Cross-national comparison of policies and attitudes toward the disabled: the effects of deinstitutionalization

Policy changes influence public opinion and the lives of those impacted by new programs and requirements they create. Deinstitutionalization has been an important part of American disability policy and the subject of much debate and discussion. The Americans with Disabilities Act (ADA) stands as one of the most significant benchmarks in the evolution of the disability rights movement. This paper seeks to understand how policies like the ADA have influenced public attitudes locally and internationally. There has been a worldwide shift in the theory driving disability policy. The shift has gone from a medical model with a focus on cures, treatments and rehabilitation to a civil rights model with a focus on "disabling environments," discrimination and social stigma. Attitude surveys from the United States (US) and the European Union (EU) are used to establish the differences in attitudes across the nations of interest and a policy analysis follows seeking to understand how policies are effecting attitudes. The study also considers how the implementation of a civil rights model of disability policy affects public attitudes. There are significant differences in public opinion across the nations included in the study. Attitudes toward people with disabilities also vary by gender, age and contact with people with disabilities. The key difference between the US policy and the EU policy is the rate of change. The US policy changes were rapid and can be classified as reactionary while the EU policy changes were implemented in pieces with benchmarks and transition requirements.

A CROSS-NATIONAL COMPARISON OF POLICIES AND ATTITUDES TOWARD THE DISABLED: THE EFFECTS OF DEINSTITUTIONALIZATION by Elizabeth Susanne Dimond A thesis submitted to the faculty of The University of Utah in partial fulfillment of the requirements for the degree of Master of Science in Family Ecology Department of Family and Consumer Studies The University of Utah August 2009 III Copyright © Elizabeth Susanne Dimond 2009 All Rights Reserved THE U N I V E R S I T Y OF UTAH GRADUATE SCHOOL of a thesis submitted by Elizabeth Susanne Dimond This thesis has been read by each member of the following supervisory committee and by majority vote has been found to be satisfactory. UNIVERSITY SCHOOL SUPERVISORY COMMITTEE APPROVAL ~7 Michael Timberlake THE U N I V E R S I T Y OF UTAH GRADUATE SCHOOL APPROVAL To the Graduate Council of the University of Utah: I have read the thesis of Elizabeth Susanne Dimond in its final form and have found that (1) its format, citations, and bibliographic style are consistent and acceptable; (2) its illustrative materials including figures, tables, and charts are in place; and (3) the final manuscript is satisfactory to thejunend^pry committee and is ready for submission to The Graduate School. 7J,t Ig <r Date hair: Supervisory Committee Approved for the Major Department ChAMf ill CheryrWright Chair/Dean Approved for the Graduate Council David S. Chapman Dean of The Graduate School UNIVERSITY FINAL READING APPROVAL -------E-l-iz-a-b-e-th- -Su-s-a-n-ne- -D-im--on-d- ------- the s . ory 2/1(110 r Cheryl'right ~<.C~"t-- . Chapm n ABSTRACT Policy changes influence public opinion and the lives of those impacted by new programs and requirements they create. Deinstitutionalization has been an important part of American disability policy and the subject of much debate and discussion. The Americans with Disabilities Act (ADA) stands as one of the most significant benchmarks in the evolution of the disability rights movement. This paper seeks to understand how policies like the ADA have influenced public attitudes locally and internationally. There has been a worldwide shift in the theory driving disability policy. The shift has gone from a medical model with a focus on cures, treatments and rehabilitation to a civil rights model with a focus on "disabling environments," discrimination and social stigma. Attitude surveys from the United States (US) and the European Union (EU) are used to establish the differences in attitudes across the nations of interest and a policy analysis follows seeking to understand how policies are effecting attitudes. The study also considers how the implementation of a civil rights model of disability policy affects public attitudes. There are significant differences in public opinion across the nations included in the study. Attitudes toward people with disabilities also vary by gender, age and contact with people with disabilities. The key difference between the US policy and the EU policy is the rate of change. The US policy changes were rapid and can be classified as reactionary while the EU policy changes were implemented in pieces with benchmarks and transition requirements. ofthose Americans with Disabilities Act (ADA) stands as one of the most significant benchmarks in the evolution of the disability rights movement. This paper seeks to understand how policies like the ADA have influenced public attitudes locally and internationally. There a medical model with a focus on cures, treatments and rehabilitation to a civil rights model with a focus on "disabling environments," discrimination and social stigma. public attitudes. There are significant differences in public opinion across the nations included in the study. Attitudes toward people with disabilities also vary by gender, age and contact with people with disabilities. The key difference between the US policy and the EU policy is the rate of change. The US policy changes were rapid and can be classified as reactionary while the EU policy changes were implemented in pieces with benchmarks and transition requirements. TABLE OF CONTENTS ' ABSTRACT iv LIST OF TABLES vi Chapter 1. INTRODUCTION 1 American Disability Policy History 2 European Union Disability History 7 2. METHODS 11 The Datasets 12 Dependent Variables in Quantitative Analysis 14 Independent Variables in Quantitative Analysis 14 Hypotheses 18 Quantitative Analysis 19 Qualitative Analysis 26 4. CONCLUSION 37 Appendices A. RESPONSES BY NATION IN THE EU SURVEY 44 B. DEFINITION COMPARISON BY COUNTRY AND PROGRAM 46 REFERENCES 55 ................................................................................ ........ .. .............................................................. .... .................................................................... ............................................. European Union Disability History ............................................. 7 2. METHODS ........................ .... ............. . ....... ............ ............. 11 The Datasets ...................................................................... 12 Dependent Variables in Quantitative Analysis ... .. .......................... 14 Independent Variables in Quantitative Analysis .............................. 14 Hypotheses ........................................................................ 18 3. RESULTS .............................................................................. 19 ......................................... .... ................. Qualitative Analysis ............................................................. .26 4. CONCLUSION ..................................................................... 37 Appendices A. RESPONSES BY NATION IN THE EU SURVEy .......................... .44 B. DEFINITION COMPARISON BY COUNTRY AND PROGRAM ......... .46 REFERENCES ............... ................................................ .............. 55 LIST TABLES Table Page 1. Support for Inclusion in School 20 2. Support National Government Funding of Programs for People with Disabilities 21 3. Support Local Government Funding of Programs for People with Disabilities 22 4. Support for Inclusion in School: US and EU 24 5. Believe Disabled Workers Are Productive: US and EU. 25 6. Comfortable Around People with Disabilities: US and EU 26 7. Policy Comparison by Country 27 OF ... .. .. .......... . ... . ..... . .. ... ...... . ......... .20 .... . .. . ................. . ............ .. ... .... . ..... . .. . . . .. . ... .. . .. ...... ..... . ... ... .. ...... . .... ... . .. .. ..... . . .. ... . .............................. InClusion . .. . .. .. .... .. . ..... .. .. . ... .. . ...... EU ... ...... . . . . ... .. ..... .25 ........ . ...... ... .. Policy. . ... . .... . .. .. . ... ... . .. . .. . . .... .. .. .. .. .. .......... CHAPTER 1 INTRODUCTION This paper seeks to understand how the "civil rights" theory of disability policy has emerged and is manifested in American and European social policy and how this policy has influenced public opinion. The Americans with Disabilities Act (ADA) and key European Union (EU) documents will be analyzed and public opinion data will be used to explore the relationship between the policies and public attitudes. The heart of the discussion in this paper will focus on people with physical, mental or developmental disabilities. Mental illness is not discussed in detail, however, it is of great importance when considering deinstitutionalization and its impact. The policies regarding mental illness and services for people with mental illness are separate and quite different from those for people with disabilities. Public attitudes are also very different between these two groups. The stigma that is associated with mental illness is stronger and proving to be more long lasting than the stigma associated with physical and developmental disabilities in particular. A major frustration for those of us who work with people with disabilities and their families is this harsh division between mental illness and disability. Many individuals with physical, mental or developmental disabilities also have mental health issues but the services for the two do not over lap. Governmental agencies serving people with disabilities are not trained or qualified to ofthe proving to be more long lasting than the stigma associated with physical and developmental disabilities in particular. A major frustration for those of us who work with people with disabilities and their families is this harsh division between mental illness and disability. Many individuals with physical, mental or developmental disabilities also have mental health issues but the services for the two do not over lap. Governmental agencies serving people with disabilities are not trained or qualified to treat mental illness and governmental agencies that are responsible for providing mental health services often disqualify any applicant that has a disability and refer them to the local disability office. This is a problem that is currently being addressed here in Utah and in other states where parents and professionals are advocating for change. Attitudes towards the disabled have changed significantly in the United States and the world since the birth of the disability rights movement of the 1970s. The global community began to feel the influence of this movement with greater force in the 1980s and the United Nations (UN) responded with a declaration of rights for people with disabilities. In order to understand how Americans and Europeans feel about disability rights a brief review of their respective histories is in order. American Disability Policy History The Elizabethan poor houses of the 1600s were home to America's mentally ill, mentally retarded, elderly and poor. Conditions in these poor houses were deplorable. In general, poorhouses were inadequately funded. Moreover, they were often poorly administered, and those who ran them were often corrupt. They lumped together different classes of poor in the same institution: the old, the sick, and the mentally ill were housed with the able-bodied unemployed. Under such circumstances, poor houses were unable to provide adequate care for the needy or instill work habits in the able-bodied. In part, poorhouses were meant to be unpleasant institutions, as the threat of having to live in the poorhouse was intended to deter the poor from idleness. (Encyclopedia of American History, n.d., p.D The mentally ill and the mentally retarded moved from these poor houses to larger institutions in the late 1700s. This shift marked the beginning of a continuing debate. Should mental retardation and mental illness be considered a medical matter or an educational matter? Hospitals and schools opened and different "treatment" approaches were experimented with over the centuries. In the 1900s the theory of eugenics resurfaced 2 and in other states where parents and professionals are advocating for change. disabilities. In order to understand how Americans and Europeans feel about disability rights a brief review of their respective histories is in order. American Disability Policy History mentally were housed with the able-bodied unemployed. Under such circumstances, poor houses were unable to provide adequate care for the needy or instill work habits in the able-bodied. In part, poorhouses were meant to be unpleasant institutions, as the threat of having to live in the poorhouse was intended to deter the poor from idleness. (Encyclopedia of American History, n.d., p.l) The mentally ill and the mentally retarded moved from these poor houses to larger institutions in the late 1700s. This shift marked the beginning of a continuing debate. Should mental retardation and mental illness be considered a medical matter or an educational matter? Hospitals and schools opened and different "treatment" approaches were experimented with over the centuries. In the 1900s the theory of eugenics resurfaced 3 with dire consequences for people in institutions. Forced sterilization and isolation from the public were two results of the reemergence of this theory. Eugenics as a transnational ideology developed the following characteristics: 1- Interest in the possibility of "training" people with cognitive and physical differences as a core pursuit of scientific management techniques. 2- The rapid acceptance of confinement practices that sequestered massive numbers of disabled people and ethnic immigrants in institutions as available research populations. 3- The rise of hereditary theories of defect transmission that transformed disability from a familial or communal concern to a question of safe­guarding and improving "public health" and national purity (later known as a country's hereditary pool or genetic stock). 4- The invention of intelligence testing that expanded the category of defect from a primarily visible phenomenon manifested on or in the body to the measurement of an otherwise intangible, internal inferiority. 5- Restrictive public policies toward people with disabilities that limited or denied their participation in public institutions and privileges, such as marriage, reproduction, the labor market, the right to live in non-segregated communities, and immigration. (Snyder & Mitchell, 2006, pp.112-113) In the early 1900s the practice of eugenics was embraced and supported by the public in the US. During this period, a popular belief was that mental retardation and mental illness were completely genetic, and caused most, if not all, social ills such as poverty, drunkenness, prostitution, crime, and violence. The response to this belief was to segregate or sterilize people who were labeled mentally retarded or mentally ill so that they could not reproduce and destroy the gene pool. Pictures of people who committed arson, murder, or other acts of violence were often drawn in newspapers to suggest the presence of mental retardation. As late as 1920, the Public Health Service combined "criminals, defectives, and delinquents" into a single category. (Minnesota Governor's Council on Developmental Disabilities, n.d., p.l) By the middle of the century public opinion was changing and as a result laws and policy began to change as well. The rise of Hitler and the Nazi regime in Europe helped change the American sentiment concerning eugenics. The ugly scene in concentration camps, the extreme enforcement of eugenics and the costly war combined put enough social pressure on professionals and politicians that the name and theory of eugenics was dropped from policies and practices. This also sparked the beginnings of the parents' movement. differences as a core pursuit of scientific managemeht techniques. 