting grievance procedures that incorporate appropriate due process standards and that provide for the prompt and equitable resolution of complaints alleging discrimination on the basis of handicap (84.7(b)). 5. Providing equal employment opportunities and reasonable accommodations to otherwise qualified handicapped applicants or employees (84.12). 6. Taking action to ensure that each program or activity, when viewed in its entirety, is readily accessible to handicapped persons (this does not require that every facility or every part of a facility be accessible) (84.22). 7. Making sure that newly constructed and altered facilities are readily accessible (84.23). 8. Providing appropriate auxiliary aids to persons with impaired sensory, manual and speaking skills, where necessary to afford an equal opportunity to benefit from the services being provided. These aids may include among others brailled and taped materials, and readers for blind persons, and qualified sign language interpreters and TDD's for deaf persons. (84.52(d). Largely as a result of these Federal civil rights laws, preconceived ideas, sterotypes and negative attitudes about who disabled people are and what they can do have begun to be altered by getting the American public acquainted with people with disabilities, their abilities and their alternative techniques for mobility, communication and work. However, current Federal civil rights laws for people with disabilities are limited to that part of the public sector that receives Federal financial assistance. There is not a comprehensive civil rights law for people with disabilities that broadly covers all sectors of our economy. The Americans with Disabilities Act can be the comprehensive civil rights law that will open our society to people with disabilities. For this Act to become law it will require that all people with disabilities band together and speak with a unified voice to Congress and the President of the need for such broad coverage. Only then will we have the opportunity to realize our full potential as contributing members of society. We cannot afford to deny our disabled citizens access to society. It has been estimated that there are over 35 million disabled persons in the United States. It costs society $1 million to maintain an unemployed disabled person during his working years. Almost half of the adult disabled population is on or near the poverty level. By the year 2000 there will be one chronically-il1-over-65 or disabled person for every able-bodied person in the country. of the approximately 16 million disabled persons between the ages of 16 and 64, half are either out of the labor force or unemployed. It has been estimated that it will cost our country one trillion dollars (or one thousand billion dollars) in lost wages, and in government and private expenditures to maintain our disabled population by the year 1990. These figures are courtesy of Dr. Frank Bowe from his book "Rehabilitating America". They are shocking and they represent unutilized human ability, wasted talent and lost benefits to society. Maximizing the productivity and contributions of disabled persons is no longer merely an issue of social conscience, it is a matter of economic imperative. bad for business? by Justin Dart im Crow lives and we can't af- ADA would force backbreaking practices would hurt everyone. It J ford him costs and lawsuits on business. would shout to the world that peo- These claims are groundless. pie with disabilities are less than President Bush estimates at They reflect the same obsolete at. fully equal and reinforce negative $300 billion per year the economic cost of segregating millions of citi- titudes, unfounded fears and erro- attitudes that are the root of dis- zens with disabilities from the pro- neous doomsday predictions that criminatory barriers. It would lead greeted previous extensions of basic directly to more unemployment ductive mainstream of American civil rights protections. and increased dependency on mas- life In addition, there is overwhelm- ing evidence of a devastating hu- ADA provides for a gradual, cost sive, paternalistic welfare systems. man cost that cannot be expressed efficient transition to a society with It would guarantee higher taxes; in numbers. opportunity for all. It requires that higher government, business and To begin to remedy this intoler- only new facilities be fully accessi- family budgets: and larger public deficits. able situation, the president has ble. It specifies that no "significant endorsed. and the U.S. Senate has difficulty or expense" be imposed The eyes of history are upon us. Like the Declaration of Independ- passed, the Americans with Disabili- on business. Most of its provisions ence and the Bill of Rights, ADA ties Act. This landmark legislation have been tested for years under ex- will affect the lives of hundreds of provides citizens with disabilities isting federal, state and local sta- the same "clear mandate for the millions in every nation for decades tutes, which cover specific segments elimination of discrimination" that of the business community. There to come. We have a unique window other minorities attained more than have been no excessive costs or liti- of opportunity to significantly ex- 20 years ago. gation. pand the horizons of human poten- ADA is now being considered by tial. As a founder and CEO of small the House of Representatives. It and large businesses, I have volun- We must not perpetuate the trage. probably will pass. tarily implemented most of the TO- dy of segregation. We must summon Regrettably, however, powerful quirements of ADA. These require- the vision of our founding fathers special interest groups are advocat- ments are not burdensome, but to see beyond short-range political ing amendments that would legal- rather contribute to profit. Progres- and economic expediency. We must ize "separate but equal" facilities sive business people in every com- make a courageous, farsighted in- and other discriminatory barriers, munity give similar testimony. vestment in the future of free enter- which have made 43 million Ameri- ADA is a business-oriented law. It prise democracy. Twenty-five mil- cans with disabilities this nation's was negotiated and will be admin- lion voters with disabilities and ev- most unemployed, impoverished, istered by a business-oriented fed- ery citizen who believes in the welfare dependent and expensive eral administration. It will be good American dream will long remem- minority. Lobbyists are flooding for business. ber the patriots who take a clear congressional offices and the news An effective ADA will free mil- stand for justice now. media with strident claims that lions of people with disabilities I urge the members of the House from the bondage of dependency, to pass ADA promptly, and with- Justin Dart a wheel chair user for 41 years is a former businessman who has enabling them to become employ- out amendments that would legal- ees, taxpayers and customers. It ize current discrimination. Ameri- received five disability-related appoint- will save billions for government ca cannot afford another century of ments in the Reagan and Bush admin- istrations He is currently chairman of and citizens. In the long run, Jim Crow. the President's Committee on Employ- some of the largest savings will ment of People with Disabilities and be reaped by businesses, who the Congressional Task Force on the pay a major share of the tax Rights and Empowerment of Ameri- and private costs of un- cans with Disabilities He was instru- solved social problems. mental in the creation of the Ameri- An ADA amended cans with Disabilities ACC to legalize Jim Crow February 1990 The Council of State Governments 17 EQUAL TO THE 1981 Du Pont Surve TASK of Employment of the Handicappe - This booklet is about the men and women of Du Pont who, with the company's help, have demon- strated their ability to become productive members of the work force and the community. It is a tribute to their achievements, a record of their performance, and a challenge to ourselves and other employers to more fully utilize this valuable human resource. C E.I. du Pont de Nemours and Company 1982 22. OPEN DOOR CLOSE DOOR RESERVED FOR Total Talk 3 HANDICAPPED CONTENTS PAGE VALUABLE RESOURCE: 4 Introduction to the survey 2. TAKING THE COUNT: 5 Increase in Du Pont's handicapped population 3. FOR THE RECORD: 6 Supervisory evaluation of performance 4. MEETING THE CHALLENGE: 8 Performance comparisons by type of impairment 5. EXTRAORDINARY PEOPLE: 10 Portraits of Du Pont's handicapped employees 6. TOOLS FOR THE TASK: 17 Accommodations to meet the special needs of the handicapped 7. COMMUNITY PARTNERSHIP: 19 Working with sheltered workshops and rehabilitation centers 8. EQUAL TO THE TASK: 22 The challenge of greater employment opportunity 9. APPENDIX: 23 Who was counted in the survey 1 A VALUABLE RESOURCE Du Pont studies over a period The results bear out the conclu- of 25 years have shown that the sion that, given the opportunity, performance of handicapped handicapped employees are employees is equivalent to that of indeed equal to the task. More- their nonimpaired co-workers. In over, the 1981 survey went beyond safety, job duties and attendance, earlier surveys, documenting the handicapped hold their own. both the accommodations the In 1981-designated the Inter- company has made to meet the national Year of Disabled Persons special needs of the handicapped by the United Nations-Du Pont and the company's involvement again surveyed its employment with community organizations that of the handicapped to update provide work for handicapped earlier findings, and to provide individuals. direction for future hiring and placement of handicapped personnel. 4 2 TAKING THE COUNT e the last survey, in 1973, The category "Other Impair- TYPES OF IMPAIRMENT Pont's handicapped population ments" is particularly large. Indi- 1973 1981 increased 89 percent, from 1,452 viduals in this category exhibited to 2,745 employees. By comparison, Allergies * a wide range of medical conditions 149 the total number of Du Pont for which employment accommo- Amputees 163 104 employees in the United States dations were made. A full listing of Epilepsy 56 62 increased 13 percent in the same these conditions would be imprac- Hearing 55 150 period. As a percent of the total tical, but examples include: cancer, Heart 380 581 Mental Function * roll, handicapped employees diabetes, Hodgkin's disease, mul- 146 increased from 1.4 to 2.4 percent. tiple sclerosis, muscular dystrophy, Nonparalytic This increase is attributable to hypertension, hernia, and gout. Orthopedic 415 564 several factors. As the table (right) Efforts by Du Pont to recruit Paralysis 106 93 indicates, a substantial portion of Respiratory * qualified handicapped individuals 182 the increase stems from the addi- resulted in a 60 percent increase Vision 277 240 in the number of employees hired Other Impairments * tion of four new categories of 474 impairment consistent with the as handicapped: in 1981, there 1452 2745* definition of handicapped intro- were 731 on the roll compared duced in the Rehabilitation Act of with 459 in 1973. *Not included in the 1973 survey. 1973. Du Pont's survey includes Of the 2,745 employees, 598 Of these, 429 have a second any individual with a physical responded to Du Pont's invitation disabling impairment and 81 or mental handicap for whom to identify themselves as handi- have a third. Du Pont has made an accommo- capped and to be included in the dation in some aspect of the company's affirmative action loyment process. (Refer to the program. In most cases, these endix for elaboration.) employees had already been iden- tified as handicapped by the company. Conoco employees were not included since the merger had not taken place at the time of the survey. 5 3 FOR THE RECORD The 1981 survey confirms what In 1981, as in 1973, supervisors In performance of job duties, Du Pont supervisors already knew: were asked to rate handicapped 'the handicapped improved their like their nonimpaired co-workers, employees in safety, performance rating slightly from 91 to 92 percent handicapped employees are safe, of job duties, and attendance. In average or above, compared with productive, and dependable. addition, they were asked to do 91 percent for nonimpaired a peer comparison using a sample employees. of nonimpaired employees. The A measurable improvement was results are summarized in the chart noted in the area of attendance- to the right. with those rated average or above In safety, handicapped employ- up from 79 to 85 percent in 1981, ees maintained the high standard compared with 91 percent for recorded in 1973, with 96 percent nonimpaired employees. rated average or above average, compared with 92 percent for nonimpaired employees. OVERALL PERFORMANCE COMPARISON Gatety 100 % Average & Above 95 90 85 80 Job Duties 100 erage & Above 95 90 % 80 Attendance 100 % Average & Above 95 90 85 80 Handicapped 1973 Handicapped 1981 Nonimpaired 1981 7 4 MEETING THE CHALLENGE PERFORMANCE COMPARISONS BY IMPAIRMENT Du Pont's handie apped employees Safety are its diverse a group as the total employee population-in talent. in training. in occupation. and 100 in the kinds of constraints they work under because of their The diversity of their impair- ments. however. does not signifi- cantly alter how well they do their % Average & Above 95 particular impairments. 90 85 jobs. In the charts to the right. the performance of handicapped 80 employees in safety, job duties and attendance has been broken down Job Duties by type of impairment. What stands out in these comparisons is the uniformity of performance. 