Rights of People with Disabilities “People with disabilities historically have been denied the civil, political, and social rights… considered fundamental to citizenship… because of practical difficulties that may prevent this population from exercising them. The denial of their human rights has been justified on the grounds that, for a person who is incapable of recognizing or appreciating human rights, the loss of those rights is less significant than it is for others.” (Walker, Walker, and Gosling, 1999) Despite the statement of the United States Constitution’s 14th amendment: “no state shall make or enforce any law which shall… deny to any person within its jurisdiction the equal protection of the laws,” people with disabilities have been made to fight a long battle to claim their “equal protection” under the law. The Disability Rights Movement may have started in 1841 with Dorothea Dix’s campaign to improve conditions for people with disabilities incarcerated in almshouses. Or it may have begun later, in 1935, when the Social Security Act began providing public funding for people with disabilities. Some say it really began in 1965, when Ed Roberts (now known as the father of the independent living movement) sued for admission to the University of California and became the first disabled student there—the same year that James Meredith sued to become the first black student at the University of Mississippi. The next page gives a brief history of the Disability Rights Movement. 1829 Louis Braille invents the raised dot system for the blind known as Braille 1841 Dorothea Dix begins her efforts to improve conditions for people with disabilities incarcerated in jails and poor houses 1932 Franklin Delano Roosevelt (physically disabled by polio) is elected President of the United States 1935 The Social Security Act becomes law 1950 Gunnar Dybwad and others organize the Association of Retarded Citizens 1956 A law is enacted enabling people aged 50 or older to qualify for Social Security Disability Insurance. The law is amended to include people younger than 50 in 1960 and establishes Medicare and Medicaid in 1965. 1962 Edward Roberts sues to gain admission to the University of California 1972 Appalling conditions at Willowbrook State School in New York City are documented on television 1973 The Rehabilitation Act becomes law 1974 The first convention of People First is held 1975 The Education of All Handicapped Children Act becomes law (now the Individuals with Disabilities Education Act) The Developmental Disabilities Assistance and Bill of Rights Act becomes law 1981 The United Nations designates 1981 as the International Year of Disabled Persons 1988 The Fair Housing Act is amended to include people with disabilities 1990 The Americans with Disabilities Act becomes law 1999 In Olmstead v. L.C. and E.W, the US Supreme Court decides that individuals with disabilities must be offered services in “the most integrated setting” Some of the most groundbreaking laws include: 1975 Developmental Disabilities Assistance and Bill of Rights Act -defined “developmental disability” as a condition likely to continue indefinitely and to require lifelong services -emphasized the right to least restrictive supports especially for individuals in institutions -established a protection and advocacy system in each state and provided federal financial support for specialized services for people with disabilities 1975 Education of All Handicapped Children Act (now Individuals with Disabilities Education Act) -mandated schools to provide appropriate educational services to children with disabilities 1988 Fair Housing Act Amendment -protected people with disabilities from discrimination in housing 1990 Americans with Disabilities Act -protects people with disabilities from discrimination in employment, transportation, public accommodations, public services, and telecommunications In 1948, the United Nations proclaimed the Universal Declaration of Human Rights, which recognizes that “the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world…” and “disregard and contempt for human rights have resulted in barbarous acts which have outraged the conscience of mankind.” According to the Declaration, all human beings have the following rights: Life, liberty, and security of person Freedom from slavery & servitude Freedom from torture Recognition as a person before the law Equal protection under the law Effective remedies for violation of rights No arbitrary arrest, detention, or exile Fair and public hearings Presumption of innocence until proven guilty No arbitrary interference with privacy, family, home or correspondence Freedom of movement & residence Freedom to seek asylum from persecution in other countries Marriage by consent and protection of family by society Freedom to own property and not be arbitrarily deprived of property Freedom of thought, conscience, and religion Freedom of opinion and expression Peaceful assembly and association Equal access to public services Employment with fair compensation Rest & leisure Appropriate standard of living Education Freedom to participate in the cultural life of the community The United States Constitution guarantees certain rights to each citizen: Access to the courts and legal representation Free association Right to contract, own, and dispose of property Equal educational opportunity Equal employment opportunity Equal protection and due process Fair and equal treatment by public agencies Freedom from cruel and unusual punishment Freedom of religion Freedom of speech and expression Right to marry, procreate, and raise children Right to privacy Services in the least restrictive environment Right to vote A person cannot be deprived of his or her rights unless a court declares him or her in need of a guardian. If the person is declared in need of a guardian, a guardian will be appointed to make decisions on behalf of the person. “The intent should be to create minimal restrictions and to foster the greatest possible degree of comfort, dignity and self-sufficiency.” (Kansas Guardianship Program) In Kansas, guardians CAN: -provide care, treatment, transportation, education, support, and maintenance -assure the ward resides in the least restrictive environment -assure the ward receives appropriate medical care and services -provide consent on behalf of the ward Guardians CANNOT: -place a ward in a facility or institution (court order required) -consent to psycho-surgery or removal of a limb (court-order required except in case of emergency) -prohibit marriage or divorce -consent to termination of parental rights -consent to sterilization of the ward Guardianship should be considered a last resort. Alternatives to guardianship include: Power of Attorney A power of attorney is when a person gives another the power and right to make decisions and take action on the person's behalf. The authorized agent can act in health care, financial, and business decisions. A person can authorize power of attorney without court involvement, unlike guardianship, which requires a court order. Trusts A "living trust" is a