2- The rapid acceptance of confinement practices that sequestered massive numbers of disabled people and ethnic immigrants in institutions as available research populations. 3- The rise of hereditary theories of defect transmission that transformed disability from a familial or communal concern to a question of safe­guarding and improving "public health" and national purity (later known as a country's hereditary pool or genetic stock). 4- The invention of intelligence testing that expanded the category of defect from a primarily visible phenomenon manifested on or in the body to the measurement of an otherwise intangible, internal inferiority. 5- Restrictive public policies toward people with disabilities that limited or denied their participation in public institutions and privileges, such as marriage, reproduction, the labor market, the right to live in non-segregated communities, and immigration. (Snyder & Mitchell, 2006, pp.112-113) ifnot newspapers to suggest the presence of mental retardation. As late as 1920, the Public Health Service combined "criminals, defectives, and delinquents" into a single category. (Minnesota Governor's Council on Developmental Disabilities, n.d., p.l) 4 "Goddard stated in 1928: 'The problem of the moron is a problem of education and training ... feeblemindedness is not incurable ... [and] the feebleminded do not generally need to be segregated in institutions.'" (Minnesota Governor's Council on Developmental Disabilities, n.d., p.l 1) During the 1940s and 50s several books and essays were written discussing the problems of institutionalization. One of the most influential writers at this time was Irving Goffman. His essays on the plight of inmates are still used to discuss the effects of institutions today. The loss of self that he termed "self-mortification" was vividly displayed in the scenes from Willowbrook, an institution for children and adults with disabilities in New York. The children and adults in institutions like Willowbrook experienced many of the elements of "trimming" or "programming" as Goffman called it. We very generally find staff employing what are called admission procedures, such as taking a life history, photographing, weighing, fingerprinting, adding numbers, searching, listing personal possessions for storage, undressing, bathing, disinfecting, haircutting, issuing institutional clothing, instructing as to rules, and assigning to quarters. Admission procedures might better be called "trimming" or "programming" because in thus being squared away the new arrival allows himself to be shaped and coded into an object that can be fed into the administrative machinery of the establishment, to be worked on smoothly by routine operations. (Goffman, 1961, p. 16) Geraldo Rivera's expose of Willowbrook brought people with disabilities to the center of attention in the media. Willowbrook was a State School on Staten Island, New York that was designed to house people with disabilities. Willowbrook was not unique in its conditions or care philosophy. Institutions like Willowbrook had been quietly closing their doors prior to the scandal but after the story broke there was a sharp increase in closures. The following is an excerpt from the television program that aired on ABC in 1972 called "Willowbrook: The Last Disgrace." institutions. '" ll) ami himself to be shaped and coded into an object that can be fed into the administrative machinery ofthe establishment, to be worked on smoothly by routine operations. (Goffman, 1961, p.l6) 5 Rivera: "There was one attendant for perhaps 50 severely and profoundly retarded children. Lying on the floor, naked and smeared with their own feces, they were making a pitiful sound, a kind of mournful wail that is impossible for me to forget. This is what it looked like, this is what it sounded like but how can I tell you about the way it smelled? It smelled of filth, it smelled of disease, and it smelled of death. We've just seen something that's probably the most horrible thing I've ever seen in my life. Is that typical of ward life?" Doctor: "Yes, there are 5300 patients at Willowbrook, which is the largest institution for the mentally retarded in the world. The ones that we saw were the most severely and profoundly retarded. There are thousands there like that, not going to school, sitting on the ward all day, not being talked to by anyone, only one or two or three people to take care of 70 people on the ward." (Minnesota Governor's Council on Developmental Disabilities, n.d., p.27) Public outcry over the treatment of people with disabilities combined with the momentum shift that was drawing disability policy into the "civil rights" arena and created the perfect atmosphere for comprehensive change. Willowbrook was the final straw for many parents who during the era of eugenics were encouraged, in some cases coerced, to put their children in institutions and let the medical professionals deal with them so the family could live a "normal" life. These parents were told it was the best for everyone and that their children would be taken care of better than they could care for them because nothing could be done to help them. "Most families were not afforded the opportunity to be involved in planning or placement decisions regarding their child, and resources were not available to enable children with significant disabilities to live at home and receive an education at neighborhood schools in their community" (National Research Center on Learning Disabilities, 2005, p.3). When these parents saw what was really going on in these institutions the outrage was considerable. The Architectural Barriers Act was passed in 1968. This required federally constructed buildings and facilities be accessible to people with physical disabilities. This act marks the beginning of federal disability rights legislation. The 1970s brought that's.6 significant change in American disability policy. The "civil rights" model became the driving force behind legislation. The Social Security Amendments of 1972 included the creation of the Supplemental Security Income (SSI) program which gave financial assistance to families caring for adult children with disabilities who did not qualify for Social Security Disability Insurance. The first act to confront discrimination of people with disabilities was the Rehabilitation Act of 1975. Handicap parking stickers were first introduced in 1975 as well. The Federal-Aid Highway Act of 1975 provided federal money for curb cuts. The Education for All Handicapped Children Act was passed in 1975 establishing the right of children with disabilities to receive a public school education in an integrated environment. This act has been used for decades as a reference point in disability rights legislation and was renamed the Individuals with Disabilities Education Act (IDEA) in 1990. The Employment Opportunities for Disabled Americans Act was passed in 1986, which allowed recipients of SSI and SSDI to retain benefits after they obtain work. People with disabilities were added to the groups protected by the fair housing act and assistive technology access was addressed in legislation in 1988. Percy (1989) discussed the refinement of disability policy in the US and the difficulty that has been encountered in implementing federal policies. In the roughly twenty-year period since the passage of disability rights laws by the federal government, the most prominent activity has been the refinement of guidelines, criteria, and obligations for implementation. Many of the laws raised more questions about implementation practices than they answered; they were heavily symbolic and thus imprecise as to strategies and objectives for policy execution. (Percy, 1989, p.65) The next major event in American disability history was the creation and implementation of the Americans with Disabilities Act (ADA) of 1990 which "mandates that local, state, and federal governments and programs be accessible, that businesses qualifY ofthe 7 with more than 15 employees make 'reasonable accommodations' for disabled workers, that public accommodations such as restaurants and stores make 'reasonable modifications' to ensure access for disabled members of the public. The act also mandates access in public transportation, communication, and other areas of public life" (San Francisco State University, 1997, p.l). European Union Disability History Several countries in the EU were greatly affected by Hitler and his extreme enforcement of eugenics theory. His attempts to cleanse the human race and create a perfect Arian race resulted in the murder of thousands of people with disabilities along with the millions of others targeted by Hitler and his supporters. Tens of thousands of people with disabilities were murdered during the Holocaust, killed in the so-called "euthanasia" program, authorized by Hitler in the fall of 1939. The purpose of the program (otherwise known as Aktion T4 for the location of the headquarters at Tiergartenstrasse 4 in Charlottenberg) was to eliminate people considered "defective" by Nazi ideals - the institutionalized elderly, the incurably ill, and people with various physical or mental disabilities. Unlike other victims of the Holocaust - the Jews, Roma and Sinti, Gays, Lesbians, and Jehovahs Witnesses - the disabled were not killed in the death camps. Instead, they were systematically murdered in the institutions and state hospitals where they lived or were staying temporarily for health reasons. (Young, 2000, p.l) During the holocaust over 100,000 disabled people were exterminated under the Nazi's policy of Eugenics and Euthanasia - the doctors and nurses trained to kill the disabled later worked in Auschwitz and other death camps. Hundreds of thousands more disabled people were 'legally' sterilised - the Nazi's taking on a eugenic philosophy which the Americans and British had led the way in since the turn of the 20th century. Most people still do not know of the Nazi Holocaust of the 'useless eaters' or those 'unworthy of life'. Few disabled people are even aware of their role in the development of the Holocaust. The disabled victims of the Holocaust are rarely mentioned in discussions of the Holocaust. Why? For many disabled people the prejudice continues: over five million of us have been aborted since the 1960s due to a fear that we might be different or a burden on the state. Countless others of us are trapped in ghettos, socially excluded, as a result of institutionalization, poverty and hopelessness. We are still feared and despised, objects of charity. In Britain thousands of disabled people are still trapped in communicaticm, 1). elderly, the incurably ill, and people with various physical or mental disabilities. Unlike other victims of the Holocaust - the Jews, Roma and Sinti, Gays, Lesbians, and Jehovahs Witnesses - the disabled were not killed in the death camps. Instead, they were systematically murdered in the institutions and state hospitals where they lived or were staying temporarily for health reasons. (Young, 2000, p.l) ofthe oflife'. Countless others of us are trapped in ghettos, socially excluded, as a result of 8 Charity institutions to this day; unable to have even the faintest of ordinary lives let alone fulfill their potential. (Darke, 2002, p.l) Institutions were not known in the EU as safe places for parents to put their children with disabilities after this horrific instance of mass murder. Many reforms took place in the nations that were controlled by Hitler following the end of World War II, and important changes were made in international policies as well. The United Nations made changes to their disability policies in the late 1960s and 1970s that sparked changes in how the world discussed disability. "Prior to 1970, the United Nations largely dealt with disability issues from a social welfare and medical model perspective" (Department of Economic and Social Affairs: Division for Social Policy and Development: The United Nations, 2003, p.l). During thel970s the social welfare and medical model were slowly replaced by a civil rights model as people with disabilities were recognized as a minority in need of support and capable of benefiting from employment and other programs designed to allow them to live more independent and self-determined lives. The year 1981 was designated the "International Year of Disabled Persons" by the UN and became the "International Decade of Disabled Persons" in 1983. In 1982 the UN announced "The World Programme of Action Concerning Disabled Persons." This program had two main goals: the "full participation of disabled persons in society" and "equality." Three objectives were agreed upon to help reach these goals: promotion of effective prevention measures, rehabilitation, and "equalization of opportunities" (Department of Economic and Social Affairs: Division for Social Policy and Development: The United Nations, 2003, p.9). The change from a medical model to a "civil rights model" was a long and complex evolution for the EU. The process started with a Community Social Action Programme for people with disabilities that was 1) . 