100 i. handicapped individuals. 1. ever the impairment, are well able to meet the challenges of % Average & Above 95 their jobs. 90 85 80 Attendance 100 ". Average & Above 95 90 85 80 Allergies Amputees Epilepsy Hearing Heart Mental Nonparalytic Function Paralvsis Respiratory Vision Orthopedic Other Nonimpaired 9 5 EXTRAORDINARY PEOPLE While numerical data are impor- Bill and Barbara Monaghan: between 190 and 200 messages a tant, the essence of any study Messengers day-and helps break in new mes- is people. Between them, they walk miles sengers. Barbara particularly likes Numbers tell only part of the every day at Du Pont's corporate the people she meets delivering story. They do not tell how handi- headquarters in Wilmington, mail and assists in training high capped individuals overcome Delaware. The distance seems short school co-op students employed their impairments to compete on compared with the long road as messengers. Between the an equal basis with nonimpaired Bill and Barbara Monaghan have Monaghans, they have almost workers. traveled to become self-sufficient. seven years of perfect attendance. As the portraits of Du Pont The Monaghans are messengers Off the job, the two stacked employees on the following pages -Bill in Information Systems' tele- up one gold, two bronze and two suggest, men and women with communications office and Barbara silver medals in freestyle, back- varying forms of disability have in Employee Relations. Both have stroke and relay swimming events mastered a broad range of occupa- been mentally handicapped since in the 1980 Special Olympics. tions. Many of them, through birth. There have been many mile- uncommon ingenuity and per- Bill and Barbara first met at a stones for Bill and Barbara Mona- sistence, have overcome serious school for the handicapped on ghan since they took their first ations in order to pursue Cape Cod, Massachusetts, in 1974. tentative steps toward self- professions. After graduation they went sepa- sufficiency at school on Cape 1 neir achievements lend per- rate ways. Bill returned to his Cod. Because their talents are spective to the quantitative data home in Wilmington and joined being used, the journey will con- of the survey. the Opportunity Center, Inc., a tinue to be a productive one for training facility for the handi- them-and for Du Pont. capped, where he worked for two and a half years before joining Du Pont in 1977. During this time, Barbara lived with her parents, returning to school on Cape Cod for one additional year of voca- tional training. Bill and Barbara never lost track of each other. They were married in 1979 and Barbara joined Du Pont the same year. They agree that their jobs weren't easy at first, with deliveries to widespread office locations, and many names and faces to learn. Now Bill delivers teletype mes- sages from around the world— 10 .rd Culberson: Mechanic Discharged from the Navy in In 1945, Howard Culberson's left 1946, Howard attended business leg was amputated just below the school in Chattanooga, left after knee. He was injured while helping eight months, then tried a variety to refuel a destroyer during a of jobs in Cleveland, Tennessee. typhoon off the coast of Honshu, He applied at the Chattanooga Japan. plant in April 1951 and was hired Now an area maintenance eight days later to work in the mechanic at Textile Fibers' plant tool crib and keep records. At first, in Chattanooga, Tennessee, he was not permitted in the manu- Howard recalls the rehabilitation facturing area, but he soon demon- program at the Philadelphia Naval strated he could do just about Hospital: the fitting of an artificial anything except heavy lifting, leg, marching in drills "like re- squatting or climbing. In fact, cruits," riding bicycles, and taking Howard admits he was trying to Arthur Murray dance courses. do the work of five or six men. Today, Howard builds separator and traverse rolls, and keeps maintenance and repair records. According to his supervisor, "Howard is good at what he does, and he's dependable." In 30 years, Howard says he has missed less than a week of work because of his leg. A football fan, Howard roots for the University of Tennessee- even when they're not doing well. But then, he knows what it is to come from behind and win. 11 Stewart Wiggins: To help him overcome his dis- Computer Programmer ability, the company acquired an Stewart (Stu) Wiggins was an electro-mechanical device experienced FORTRAN computer (Optacon) that converts printed programmer for engineering and letters and numbers to vibrating science at the Experimental Station, images that can be sensed by the Du Pont's research facility outside index finger. While the device Wilmington, Delaware, when enables Stu to read anything, it a benign tumor on the optic nerve requires enormous concentration. cost him his sight. That was in More recently, Du Pont acquired a December of 1972. full-speech computer terminal With the help of the Delaware that says words and spells aloud Bureau for the Visually Impaired by individual characters. and the encouragement of co- To compensate for his disability, workers and family, Stu began his Stu devised ways of writing his rehabilitation. He learned to read programs that make them easier Braille, type and use a cane. When for him to memorize. In the words to urned to work in March of his supervisor, "Stu's programs 1: .ne admits, "I wasn't sure are dreams for others to read I could make a go of it." because of the orderliness of their structure." Today, Stu continues to be employed as a computer pro- grammer and is fully productive. His initiative and resourcefulness earned him a promotion in 1977. When not spending time with his family-he and his wife have two sons and a daughter-Stu speaks at civic clubs, talks per- sonally with others who have experienced the same trauma, and explains the operation of the Optacon and talking terminal. His philosophy: "Even sighted people have different capabilities. You just have to know what.you can do and do it well." 12 A. _:a Godwin: Stenographer A relative newcomer to Du Pont A physical impairment need not -she has just completed her be an obstacle to doing a full second year-Andrea is a stenog- day's work in the office or to living rapher in Chemicals and Pigments' a normal life off the job. Andrea Wilmington, Delaware, office. She Godwin proves this. works in the steno pool and has Suffering from multiple birth been trained on word processing defects, Andrea underwent 32 equipment. The part of the job major operations, which culmi- that she likes best, however, is nated in surgery to fuse her spine substituting for secretaries because, at age 14. She now walks with as she says, "I never know what I'll the aid of crutches, needing a be doing next. I don't mind asking wheelchair only when her artificial questions, and I learn a lot." Since leg pains her. Automatic doors, she began her present assignment recently installed by Du Pont, have in March of 1981, Andrea hasn't made it much easier for her to get missed a single day of work. As her from place to place. supervisor notes, "I can always count on Andrea. She's the first one in when it snows." Andrea attended a school for the handicapped in Philadelphia before moving to Delaware. She completed her education at a public high school where she met her husband. They both attended business school for two years and were married in 1975. Before joining Du Pont, Andrea worked as a legal secretary and as a secretary in an accounting office. The key to Andrea's success is her attitude, which she expresses this way: "People respond to you based on how you feel about yourself. I don't feel handicapped." 13 Raymond Kellogg: Machinist What is remarkable about Ray's In his free time, Ray practices his Raymond (Ray) Kellogg knows achievement is that he is a deaf- skill in cabinetry and builds remote- what he is doing, and that's what mute; he hears only loud, sharp controlled model airplanes that it takes to be set-up man on the sounds. To communicate, he delight his two children. On and shift. Ray operates a computer- reads lips and uses sign language. off the job, Ray Kellogg is a man assisted machining center at He received his initial training at who knows what he is doing. Du Pont's Photo Products plant the Mystic School for the Deaf in in Newtown, Connecticut. As Connecticut, where he met his set-up man, he teaches others how wife who is also hearing impaired. to use the machining center, which Ray has learned his job so well bores, mills and drills delicate that he was recently promoted to instruments. the top level-just eight years after joining the company. According to his supervisor, "Ray is more knowledgeable than average. I'm learning more from him than he is from me." Before joining Du Pont in 1973, Ray worked as a carpenter and cabinetmaker for 18 years. Stair- cases he made are the focal point of many homes. He learned of the job at the Newtown plant from a deaf-mute friend who worked there. Ray has overcome his disability so successfully that he requires little in the way of accommoda- tion. Du Pont has provided him with a teletypewriter (TTY) which allows him to keyboard telephone conversations instead of speaking into the receiver. In addition, for special communications, like the recent two-day seminar on employee benefits, the company may bring in an interpreter. 14 Sa. a Fischbach: Besides being a computer office Computer Office Assistant assistant in data processing at Stricken with polio at 15 months Petrochemicals' plant in Corpus and paralyzed from the waist Christi, Texas, Sandra also man- down, Sandra Fischbach has fought ages a home, and a young daughter back. Although she was told she and son. would never walk without She didn't attend any special crutches, she now gets around schools for the handicapped. Her with the help of a leg brace, some- mother spent hours working with times leaning on corridor walls. her and encouraged her to do The crutches are reserved for navi- things for herself. She studied gating stairs and unfamiliar places. key-punching in high school, attended college for a year, and worked for a data processing company in San Antonio, Texas, her hometown. After joining Du Pont in Febru- ary 1980, Sandra learned her job quickly. In her next assignment, she will work with process com- puters in a production area. Sandra parks next to the building where she works, but expects no other special treatment. "We are regular people," she says. She likes horseback riding and playing pool, and enjoys baking bread, sewing, and taking care of her home and children. Outgoing, confident, and self- reliant, Sandra Fischbach regards her disability as an inconvenience, not a handicap. 15 James Prettyman: Mechanic Jimmy's supervisor encouraged James (Jimmy) Prettyman, a spin him to tackle more complicated pump mechanic at Textile Fibers' pumps, and he now handles them plant in Seaford, Delaware, relies with ease. Of Jimmy's perfor- on touch to service and maintain mance, his supervisor says, "Jimmy dozens of pumps every day. knows what's expected of him Jimmy has been blind since he and he does it-sometimes better was about seven, as a result of than a sighted person could. He measles. After his graduation from can feel imperfections on the a school for the blind in Philadel- pumps that I can't even see." phia, a friend suggested he apply The only special treatment on for a job at the Du Pont plant, and the plant for Jimmy was the instal- he did, though he says, "I didn't lation of a cover over the grinder think I'd be hired." at his bench, and having someone Now a 36-year Du Pont veteran, meet him at the gate in the morn- Jimmy remembers well his first ing and leave 15 minutes early with ic' the plant: loading spin him at night. is into boxes and making Jimmy is so skillful that many up boxes for the conveyor belt. people coming to the shop for When a new, larger conveyor was the first time do not realize that installed, his supervisor didn't have he is blind. any doubts about his ability to handle the increased work load. In 1975, Jimmy moved to the pump room to become a me- chanic. He learned to work pri- marily on pumps which supply polymer to staple nylon machines. On a routine day, he works on as many as 50 pumps-in a jam, more than 80. He cleans, oils, and tests them so they are ready to go back to machines on the manufacturing floor. 