revocable trust set up to control and manage property and affairs. Trusts do not require a court order, either. Protective Payee or Representative A protective payee or representative is authorized to manage benefits received by a person who is not able to manage benefits alone. The protective payee takes care of payments from public aid programs or Social Security, for instance, and is limited to handling payments from the specifically named programs. Social Support Programs and Services Some individuals may only need minor assistance with decision-making and daily living, in which case their needs might be best met by a bill-paying service, financial advisor, housekeeper, health aide, or meal delivery service. By utilizing existing social support programs, the need for such a drastic step as guardianship may be avoided. Commonly recognized rights of individuals in residential programs include: (from Gardner & Chapman, 1993) Right to services in the least restrictive environment Right to normalized living conditions Right to dignity and respect Right to freedom from discomfort and deprivation Right to appropriate clinical, medical, and therapeutic services Right to vote Right to religious worship Right to private communication Right to free association Right to physical exercise Right to seasonal, clean, neat clothing Right to manage personal funds Right to bed, dresser, and storage area Right to privacy Right to access to public media Right to adequate nutrition Freedom from unnecessary medication and restraints Freedom from involuntary servitude Right to equal protection and due process Supporting Rights in Residential Programs: Least Restrictive Environment/Normalized Living Conditions/Access to appropriate clinical, medical, and therapeutic services -Agency is required by law to provide the most typical setting or service -Service or setting must also meet the particular needs of the person by providing necessary support Dignity & respect/ Freedom from discomfort and deprivation/Freedom from unnecessary medication & restraints -Human Rights Committee should meet to review the policies, procedures, and services of the agency. Human Rights Committees can be composed of civic leaders, advocates, lawyers, people with developmental disabilities, and family members. -Protection and Advocacy organizations Equal Protection and Due Process -“If the state restricts a right for the purpose of providing a treatment or service, then the state is obligated to provide this treatment or service.” –Gardner & Chapman, 1993, p. 70 -Rights guaranteed by the Constitution can only be abridged by a court of law -Rights should not be restricted any longer than necessary -The restriction must be the least restrictive measure possible Right to vote/religious worship/physical exercise -Individuals should be fully supported to engage in civic, religious, and leisure activities of their choice. Staff should provide transportation, investigate accessible activities, and remove barriers to participation wherever possible. Right to private communication -Staff can support a person with disabilities to engage in verbal and written communication privately by teaching the person to use the telephone or computer independently to whatever extent possible. All communications should be considered confidential. Right to free association -Helping a person build relationships with others is one of the most important tasks for a supporter. Encourage the person to communicate with friends and family in person, by telephone, or by letter. Each person has the right to associate with people of his or her choice. Right to seasonal, clean, neat clothing/bed, dresser, and storage area/managing personal funds -Individuals have the right to own property and to use their personal funds as they choose. People should be supported to spend their money as independently as possible, which may involve training in shopping, banking, and accessing money. A person’s possessions should be treated with respect, should not be borrowed without permission, and, if borrowed, should be returned in good condition. Right to privacy -Privacy can be provided easily, by helping the person close bathroom and bedroom doors, pulling curtains while bathing, using the restroom, dressing, and having medical procedures performed. People have the right to spend time alone if they wish, and should have plenty of space to do so. When entering a private area such as a bedroom or bathroom, it is polite to knock, announce oneself, and wait for permission to enter. People should also have free access to their own private areas and items (closets and bedrooms should not be locked unless the person has a key). “From the beginning of recorded history, mythical perceptions and stereotypical attitudes have portrayed individuals with disabilities as different, aberrant, deficient, incompetent, and more. But like gender and ethnicity, a disability is simply one of many natural characteristics of being human.” (Kathie Snow) Conclusion: People with disabilities and their families and advocates have spent much of the past century fighting to receive the same rights that most Americans take for granted. Slowly, our culture is shifting to embrace the concept of equality regardless of ability, but for many people with disabilities, access to some freedoms requires a foundation of supports that can be better provided by strong advocates and a well-informed public. Kathie Snow believes,”… legal equality and ‘special’ services cannot guarantee inclusion, dignity, freedom, friendships, choice, self-direction, being seen as a valuable and competent human being, and many of the other ordinary, but precious, opportunities and experiences most of us take for granted.” She states that, as supporters, we simply need to “ensure they have the tools they need for success… to enhance their successful inclusion and participation” in ordinary environments. That is real equality. References: Alternatives to guardianship. (n.d.). Retrieved from www.lawyers.com. ARC of the United States. (2010). Civil rights issues. Retrieved from http://www.thearc.org/page.aspx?pid=2439. Disability Rights Center of Kansas. (2010). Where we came from: A brief history of the disability rights movement and disability discrimination. Retrieved from www.drckansas.org. Gardner, J.F., & Chapman, M.S. (1993). Developing staff competencies for supporting people with developmental disabilities: An orientation handbook. Baltimore: Brookes. Herr, S. (1999). Legal rights and vulnerable people. In Herr, S. & Weber, G. (Eds.) Aging, rights, and quality of life. Baltimore: Brookes. Schwartzenberg, S. (2005). Becoming citizens: Family life and the politics of disability. Seattle: University of Washington Press. Snow, Kathie. A new way of thinking. (2001). Retrieved from www.disabilityisnatural.com. United Nations. (1948). The universal declaration of human rights. Retrieved from www.un.org. Walker, A., Walker, C., & Gosling, V. (1999). Quality of life as a matter of human rights. In Herr, S. & Weber, G. (Eds.) Aging, Rights, and Quality of Life. Baltimore: Brookes.