1). the1970s 9 established in the EU in 1974. People with disabilities were also included in the European Social Fund during this time. The year 1975 brought rehabilitation centres into existence with a focus on vocational training for people with disabilities. Vocational training and housing projects were the main focus of policy at this time. In March of 1981 the European Parliament adopted a new resolution to increase the integration of people with disabilities economically, socially and vocationally. A series of documents and resolutions followed that further identified the problems facing people with disabilities and clarifying the EU's approach to policy. The first action program took effect in 1982 and had a 4-year timeline. The program was extended to 1987 because significant work did not begin until 1983. This program was designed to promote integration in employment and to increase independent living. Vocational rehabilitation and access to housing were still the main thrust of the policy. Provision for the education of people with disabilities was not included in this first plan but became a key element in subsequent plans. Handicapped people in the European Community Living Independently in an Open Society (HELIOS I) was the 1988 plan and while it continued to focus on vocational rehabilitation and housing it expanded its scope to include more economic, social and daily living issues for people with disabilities. Education emerged as a theme and integration of children with disabilities into regular schools was promoted. Evaluations and progress reports from the member states were gathered continuously and meetings convened to discuss important issues and needed reforms. Participation at all levels, local, national, nongovernmental organizations, churches, and the EU, was encouraged. HELIOS II was introduced in 1993 and was given a 3-year timeline. This with a focus on vocational training for people with disabilities. Vocational training and housing projects were the main focus of policy at this time. In March of 1981 the European Parliament adopted a new resolution to increase the integration of people with disabilities economically, socially and vocationally. A series of documents and resolutions followed that further identified the problems facing people with disabilities and clarifying the EU's approach to policy. The first action program took effect in 1982 and had a 4-year timeline. The program was extended to 1987 because significant work did not begin until 1983. This program was designed to promote integration in employment and to increase independent living. Vocational rehabilitation and access to housing were still the main thrust of the policy. Provision for the education of people with disabilities was not included in this first plan but became a key element in subsequent plans. HELlOS and integration of children with disabilities into regular schools was promoted. Evaluations and progress reports from the member states were gathered continuously and meetings convened to discuss important issues and needed reforms. Participation at all levels, local, national, nongovernmental organizations, churches, and the EU, was encouraged. HELlOS II was introduced in 1993 and was given a 3-year timeline. This plan intensified the efforts and coordination of the member states and implemented the changes recommended by the continuing evaluation and reporting that went on during the HELIOS I era. Equal opportunities in employment emerged as an important theme and language began to turn to a "civil rights model." The UN's policy changes led to the creation and implementation of "Standard Rules on the Equalization of Opportunities for Persons with Disabilities" in 1993. The "Standard Rules on the Equalization of Opportunities for Persons with Disabilities" identified several target areas for equal participation: "accessibility, education, employment, income maintenance and social security, family life and personal integrity, culture, religion, and recreation and sports (Department of Economic and Social Affairs: Division for Social Policy and Development: The United Nations, 1993, p.l)." This was the tool used by the European Union (EU) to create their Disability Strategy. The following quote comes from the European Commission's website. The main principles of disability policy emerging from the Standard Rules might be summarised as a general shift in approach from disability as a medical issue to one of disability as a human rights issue, the replacement of an ethos of compensation for precieved abnormalities by one of the removal by society of barriers to inclusion of all its members and by a new emphasis on the need to mainstream actions, that is, including a disability dimension in policy recommendations covering a wide spectrum of social and economic concerns. Although non-compulsory, the Standard Rules offer a strong moral and political impetus to take specific action at all levels of government. (Ministry of Employment and Social Affairs, n.d., p.3) 10 HELlOS recommendations covering a wide spectrum of social and economic concerns. Although non-compulsory, the Standard Rules offer a strong moral and political impetus to take specific action at all levels of government. (Ministry of Employment and Social Affairs, n.d., p.3) CHAPTER 2 METHODS This study is designed to be an introduction or a starting place for international disability policy comparisons. There is a need for research to move in this direction but it is a very complicated arena of research and this study seeks to outline where we stand with attitudes and policies. There will be many areas left open for future researchers to explore. The major reason why disability has been largely ignored in the recent writings on social policy is undoubtedly that most writers have seen disability as a non-problematic category for analytical purposes. That is to say, they have accepted the general view of disability as a personal tragedy. From this it logically follows that the reasons why disabled people cannot or do not participate fully in society stem directly from the physical or psychological limitations of the disabled person as a consequence of this traumatic event, whether it be an accident or the onset of some progressive disease. However, more and more disabled people have been pointing out that full participation has not been prevented by personal limitations but by the social restrictions imposed upon them by society leading them to the view that (UPIAS, 1976:4): '.. .disability is therefore a particular form of social oppression'. (Barton, 2006, p.8) This study offers an organized look at the current situation and trends which should make the process of further research a bit easier. Many variables should be controlled for in this study but are not because of the complex nature of the international comparison. One example is the variable of race. It would be valuable to know how different races feel about disability issues but race cannot be defined as simply Black, White, etc. when dealing with so many countries. The European survey should include gypsies, refugees non­problematic stem directly from the physical or psychological limitations of the disabled person as a consequence of this traumatic event, whether it be an accident or the onset of some progressive disease. However, more and more disabled people have been pointing out that full participation has not been prevented by personal limitations but by the social restrictions imposed upon them by society leading them to the view that (UPIAS, 1976:4): ' ... disability is therefore a particular form of social oppression'. (Barton, 2006, p.8) 12 1 See Appendix A for break down of respondents by country. and other racial populations that vary by country within the EU and are important to the individual nations. Other variables that should be included in future research and would be included in this work if they were available are employment status, marital status and social benefit receipt. The Datasets Public opinion data will be used to identify significant differences between nations. The data were collected by the European Union (EU) and by the National Organization on Disability (NOD). The EU Eurobarometer 54.2 survey used a multistage national probability sample of 16,082 people from the 15 countries1 in the EU. The sample included people age 15 years old and older and the data were collected through phone interviews conducted in the language of the respondents. The NOD survey used a representative sample of 1,257 Americans and was also done via phone interviews. The sampling procedure for the NOD survey was based on the US Census Bureau's adult population figures and was stratified by geographical region and residential proximity to a city. Respondent selection was prioritized as follows: 1- youngest adult male at home, 2- next youngest male at home, 3- youngest female at home, 4- next youngest female at home. Several limitations introduced by the data should be discussed. The first is a social desirability effect. The US and EU survey data were collected via phone interviews; therefore, it is possible that the respondents felt some pressure to answer in a socially appropriate way. Sampling limitations also exist. Individuals without telephones were countries! ofthe therefore, it is possible that the respondents felt some pressure to answer in a socially appropriate way. Sampling limitations also exist. Individuals without telephones were I 13 excluded from the sample. This could exclude those in very rural areas where phone lines have not been established and those who cannot afford to have a telephone. Another limitation arose in combining the two surveys. The questions asked on the two surveys do not exactly match and therefore connections between main ideas and principles can be made but a direct item for item comparison cannot be made. The comparisons are valid and useful for beginning this important discussion. The last limitation is one commonly encountered in disability studies: defining disability. Both of the surveys used in this study have broad definitions of disability. The definition used in the NOD survey was: "People who are deaf or with very limited hearing; who have walking problems and always use canes, crutches, or a wheelchair, or people without an arm or a leg; or are blind or have a serious problem seeing; or have serious speech problems. We also include people with mental illness or mental retardation or with a serious learning disability." The EU used the following definition to begin their survey: "Anyone who has any long-lasting illness, disability or infirmity that limits their activities in any way." The EU survey then asks respondents how familiar they are with several different disabilities, including "visual disabilities, hearing impairments, neuromuscular impairments, skeletal impairments, cerebral palsy, spinal cord injury, head injury, stroke, loss of limbs, multiple sclerosis, muscular dystrophy, arthritis, asthma, cancer, diabetes, epilepsy, brain injury, Alzheimer's disease, Parkinson's disease, mental retardation, and psychiatric disabilities." The US survey asks about specific types of disability in a question regarding comfort around people with different kinds of disabilities. They include: "people who are blind, people who are deaf, people who are in a wheelchair, people who are mentally retarded, people who are principles can be made but a direct item for item comparison cannot be made. The comparisons are valid and useful for beginning this important discussion. ofthe Parkinson's disease, mental retardation, and psychiatric disabilities." The US survey asks about specific types of disability in a question regarding comfort around people with different kinds of disabilities. They include: "people who are blind, people who are deaf, people who are in a wheelchair, people who are mentally retarded, people who are 14 mentally ill, people who are facially disfigured, people who are senile." Respondents were asked to consider a wide range of disabilities and situations. It is likely that the respondents' definitions of "disabled" varied greatly and changed throughout the survey. One variable where this definition problem became important was the question about productivity of workers with a disability. Defining "disabled" in this question could have greatly impacted the respondent's answers. The type of disability and the type of work/environment is important in this question and others like it. The inclusion in school question requires a similar clarification. Dependent Variables in Quantitative Analysis The dependent variables in the regressions will be support for inclusion in school, comfortable with people with disabilities, support for national funding, support for local funding, and perceived productivity of workers with disabilities. Contact with people with disabilities will be used as a dependent variable in the chi squared tests to establish variance across countries. Several other dependent variables are important for understanding the effectiveness of disability policy. The two datasets used in this study were written independently of one another and therefore the variables available are limited to those appearing in both surveys. Future studies may want to include dependent variables that focus on attitudes toward accessibility, health care, or other items specific to the policies being analyzed. Independent Variables in Quantitative Analysis The independent variables will include age, gender, nation of citizenship, and contact with people with disabilities. As mentioned previously, other important limited to those appearing in both surveys. Future studies may want to include dependent variables that focus on attitudes toward accessibility, health care, or other items specific to the policies being analyzed. 15 independent variables and control variables are not included in the study because of limitations caused by the complexity of the comparison and differences in the survey instruments used by the US and EU. Yukor (1988) sets forth several theories about how attitudes are developed. He focuses on how negative attitudes are developed and mentions a few variables that should be included in any study of attitudes concerning people with disabilities. He mentions gender, age, socioeconomic status, contact with people with disabilities and educational level. He cites several previous studies that have shown gender, age and contact with people with disabilities to affect attitudes toward people with disabilities. These studies show that women and young adults have more favorable attitudes toward people with disabilities. "The amount of previous contact with the disabled individual has also been suggested as affecting attitude; the more one has interacted with members of a disabled population on an equal basis and in a positive manner, the more positive one's attitudes tend to become" (Yukor, 1988, p.28). This study will be done in two parts: a quantitative analysis of the survey data from the two countries and a qualitative analysis of the disability policies in the different countries. The quantitative analysis will compare attitudes of people in the US with those in the EU. The qualitative analysis will compare key policies in order to identify effective policy elements and to determine if a "civil rights model" is being used in the policies. Questions using a Likert-like scale were coded as 0 or 1 in the quantitative analysis because the numbering of the scales in the two different surveys did not match. Strongly agree and somewhat agree were grouped together and somewhat disagree and agree were grouped together on the EU survey. The NOD survey question "Do you personally know any disabled people?" was combined with the EU survey question "Do you personally ED. attitudes are developed. He focuses on how negative attitudes are developed and mentions a few variables that should be included in any study of attitudes concerning people with disabilities. He mentions gender, age, socioeconomic status, contact with people with disabilities and educational level. He cites several previous studies that have shown gender, age and contact with people with disabilities to affect attitudes toward people with disabilities. These studies show that women and young adults have more favorable attitudes toward people with disabilities. "The amount of previous contact with the disabled individual has also been suggested as affecting attitude; the more one has interacted with members of a disabled population on an equal basis and in a positive manner, the more positive one's attitudes tend to become" (Y ukor, 1988, p.28). Questions using a Likert-like scale were coded as 0 or 1 in the quantitative analysis because the numbering of the scales in the two different surveys did not match. Strongly agree and somewhat agree were grouped together and somewhat disagree and agree were grouped together on the EU survey. The NOD survey question "Do you personally know any disabled people?" was combined with the EU survey question "Do you personally 16 know anyone who has any long-lasting illness, disability or infirmity that limits their activities in any way?" to create the "contact" variable used in the regression. The EU question responses were divided into categories by how the respondent knew the person with a disability. Therefore, if respondents had contact in any one of the categories they were coded as having contact but if they did not have contact with any of the categories they were coded as having no contact. The "comfortable" variable was created by combing the NOD survey question "Do you feel your relationship with this disabled person is generally pleasant and easy, or is it strained and uncomfortable due to his or her disability?" and the EU survey question "In general, do you feel completely at ease, somewhat at ease, somewhat uneasy or very uneasy in the presence of people with disabilities?" The EU responses were grouped into two by combining "completely at ease" and "somewhat at ease" in one group and "somewhat uneasy" and "very uneasy" in another. The NOD responses were specific to a certain relationship with a person with a disability; therefore, only those with contact with a person with a disability answered this question. A chi squared test will be used to determine if the differences across the countries in response to inclusion in school, contact with people with disabilities, comfortable with people with disabilities, support for national funding, and support for local funding are significant. Sixteen dummy variables will be created and used in the chi squared test to represent the individual nations. A series of multivariate logistic regressions will be done to determine other factors that could explain the some of the differences in public attitudes. infinnity with a disability. Therefore, if respondents had contact in arty one of the categories they were coded as having contact but if they did not have contact with any of the categories they were coded as having no contact. The "comfortable" variable was created by combing the NOD survey question "Do you feel your relationship with this disabled person is generally pleasant and easy, or is it strained and uncomfortable due to his or her disability?" and the EU survey question "In general, do you feel completely at ease, somewhat at ease, somewhat uneasy or very uneasy in the presence of people with disabilities?" The EU responses were grouped into two by combining "completely at ease" and "somewhat at ease" in one group and "somewhat uneasy" and "very uneasy" in another. The NOD responses were specific to a certain relationship with a person with a disability; therefore, only those with contact with a person with a disability answered this question. detennine represent the individual nations. A series of multivariate logistic regressions will be done to detennine other factors that could explain the some of the differences in public attitudes. 