16 6 TOOLS FOR THE TASK What conditions within the Supervisors have learned inno- hand tools and furniture, and Du Pont environment have con- vative communication methods in has provided special equipment tributed to the successful perfor- training blind, deaf and mentally to enable handicapped individuals mance of handicapped employees? impaired employees. At one to perform their jobs. For emer- Five key elements have been location, special safety meetings gency situations, Du Pont sites identified: with an interpreter are held for provide evacuation assistance, 1. Management's concern for the deaf employees. For other handi- such as wheelchairs and air packs, safety and well-being of all capped workers, training cycles. for employees with mobility employees-a fundamental have been lengthened. One super- problems. Du Pont tradition. visor even blindfolded himself Overall, because of accommo- 2. Careful placement of handi- to find out what problems a blind dations Du Pont is making, the capped employees to maximize employee might encounter chang- handicapped have greater access their abilities. ing valves in reusable cylinders. to the workplace, more ease in 3. An effective safety program. Accommodations have also communicating with co-workers, 4. Cooperation of nonimpaired been made to relieve handicapped and a wider range of job oppor- employees. individuals of job duties which tunities. The cost of most accom- 5. Reasonable accommodations to might aggravate their impairments. modations is nominal. address the special needs of They include reassigning duties, Examples of each type of handicapped employees. eliminating some parts of the job, accommodation appear on the While the first four elements and not requiring handicapped following page. cannot readily be measured, the employees to rotate through all 1001 survey did record the com- the assignments within a particular S efforts to make accommo- job title. In addition, they are Gamons that would enable handi- excused from working overtime capped employees to realize their or are moved from rotating shifts potential. In all, more than 3,000 to day work when necessary to different accommodations have protect them from added stress. been made in training, job pro- If the impairment is such that gression, job duties, facilities and a reasonable accommodation can- equipment to meet the needs of not be made to enable the indi- impaired workers. vidual to do the job, a position & is sought that lies within the individual's capabilities. In some cases, jobs are designated specif- ically for handicapped individu- als. Many of the mentally retarded employees the company has hired have been placed in such jobs. Du Pont has made many accom- modations to facilities, machines, 17 ACCOMMODATIONS Job Duties* Equipment Training Heavy lifting: back problem Teletypewriter: hearing Longer training cycles High noise areas: hearing Amplified phone: hearing Exposure to dust and chemicals: Talking clock: vision Handwritten communications for deaf-mutes allergies Talking computer terminal: vision Verbal communication of written Manual dexterity: stroke Optical reader (Optacon): vision material for mentally retarded High mobility: heart (pictured below) Sign language for deaf (pictured Climbing: amputee Telephone headset: nonparalytic below) orthopedic Moving equipment: epilepsy Light touch typewriter: arthritis Job Progression High temperature areas: diabetes Wheelchair: paralysis Reassignment to a different job Wearing a respirator: respiratory category Confined spaces: claustrophobia D nation of a job specifically for Traveling: vision a licapped individual Protection from involuntary job *Accommodations in this area include examples of displacement tasks that an employee with a particular impairment would not be required to do. Facilities Braille elevator floor designations Modified parking spaces Modified restrooms Modified cafeterias Ramps Raised desks Handrails in showers Elevator chairs Automatic doors 18 7 COMMUNITY PARTNERSHIP Du ont's efforts to expand job Many community organizations opportunities for handicapped which work with the handicapped people reach outside the company are heavily dependent upon as well. Du Pont sites are actively Federal funds for staffing and involved with some 60 organi- program needs. As government zations that provide work for hand- cutbacks in spending reduce icapped individuals in the com- grants to these organizations, the munity. People employed in these private sector will be challenged organizations perform tasks to do more. Du Pont's experience roughly equivalent to the work indicates that a community part- of 350 full-time Du Pont employ- nership works well-for the handi- ees, but the number of handi- capped and for the company. It capped people trained on these creates jobs for many handi- tasks is many times that number. capped people, helps the organi- Organizations involved in this zations become self-sufficient, work are of two types: sheltered and provides a necessary service workshops that provide work for to Du Pont. severely handicapped individuals Several examples of sheltered who require special supervision workshops and vocational rehabili- and may never get jobs in industry; tation centers illustrate Du Pont's and vocational rehabilitation commitment to community centers that train handicapped involvement. F ? to enter or re-enter the W force. Du Pont operates on a contract basis with most of these organi- zations for work that is not nor- mally performed at a plant site. Jobs performed by community organizations for Du Pont include: engraving, assembly and clerical work, sorting and packing mate- rials, sewing and labelling, clean- ing equipment, fabricating tools, and recovering scrap materials. In some cases, Du Pont buys products for which a sheltered workshop is the primary manu- facturer, such as brooms from Industry for the Blind. 19 Opportunity Center, Inc. Kent-Sussex Industries, Inc. Opportunity Center, Inc., em- Kent-Sussex Industries, Inc., lo- ploys 105 handicapped people cated in Dover, Delaware, trained and trains 20 other handicapped and employed 360 handicapped individuals for competitive place- individuals in 1980. With a 90 ment in industry. Communications percent placement rate, Client Director Linda Dedman says, "OCI Services Coordinator M. L. is 85 percent self-sufficient, with Andrews says, "We try to help the United Way and Delaware's people go from living on social Vocational Rehabilitation Program services to returning something to providing the balance." the community." Located near Du Pont's corpo- Depending largely on two-and rate headquarters in Wilmington, three-month contracts, KSI offers Delaware, the Center includes a general sewing, packaging and print shop, a wood shop, an infor- assembly, and collating and mailing mation processing department, services. The biggest Du Pont a packaging and assembly contract is the recovery of waste tment. Du Pont has several nylon. The nylon is cut off wind-up contracts with OCI for machining, tubes, the tubes are cleaned, and product inspection and finishing, both the nylon and the tubes are and the assembly of car care kits. sold. Andrews is especially mindful of Du Pont's concern for worker safety. Any worker who cannot perform a given job safely is moved to another assignment. 20 An $ Center of DATAHR, Inc. In response to the changing The Ability Center of DATAHR, needs of the community, the Inc., is a sheltered workshop and Ability Center has recently devel- vocational rehabilitation center oped a transitional employment serving about 110 handicapped program that operates as follows: clients in and around Danbury, a staff member goes to a company, Connecticut. The Center provides learns a particular job and then clerical, assembly, packaging, trains a handicapped individual to labelling and mailing services, and perform that job. At the end of an is a primary producer of handi- eight- to ten-week period of capped parking signs. Du Pont jobs employment, the sponsoring include the assembly and pack- employer has the option to retain aging of bottles, plugs, tubes, the employee full-time, hold the and adapters. job as a training position for The sheltered workshop pays another handicapped person to piece-work rates as an incentive learn the skill, or discontinue the to motivate handicapped clients program entirely. to improve themselves, as well as to assure customers a fair deal. Supervisor Laura Castagna explains, "There is a fine line between productivity and rehabilitation. We an obligation to rehabilitate, e also have an obligation to the companies that buy our services." 21 8 EQUAL TO THE TASK The significance of the 1981 survey The International Year of the -and earlier surveys as well-is Disabled has generated a height- the picture that emerges of the ened awareness and sensitivity handicapped as an important among the public concerning human resource. Once again, the needs and capabilities of hand- Du Pont employees with diverse icapped people. Concerned impairments have demonstrated groups throughout the country that they are eager and able will be watching to see whether to meet the challenges of initiatives taken in 1981 will serve employment. as the foundation of programs for In spite of the demonstrated the future. The challenge for all of ability of handicapped individuals us as employers is to prove that to do the job as well as nonim- we too are equal to the task. paired workers, their employment needs across the country are not being met. Only about 37 percent ndicapped people ages 17-64 nployed, compared with 69 percent of the total population in that age group.* Many of these people could make a valuable contribution to the work force and society as a whole if given the opportunity. The 1981 Du Pont survey offers some new insights on employ- ment of the handicapped in terms of the definition of "handicapped" that was used, types of accommo- dations the company has made, and initiatives taken with com- munity organizations. By sharing its experience with others, Du Pont hopes to expand employment opportunities for qualified handi- capped individuals. "From a statistical analysis by the President's Committee on Employment of the Handicapped using data compiled by the National Center for Health Statistics. 22 PENDIX The central problem in any effort The Du Pont survey includes any With reference to the third to measure employment of the individual who meets one of the criteria, the deciding factor in handicapped is determining who following criteria: determining if an individual is to should be counted. Experts have 1. The employee was hired as a be counted as handicapped is wrestled with this question for a handicapped individual. whether Du Pont made an accom- long time, and the answer varies 2. The employee has identified modation in the employment considerably. The Rehabilitation himself/herself to management process. For example, an employee Act of 1973 has adopted the broad- as handicapped and would like missing three fingers whose job est possible definition, covering to be included in Du Pont's has been restructured to eliminate individuals who are limited in any affirmative action program. activities requiring manual dex- life activity. The definition used in 3. The employee is likely to terity would be counted in the the Du Pont survey is drawn from experience difficulty in securing, survey. Another employee with applicable sections of the Act. retaining, or advancing in em- the same disability whose job Compounding the question of ployment because of a physical requires no manual dexterity and definition is the difficulty of or mental impairment that for whom the company has made trying to identify handicapped might: no accommodation would not be members of the work force. Many Prevent the employee from counted as handicapped, even of them, once employed, become handling such jobs as the aver- though he or she might well be so much a part of the mainstream age nonimpaired worker could considered handicapped in seek- that their disabilities are no longer handle, or ing employment elsewhere. apparent. Limit the employee from Individuals whose disability is competing in his/her job pro- temporary and who are not gression system, or expected to have any residual Require the modification of impairment after recovery are training programs, job duties, not considered handicapped. equipment, facilities, or work schedules, or Require more than normal effort to communicate with the employee, or Require that more than normal consideration be given to the employee's mobility in case of emergency or disaster. 23 SUPOND MEDICAL DIVISION 1 I'm pleased with the findings of the 1981 survey. They confirm what we already knew from direct, personal experience-that the handicapped are an important human resource. In my judgement, all employers would serve society and themselves by providing increased opportunities for handicapped individuals to achieve their potential as self- sufficient, contributing members of the workplace and the community. " Edward G. John Edward G. Jefferson Chairman Anyone visually impaired may obtain a free cassette recording of this study by writing to: E.I. du Pont de Nemours & Company (Inc J Public Affairs Department 8084 DuPont Building Wilmington, DE 19898 E.I. du Pont de Nemours & Co. (Inc.) Wilmington, DE 19898 OUPONT REASONABLE ACCOMMODATION- THE EMPLOYMENT STORY U.S. GOVERNME. T PHOTO For mòre information contact: Ralph D. Rouse, Jr. Division Director Office for Civil Rights U.S. Department of Health and Human Services 1200 Main Tower, Room 1360 Dallas, Texas 75202 (214) 767-4056 (214) 767-8940 TDD Developed under contract to the Region VI Technical Assistance Staff, U.S. Department of Health and Human Services, by: Kemp & Young, Inc. 6405 Metcalf, Suite 514 Overland Park, KS 66202 (913) 677-1800 (Voice and TTY) This videotape is about the "reasonable accomodation" provisions of the employment requirements of the Regulation for Section 504 of the Rehabil- itation Act of 1973. It is entitled "Reasonable Accommodation - the Employment Story," and was produced by Kemp & Young, Inc., a human resources consulting firm, under contract with the U.S. Department of Health and Human Services, for the Regional Technical Assistance Staff, Region VI, Dallas, Texas. This presentation is approximately 20 minutes long. The purpose of the tape is to suggest methods for making "reasonable accom- modations" for disabled persons in the employment setting. It shows indivi- duals who have had accommodations made for them to facilitate employment in the hospital setting; however, the videotape will also be helpful for U.S. GOVERNME T PHOTO other employers. Examples are shown of five main types of accommodations: (1) modification of the worksite and commonly-used areas; (2) use of assistive aids and devices; (3) provision