17 Several key documents from the EU and US will be analyzed for similarities and differences. The United Nations and the European Union have archives of policy documents and political speeches regarding disability rights that are available through the UN website, the EU website, and the ICPSR. The US ha*s pdlicy documents available through the federal government websites, the White House website, and several departmental websites. The ADA, the 2007 SSA Red Book, the 2004 New Freedom Initiative progress report, and the Administration on Developmental Disabilities 2003- 2004 report to Congress, the President and the National Council on Disability will be used to represent the US policies. The Equal Opportunities for People with Disabilities: A European Action Plan, UN Standard Rules on Equalization of Opportunities for Persons with Disabilities, and the individual nation action plans submitted to the EU Commission will be used to represent the EU policies. The areas of accommodation identified will be compared across the countries and the programs supporting individuals with disabilities identified. The language used in each country's policy will be analyzed to determine if the country is using the "civil rights" approach to their policy and if "people first language" is being used. The definition that will be used to define a "civil rights model" is: ".. .people with disabilities are characterized as a discrete oppressed minority group whose 'disadvantaged position in American [or European] society is based primarily on unfair discrimination.'... When discussing the disability rights movement, the emphasis tends to be on the recognition of rights of people with disabilities that are fundamental in nature, and if deprived, would violate fundamental notions of fairness." (Batavia and Schriner, 2001, p.691) Key words that will indicate a "civil rights model" are: inclusion, self-determination, and reduce or remove barriers. Antidiscrimination and rights UN website, the EU website, and the ICPSR. The US hets policy documents available through the federal government websites, the White House website, and several departmental websites. The ADA, the 2007 SSA Red Book, the 2004 New Freedom Initiative progress report, and the Administration on Developmental Disabilities 2003- 2004 report to Congress, the President and the National Council on Disability will be used to represent the US policies. The Equal Opportunities for People with Disabilities: A European Action Plan, UN Standard Rules on Equalization of Opportunities for Persons with Disabilities, and the individual nation action plans submitted to the EU Commission will be used to represent the ED policies. The areas of accommodation identified will be compared across the countries and the programs supporting individuals with disabilities identified. The language used in each country's policy will be analyzed to determine if the country is using the "civil rights" approach to their policy and if "people first language" is being used. The definition that will be used to define a "civil rights model" is: " ... people with disabilities are characterized as a discrete oppressed minority group whose 'disadvantaged position in American [or European] society is based primarily on unfair discrimination. ' ... When discussing the disability rights movement, the emphasis tends to be on the recognition of rights of people with disabilities that are fundamental in nature, and if deprived, would violate fundamental notions of fairness." (Batavia and Schriner, 2001, p.691) Key words that will indicate a "civil rights model" are: inclusion, self-determination, and reduce or remove barriers. Antidiscrimination and rights 18 protection language will also indicate the use of a "civil rights model." "People first language" is defined as putting the person before the disability (i.e., a person with a disability rather than a disabled person or a person who uses a wheelchair versus an invalid). The following quote from the Utah Developmental* Disabilities Council explains the importance of this simple movement. "People First Language recognizes that individuals with disabilities are first and foremost people. It emphasizes each person's value, individuality, dignity and capabilities."(Utah Developmental Disabilities Council, n.d., p.2) The use of "people first language" indicates that the policy is focused on people and their rights not on medical diagnoses or limitations. Hypotheses It is expected that the US and the EU policies will cover the same areas of accommodation. It is also expected that the EU policy and the US policy will be consistent with the "civil rights model" of disability. It is expected that disability will be defined differently by the EU and US. It is expected that public opinion about inclusion of people with disabilities, contact with people with disabilities, comfort around people with disabilities, and support for government funding of programs for people with disabilities will vary by nation. It is expected that increased contact with people with disabilities will increase the comfort level and support for inclusion and government funding. Developmehtal' It It disabilities will vary by nation. It is expected that increased contact with people with disabilities will increase the comfort level and support for inclusion and government funding. CHAPTER 3 RESULTS Quantitative Analysis There are significant differences by nation in public opinion regarding the inclusion of students with disabilities in schools and support of government funding for programs designed to assist people with disabilities. Tables 1-3 show the results of the chi squared tests. The countries with the greatest support (80% or higher) for inclusion in schools are Spain, Luxembourg, and Denmark. The countries with the lowest support (below 75%) for inclusion are Belgium, Greece, Portugal, and France. Most countries were between 75% and 79% support. There were no countries where the majority of people were unsupportive of inclusion in schools. Every country believes that government should provide support to people with disabilities; however, there is disagreement among the EU member states about which branch of government should be responsible for that support. This disagreement could exist among Americans as well but they were not asked about who should be responsible for funding (federal government vs. state government). France, Italy, Greece, and the UK all believe that the national government should be responsible for providing support for people with disabilities. Most countries are split more equally between national and local government responsibility. A more effective question for the EU would be "Does the un supportive for funding (federal government vs. state government). France, Italy, Greece, and the UK all believe that the national government should be responsible for providing support for people with disabilities. Most countries are split more equally between national and local government responsibility. A more effective question for the EU would be "Does the 20 Table 1: Support for Inclusion in School Country % Support Inclusion in Schools Austria 79% • Belgium 63% ' Denmark 81% Finland 78% France 74% Germany 79% Greece 67% Ireland 76% Italy 79% Luxembourg 85% Netherlands 76% Portugal 72% Spain 88% Sweden 75% UK 77% US 75% Pearson chi2(15) = 261.4347 p<0.001 public support government funding at any level?" and then follow up with the questions about which branch should have more responsibility. Ninety-one percent of Americans support federal government spending on programs for people with disabilities. Figure 1 shows the comparison by nation of the percent of the population with a disability, the percent of respondents who have contact with a person with a disability and the percent of respondents who are comfortable with a person with a disability. The population of people with disabilities was not given in the surveys. Figure 1 data were collected from the US census website and a population survey done by the EU. Both the EU and the US data reflect the 2002 population. This is another example of when the definition of disability becomes an issue. % . chil(= O.OOI data were EU and the US data reflect the 2002 population. This is another example of when the definition of disability becomes an issue. 21 Table 2: Support National Government Funding of Programs for People with Disabilities Country % Support the Nation Spending Money on People with Disabilities Austria 56% Belgium 66% Denmark 68% Finland 59% France 62% Germany 46% Greece 77% Ireland 64% Italy 72% Luxembourg 60% Netherlands 62% Portugal 60% Spain 60% Sweden 56% UK 70% US 91% 15) = 0.001 The US census and the EU population survey used different definitions of disability and therefore a direct comparison is less useful than it otherwise could be. The definitions used by each country in their individual policies along with the definitions used by the US and EU for their general policies and by the authors of the surveys used in this study can be found in Appendix B. In many cases the percent of the population that has a disability explains, at least in part, the percentage of respondents who reported having contact with a person with a disability. The US reports that about 18% of its population has a disability but only 50% of respondents in the US report having contact with a person with a disability. . Nation - oh Pearson chi2(l5) - 709.5327 p<O.OOI of respondents in the US report having contact with a person with a disability. 22 Table 3: Support Local Government Funding of Programs for People with Disabilities Country % Support the Local Government Spending Money on People with Disabilities Austria 61% Belgium 50% Denmark 76% Finland 62% France 42% Germany 50% Greece 36% Ireland 40% Italy 49% Luxembourg 62% Netherlands 41% Portugal 68% Spain 53% Sweden 55% UK 38% US N/A chi2(14) = pO.OOl This is one of the lowest rates of contact reported. It is unclear whether this is because the definition of disabled in the US study did not include people with long-term illnesses like the EU study definition. It is likely that the number of people who know someone with a disability if a long-term illness was included in the definition would have been greater. The multivariate logistic regression including all independent variables shows that there are significant differences in public support of inclusion in school. It also shows that there are significant differences in the support of government spending and productivity of disabled workers. All results are reported as odds ratios with gender % tbe Belgimn Pearson chi'(\4) = 726.4614 p<O.OOI productivity of disabled workers. All results are reported as odds ratios with gender • % of population reporting that they have a long-standing health problem or disability • % Have Contact with a Person with a Disability • % Comfortable with People with Disabilities Figure 1: Comparison by Country of Population of People with Disabilities, Contact with People with Disabilities and Comfort with People with Disablities 100.00% 90.00% 80.00% 70.00% 60.00% 50.00% 40.00% 30.00% 20.00% 10.00% 0.00% Country 0% 24 Table 4: Support for Inclusion in Sc hiool: and Model 1 Model 2 Model 3 Model 4 Gender 1.016 (.040) 1.013 (.041) Contact with Disabled 1.047 (.043) 1.040 (.043) Youth .735*** (.048) 747*** (.050) Elderly .870* (.047) .895* (.043) Log-Likelihood -7622.108 -7348.0206 -7609.7807 -7337.8565 *** p<0.001 **p<0.01 *p<0.05 Results presented in odds ratios. Standard errors in parentheses. (Gender coded "male=l" Contact coded "any contact= l") coded "male=l," contact coded "contact with a person with a disability^!," elderly coded "age 65+= 1," and youth coded "age 15-20=1." Adults aged 21-64 are the reference group. Including more age groups in the regressions could be meaningful; however, a general idea of how attitudes vary with age is all this study seeks to establish. Tables 4-6 show the results of the logistic regressions. Age was a significant predictor of support of inclusion in school. Youth are 25% more likely to be opposed to inclusion in schools while respondents 65+ are 10% more likely to be opposed to inclusion in schools. Youth are 25% less likely to be comfortable around people with disabilities and the elderly are 20% less likely to be comfortable around people with disabilities. This could explain a large part of why they are not as supportive of inclusion. Contact with people with disabilities does not increase the likelihood of a respondent supporting inclusion in school. This is a surprising result. It was expected that if people had contact with people with disabilities they would be more comfortable with having them in the same school as the general population. There may be other factors that could explain this result. Knowing someone with certain types of I," disability=I," ageI5-Including more age groups in the regressions could be meaningful; however, a general idea of how attitudes vary with age is all this study seeks to "establish. Tables 4-6 show the results of the logistic regressions. around people with disabilities. This could explain a large part of why they are not as likelihood of a respondent supporting inclusion in school. This is a surprising result. It was expected that if people had contact with people with disabilities they would be more T a hie 4 S rt ~ I I . . S h I US d EU . . uppo or nc uSlon III c 00: an Modell ------ ------ ------ ------ ------ ------ .747*** (.050) ------ ------ O.OOI O.OI O.05 Standard errors parentheses. ma1e= I" I") 25 Table 5: Believe Disabled Workers Are Productive: US and El U Model 1 Model 2 Model 3 Model 4 Gender 1.322*** (.048) 1.313*** (.048) Contact with Disabled 