of readers for persons with impaired vision, and interpreters or other forms of communication for hearing- impaired persons; (4) adoption of flexible personnel policies which allow flexi- time, part-time employment or extended rest periods, etc; and (5) job restructuring, reassignment of nonessential tasks, and work task trading. -i- INTRODUCTION In 1973, Congress added Title V to the Rehabilitation Act. That section of the law provides civil rights protection for handicapped individuals in four main parts: Section 501 - requires the Federal government to take affirmative action to hire and advance qualified handicapped persons. Section 502 - creates the Architectural and Transportation Barriers Compliance Board to enforce the Architectural Barriers CLOHA 'S'N Act of 1968. That Act requires buildings that are constructed, GOVERNME. altered, leased, etc. with Federal funds to comply with "barrier free" design standards. Section 503 - requires Federal contractors or sub-contractors with contracts of $2500 or more to take affirmative action to hire and advance qualified handicapped persons. Section 504 - prohibits discrimination against qualified handi- capped persons in employment and the provision of services by Federal grantees. It is important to distinguish the difference between "affirmative action" as required by Sections 501 and 503 and "non-discrimination" as required by Section 504. The term "affirmative action" is used exclusively with refer- ence to employment. Both Sections 501 and 503 require an employer to recruit disabled persons for employment within the organization. And, under Section 503, if the employer has more than 50 employees and more than $50,000 in fed- eral contracts in the current year, the employer is required to have a written affirmative action plan for the hiring and promotion of disabled persons. "Non-discrimination," on the other hand, under Section 504, can be applied to the provision of services as well as to employment and only requires that poli- cies and practices not have the effect of discriminating against handicapped persons. -ii- SECTION 504 EMPLOYMENT PROVISIONS - SUBPART B The employment provisions of the Section 504 Regulation are covered by Subpart B. Recipients of Federal financial assistance (grants) from the Department of Health and Human Services must comply with these provisions in developing and implementing employment practices. Section 84.11 (a) states: "No qualified handicapped person shall, on the basis of handicap, 1 'S'N be subjected to discrimination in employment. This requirement applies to all employment situations, including part-time GOVERNME. employment. The most common employment-related activities covered by Sub- part B include: Recruitment, advertising, and the processing of applications for employment; Hiring, upgrading, promotion, award of tenure, demotion, transfer, lay-off, termination, right of return from lay-off, and rehiring; Rates of pay or any other form of compensation and changes in compensation; Job assignments, job classification, organizational structures, position descriptions, lines of progression, and seniority lists; Leaves of absence, sick leave, or any other leave; Selection and financial support for training, including apprentice- ship, professional meetings, conferences, and other related acti- vities, and selection for leaves of absence to pursue training; Any other term, condition, or privilege of employment; and Fringe benefits available by virtue of employment, whether or not administered by the employer. In addition, employers covered by Section 504 may not participate in a contractual or other relationship that has the effect of subjecting quali- fied handicapped applicants or employees to discrimination. This includes relationships with employment and referral agencies, labor unions, organi- zations providing or administering fringe benefits, and organizations pro- viding training and apprenticeship programs. Several definitions are necessary for a better understanding of the Subpart B requirements. -1- HANDICAPPED PERSON - any person who: (i) has a physical or mental impairment which substantially limits one or more major life activities, (ii) has a record of such an impairment, or (iii) is regarded as having such an impairment. a. Physical or mental impairment - any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more body systems; or any mental or psychological disorder and specific learning disabilities. b. Major life activities - functions such as caring for one's self, performing manual tasks, walking, seeing, hearing, U.S. GOVERNME, T PHOTO speaking, breathing, learning, and working. Section 504 only protects qualified handicapped persons. For the purposes of employment, a qualified handicapped person is defined in the Regulation as: A handicapped person - who, with reasonable accomodation, can perform the essential functions of the job in question. The Comprehensive Rehabilitation Services Amendment of 1978, P.L. 95-602, added the following sentence to the definition of "handicapped individual": For purposes of Section 504, as such sections relate to employment, such term does not include any individual who is an alcoholic or drug abuser whose current use of alco- hol or drugs prevents such individual from performing the duties of the job in question and whose employment, by reason of such current alcohol or drug abuse, would consti- tute a direct threat to property or the safety of others. (Emphasis added.) The key issues concerning whether a handicapped person is qualified to perform a particular job are: What are the essential functions of the job; i.e., what basic qualifications are necessary to perform the job? Are there reasonable accomodations available that would enable the handicapped person to perform the essential job functions? Because of the unlimited variety of circumstances under which an individual may be expected to perform a particular job, the determination as to whether a particular job function is "essential" must be made on a case-by-case basis. The Office for Civil Rights (OCR) of the Department of Health and Human -2- Services is responsible for ensuring compliance with the Regulation for recipients of Federal financial assistance from that Department. When a question arises concerning the essential nature of a job function, OCR has determined that the burden is on the employer to demonstrate that the job function is "essential." Section 84. 12 of the Regulation states that an employer "shall make reason- able accommodation to the known physical or mental limitations of an other- wise qualified handicapped applicant or employee unless the recipient can demonstrate that the accommodation would impose an undue hardship on the operation of its program." (Emphasis added.) If the handicapped person does not explain the nature of his/her handicap and does not request an accommoda- tion, there is no violation of the Regulation. For example, if an employee, who has a learning disability and has difficulty with timed tests, does not U.S. GOVERNME. T PHOTO inform the employer that he/she needs an accomodation when taking a promo- tional examination, the employer is under no obligation to provide one. Reasonable accomodation must be applied to all employment decisions made by an employer, not simply hiring and promotion decisions. For example, an employer may be required to make a reasonable accommodation with respect to policies, such as job assignments, transfers, leaves of absence and sick leave. When additional time off, leaves of absence and additional sick leave are provided, the employer is not required to offer these with pay to the disabled person unless the employer has paid nondisabled persons for these additional benefits. REASONABLE ACCOMMODATION Reasonable accomodation is not defined in the Regulation; however, a list of possible accomodations is provided. Section 84. 12 (b) states: "Reasonable accomodation may include: (1) making facilities used by employees readily accessible to and usable by handicapped persons, and (2) job restructuring, part-time or modified work schedules, acquisition or modification of equipment or devices, the provision of readers or interpreters, and other similar actions." Examples of specific forms of reasonable accommodation include: Modification of work sites and commonly-used areas, such as parking lots, telephone and dining facilities, bath- rooms and work benches; Provision of assistive aids and devices; -3- Provision of readers for persons with impaired vision; or interpreters or other methods of effective communication for deaf or hearing-impaired persons; Adoption of flexible personnel policies which allow flexi- time, part-time employment or rest periods; Job restructuring, reassignment of non-essential tasks, and work task trading. U.S. GOVERNME. Clearly, this is not an exhaustive listing. Because the accomodation is geared to the limitations of the otherwise qualified applicant or employee, reasonable accommodation may take a variety of forms. It is important, therefore, to attempt to arrive at a functional definition of the term in order to determine what is an "accommodation" and whether a particular accom- modation is "reasonable" under each fact situation. DETERMINATION OF "REASONABLE" In determining the reasonableness of an accomodation, one must look at it from two perspectives. First, from the point of view of the handicapped per- son, the accommodation must be sufficiently effective in overcoming the mental or physical limitations SO as to enable the person to perform the essential functions of a particular job. For example, providing a machine that enlarges print instead of hiring a reader for a person who is totally blind would not be reasonable because it is ineffective. Second, from the point of view of the employer, the accomodation must enable a handicapped person to perform essential job functions, not supplant the need for the handicapped person. It is unreasonable to deem a handicapped person "qualified" if it is necessary that a second person be hired to perform the essential functions of the job. It is not the fact that a second person is required that determines whether an accomodation is reasonable, since a reasonable accomodation may include the provision of a reader or interpreter. Rather, the key factor is whether the person hired enables the handicapped person to perform the essential functions of the job or whether the second person effectively replaces the handicapped person by performing those essen- tial job functions. For example, a man with a low back disability applies for- a job in a storeroom. The job requires lifting boxes weighing over 40 pounds at least 50 percent of the time. He requests that this task be given to another worker. However, the second worker in this situation would be replac- ing a need for the applicant who is unable to perform the "essential" job tasks. PROVIDING THE ACCOMMODATION The first person the employer should consult about the need for an accommo- dation or the type of accomodation needed is the handicapped employee. For -4- example, a hearing impaired person was hired to work in a busy office. The first day on the job the supervisor proudly showed him the TTY that had been purchased to provide reasonable accomodation in making telephone calls. (A TTY is a teletypewriter that can be used by deaf and hearing impaired persons to communicate via telephone.) The hearing impaired person was dismayed because he could not use the type of TTY which was purchased as a result of a vision impairment, and an amplified telephone available from the telephone company for a minimal charge would have been sufficient to enable him to per- form essential job tasks. However, the employer is not required to provide the accommodation proposed U.S. GOVERNME. by the handicapped person if an alternative accomodation is as effective. For example: A mobility impaired person indicates that he needs a special type of chair costing $400. The employer locates another chair costing $100 that meets the needs of the handicapped person. A blind person requests a reader as a reasonable accomodation. The employer determines that the necessary accommodation can be provided by restructuring the job. A social worker who becomes disabled requests, as an accomo- dation, another person to accompany her on home visits. The employer offers the employee an alternative job that does not require home visits. The alternative job constitutes a reason- able accommodation since it is comparable to the employee's existing job. For purposes of determining whether an alter- native job placement is comparable, the following factors, among others, should be considered. - salary scale (including fringe benefits); - nature and scope of responsibilities; - potential for promotion; - seniority; - proximity to the existing worksite. A worker with a history of mental illness requests one week's additional paid time off because job stress is causing the disability to recur. The employer offers the worker flexitime to reduce stress. The State Office or Department of Vocational Rehabilitation and agencies that provide services to handicapped persons will be a good resource if the employer and employee are unable to solve the problems on their own. UNDUE HARDSHIP It is the employer's responsibility to provide the accommodation unless it -5- would impose an "undue hardship." In-house resources can be used in a variety of ways. For example, staff can modify existing equipment and facilities and/or act as aids/interpreters or share work tasks. Community resources such as the State Department of Vocational Rehabili- tation, private non-profit agencies which serve handicapped persons and service organizations may be able to assist in providing the necessary accomodation. If an "undue hardship" can be shown, the employer is excused from making the reasonable accomodation. In determining whether an accommodation would impose an undue hardship on the operation of a program, factors to be considered include: U.S. GOVERNME. PHOTO The overall size of the program with respect to number of employees, number and type of facilities, and size of budget; The type of operation, including the composition and structure of the workforce; and The nature and cost of the accomodation needed. For example, an RN with kidney disease requests every Saturday off for hemo- dialysis treatment. She works in a small outpatient clinic which employs four registered nurses and requires each to work one Saturday per month. Providing her with every Saturday free would result in under-staffing or unfair additional weekend work for the other three RN's. Taking into con- sideration the composition and structure of the workforce, the provision of this accommodation would impose an "undue hardship" on the hospital. It is important to note that the undue hardship provision only applies to the employment setting. If adjustments or aids are needed to provide ser- vices to handicapped persons, the undue hardship provisions cannot be used. A RECIPIENT MUST PROVIDE AN EMPLOYMENT OPPORTUNITY EVEN WHEN EXCUSED FROM PROVIDING THE ACCOMMODATION If an employer can demonstrate that the provision of an accommodation would impose an undue hardship, he/she is excused from providing the necessary accommodation without violating the regulation. However, "undue hardship" cannot be used as an excuse to deny employment. The handicapped individual must be given the opportunity to arrange for his/ her own accommodation in order to take advantage of the employment opportunity. Such arrangements may include the provision of the accomodation by a public or private non-profit agency. However, it is the recipient's responsibility to investigate this alternative first. For example, assume that a small research organization receiving a grant from HHS advertises an opening for a position as a computer programmer. A physically disabled person applies for the job. The recipient is able to demonstrate that it would impose an undue hardship on the operation of its program if it were to acquire or modify equipment to enable the person to operate the computer. Assume that the handicapped individual expressed a willingness to pay for the necessary modification or purchase the special equipment necessary to enable him/her to operate the computer. Although the employer need not provide the accommodation, it would be a violation of Section 84.12 (d) if the employer were to deny a job to a qualified handi- capped person who is willing to provide his/her own accommodation. U.S. GOVERNME. T OTHER REQUIREMENTS OF SUBPART B Employers should be aware of the other two sections of Subpart B. Section 84.13 covers employment criteria and requires employers to use tests that measure job-related skills only. Section 84.13 (b) states that an employer: shall select and administer tests concerning employment SO as best to ensure that, when administered to an applicant or employee who has a handicap that impairs sensory, manual, or speaking skills, the test results accurately reflect the applicant's or employee's job skills, aptitude, or whatever other factor the test purports to measure, rather than reflecting the applicant's or employee's impaired sensory, manual, or speaking skills (except where those skills are factors that the test purports to measure)." Section 84.14 contains the requirements with respect to pre-employment inquir- ies. Employers may not inquire as to whether an applicant has a handicap or ask questions about the nature or severity of a handicap. However, inquiries are permitted about an applicant's ability to perform job-related functions. If an employer is taking remedial or voluntary action to correct the effect of past discrimination or is covered by Section 503 and is taking affirmative handicapped and to what extent, provided that: action, applicants for employment may be invited to indicate whether they are "(1) the [employer] states clearly on any written questionnaire used for this purpose, or makes clear orally if no written ques- tionnaire is used, that the information requested is intended for use solely in connection with its remedial action obligations or its voluntary or affirmative action efforts; and (2) the [employer] states clearly that the information is being requested on a voluntary basis, that it will be kept confidential and that refusal to provide it will not subject the applicant or employee to any adverse treatment." An offer of employment may be conditioned on the results of a medical exami- nation provided that (1) the examination is required only after an offer of -7- employment has been made; and (2) all entering employees are subjected to such an examination. Information collected as described above must be given confidentiality as medical records. The following types of people may be told about this information: (1) Supervisors and managers may be informed regarding restric- tions on the work or duties of handicapped persons and regarding necessary accommodations; (2) First aid and safety personnel may be informed, where appropriate, if the condition might require emergency U.S. GOVERNME. T PHOTO treatment; and (3) Government officials investigating compliance with the Act shall be provided relevant information upon request. -8- U.S. GOVERNME. T PHOTO DY NARRATIVE SCRIPT Reasonable Accommodation - The Employment Story Ralph Rouse, Director, Technical Assistance "Reasonable accomodation" is a term used in Staff, Dallas, Texas Federal regulations to describe adjustments in the work environment which allow a disabled person to perform the functions of a job. We have sought out creative examples of accommoda- tions and attempted to provide guidance on the methods by which accomodations may be identified. U.S. GOVERNME. T Analyzing the essential job tasks with the disabled applicant or employee is important. Remember, accommodations are made to each indi- vidual's handicapping condition, and they may be different for individuals who appear to have the same disability. The Technical Assistance Staffs in regional offices of the U.S. Department of Health and Human Services throughout the country are available to assist you in solving critical problems associated with the employment of dis- abled persons. I am Ralph Rouse, Director of the Technical Assistance Office in Dallas, Texas. Any employer, whether in a hospital setting or not, can benefit from this tape and can apply the principles demonstrated. John Kemp, President Kemp & Young, Inc. Hi. I am John Kemp and this is Robert Young. We are the principals of Kemp & Young, Inc., a human resources consulting firm. In 1973 Congress passed the Rehabilitation Act, specifically Section 504 of Title V of the Act, which prohibits discrimination against handi- capped people. A big step in eliminating discrimination in employment is the removal of physical and proce- dural barriers that have been unintentionally established by institutions. TO provide equal employment opportunity, health care institutions can and should make reasonable accommodations to physical and mental limitations of handicapped applicants and em- ployees. Page 2 Robert W. Young, We have chosen three metropolitan hospitals: Chief Operating Officer Menorah Medical Center, St. Joseph Hospital, and Kemp & Young, Inc. this hospital, St. Luke's, to illustrate some types of reasonable accomodations which are crea- tive, cost-effective, and safe, and, in fact, have been made right here. You will see examples of 5 main types: (1) modification of worksite and commonly-used areas; U.S. (2) use of assistive devices; (3) provision of readers for persons with impaired vision and inter- preters or other forms of communication for hearing- impaired persons; (4) adoption of flexible personnel policies which allow flextime, part-time, or ex- tended rest periods; etc.; (5) job restructuring, GOVERNME. reassignment of nonessential tasks, and work task trading. Accommodations may be negotiated in a vari- ety of ways. You may be able to anticipate some, but more often, disabled persons will come to you with a request or an idea which will enable them to function better in their jobs. John D. Kemp Be creative. Utilize your hospital and com- munity's resources to solve accomodation problems. While same requested accommodations cannot be made, most cost little or no money, or won't disrupt the provision of health care services. Persons with disabilities are easier to employ than you may think and right here are some employees we want you to meet. Sharon Royality Accommodations: Elevator Operator Disability - cerebral 1. Flexible personnel policies: given extra palsy 15 minutes for lunch, unable to carry tray. 2. Modification of worksite: (a) could not handle princess phone due to lack of hand coordination-substituted regular receiver; (b) handicapped parking lot permit) 3. Purchase of adaptive aids: (2nd elevator uses tourniquet to adapt princess phone) 4. Job Restructuring: (can't dial SO calls operator for connecting outgoing calls) Page 5 Karl Hirsch Accommodations: Hemodialysis Equipment Manager 1. Purchase of assistive devices: screwdriver Disability - visual impairment now used by all persons working on mach- ines, large magnifying glass with fluores- cent light. 2. Provision of aids: use of dictating equipment and secretaries to type, although position would not normally warrant secre- tarial support, fellow employees drive him to patient homes when called for. U.S. Janice Kelly Accommodations: Employment Specialist Disablility - Mobility 1. Modification of commonly used areas: put in impaired, post polio, sliding doors, moved and lowered the time scoliosis clock and retimed the elevators. GOVERNME, Frank Estrada Accommodations: Accounting Clerk 1. Flexible Personnel Policies: provided extende Disability - quadraplegic rest periods 1 - 2 hours per day. Does 8 hour work in 10 hours. 2. Purchase of adaptive aids: arranged for a writing splint and universal cuff through vocational rehabilitation. 3. Provision of an aid: fellow worker helps him out of his chair SO he can rest. Marion Japins Accommodations: Computer Programmer 1. Provision of interpreter: qualified inter- Disability - profound preter is hired for in-service training deafness programs; a co-worker signs at work. 2. Purchase of assistive device: provided her with a telecommunications device. Robert Young You have seen examples of modification of worksite; use of assistive devices; provision of readers and interpreters; adoption of flexible personnel policies; and job restructuring. All the accomodations demonstrated here cost the hospitals collectively less than $3000.00. TO maintain each of the same employees on welfare or unemployment during a nonproductive lifetime would cost us $1,000,000.00. Reasonable accommodations have made these disabled persons taxpayers, not tax users. John Kemp Thanks to the farsightedness of Menorah, St. Joseph and St. Luke's, we are able to show you real accommodations working for the hospi- tals and their employees. We hope this will be helpful to you when you are making your employment decisions. Page 4 Sister Elizabeth Deutsch Accommodations: Pastoral Care Disability - chronic spinal 1. Flexible personnel policies: works cord disorder when she is able, guard parks her car in bad weather. Sandra Price Accommodations: Computer Programmer Disability - visual impair- 1. Provision of reader: -fellow employees ment, diabetes read printed matter to her on request. U.S. T PHOTO 2. Assistive devices: specially-designed GOVERNME, card reader, brought to job by Sandra and designed by Washington University in training program. Charles Brownrigg Accommodations: Printer Disability - epilepsy 1. Purchase of assistive devices: electric paper cutter with pressure on two buttons necessary for operation insures safety of worker. (This was not specifically bought for him, but his disability was taken into consideration.) 2. Provision of aids: Supervisor and fellow worker are trained in steps to take should Charles have a seizure. Shelley McQueeny Accommodations: Supervisor, Cardiovascular Non-invasive Laboratory 1. Flexible personnel policies: works on an Disability - respiratory "as can" basis, takes work home, is paid disease for full-time status. 2. Job restructuring: will become Assistant Coordinator of Cardiovascular Laboratory, resulting in a promotion as well as less physical duties, which benefits both parties. Page 3 Sam Runyon Accommodations: Director, In-service Training, Respiratory 1. Job restructuring: no longer does student and Biomedical Engineering inhalation therapist evaluations on the Disability - heart disease floor due to physical exertion required. 2. Flexible personnel policy: 2 hours off on M,W,F to attend Hearth Institute Rehab classes; 1 hour is vacation time; 1 hour, lunch and breaks. Jeanne Hylton Accommodations: Radiology Technology Student Disability - cerebral palsy 1. Flexible personnel policy: scored low on U.S. GOVERNME. T PHOTO entrance test because of lack of coordina- tion in writing skills accepted into pro- gram based on academic record and high motivation. 