1.25*** (.047) 1.242*** (.047) Youth •954 (.060) .977 (.063) Elderly .626*** (.031) .611*** (.031) Log-Likelihood -8602.4679 -8299.2403 -8587.3791 -8224.7919 *** pO.OOl **p<0.01 *p<0.05 Results presented in odds ratios. Standard errors in parentheses. (Gender coded "male=l" Contact coded "any contact=l") disabilities or knowing people with disabilities who are of a similar age to the respondent may affect support for inclusion in schools more. Variables were not available to test this hypothesis in the current study. Youth and children are greatly affected by an inclusive school policy so their attitudes concerning it are important. Policy-makers should work to increase the awareness and understanding in this age group. Increased contact with peers with disabilities could help change this attitude. Having contact with a person with a disability increases one's comfort level around people with disabilities by 88%. This is a significant support for inclusive policies even if they are a bit uncomfortable for people at first. Men are 31% more likely than women to believe that people with disabilities are productive workers. This was an unexpected result. Most studies have shown that women have more favorable attitudes toward people with disabilities. Future research may explore the gender difference by category and type of disability to better understand why there are such differences. Having contact with a person with a disability increases the likelihood of a person believing that workers with disabilities are productive workers by EU Modell ------ ------ ------ ------ ------ ------ .95~ . ------ ------ p<O.OOI O.OI O.05 31 % explore the gender difference by category and type of disability to better understand why there are such differences. Having contact with a person with a disability increases the likelihood of a person believing that workers with disabilities are productive workers by Table 6: Comfortable Around People with Disabilities: US anc IEU Model 1 Model 2 Model 3 Model 4 Gender 1.100* (.049) 1.087 (.050) Contact with Disabled (.087) 1.876*** (.0866) Youth .678*** (.049) 734*** (.055) Elderly .805*** (.048) .800*** (.049) Log-Likelihood -6416.6616 -6108.6207 -6401.1436 -6094.1654 pO.OOl **p<0.01 *p<0.05 Results presented in odds ratios. Standard errors in parentheses. (Gender coded "male= l" Contact coded "any contact=l") 24%. It would be useful in this analysis to have access to the type of disabilities that respondents were considering. This is a case where a universal definition of disability and then specific questions regarding type of disability would be beneficial. Qualitative Analysis Table 7 summarizes the findings from the policy analysis. "People first language" is shown as a ratio of positive/negative use of "people first language." This ratio shows both the emphasis placed on disability issues in the policies and the frequency of using "people first language." The "civil rights model" is reported as a simple yes or no and was determined by the use of the following words: inclusion, self-determination, reduction or removal of barriers, antidiscrimination language and rights protection language. The absence of an area of emphasis in the table does not signify an absence of that particular element in the Action Plan but rather indicates that the area was not directly linked to people with disabilities. Portugal, Belgium and Luxembourg are excluded from this portion of the study because their Action Plans are not available in 26 T a ble 6 : C omI i0 rta ble A roun dPe opJIe WI· thD·I sa bIT life s: and EU Modell ------ ------ ------ 1.90*** ------ ------ ------ .734*** (.055) ------ ------ *** p<O.OOI O.Ol O.05 I" contaet=directly linked to people with disabilities. Portugal, Belgium and Luxembourg are excluded from this portion of the study because their Action Plans are not available in Table 7: Policy Comparison by Country Denmark Finland France Germany Greece Ireland Italy Netherlands Spain Sweden UK raising X X X X X X X X X X X X X X X X X Communication/Teleco X X X X X X X X X X X X X X X X X X X anti­discrimination X X X X X X X X X X X X X X X X X X X X X X X X X X X Where X X X X X Language 16/2 171/0 221/4 67/7 1/22 21/45 14/19 38/2 12/65 4/1 24/10 11/35 4/19 Model . Yes Yes Yes N/S Yes No Yes Yes N/S N/= specified 27 SSA New UN EU ADA Red Freedom ADD Initiative Report Standard Action Austria Book Report Rules Plan Awareness-raising X X X X Medical Care X X X X X X Rehabilitation X X X X X Accessibility - Removing Barriers (Includes Transportation, Access to Public Buildings, CommunicationlTeleco mmunications, etc.) X X X X X X X X Education X X X X Employment - anti-discrimination X X X X X Employment - reasonable accommodation X X X X X ; Income Maintenance . and Social Security X X X X X Family Life and Personal Integrity, Culture, Recreation, Religion X X Home Ownership X X I Right to Choose Where to Live X X X X X X Participation by People with Disabilities and their Families X X X X X X People First Language 165/5 1612 17110 265/1 22114 117/16 6717 12/59 1122 0/20 21145 14119 3812 11135 Civil Rights Model Yes N/A Yes N/A Yes Yes N/S N/S N/S NI A Not Applicable N/S = Not specified . People First Language variable is the number of times that people with disabilities are mentioned in the respective policy and is shown as a ratio of people first language over disability first language. English. Further research should obtain professional translation services and include specific countries of interest and perform an in depth look at all of the disability policies in those countries. Several countries' policies are quoted in the following paragraphs that demonstrate the "civil rights model" approach that they are taking. The common themes that emerge in these quotes are: self-determination, individualized supports, early intervention for children with disabilities, and an emphasis on independence. Family and individual counseling, self-employment for people with disabilities, and transition programs for students who are leaving school are other components found in several of the policies. Most of the policies considered access to employment to be key for reducing poverty levels among all vulnerable groups. Both the US and the EU offer salary subsidies to employers who employ workers with disabilities. Both the EU and US have incentives to increase the amount and quality of research done in the area of disability studies in order to better understand the population makeup and needs. Sweden does have a "civil rights model" in its disability policy as demonstrated by the focus on antidiscrimination legislation and the national objectives outlined. Equality across age and gender are important elements of this nation's antidiscrimination policy for people with disabilities. Three antidiscrimination acts entered into force in 1999: the Measures against Ethnic Discrimination at Work Act, the Prohibition of Discrimination at Work of Disabled Persons Act and the Prohibition of Discrimination at Work because of Sexual Orientation Act. (The Ministry of Health and Social Affairs: Sweden, 2003, p.19) A handicap was still something looked upon with a sense of shame, deeply rooted in the Christian and bourgeois system of morals. Both people with mental and physical handicaps were hidden away from the eyes of the world. As recently as the forties and fifties investigations conducted in forested and sparsely populated 28 programs for students who are leaving school are other components found in several of the policies. Most of the policies considered access to employment to be key for reducing poverty levels among all vulnerable groups. Both the US and the EU offer salary incentives to increase the amount and quality of research done in the area of disability areas brought news of mentally retarded children who were kept hidden at home. Changes in attitudes towards the disabled are not yet complete. Handicap issues are still something of a special field alongside the ordinary community. Much will still have to be done before the new view of handicap is accepted by one and all. (Beckman, 1976, pp.7-8) Spain has a "civil rights model" as well. Their foCus on antidiscrimination, equal opportunities and accessibility legislation displays this clearly. Another important element of Spain's policy is the involvement of people with disabilities and their families. This is a key to the creation and implementation of effective policy. The national objectives of disability policy are a social community based on diversity, a society that is organized in such a way that disabled persons of all ages participate fully in social life and equal conditions for disabled girls and boys, men and women. A national action plan for disability policy, From Patient to Citizen, was adopted in 2000. (The Ministry of Health and Social Affairs: Sweden, 2003, p.34) To approve the Law on Equal Opportunities and Non-Discrimination of Persons with Disabilities: To establish criteria on equal opportunities, universal accessibility, measures against discrimination and conditions for real, effective participation by the organisations that represent people with disabilities and their families. (Ministerio De Trabajo Y Asuntos Sociales: Spain, 2003, p. 12) Italy places particular emphasis on supporting families caring for people with disabilities. The cultural expectations in Italy are that families will care for their family members with disabilities at home. There must be a support system in place for families to successfully care for children, adolescents and adults with disabilities at home. The policy currently in place supports families who have chosen home care for their loved ones and encourages expanding independence and community involvement. In keeping with the commitments made by the government at the opening conference of the European Year of Disabled People and the Second National Disability Conference, Italy aims to implement a series of initiatives over the next three years. Said initiatives are aimed at developing an integrated policy for disabled people by making up for the gaps in current legislation and providing additional instruments to reconcile professional commitments and the burdensome task of looking after and assisting families with disabled people. Said initiatives 29 fo~us 30 must also aim at improving disabled and especially disabled young people's personal independence and integration into the country's professional and productive life. The government intends to increase the services on offer, improve access by removing architectural and cultural barriers and define integrated service organisational models for the care and treatment of various types of dependency in order to improve the quality of life of disabled people. (The Ministry of Social Affairs: Italy, 2003, p.30) * * Ireland has a comprehensive antidiscrimination law and is making a concerted effort to eliminate discrimination on the basis of disability. Ireland has a comprehensive framework of equality legislation. The Employment Equality Act 1998 outlaws discrimination in relation to employment on nine grounds - gender, marital status, family status, sexual orientation, religion, age, disability, race and membership of the Traveller community. The Equal Status Act 2000 prohibits discrimination outside the employment context, including education, provision of goods, services and accommodation and disposal of property on the same nine grounds. The Equality Authority and the Office of the Director of Equality Investigations (ODEI) were established to ensure the effective implementation of this legislation. The Equality Authority, an independent statutory body, has a mandate to combat discrimination and to promote equality in relation to the areas covered by the Employment Equality Act 1998 and the Equal Status Act 2000. The ODEI provides the main locus for redress of first instance. (The Ministry of Social Affairs: Ireland, 2003, pp.41-42) Greece is one among several nations to revise the constitution to protect the rights of people with disabilities. Emphasis is placed on integration and full participation in political and social life. The Revision of the Constitution, 2001: Article 21 § 6 provides that 'Disabled individuals have the right to enjoy the benefit of measures which will ensure their independence, occupational integration and participation in the social, economic and political life of the country'. It reserves for the disabled their own special constitutional right, urging legislators to take all necessary measures to protect the disabled and facilitate their enjoyment of the fullest possible life. (Ministry of Labour and Social Security: Greece, 2003, p. 12) France appears to be a few years behind most of its neighbors in the creation and implementation of antidiscrimination legislation and support programs; however, its proposed approach is in harmony with a "civil rights" approach and covers many important areas of independent and integrated living. education, provision of goods, services and accommodation and disposal of property on the same nine grounds. The Equality Authority and the Office of the Director of Equality Investigations (ODE!) were established to ensure the effective implementation of this legislation. The Equality Authority, an independent statutory body, has a mandate to combat discrimination and to promote equality in relation to the areas covered by the Employment Equality Act 1998 and the Equal Status Act 2000. The ODE I provides the main locus for redress of first instance. (The Ministry of Social Affairs: Ireland, 2003, pp.41-42) 31 A law relating to equal opportunity for the handicapped was drafted in early 2003, crossing a new, decisive step. The reform should in particular give substance to the right to compensation for the handicapped, instate a personalized assistance system to meet their needs, and make social and professional integration a real priority. The national advisory council for the handicapped (CNCPH) - consell national consultative des personnes handicapees) along with all concerned ministries have taken up the issue. The general principle underlying this reform must be the right to a discrimination-free life so as to better fulfill the desire of the handicapped for more autonomy, full participation in community life, increased freedom of lifestyle choices, and greater recognition of the special nature of their situations. (Le Conseiller Pour Les Affaires Sociales: France, 2003, p.34) Austria is following a similar timeline and will be implementing legislation created in 2003 that is based on a "civil rights model." In order that people with disabilities receive the status that they deserve as members of society with equal rights, a resolution passed in July 2003 by Parliament plans the drafting of a law on equality for the disabled. This law should help to prevent or eradicate discrimination against people with disabilities. Representatives of organisations of the disabled and the social partners are involved in this work. (The Ministry of Social Security, Generations and Consumer Protection: Austria, 2003, p.41) Both the US and the EU have specific protections for the rights of people with disabilities to participate fully in the economy and society. Education is another element important in the US and EU. Discrimination against individuals with disabilities persists in such critical areas as employment, housing, public accommodations, education, transportation, communication, recreation, institutionalization, health services, voting, and access to public services; unlike individuals who have experienced discrimination on the basis of race, color, sex, national origin, religion, or age, individuals who have experienced discrimination on the basis of disability have often had no legal recourse to redress such discrimination; the Nation's proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals. (Administration on Developmental Disabilities, 1990, p.4) The purpose of the Rules is to ensure that girls, boys, women and men with disabilities, as members of their societies, may exercise the same rights and obligations as others. In all societies of the world there are still obstacles preventing persons with disabilities from exercising their rights and freedoms and making it difficult for them to participate fully in the activities of their societies. It Consumer Protection: Austria, 2003, pAl) basis of race, color, sex, national origin, religion, or age, individuals who have experienced discrimination on the basis of disability have often had no legal recourse to redress such discrimination; the Nation's proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals. (Administration on Developmental Disabilities, 1990, pA) 32 is the responsibility of States to take appropriate action to remove such obstacles. Persons with disabilities and their organizations should play an active role as partners in this process. The equalization of opportunities for persons with disabilities is an essential contribution in the general and worldwide effort to mobilize human resources. Special attention may need to be directed towards groups such as women, children, the elderly, the poor, migrant workers, persons with dual or multiple disabilities, indigenous people and ethnic minorities. In addition, there are a large number of refugees with disabilities who have special needs requiring attention. (Department of Economic and Social Affairs: Division for Social Policy and Development: The United Nations, 1993, p.4) The EU's long-standing commitment towards its disabled citizens goes hand in hand with a new approach to disability: from seeing people with disabilities as the passive recipients of compensation, society has come to recognise their legitimate demands for equal rights and to realise that participation relates directly to insertion. Contributing to shaping society in a fully inclusive way is therefore the overall EU objective: in this respect, the fight against discrimination and the promotion of the participation of people with disabilities into economy and society play a fundamental role. Recognising and protecting the rights of people with disabilities is at the core of EU actions. (The European Commission, 2003, p.4) Germany is one of the countries that does not have a clear "civil rights model" approach explicitly stated but has many elements that correspond to a "civil rights model," including self-determination, individualized supports, and antidiscrimination legislation. The Council of the European Union has declared 2003 to be the "European Year of People with Disabilities", which will pursue the following goals: awareness-raising for the rights of disabled people, promoting equality of opportunities for them in Europe, positive portrayal of people with disabilities, awareness-raising for the heterogeneity and diversity of disabilities and awareness-raising of discrimination against disabled people. Particular attention is paid to the equal treatment of children and young people with disabilities in education. In addition to these EU goals for the European Year of People with Disabilities 2003, Germany is pursuing its own national goals that characterise the paradigm change in German policy towards the disabled. They are about realising the participation of disabled people, enabling their self-determination and bringing about their equality. Furthermore, the Federal Government will continue to give active support for the elaboration of a UN Convention on the Rights of Disabled People. It is aiming for a wide-ranging European antidiscrimination directive to protect people with disabilities. (The Ministry of Social Affairs: Germany, 2003, p.35) ED's insertion. Contributing to shaping society in a fully inclusive way is therefore the overall EU objective: in this respect, the fight against discrimination and the promotion of the participation of people with disabilities into economy and society playa fundamental role. Recognising and protecting the rights of people with disabilities is at the core ofEU actions. (The European Commission, 2003, p.4) awareness­raising 33 Personal budgets are characterised by the fact that the individual needs of a disabled person are identified and a budget to his/her personal use under his/her own responsibility is made available to him/her. The disabled person can thus decide for himseliTherself what aids are best for him/her, and which service and which people provide what he/she needs at the time he/she wishes. Forms for the shared teaching of children with and without disabilities are developing at various places of learning. Preventive measures are becoming increasingly important. (The Ministry of Social Affairs: Germany, 2003, p.34) The Netherlands is an interesting exception to the "civil rights model" of disability policy found throughout the EU. Van Houten and Bellemakers (2002) point out: There is no antidiscrimination legislation in the Netherlands for disabled people and, although a General Equal Opportunities Act exists, it is restricted to ethnicity, sexuality, religion and age, and does not include disability. Despite political debate for some years to incorporate disability into the Act, no results have been achieved to date. In addition to this, disability is not particularly high on the political agenda, except in relation to labour participation [Reintegration into Employment Act (REA)], and Dutch universities have thus far failed to develop disability studies as part of their syllabus. In many respects, disability has been seen as a private, rather than a socio-political problem, (p.2) People with disabilities are mentioned specifically in health care but no where else in the policies reviewed in the action plan submitted to the EU. The lack of a "civil rights model" does not mean that the public will have negative views of people with disabilities nor that the public will not support government funding of programs for people with disabilities. The Netherlands was about average on all of the key indicators analyzed in this study. The EU policy includes special consideration for women with disabilities and the US policy includes special consideration for Latinos with disabilities. More and more attention is being placed on the gender factor in the social promotion of women with disabilities, which has taken form in studies like the one on 'Social Exclusion Indicators in women with disabilities' and specific forms of actions, such as the consolidation of social promotion networks for women with disabilities. (Ministerio De Trabajo Y Asuntos Sociales: Spain, 2003, p.9) himselflherself ethnicity, sexuality, religion and age, and does not include disability. Despite political debate for some years to incorporate disability into the Act, no results have been achieved to date. In addition to this, disability is not particularly high on the political agenda, except in relation to labour participation [Reintegration into Employment Act (REA)], and Dutch universities have thus far failed to develop disability studies as part of their syllabus. In many respects, disability has been seen as a private, rather than a socio-political problem. (p.2) disabilities. The Netherlands was about average on all of the key indicators analyzed in this study. 34 Women account for 52.6% of the handicapped. Although more males are born with handicaps and men have more accidents, after age fifty women more often experience physical deficiencies and sensory deprivation. (Le Conseiller Pour Les Affaires Sociales: France, 2003, p.34) Equip for Equality, the P&A in Illinois, has created the 'Latino Outreach and Advocacy Project' as a means to teach self-advocacy skills to an underserved population. The project has significantly improved the service delivery system for Latinos with developmental disabilities. The community is receiving better access to legal advocacy services and training, which are being delivered in a more culturally sensitive manner. The P&A's work, especially on educational services, has been particularly critical in the wake of the closing of the National Center for Latinos with Disabilities. The P&A staff has also been assisting Latino parent groups to establish themselves as viable non-profit organizations, thereby improving the capacity of the Latino community to independently advocate for themselves and their families. (Administration on Developmental Disabilities, Administration for Children and Families, U.S. Department of Health and Human Services, 2004, p.40) In New Jersey, the Elizabeth M. Boggs Center on Developmental Disabilities, the Protection and Advocacy Agency, and the Council on Developmental Disabilities, together with other partners, collaborated to create a conference, 'The Latino Community and Disabilities; Confronting the Barriers.' The conference, held on September 17-18, 2004, focused on building awareness and strategies for disability service providers to serve Latino communities and helping community and faith-based organizations to identify and support the needs of children and adults in their communities. (Administration on Developmental Disabilities, Administration for Children and Families, U.S. Department of Health and Human Services, 2004, p.53) Involvement of people with disabilities and their families is of great importance in all of the policies. Austria is a good example of the type of programs available to people with disabilities and their families. Austria's plan for participation is particularly effective because it includes planning for transition from school to work, individualized services and input from both the person receiving the services and their support team (parents, teachers, etc.). From 2001, the additional funding from the Government's employment campaign for people with disabilities has facilitated a further extension of the measures for integrating young people with special needs into employment. With "Clearing", a ofthe 1llinois, Latinos with developmental disabilities. The community is receiving better access to legal advocacy services and training, which are being delivered in a more culturally sensitive manner. The P&A's work, especially on educational services, has been particularly critical in the wake of the closing of the National Center for Latinos with Disabilities. The P&A staff has also been assisting Latino parent groups to establish themselves as viable non-profit organizations, thereby improving the capacity of the Latino community to independently advocate for themselves and their families. (Administration on Developmental Disabilities, Administration for Children and Families, U.S. Department of Health and Human Services, 2004, p.40) Community and Disabilities; Confronting the Barriers.' The conference, held on September 17 -18, 2004, focused on building awareness and strategies for disability service providers to serve Latino communities and helping community and faith-based organizations to identity and support the needs of children and adults in their communities. (Administration on Developmental Disabilities, Administration for Children and Families, U.S. Department of Health and Human Services, 2004, p.53) 35 new service was developed which acts directly at the interface between school and employment. Clearing facilities have the task in the final or penultimate school year of determining together with those affected the best-suited individual package of measures for integration into employment. This service includes in particular; 1-Drawing up a profile containing interests and suitabilities, 2- Carrying out a strengths/weaknesses analysis, 3-Establishing or outlining any possible needs regarding extra training, 4-Revealing employment perspectives on the basis of the interests and suitability profile, and building on that, 5-The drawing up of a career/development plan. The idea is not to take existing problems away from young people and their parents, but that they should be offered the support necessary to solve issues which arise as independently as possible, according to the principle of "helping people to help themselves. (The Ministry of Social Security, Generations and Consumer Protection: Austria, 2003, p.57) Continued research regarding the needs and wants of people with disabilities and their families, employers, teachers, co-workers, etc. is mentioned in almost all of the policies analyzed. Gaining a better understanding of the types of social and physical barriers that exist is at the heart of why this research in being conducted. The EU policies included provisions for reporting, evaluation and revision of policy that the US did not have. Included in the policies were timelines and benchmarks. Continuous evaluation measures allowed policy-makers to report on successes, identify and fix weaknesses, gather public and participant feedback and tailor programs to the specific needs of their populations. The strongest common theme across all nations is the shift in the theory driving policy-making. Heyer (2002) suggests that the shift was from the medical model with a focus on cures, treatments and rehabilitation to the civil rights model with a focus on "disabling environments," discrimination and social stigma. The action plan submitted by Greece touches on this important shift. Formerly the definition of individuals with special needs was based on a biological or medical model describing disability in terms of anatomical and physical criteria. Emphasis might instead be laid on the social inclusion and I-3.-Establishing ofthe ofthe populations. 