2. Job restructuring: given more time for class work and lab tests, placement in non- essential areas. May need some accommodation when working at real job. Eva Sprague Accommodations: Medicare Audit and Billing Clerk 1. Modification of worksite: she is given Disability - congenital hip middle level file space SO she won't have defect to reach low or high; handicapped parking space. Melvin Harkins Accommodations: Electron Microscopist Disability - mobility- 1. Modification of commonly-used area: parking impaired space next to worksite not with regular handicapped parking area. Denny Eppright Accommodations: Housekeeping Department Disability - hearing 1. Alternative means of communication: all impairment instructions are written. Please note that not all deaf persons can understand written English. This material is reprinted from the Handicapped 640:1 Requirements Handbook, copyright Federal Programs Advisory Service, 2120 L Street, N.W., Washington, D.C. It is reprinted with permission of the publisher. 1640 What Is "Reasonable Accommodation"? Recipients are required to make reasonable accommodation to the known physical and mental limi- tations of otherwise qualified handicapped applicants and employees "unless the recipient can demon- strate that the accommodation would impose an undue hardship on the operation of its program." A "reasonable accommodation" is an adaptation of the work place, the equipment, or the job itself which enables a handicapped employee to do a particular job for which she or he is qualified in training and abilities. Employers should note that individuals with handicapping conditions are qualified, if, with rea- sonable accommodations to the handicap, they are able to perform the essential functions of the job (see 1630). Employers should make certain that essential and nonessential functions of jobs are well defined before any individual job is posted or advertised. In order to implement the "reasonable accommodation" standard effectively, recipients may wish to analyze job descriptions to determine essential and nonessential functions. Without such a definition, it will be difficult to determine whether a particular handicapped person is "qualified" or whether an accommodation is successful in allowing an individual to perform essential job functions. For example, in the case of a person who cannot lift heavy boxes, he or she may not be qualified for a position that requires regular heavy lifting (where heavy lifting is an "essential job function"), but may be qualified for a position that requires heavy lifting occasionally (where the heavy lifting function is not "essen- tial" and may be transfered to another employee through reasonable accommodation). An accom- modation need not be made if it requires the employer to modify essential job requirements; in such an instance it would not be discriminatory to deny employment or advancement in employment to a handi- capped person who, despite accommodation, cannot perform the essential job functions (i.e., is not "qualified"). Although the government-wide regulations do not contain examples of reasonable accommodations, the interpretation preceeding the guidelines suggests that individual federal funding agencies include such examples in their section 504 rules. It also invites agencies to pattern examples after those appear- ing in the May 4, 1977, regulations for Department of Health and Human Services (HHS) and Depart- ment of Education (ED) recipients (Appendix III:C). Most agencies, in issuing their agency-specific section 504 rules, have followed the HHS, ED regulations which include the following examples: (1) making facilities used by employers readily accessible to and usable by handicapped persons. (This includes, but is not limited to, making common areas accessible, such as entrances, hall- ways, restrooms, cafeterias and lounges.) (2) job restructuring, part-time or modified work schedules, acquisition or modification of equip- ment or devices, the provision of readers or interpreters, and other similar actions. In addition, the U.S. Office of Personnel Management has suggested a range of accommodations in the job environment that may be made for handicapped persons, including: Federal Programs Advisory Service May 1986 Handicapped Requirements Handbook 640:2 Blind and visually impaired-rearranging fixtures and supplies, labeling shelves in braille, avoiding clutter in corridors and passageways; providing opportunities to hear and touch as a means of supervisory instruction, use of writing and drawing aids, optical aids such as magni- fiers, etc. Deaf and hard of hearing-shifting of phone answering responsibilities to other employees. use of amplification devices, use of a co-worker for receiving and transmitting communications that require use of the telephone or during office conferences. Mentally retarded-breaking down other jobs into smaller, simple components and reassigning simple tasks; or reassigning lesser duties from higher level employees to lower level ranks. The object of such changes should be to identify tasks that reduce the need for learning many details, exercising judgment, or finding new solutions to problems. Physically less mobile-architectural and other physical accommodations are described in Hand- book Chapter 400 on ''Architectural Accessibility." It should be noted that the above suggestions emanate from the Office of Personnel Management and do not necessarily reflect what may be required by other federal funding agencies in their section 504 regulations. As recipients plan accommodations for qualified handicapped employees and applicants, they should, of course, consult with the disabled individual involved. Also, state vocational rehabilitation agencies, and private service organizations, may be able to provide the necessary assistance at little or no cost to the federal fund recipient. (See also the "response chart" included at Appendix VII.) Changing an employee's duties or work environment because of a job related injury and restructur- ing a job in order to hire a handicapped applicant are both examples of reasonable accommodation. A recipient who makes reasonable accommodation for a qualified handicapped employee should document such action. Further examples of reasonable accommodation might include making facilities used by employees readily accessible to and usable by handicapped persons, instituting part-time or modified work schedules, acquiring or modifying equipment or devices, and providing readers or interpreters for employees with sensory disabilities. The key thing to remember is that employment opportunities may not be denied to a qualified handicapped employee or applicant if the basis for the denial is the need to make reasonable accommodation to that person's physical or mental limitations. "Reasonable accommodation" will in many cases simply mean having an open mind towards em- ployees who use techniques not common to the general population, but are perfectly effective in per- forming job functions. Employers are cautioned against assuming that using different techniques to get the job done means inferior performance. It is clear that employment opportunities may not be denied to qualified handicapped persons on account of the need to make accommodations that are reasonable. However, it is also clear that no handicapped person need be hired or promoted if he or she is not "qualified" to perform the essential functions of the job, if a reasonable accommodation does not overcome the effects of the person's Federal Programs Advisory Service May 1986 Handicapped Requirements Handbook 640:3 handicap and permit him or her to perform essential job functions, or if an accommodation would im- pose an undue hardship on the program. When does an accommodation impose an "undue hardship"? An accommodation need not be made on behalf of a qualified handicapped person if the accommo- dation would impose an "undue hardship" on the operation of the program. Determining whether an accommodation is "reasonable" or would impose an "undue hardship" requires some subjective judg- ment, since these terms are not defined or illustrated in the government-wide regulations. However, the government-wide interpretation again suggests that individual agencies include examples in their rules in order to clarify the general requirements. For Department of Health and Human Services (HHS) and Education Department (ED) recipients, factors to be considered in determining whether an accommoda- tion would impose an undue hardship (Appendix III:C) include: the overall size of the recipient's program with respect to number of employees, number and type of facilities, and size of budget; the type of the recipient's operation, including the composition and structure of the work force; and the nature and cost of the accommodation needed. Three examples of these concepts were also provided in the analysis appended to the HHS, ED rules: a small day care center may be required to spend only a nominal amount to accommodate handi- capped persons, such as that ocurred in the installation of a telephone amplified for a hearing-impaired secretary; a large school system may be required to assign a full-time paraprofessional to assist a blind teacher; or a state welfare office may be required to hire an interpreter to work with a deaf employee, while the same requirement would be considered an undue hardship for a small provider of home-care services. The government-wide guidelines identify cost and business necessity as two factors relevant to de- fining what constitutes an "undue hardship" sufficient to relieve the employer of the obligation to ac- commodate a handicapped individual. Thus. if a particular accommodation is expensive and an employer's financial resources are limited, the cost of the accommodation may constitute an "undue hardship." In addition, if a compelling business interest justifies the way a program is operated, an accommodation that would require changes in the program's operation might be viewed as imposing an undue hardship on the employer. The following is one example of an accommodation which imposes an undue hardship on the oper- ations of an employer, even though it presents no financial burden on the employer. Assume the police forces of two adjacent towns decide in order to more efficiently respond to a major emergency, to combine their dispatch and communications facilities at one location. After considering several sites, police officials decided to locate the facilitiy in a vacant bomb shelter in one of two town halls. The bomb shelter was chosen primarily because it could remain operational in almost any major disaster. The shelter has no windows and only one entrance at the bottom of a long flight of stairs. Federal Programs Advisory Service May 1986 Handicapped Requirements Handbook 640:4 One of the town's dispatchers is confined to a wheelchair and is a "qualified handicapped individ- ual" under section 504. Given the dispatcher's history of successful performance in the job, it is clear the only accommodation necessary is one that would give her access to the new facility. The town hall in question already has an elevator that runs from the ground floor to the upper stories of the building. The town's engineer estimates that it would cost approximately $15,000 to extend the elevator down one floor into the basement. The combined budgets of the two towns certainly would permit an expenditure of the size in ques- tion, so the accommodation is "reasonable" from a financial viewpoint. If the sole consideration is financial, it might be difficult to argue that the cost of the elevator extension alone would constitute an undue hardship. However, whether the nature of the proposed accommodation would impose an undue hardship on the operation of the dispatch office is another question. As the police might argue, the breach in the security of the dispatch office that would result from the elevator extension might com- promise severely the very reason the particular bomb shelter site was chosen. If the physical security of the office is jeopardized. the achievement of the police department's objectives may be impossible. In such a case, the elevator extension, by its very nature, would appear to present an example of an undue hardship (and, therefore, not be a "reasonable" accommodation). even though it is not unreasonable on its face. The employer could legally refuse to provide the accommodation. Recipients are reminded that in determining the "reasonableness" of an accommodation, employers must focus carefully on whether the accommodation will assist the handicapped worker or applicant in his or her effective completion of "essential" job functions. If the accommodation satisfies this crite- rion, and does not impose an undue hardship, it would have to be provided by the employer. However, handicapped persons cannot be denied employment or advancement in employment when an accommo- dation related to a "nonessential" job function would impose an undue hardship on the employer's operations, since they are "qualified" for employment merely when capable of performing "essential" functions. If a costly accommodation is not related to an "essential" job function, and a handicapped person would therefore, be "qualified" to perform essential functions without accommodation, less costly alternatives (e.g., shifting job duties or making minor modifications in job positions) should be considered for performing nonessential job functions. It should be noted that the amount of federal financial assistance received is not taken into account in determining "undue hardship." Consequently, a recipient with a large program that receives a small amount of federal assistance might be required to make accommodations that are costly relative to the assistance being received. It should also be emphasized that, as with all other aspects of section 504, no accommodations need be made unless they are necessary to achieve equal opportunity. The need for any accommodation should be based on the individual circumstances related to a particular handicapped employee or appli- cant. Individuals with similar handicaps will not necessarily require similar accommodations. Depending on the size of the recipient's operations, and the degreee of decentralized authority with regard to hiring and promotion, it may be advisable to set specific standards for reasonable accommo- Federal Programs Advisory Service May 1986 Handicapped Requirements Handbook 640:5 dation and undue hardship. It may be necessary to have decisions regarding reasonable accommodation or undue hardship made centrally (or recommended by the personnel office). These concepts require an understanding of the principles involved, a knowledge of what factors would constitute an undue hard- ship at any given point in time, and experience in applying the standards fairly and consistently throughout the various programs and offices of the recipient. Even the most autonomous units witin a recipient's organization (in terms of hiring and promotion authority) should be held to rigid standards and/or subject to the recommendations of a central personnel authority. If they are not, these complex concepts may be applied with a lack of uniformity, with a disregard for the recipient's resources, or in a manner that is prohibited by section 504. Clarification of what is a reasonable accommodation In Southeastern Community College V. Davis (Appendix IV:22), the U.S. Supreme Court held that a recipient of federal financial assistance need not make substantial or major adjustments and modifica- tions to its programs so as to allow a handicapped person to participate if the person could not reasona- bly be expected to perform the tasks that a typical graduate of its program would be required to perform. The case involved a deaf woman seeking entrance to a nursing program. In reaching its con- clusion, the Court held that an "otherwise qualified" handicapped person is one who is able to meet all program requirements including physical qualifications, despite one's handicap. While the Supreme Court in Jennings V. Choate (abstracted at Appendix IV:130 as Jennings V. Alexander), made clear that "meaningful access" to programs for handicapped persons must be pro- vided, it reiterated that substantial changes or modifications in a program. or changes which would constitute a fundamental alteration in the nature of the program were not required. Since the Davis decision, lower courts and administrative law judges, in following the guidance of the Supreme Court, have consistently held that such fundamental alterations are not required. The cases address the issue in the context of what is a "reasonable accommodation" or whether the handicapped person is found to be a "qualified handicapped individual." In Gardner V. Morris (Appendix IV:286), an employer who was unable to guarantee that proper medical treatment could be provided at a remote workplace was found not to be in violation of the Rehabilitation Act because of a refusal to transfer the handicapped employee to that station. There are many cases involving the U.S. Postal Service which give some clarification to this issue, particularly when the job involves physical and mechanical functions. In Jasany v. United States (Ap- pendix IV:302), the Postal Service was not required to eliminate an essential job function to accommo- date a handicapped person. The individual had eye problems which precluded him from operating a particular piece of equipment which was an essential part of his job. The court held that reasonable accommodation does not require eliminating an essential job function. Similarly, a court held that a plaintiff with knee problems would not be considered otherwise qualified for the position of mail carrier because he was unable to perform the standing, walking, and carrying required in the job. (See Alder- Federal Programs Advisory Service May 1986 Handicapped Requirements Handbook 640:6 son V. Postmaster General, Appendix IV:297. For other decisions based on Jasany. see Appendix IV:339, 341 and 343.) Cases under section 503 of the Rehabilitation Act relating to affirmative action in employment re- quirements for federal contractors sound a similar theme. See, for example, administrative law judges opinions at Appendix IV:1019, 1020 and 1021. In Nelson v. Thornburgh (Appendix IV:210), the court made clear that where the handicapped per- son with the accommodation could do the job, such person would be considered qualified. In that case, blind persons with the assistance of readers could perform all the requirements of their position as well as their sighted colleagues. The state agency which employed them was held to be responsible for pro- viding the necessary accommodation, readers. From the case law, the necessity for employers to have documented knowledge of the job require- ments as well as the nature of the individual's handicapping condition is underscored. In Mantolete V. Bolger (Appendix IV:322), a case involving a person with a seizure disorder and his ability to operate particular Postal Service equipment, the court made clear that an employer must have objective evidence of what is required to do the job, as well as the consequences of hiring the handicapped individual in question. A prospective employee could not be rejected on the basis of mere speculation or subjective evidence as to his ability to perform the job, even if "good faith" was under- lying the rejection. Simon V. St. Louis County (Appendix IV:88) gives excellent guidance to employers in complying with the section 504 employment requirements. The case involves a police officer seeking to be rehired after suffering a paralyzing injury. The protracted case lasted several years and produced four separate opinions which discuss the various functions of a police officer. Ultimately the Eighth Circuit Court of Appeals found no violation of the Rehabilitation Act as it determined that the employer's job require- ments, here forcible arrest and job transfer (ability to crossover and do different functions), which are imposed on active, commissioned officers were reasonable, legitimate and necessary for all officers. The results of the Simon ruling serve to reiterate the requirements that recipients of federal funds must follow in compliance with the employment provisions of section 504 regulations: 1. Are the job requirements reasonable, legitimate, and necessary for the position? 2. Are the requirements uniformly applied to all employees and applicants for employment? 3. Which functions of the position can the disabled person perform? 4. What accommodations, if any, are necessary to enable the handicapped person to perform the essential functions of the job? 5. Are the necessary accommodations "reasonable"? Channels should exist for requesting and reviewing accommodations An employer may wish to develop and implement a method of soliciting voluntary indications of handicapped status and requests for accommodations. Since employers are obligated under section 504 Federal Programs Advisory Service May 1986 Handicapped Requirements Handbook 640:9 Sample Reasonable Accommodations Policy This is a sample reasonable accommodations policy. Readers are advised to become familiar with existing federal and state or local law and regulations regarding the provision of reasonable accommo- dation. as well as the organization's current practice, if any, before adapting this policy to their specific organization. I. Statement of Purpose It is the policy of (name of organization) to provide reasonable accommodations for qualified hand- icapped individuals who are employees or applicants for employment. This organization will adhere to all applicable federal, state and local laws, regulations, and guidelines with respect to providing reason- able accommodations as required to afford equal employment opportunity to qualified handicapped indi- viduals. Reasonable accommodations shall be provided in a timely and cost-effective manner. II. Definitions Handicapped individual. Any person who has, or who has acquired a physical or mental impair- ment, has a record of such impairment, or who is regarded as having an impairment, which limits one or more major life activities, as such as self care, performing manual tasks, seeing, hearing, speaking, breathing, and working on a temporary or permanent basis. Physical or mental impairment. Any physiological disorder, disfigurement, or anatomical loss or limitation, or any mental or psychological disorder acquired as a result or illness, accident or birth. Qualified handicapped individual. A handicapped individual whose experience, education and/or training enable the person with reasonable accommodation to perform the essential functions of the job. Reasonable accommodation. The effort made to make adjustments for the impairment of an em- ployee or applicant by structuring the job or the work environment in a manner that will enable the handicapped individual to perform the essential functions of the job. Reasonable accommodation in- cludes, but is not limited to, modifying written examinations, making facilities accessible. adjusting work schedules, restructuring jobs, providing assistive devices or equipment, providing readers or inter- preters, and modifying work sites. Reasonable accommodations committee. Although not specifically called for in the regulations, es- tablishing a committee to review and monitor provision of reasonable accommodations to employees or applicants is an effective and equitable way of responding to the reasonable accommodation require- ment. The reasonable accommodation committee shall be composed of representatives from the institu- tion's personnel department, equal employment opportunity department, and management division. Medical advisory and facility management personnel could also participate in an advisory capacity. Federal Programs Advisory Service May 1986 Handicapped Requirements Handbook 640:10 III. Practices 1. Managers and supervisors shall prepare an analysis of jobs within their units which include de- fining the essential functional elements or tasks as well as the environment in which such activi- ties occur. Such documentation shall be developed with the assistance of the personnel director and shall be reviewed periodically. Documents prepared or utilized for this purpose may be used for other personnel actions. 2. In considering a handicapped individual for employment or for promotion or in any other per- sonnel action, the existence of their handicapping condition should not adversely affect a per- sonnel decision. Employment opportunities shall not be denied to anyone because of the need to make reasonable accommodation to the individual's handicap. 3. In considering a handicapped persons, it is appropriate to determine the ability of the person to perform the essential functions of the job with reasonable accommodation. A request for medi- cal verification of the disability of the person requesting the accommodation may be appropri- ate. 4. Immediate supervisors shall have the authority to make reasonable accommodations for appli- cants or employees which do not exceed ($ amount) or are totally within the work station or work site of the handicapped individual. 5. The committee shall meet periodically, at least quarterly, to review all reasonable accommoda- tion decisions made by immediate supervisors. It shall meet as needed to review other proposed or requested accommodations which cannot be handled by immediate supervisors. The commit- tee shall consult with the disabled individual and immediate supervisor involved where neces- sary. It shall act in a timely manner that will enable personnel actions to proceed in their regular course. 6. If the employee wishes to challenge a decision of the committee, he or she should have access to some existing employee grievance procedure. 7. An employee and his or her supervisor should periodically monitor the effectiveness of the ac- commodation. 