36 involvement of the individual both in the workplace and the broader social context. In the contemporary definition of a person with disabilities an attempt is being made to combine the two models, attaching greater weight to social factors. (Ministry of Labour and Social Security: Greece, 2003, p. 17) The US made this shift first and is a pioneer in disability rights policy. While there were serious mistakes made, the US has been the leader in this important civil rights movement for decades and has established beneficial programs and laws that have been used as reference points for many other nations. CHAPTER 4 CONCLUSION This paper presents the historical and cultural trajectories of disability policy in the US and the EU and the consequences of the policy paths taken. It also provides a starting place for further research by organizing available data and pointing out areas that need exploration and change. The parallel paths taken by the US and the EU resulted in very different outcomes because of the difference in timing, preparation, historical and cultural differences and policy approach. The US history demonstrates its reactionary policy approach while the EU history demonstrates a more calculated and holistic policy approach. The US policies have been amended countless times and challenged in court since their birth. Despite this rocky road the US has traveled, the attitudes of the general public have stayed supportive and positive towards people with disabilities. The attitude shift in the EU has been more gradual and varies in relation to comfort level with people with disabilities and support for inclusion in school. This is not necessarily a reflection of poor policy but rather a result of gradual change. I suspect that if a similar survey were to be conducted in 10 years that the attitudes in the EU would all be significantly more supportive of inclusion and that the public will be more comfortable with their interactions with people with disabilities. The National Organization On Disability (1991) said the following about their survey, which was used in this study to represent the US public opinion: "The study with disabilities and support for inclusion in school. This is not necessarily a reflection of poor policy but rather a result of gradual change. I suspect that if a similar survey were to be conducted in 10 years that the attitudes in the EU would all be significantly more supportive of inclusion and that the public will be more comfortable with their interactions with people with disabilities. survey, which was used in this study to represent the US public opinion: "The study 38 aimed to provide policymakers, leaders of the disability movement, media, business people, and government officials with a better understanding of what the public knows about people with disabilities, how it feels about them and the way they are treated, and what should be done to help open up more opportunities* for fuller participation in all aspects of life." (p.l) The survey would be more effective for policymakers if it was more specific about the type of disability and the situations the disabilities are encountered by the respondents. Tackling the definition problem in disability studies is not going to be easy because of the many different uses of the data. "... A single legal definition of disability for the purposes of defining eligibility for benefits and services is neither necessary nor desirable. A one-size-fits-all definition would be ill-suited to the diverse needs of persons with impairments of work disabilities" (Mashaw, J. L., & Reno, V. P., 1996, p.75). Varying definitions of disability are not bad if the variance is necessary to create a tailored program or support. The needs of the families and individuals utilizing the programs and policies discussed in this analysis deserve to have tailored services that meet their specific needs and abilities. The definitions of disability used to determine eligibility for certain programs vary from country to country based on the type program they are used to define. Using eligibility definitions in questions on future surveys will be extremely helpful when discussing classroom inclusion, work programs or welfare benefits because it will clearly define the population that the respondents should be considering when giving their answers. The EU disability policy is following the US disability policy with about a 3-5 year lag in the general policy and a 5-10 year lag in the individual nations' policies. The EU is improving on US policies and adapting them to the needs of its member states. The what should be done to help open up more opportunities-forfuller participation in all aspects of life." (p.l) The survey would be more effective for policymakers if it was more specific about the type of disability and the situations the disabilities are encountered by the respondents. Tackling the definition problem in disability studies is not going to be easy because of the many different uses of the data. " ... A single legal definition of disability for the purposes of defining eligibility for benefits and services is neither necessary nor desirable. A one-size-fits-all definition would be ill-suited to the diverse needs of persons with impairments of work disabilities" (Mashaw, J. L., & Reno, V. P., 1996, p. 75). Varying definitions of disability are not bad if the variance is necessary to create a tailored program or support. The needs of the families and individuals utilizing the programs and policies discussed in this analysis deserve to have tailored services that meet their specific needs and abilities. The definitions of disability used to determine eligibility for certain programs vary from country to country based on the type program they are used to define. Using eligibility definitions in questions on future surveys will be extremely helpful when discussing classroom inclusion, work programs or welfare benefits because it will clearly define the population that the respondents should be considering when giving their answers. EU is improving on US policies and adapting them to the needs of its member states. The 39 US can learn from the differences and innovations introduced in the disability policy arena by the EU. Preparation for major change in policy is vital to the success of policy. The "civil rights model" of disability policy is the best approach to disability policy but requires a coordinated and comprehensive effort to make* it successful. The US population almost universally supports helping people with disabilities, but if schools, families, alternative community placements, medical facilities and professionals are not prepared to meet the demands imposed by new legislation the tone will change to resentment and frustration. Talbott (2004) argues that a lack of planning and preparation caused, in part, the many problems that the rapid deinstitutionalization of Americans with disabilities and mental illness unintentionally created. When lay people or psychiatric professionals refer to the mess or disaster created by deinstitutionalization, they are usually referring to several events. Most striking was the dramatic appearance of large numbers of obviously mentally ill people on city streets, people who were dirty, who wore torn or inappropriate clothing, who hallucinated and talked to themselves or shouted to others, and who in general acted in a strange or bizarre way. In many places, huge ghettos of discharged patients were created in areas of low-cost housing, proprietary homes, or deteriorating neighborhoods. Thousands more patients were transferred to nursing homes. (Talbott, 2004, p.3) Alternative facilities were not in existence to handle the mass exodus from the institutions. The first parents' movements began in the late 1940s and had gained significant strength by the 1980s. After the Great Depression and the end of World War II Americans experienced a stabilization of their family economics and life, attention was shifted from daily survival to other important family concerns. Woodhull Hay, of the National Association for Retarded Children, cited seven reasons why parents united to form groups: 1- Evidence that institutions were limited in what they could do for children, 2- Increased awareness that regular public school programs were unsuited for such children, 3- The need to ED. mak~ discharged patients were created in areas of low-cost housing, proprietary homes, or deteriorating neighborhoods. Thousands more patients were transferred to nursing homes. (Talbott, 2004, p.3) 40 disseminate knowledge and information concerning mental retardation, 4- The need to challenge the validity of the finality in the words, "Nothing can be done for your child," 5- The desire of parents to learn what more could be done for these children and to pursue projects on their behalf, 6- The need to strengthen the growing conviction that the responsibility is social, i.e., money should be provided for building a fuller life for the mentally handicapped, and 7- The realization that it was not enough spiritually just to care for one's own child. (Minnesota Governor's Council on Developmental Disabilities, 2006, p.l) Families were, however, ill prepared to care for their now adult or teenaged children at home. Society was not ready to receive these students in school, work or the community in general. This lack of preparation was at the heart of the problems caused by America's rapid deinstitutionalization. The implications of Goffman's work with institutionalized people manifests itself here. As families brought a child, adolescent or adult with a disability home from an institution like Willowbrook, the person with disabilities had a difficult time adjusting to the social stimuli and expectations of individuality and autonomy that are so important in American society. This inexperience with social expectations and stimuli on the part of the person with a disability added to the lack of contact of parents, teachers, employers and the general public with people with disabilities, created a very difficult setting for successful integration and support for people with disabilities. The experience of David and Susan Seerman illustrates the emotional battle that goes on in the minds and lives of families with children with disabilities. The Seermans have a daughter, Cassie, who has severe mental retardation and cerebral palsy. For many years they cared for Cassie at home but felt overwhelmed by the unique needs and hurdles that caregiving added to daily life. The Seermans loved Cassie and wanted the best care possible for her. They wanted to keep her at home but did not have the resources to make that a reality. With five other children to care for they could not give infonnation ofthe Seennan Seennans years they cared for Cassie at home but felt overwhelmed by the unique needs and hurdles that caregiving added to daily life. The Seennans loved Cassie and wanted the best care possible for her. They wanted to keep her at home but did not have the resources to make that a reality. With five other children to care for they could not give 41 Cassie the attention and support that she needed. They chose to place Cassie in a residential school that is about 150 miles from their home. Dave Seerman describes the struggle he goes through daily with this decision: .. .Only Susan and I wrestle with the nature of Cassie's disability and with our decision to put Cassie in school. One day we feel O.K. about it, then we'll get a call saying Cassie has a stomach ailment and the only option is antibiotics or a Tylenol. We very rarely administered medicine to Cassie, primarily because she rarely was sick while living at home. Unfortunately, it seems to me that Cassie is frequently sick nowadays. We miss Cassie and I suspect one day in the future, we just might bring her more or closer to us, permanently. Whether we build a special apartment for her above our garage or hire someone to help with the constant care needs is of no consequence as of this moment. Our decision to place her was both right and wrong and demonstrates how perplexing and delicate choices like these are to make and accept. (Meyer, 1995, pp.88-89) Parents today struggle with feelings of guilt and failure if they are not able to care for their child at home and have to place them in a dreaded institution. Supporting families who would like to care for their children at home is an important area of disability policy that is not well developed in America. The UK and several other European countries have programs in place to support families who choose to have their children with disabilities live at home. The expenses, physically and emotionally, are huge for these families but they can provide quality care if they are supported and given the tools they need to balance the care needs of their child with the other demands of home, work, recreation and family. The EU has taken a slower approach to policy development and implementation; thereby they have been able to avoid many of the disasters that the US policy has had to clean up and are still working on cleaning up. Talbott recommends several policy elements countries can implement to avoid the problems that the US has faced, including removing barriers to full participation in health and mental health delivery systems, ... call saying Cassie has a stomach ailment and the only option is antibiotics or a Tylenol. We very rarely administered medicine to Cassie, primarily because she rarely was sick while living at home. Unfortunately, it seems to me that Cassie is frequently sick nowadays. We miss Cassie and I suspect one day in the future, we just might bring her more or closer to us, permanently. Whether we build a special apartment for her above our garage or hire someone to help with the constant care needs is of no consequence as of this moment. Our decision to place her was both right and wrong and demonstrates how perplexing and delicate choices like these are to make and accept. (Meyer, 1995, pp.88-89) ofthe clean up and are still working on cleaning up. Talbott recommends several policy elements countries can implement to avoid the problems that the US has faced, including removing barriers to full participation in health and mental health delivery systems, 42 terminating practices that discriminate, and providing for "full civil rights and opportunities, including equal access to housing, education, vocational rehabilitation, income maintenance, and adequate care in the community" (Talbott, 2004, p.4) Adequate funding, creation of sufficient community-based programs, coordinated local and national government support, appropriate funding (amount and duration), and continued research are some of the other recommendations from Talbott. The EU has done a good job of incorporating these principles into their policies. The US has also included these elements in their policies and the ADA has been used as the standard for effective civil rights policy; however, they came about 15 years after the rapid deinstitutionalization and were not able to ameliorate many of the problems unintentionally caused. The following quote from the World Health Organization's policy brief "Mental Health II Balancing Institutional and Community-Based Care" shows how deinstitutionalization has transpired in the EU. The twentieth century was characterized first by the rise and then by the gradual reduction in the use of asylums as the mainstay of service provision for people with mental health problems in many parts of Europe. As the failings of the asylum system have become clearer, and as attitudes towards the protection of human rights have gained in importance since the 1950s, there has been a gradual shift by health policy-makers towards a policy of deinstitutionalization, that is, a reduction in the use of secluded, long-stay psychiatric hospitals. The costs of maintaining these expensive institutions and the availability of new medications have also undoubtedly had some influence on this process. Over the last 30 years, in western Europe in particular, individuals have been transferred to other settings such as general hospitals or various forms of community-based supported living establishments, or have been returned to their family homes. (McDaid & Thornicroft, 2005, p.4) The key here is found in the language of the title itself: "balancing institutional and community-based care" not destroying institutions. A planned and organized transition tenninating ofthe people with mental health problems in many parts of Europe. As the failings of the asylum system have become clearer, and as attitudes towards the protection of human rights have gained in importance since the 1950s, there has been a gradual shift by health policy-makers towards a policy of deinstitutionalization, that is, a reduction in the use of secluded, long-stay psychiatric hospitals. The costs of maintaining these expensive institutions and the availability of new medications have also undoubtedly had some influence on this process. Over the last 30 years, in western Europe in particular, individuals have been transferred to other settings such as general hospitals or various fonns of community-based supported living establishments, or have been returned to their family homes. (McDaid & Thornicroft, 2005, p.4) with adequate community and governmental provisions is the only way to successfully implement a "civil rights model" of disability policy. 