8. Handicapped individuals shall be afforded the opportunity to provide reasonable accommoda- tions for themselves because it would impose undue hardship on the operation of the business. The handicapped individual shall not be afforded the opportunity to make accommodations which affect a temporary or permanent change to the facilities of the institution or which in- volve restructuring of the job in question without the written consent of the individuals and departments involved. IV. Implementation This policy shall be implemented as part of the personnel policy of the institution and shall be reviewed regularly as part of the administration of such practices. Federal Programs Advisory Service May 1986 Handicapped Requirements Handbook 640:7 (and 503, see 1740) to take steps to accommodate a worker's or applicant for employment's handicap, channels must exist for a handicapped person to bring his or her handicap to the attention of the em- ployer. If an individual does not ask to be accommodated, the employer should not force accommoda- tions on the individual. However, in the case of a handicapped employee whose job performance problems appear to be related to a handicap, an employer should consult with the employee at which time it would be appropriate for the employee to suggest a job accommodation to improve performance. Once an accommodation has been made for an employee, the employer and the worker should periodically monitor the effectiveness of the accommodation. If at some point the accommodation ceases to be effective in enabling the person to perform the job, if would be appropriate for either the em- ployer or the employee to suggest an alternative accommodation which would be more effective. It should be noted that an employer is required to provide the reasonable accommodation unless it pre- sents an undue hardship (see discussion above). Federal Programs Advisory Service May 1986 Handicapped Requirements Handbook houston personnel association news April 1990 Houston Personnel Association P.O. Box 35641 Houston, TX 77235 (713) 437-5153 Pat Pittman, Administrator Hours: 9 a.m. 3 p.m. EEO Commissioner Phone Reservations Evan Kemp, Jr. For April Luncheon To Speak Luncheon reservations may be made The HPA proudly welcomes Com- by calling 437-5153. The deadline for missioner Evan Kemp, Jr. to the April all reservations and cancellations is lunch meeting. He will speak on the 12:00 noon on Monday, April 9. THE "Americans With Disabilities Act of FULL AMOUNT ($20.00) OF UNCAN- 1989" currently in legislation. CELLED RESERVATIONS WILL BE BILLED TO THE MEMBER. Evan J. Kemp, Jr. came to the U.S. Equal Employment Opportunity Com- All activities will be held Wednesday, mission as one of the nation's leading April 11 at The Houstonian Hotel and advocates for physically and mentally Conference Centêr, 111 North Post Oak Lane. disabled people. He was nominated to EEOC by President Reagan on March PROGRAM EVAN KEMP, JR. 10, 1987, and unanimously confirmed 11:30-12:00 sophisticated lobbying efforts ever seen Social Hour by the Senate on June 19, 1987, for a against an executive branch action." In 12:00-1:30 Lunch and Speaker term expiring July 1, 1992. his efforts to educate national policy 2:00-4:00 INTEREST GROUP: Commissioner Kemp earned his bach- makers to the importance of integration elor of arts degree from Washington Legislative Update and self-determination for disabled and Lee University in 1959 and his law 2:00-4:00 MINI-SEMINAR: people, Commissioner Kemp has worked degree from the University of Virginia in Panel Discussion - to build coalitions with groups repre- 1964. Because he was near the top of "Americans With senting racial and ethnic minorities, his graduating class, he was interviewed Disabilities Act" women and older persons working by 39 of the top law firms in the country. toward similar goals. Limited valet parking will be available. With blunt candor, 39 firms told him that Recognizing that manufacturers of Self parking is available in the parking they would not hire him because he products for disabled people, including garage under the hotel. Cash or check was handicapped. He finally secured a wheelchair makers, often ignored the will be accepted by HPA only for the job with the Office of Chief Counsel, actual needs of disabled users, Com- per-person dinner charge of $15.00 for Internal Revenue Service. In 1967 he missioner Kemp spearheaded a group members or $20.00 for non-members. joined the Securities and Exchange of investors who purchased a small The Social Hour bar will be a cash bar; Commission and became an authority wheelchair company with sales of $19 HPA cannot accept payment for drinks, on equity funded insurance products. million. Seven years later the firm or cash checks for drink purchases. In 1980, Commissioner Kemp was became the largest wheelchair company selected to head the Ralph Nader in the United States with sales of $130 sponsored Disability Rights Center where MEMORIAL million. The Commissioner attributes he was a tireless spokesperson for the company's success to its involve- independent living by disabled people ment of wheelchair users in the design N and for an end to paternalism that too and marketing of their products. often keeps disabled people dependent. For the last seven years Commis- In 1982 he led the successful fight sioner Kemp has taught a course in "Disability and the Law" at Catholic implementing Section 504 of the Reha- 111 NORTH POST OAK LANE LOOP 610 against proposed changes to regulations bilitation Act of 1973. The respected University Law School in Washington, D.C. He has written numerous articles National Journal called the two year and spoken extensively about the campaign "one of the most effective and WOODWAY issues that concern disabled people. MINI-SEMINAR: ing SHRM, she spent three years as Deputy Under Secretary for the Employ- Distinguished Panel to ment Standards Administration, the Design Award Discuss Disabilities Act largest agency in the U.S. Department In conjunction with the pending of Labor. As head of the agency, Ms. name change, we will be accepting Following the luncheon, the EEOC is Meisinger was responsible for over 4000 ideas for the lettering and design sponsoring a workshop from 2-4 p.m. employees and the administration of to be used on all Association infor- designed to introduce our membership more than 90 Federal laws and regula- mation. A cash prize of $150 will to the opportunities that exist for hiring tory initiatives affecting workers' com- be awarded for the chosen design. persons with disabilities. Harriet Ehrlich, pensation, workplace standards and We invite entries from HPA District Director of the EEOC Office in equal employment opportunitity. She members and all others who may Houston, will moderate the panel which was named one of the Top Forty federal be interested. Those interested in includes Ralph Rouse, Office of Civil managers by Management Magazine participating should contact Mike Rights, Department of Health and Human for her work at the Department of Labor. Kahn at 531-1100. Services in Dallas; Virginia Roberts, Ms. Meisinger received her B.A. from Executive Director of the Governor's Mary Washington College and her law Committee for Disabled Persons in degree from the National Law Center of Austin; and Tony Randall, Chief Admin- George Washington University. She is 1990-91 HPA Officer istrative Judge at the EEOC Houston a member of the District of Columbia District Office, who will talk about his Bar Association and the American Bar Nominations experience with federal sector com- Association. She served as special legal The Nominating Committee has placed plaints of discrimination because of dis- counsel for the Associated Builders and the following members (listed alpha- abilities. Also Larry Johnson of South- Contractors in Washington, D.C. prior to betically) in nomination for the Associa- western Bell, San Antonio, a manager her Department of Labor appointment. tion's elected offices: and member of Southwestern Bell's Some of the topics for discussion President-Elect Advisory Committee on Employment of include: child care, increases in the MIKE KAHN Persons with Disabilities will speak. Lex federal unemployment insurance tax, Syntron, Inc. Frieden, Executive Director of the T.I.R.R. mandated health insurance, mandated BOB ROY Foundation and Assistant Professor, joint trusteeship of single employer Columbia Gas Development Corp. Department of Rehabilitation, Baylor pension plans, pension reversions, Treasurer College of Medicine, will introduce the whistleblower protections, and federal PAUL HOWELL subject with a short legislative history drug testing legislation. Methodist Retirement Services, Inc. and overview of the subject and plenty PAT KAPCIA of time will be available for questions Conference Talk HMSS, Inc. and answers. There will also be a short "Human Resources - A World of Secretary film "First Encounters" which treats the Opportunity" is the theme of this year's LORRIE BLOCK subject with sensitivity and humor. State of Texas SHRM Conference slated Coca-Cola Bottling Company The objective of this workshop is to for October 10-11 at the Infomart. RUTH SEILER give you an idea of the impact of the The revolutionary changes occurring Houston Lighting & Power Company Americans with Disabilities Act and to in Europe, the consolidation of the Parliamentarian demonstrate some constructive responses European Common Market in 1992, JUDY MURPHY to the new challenges facing us as and the aging of the baby boom gener- Enron Liquia Fuels human resources professionals. ation are among the events which will DIANE YOUNG INTEREST GROUP: have a dramatic impact on American Daniel Industries business in the '90s. For human re- As provided by our By-laws, the elec- SHRM Lobbyist To Speak sources professionals, new challenges tions are held this month. Ballots and and opportunities will emerge in an era candidate biographies will be mailed in We are bery pleased to welcome of intense competition, technological the near future to all members in good Susan R. Meisinger, SPHR, Vice Presi- change and continuing turbulence and standing. Members must retun their dent for Government Affairs with the uncertainty. completed ballots to the President within Society for Human Resource Manage- The goal of the Conference is to pro- ten days of the mailing date to be valid. ment to speak to us concerning some vide you with the tools and knowledge The Nominating Committee appre- of the major pieces of HR-related legis- to "gain the edge" as the twentieth cen- ciates the candidates' commitment and lation pending before the Congress. Ms. tury draws to a close. dedication to the Association's future as Meisinger directs the Society's govern- In the midst of imparting this wealth demonstrated by their willingness and mental affairs activities, keeps members of knowledge to you, however, there will interest to serve as officers. Please informed of legislative and regulatory be great fun. The Conference directors show your appreciation for their dedica- issues impacting them, and presents are cooking up some creative ideas to tion by voting your ballots this month! the Society's views to the Congress and carry out a theme with an international CARY WILKINS Executive Branch agencies. Before join- flavor. Stay tuned! ANN SULLIVAN Chair. Nominating Committee BOUAL MENT EQUAL EMPLOYMENT General information HOUSTON DISTRICT OFFICE 653-3320 1919 SMITH STREET 7TH FLOOR Executive Offices Company HOUSTON, TX 77002 653-3374 Legal 653-3401 March 12, 1990 Mr. Ralph D. Rouse, Jr. Division Director Office of Civil Rights Department of Health and Human Services 1200 Main Tower, Room 1360 Dallas, Texas 75202 Dear Mr. Rouse: I understand that you have spoken with Lex Frieden, and I am delighted that you have agreed to participate in our April 11 workshop at The Houstonian, sponsored by the Houston Personnel Association. Chairman Evan Kemp, the new Chairman of the Equal Employment Opportunity Commission, will be in town that day to address the Houston Personnel Association as its keynote luncheon speaker at 11:30 a.m. In conjunction with that luncheon, the EEOC is pulling together a workshop to be held at The Houstonian Hotel & Conference Center, 111 N. Post Oak Lane, between 2 p.m. and 4 p.m., designed to sensitize personnel and human resource professionals to the opportunities that exist for hiring persons with disabilities. Our panel will include Virginia Roberts of the Governor's Committee for Disabled Persons in Austin; Larry Johnson, a manager with Southwestern Bell in San Antonio and member of an advisory group dealing with the needs of disabled employees; and Tony Randall, Chief Administrative Judge at the EEOC Houston District Office, who will talk about his experience with federal sector complaints of discrimination because of disabilities. Lex will kick it off with an overview and history of the legislation in this field. We would like you to talk about your experience in enforcing the various statutes that prohibit discrimination against persons with disabilities and also discuss the issue of reasonable accommodation. Your remarks should not exceed 10 or 15 minutes. We want to leave plenty of time for questions and answers. The whole point of the workshop is to give working professionals in the human resources field some idea of what to expect with the passage of the new Americans With Disabilities Act. We want to let them know that businesses can constructively and positively respond to these new challenges and that reasonable Mr. Ralph D. Rouse, Jr. Page 2 accommodations are possible which allow them to take advantage of this vast new resource of talent. to I have made reservations for you for the luncheon, and a complimentary ticket will be waiting for you near the registration table with Pat Pittman, the Executive Director of the organization. Should you wish to bring someone with you, that person may make a reservation for the luncheon by calling 713/437-5153 and may pay at the door. I believe the luncheon is $15.00. HPA membership is 800, and I expect a sizeable turnout. Please call me at 713/653-3373 if I can assist you in any way. I look forward to meeting you then. In the meantime, please send me a bio or resume as soon as possible so I can properly introduce you. I'm trying to work out a press conference for Chairman Kemp prior to the 11:30 luncheon. You may be interested in attending that as well. Sincerely, Harriet Joan Ehrlich to District Director 10 P.S. I would really appreciate your faxing your bio to me as I have a March 15 deadline for the newsletter. My fax number is 713/653-3381. to CC: Evan J. Kemp, Chairman, EEOC +1 Robert Funk, Chief of Staff, EEOC Lex Frieden, Executive Director, TIRR Foundation of bluow SW Janisps tedd eldsmoason to 9ds oals 5118 doiw at 10 01 .nołdsbommobos апотраетр to 9v69 [ of tasw 9W patxitov evig of ai 903 to tałoq elodw 98T ddiw doeqxe of Jedw to 190100291 asmud adj ni 03 jasw driW wen ond to 9psaesq ylovijisoq bris tsdd work tol sepmelisdo were of