43 APPENDIX A RESPONSES BY NATION IN THE EU SURVEY Countries Institutes Number of Interviews Fieldwork Dates Population 15+ Belgium Inra Belgium 1043 04/01 - 25/01 8,326 Denmark Gfk Danmark 1000 03/01-04/02 4,338 Germany(East) Inra Deutschland 1015 05/01 - 26/01 13,028 Germany(West) Inra Deutschland 1007 05/01 - 26/01 55,782 Greece Market Analysis 1004 06/01 - 04/02 8,793 Spain Inra Espana 1000 08/01 - 02/02 33,024 France CSA-TMO 1008 05/01-01/02 46,945 Ireland Lansdowne Market Research 1001 05/01 - 02/02 2,980 Italy INRA Demoskopea 1001 05/01 - 02/02 49,017 Luxembourg ILRes 597 03/01 - 05/02 364 The Netherlands Intomart 1020 05/01 - 04/02 12,705 Austria Spectra 1062 02/01 - 29/01 6,668 Portugal Metris 1000 05/01 - 30/01 8,217 • Finland MDC Marketing Research 1002 02/01 - 06/02 4,165 Sweden Gfk Sverige 1000 03/01 - 06/02 7,183 Great Britain Inra UK 1001 02/01 - 24/01 46,077 Northern Ireland Ulster Marketing Surveys 321 05/01 - 25/01 1,273 TOTAL NUMBER OF INTERVIEWS 16014 4^ Inra Belgium 25/GfkDanmark 01 - 04/Gennany(26/Gennany(26/04/02/01 - 01102 02/ILRes 05/04/29/30101 06/06/24/25/16014 APPENDIX B DEFINITION COMPARISON BY COUNTRY AND PROGRAM APPENDIXB Country Welfare Definition Employment Definition Anti- Discrimination Law Definition Survey Definitions Austria The permanent need for support and care as a consequence of a physical, mental or emotional or sensory disability that is expected to last for at least six months. Based on disability assessment score and "capability to work". A score of 50+ qualifies a person for the Disabled Persons Employment Act. A score of 30+ qualifies a person for the Labour Market Service Act. N/A Anyone who has any long-lasting illness, disability or infirmity that limits their activities in any way. Belgium A long-lasting and substantial limitation of the possibilities of social integration due to reduced intellectual, physical or sensory capacities. Eligibility definition: A long-lasting and substantial limitation of the possibilities of social integration due to reduced intellectual, physical or sensory capacities. Determination Criteria: 1) limitation in performance of general employment related activities. 2) Indicators of disadvantage, e.g. difficulty obtaining employment. 3) limitation in a specific job. N/A Anyone, who has any long-lasting illness, disability or infirmity that limits their activities in any way. » Country Welfare Definition Employment Definition The permanent need for support Based on disability assessment score and care as a consequence of a and "capability to work". A score of Austria physical, mental or emotional or 50+ qualifies a person for the Disabled N/A sensory disability that is expected Persons Employment Act. A score of limits their activities in to last for at least six months. 30+ qualifies a person for the Labour any way. Market Service Act. and substantial limitation of the possibilities of social integration due A long-lasting and substantial to reduced intellectual, physical or Anyone limitation of the possibilities of sensory capacities. Determination Belgium social integration due to reduced Criteria: 1) limitation in performance N/A intellectual, physical or sensory of general employment related capacities. activities. 2) Indicators of any way. disadvantage, e.g. difficulty obtaining employment. 3) limitation in a specific job. . Country Welfare Definition Employment Definition Anti- Discrimination Law Definition Survey Definitions Denmark Broken into several specific parts of the program. Definitions include: 1) people with a temporary or permanent impairment of physical or mental function. 2) persons with special needs due to substantially impaired physical or mental function or particular social problems. 3) people under 67 with substantial and permanent impairment of physical or mental function and in need of personal assistance and care and of support for the discharge of necessary practical work in the home. 4) persons with substantially and permanently impaired physical or mental function, with an activity level requiring special support. 1) A physical, psychic or intellectual reduction of functions that causes a need for compensation if the person is to function on an equal footing with other citizens in a comparable life situation. 2) limitations in performance of a specific job. 3) indicators of disadvantage, e.g. difficulty in obtaining employment. N/A Anyone who has any long-lasting illness, disability or infirmity that limits their activities in any way. Anti- Country Welfare Defmition Employment Definition Survey Definitions Definition Broken into several specific parts of the program. Defmitions include: 1) people with a temporary or permanent impairment of physical or mental function. 2) persons with special 1) A physical, psychic or intellectual needs due to substantially reduction of functions that causes a impaired physical or mental need for compensation if the person is Anyone who has any function or particular social to function on an equal footing with long-lasting illness, Denmark problems. 3) people under 67 other citizens in a comparable life N/A with substantial and permanent situation. 2) limitations in performance limits their activities in impairment of physical or mental of a specific job. 3) indicators of any way. function and in need of personal disadvantage, e.g. difficulty in assistance and care and of support obtaining employment. for the discharge of necessary practical work in the home. 4) persons with substantially and permanently impaired physical or mental function, with an activity • level requiring special support. . Country Welfare Definition Employment Definition Anti- Discrimination Law Definition Survey Definitions Finland A person who, due to impairment or sickness, has special difficulties in managing ordinary operations of life on a long-term basis. Persons whose prospects of securing, retaining and advancing in employment are substantially reduced as a result of a duly recognized physical or mental impairment. A person's employability must be affected by the impairment and functional limitations are taken into account. N/A Anyone who has any long-lasting illness, disability or infirmity that limits their activities in any way. France Those aged 16-60 who have a rate of permanent disability of 80%+ who require the assistance of another person for one or more essential activities of existence. An individual whose prospects of obtaining or keeping employment are effectively reduced by a loss or insufficiency of physical or mental capacity. Work capacity is assessed. N/A Anyone who has any long-lasting illness, disability or infirmity that limits their activities in any way. Country Welfare Definition A person who, due to impairment or sickness, has special Finland difficulties in managing ordinary physical or mental impairment. A operations of life on a long-term person's employability must be basis. affected by the impairment and any way. functional limitations are taken into account. Those aged 16-60 who have a rate of permanent disability of France 80%+ who require the assistance of another person for one or more essential activities of existence. Country Welfare Definition Employment Definition Anti- Discrimination Law Definition Survey Definitions Germany Determined on care needs. Three levels as follows: 1) help needed with at least two ADLs once a day, home help needed several times a week. Altogether the need per day must amount to at least 1.5 hours, of which time for the basic care elements (hygiene, nutrition or mobility) must comprise at least 45 minutes. 2) help needed with ADLs at least 3x a day; home help needed several times a week. Altogether the care need per day must amount to at least 3.0 hours, of which the basic care elements must comprise at least 2.0 hours. 3) help with ADLs needed 24 hours a day; home help needed several times a week. Altogether the care need per day must amount to at least 5.0 hours, of which basic care comprises 4.0 hours. Based on a measurement of the severity of impairment and limitations in performance of general employment-related activities. Individuals with a score between 30 and 50 may have "equal status" and eligible for the quota program. Rehabilitation benefits are determined using a medical report and considers the obstacles a person faces in obtaining work. Only those who can benefit from the rehabilitation are finally admitted into the program. N/A Anyone who has any long-lasting illness, disability or infirmity that limits their activities in any way. » > Anti- Country Welfare Definition Employment Definition Discrimination Law Survey Definitions Definition Determined on care needs. Three levels as follows: 1) help needed with at least two ADLs once a day, home help needed several times a week. Altogether the need per day must amount to at least Based on a measurement of the 1.5 hours, of which time for the severity of impairment and limitations basic care elements (hygiene, nutrition or mobility) must in performance of general employment-related activities. comprise at least 45 minutes. 2) Individuals with a score between 30 Anyone who has any help needed with ADLs at least and 50 may have "equal status" and long-lasting illness, Germany 3x a day; home help needed eligible for the quota program. N/A disability or infirmity that several times a week. Altogether Rehabilitation benefits are determined limits their activities in the care need per day must using a medical report and considers any way. amount to at least 3.0 hours, of which the basic care elements the obstacles a person faces in obtaining work. Only those who can • must comprise at least 2.0 hours. benefit from the rehabilitation are 3) help with ADLs needed 24 . hours a day; home help needed finally admitted into the program. several times a week. Altogether the care need per day must amount to at least 5.0 hours, of which basic care comprises 4.0 hours. Country Welfare Definition Employment Definition Anti- Discrimination Law Definition Survey Definitions Greece Those suffering from paraplegia/tetraplegia and absolute disability if the person is in permanent need of supervision, care and support provided by a third party. Quota and Subsidies are determined using a point system and the person applying must have a disability rate of 50%+. Points are given in the following areas: age, professional qualifications, family circumstances, economic situation. N/A Anyone who has any long-lasting illness, disability or infirmity that limits their activities in any way. Ireland For mobility allowance: the applicant must be unable to walk, even with the use of artificial limbs or other suitable aids, or must be in such a condition that the exertions required to walk would be dangerous. For Constant Attendance Allowance (CAA): people who are 100% disabled by occupational injury or disease. There are also a series of special benefits for the blind. A 3% public service quota exists but there is no clear definition of disability in respect to the employment programs. N/A Anyone who has any long-lasting illness, disability or infirmity that limits their activities in any way. • >-> Welfare Definition Employment Definition Discrimination Law Survey Definitions Definition Those suffering from Quota and Subsidies are determined paraplegia/tetraplegia and using a point system and the person applying must have a disability rate of in permanent need of supervision, 50%+. Points are given in the N/A disability or infirmity that care and support provided by a following areas: age, professional limits their activities in qualifications, family circumstances, any way. third party. economic situation. For mobility allowance: the applicant must be unable to walk, even with the use of artificial limbs or other suitable aids, or must be in such a condition that A 3 % public service quota exists but the exertions required to walk there is no clear definition of disability would be dangerous. For N/A Constant Attendance Allowance programs. (CAA): people who are 100% disabled by occupational injury or . disease. There are also a series of . special benefits for the blind. Country Welfare Definition Employment Definition Anti- Discrimination Law Definition Survey Definitions Italy 1) A person who is totally invalid and unable to walk or undertake ADLs without the aid of a companion. 2) one whose handicap has so reduced his or her individual autonomy that permanent, global and continuous assistance is needed. Focus is placed on "residual working capacity". Four main groups of disabled people can qualify for the quota: 1) civil invalids with 45% or less remaining capacity. 2) work invalids with 33% or less remaining capacity. 3) deaf-mutes and blind 4) invalids of war. Anyone who has any long-lasting illness, disability or infirmity that limits their activities in any way. Luxembourg N/A Anyone who has any long-lasting illness, disability or infirmity that limits their activities in any way. Netherlands A person who experiences demonstrateable limitations in the field of living or of moving in and outside the dwelling, as a consequence of sickness or infirmity. Eligibility is determined by answering the following questions: 1) Is there an illness or infirmity that leads to structural functional limitations (physical, mental)? 2) Is there a risk of serious health problems in the next five years? 3)Do the limitations have as a consequence that the person cannot work more than 75% of a normal work week? 4) Are Work Handicapped Reintegration Act measures necessary in order to enable the person to perform work functions normally? » Anyone who has any long-lasting illness, disability or infirmity that limits their activities in any way. I) N/A N/A N/A . , . menta!)? . N/A normally? Country Welfare Definition Employment Definition Anti- Discrimination Law Definition Survey Definitions Portugal 1) Individuals who cannot autonomously undertake actions which are indispensable to the satisfaction of the basic necessities of daily life. 2) Individuals that find themselves in the previous situation and are bedridden or present symptoms of a serious dementia. No general definition for employment. Sheltered workshops are available to disabled persons of working age who, due to their handicap, cannot be directly integrated into the regular labour market. Financial subsidies are available to disabled persons who demonstrate a reduced capacity to work. N/A Anyone who has any long-lasting illness, disability or infirmity that limits their activities in any way. Spain A person who needs, due to anatomical or functional losses, the help of a third person to carry out essential daily tasks. Requires a degree of handicap of 33%+. N/A Anyone who has any long-lasting illness, disability or infirmity that limits their activities in any way. Sweden Persons with large and persistent difficulties in managing daily life. Definitions for handicap allowance and SoL are not specified. 1) Functional capacity must for a considerable time-period have been reduced to the extent that the person: a) in his/her daily activities needs time-consuming help from another person, b) in order to be in gainful employment needs continuous help from another person, c) has considerable extra living costs. 2) A person with a work-related disability is a person who due to functional limitation has reduced work capacity and therefore has, or can be expected to have, difficulties in gaining or keeping regular employment. N/A » Anyone who has any long-lasting illness, disability or infirmity that limits their activities in any way. Anti- Country Welfare Definition Employment Definition Discrimination Law Survey Definitions Definition 1) Individuals who cannot No general definition for employment. autonomously undertake actions Sheltered workshops are available to which are indispensable to the disabled persons of working age who, Anyone who has any satisfaction of the basic due to their handicap, cannot be long-lasting illness, Portugal necessities of daily life. 2) directly integrated into the regular N/A disability or infirmity that Individuals that find themselves labour market. Financial subsidies are limits their activiti