Source: http://www.drckansas.org/archive/disability-awareness-project/history-of-disability-rights-in-kansas-us
Timestamp: 2019-04-26 03:39:39+00:00

Document:
Timeline of the disability rights movement in both Kansas and the United State and other important information on the history of disability rights issues.
Special thanks to the Bancroft Library at the University of California Berkeley for many of the records and source materials used to develop this history.
The disability rights movement came to fruition in the 1960s after significant groundwork was laid by numerous individuals from around the country. All of those people in all of those places were reacting to one common issue – people with disabilities have the right to experience life in the same manner, and to the same degree as Americans without disabilities. Building on the growing civil rights movement, people with disabilities began demanding access to education, services and lifestyles that others enjoyed. The “formalization” of the disability rights movement was found in the development of the Independent Living Movement beginning in Berkeley California in 1970 with the establishment of the Center for Independent Living.
It’s difficult to pinpoint the time, place and people that initiated the disability rights movement. This is just one perspective on the important events, people and places that would bear the infant to become known as the disability rights movement. It is important to note that the disability rights movement did not begin in a vacuum, it was one small part of the larger civil rights movement that was happening throughout America. Although the “movement” is not recognized as an organized civil rights struggle before 1962, there were several important events that created the fertile ground from which the movement would spring up. The following are just a few of the most important events.
1951 - This is a 1951 letter from someone in the nurse’s office at Carlstadt, New Jersey Public School #1 and sent to the New Jersey Parent Groups for Retarded Children. The cancelled envelope from the letter is stapled to the bottom of the letter.
1963 - President Kennedy, in an address to Congress, calls for a reduction, “over a number of years and by hundreds of thousands, (in the number) of persons confined” to residential institutions, and he asks that methods be found “to retain in and return to the community the mentally ill and mentally retarded, and there to restore and revitalize their lives through better health programs and strengthened educational and rehabilitation services.” Though not labeled such at the time, this is a call for deinstitutionalization and increased community services.
John Hessler joins Ed Roberts at the University of California at Berkeley, other disabled students follow. Together they form the Rolling Quads to advocate for greater access on campus and in the surrounding community. The Rolling Quads use the civil rights movement happening in Berkeley as the structure and model to develop and begin the modern disability rights movement. At that time they, along with many others had been living in a hospital on the Campus. Today, the old hospital that housed the disabled students program is the location of the UC Berkeley School of Business.
Christmas in Purgatory by Burton Blatt and Fred Kaplan, is published, documenting the appalling conditions at state institutions for people with developmental disabilities. This photographic essay about the state of institutions in America is still available today. Many of the photos used in this presentation are from Christmas in Pergatory.
1969 - Niels Erk Bank-Mikkelsen from Denmark and Bengt Nirje from Sweden introduce the concept of normalization to an American audience at a conference sponsored by the President’s Committee on Mental Retardation, helping to provide the conceptual framework for deinstitutionalization. Their remarks, and those of others, are published in Changing Patterns in Services for the Mentally Retarded.
Ed Roberts was starting a self help movement that would radicalize how people with disabilities perceived themselves. He did it for himself and then began laying the groundwork for the rest of us. Independence and rehabilitation have not been the same since, and will never return to the archaic notions which perceived people with disabilities as passive recipients of charity, unable to self direct their lives.
This is a faded color photograph showing a flat suburban neighborhood street. It is quiet and deserted. There is no sidewalk but a slightly worn grassy footpath edges the side of the street. A flat area of close cut grass extends out from the curb along the street. There is a street light on a high pole. In the background rises a two-story brick building and two white houses with big trees in the front yards. TV aerials are visible on rooftops in the distance. A car is just rounding the corner at the far end of the street and headed this way, perhaps into a parking lot or down another street. There is a white metal sign with black letters placed at the curb that reads: "No Wheel Chairs Beyond this Point."
1981 - Congress passes the Civil Rights of Institutionalized Persons Act, authorizing the U.S. Justice Department to file civil suits on behalf of residents of institutions whose rights are being violated.
1984 - The Baby Jane Doe case, like the 1982 Bloomington Baby Doe case, involves an infant being denied needed medical care because of her disability. The case results in litigation argued before the U.S. Supreme Court in Bowen v. American Hospital Association, and in passage of the Child Abuse Prevention and Treatment Act Amendments of 1984.
The U.S. Supreme Court rules, in Irving Independent School District v. Tatro, that school districts are required under the Education for All Handicapped Children Act of 1975 to provide intermittent catheterization, performed by the school nurse or a nurse’s aide, as a “related service” to a disabled student. School districts can no longer refuse to educate a disabled child because they might need such a service.
On March 13, 1988 the Gallaudet administration announces that I. King Jordan will be the university’s first deaf president.
The Technology-Related Assistance Act for Individuals with Disabilities (the “Tech Act” is passed, authorizing federal funding to state projects designed to facilitate access to assistive technology.
The Congressional Task Force on the Rights and Empowerment of Americans with Disabilities is created by Rep. Major R. Owens and co-chaired by Justine Dart Jr. and Elizabeth Boggs. The task force begins building grassroots; support for passage of the ADA. Justin Dart would later be sitting next to President George Bush when he signs the Americans With Disabilities Act of 1990. Justin was often seen on the front line of the disability rights struggle. He was a man of great means. He founded and was chief executive of Japan Tupperware Inc. His father, the late Justin Dart, was a California industrialist and close friend of President Reagan.
Congress overturns President Ronald Reagan’s veto of the Civil Rights Restoration Act of 1987. The act undoes the Supreme Court decision in Grove City College v. Bell and other decisions limiting the scope of federal civil rights law, including Section 504 of the Rehabilitation Act of 1973.
The Americans with Disabilities Act is signed into law by President George Bush on 26 July in a ceremony on the White House lawn witnessed by thousands of disability rights activists. The law is the most sweeping disability rights legislation in history, for the first time bringing full legal citizenship to Americans with disabilities. It mandates that local, state, and federal governments and programs be accessible, that businesses 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 in other areas of public life.
1996 - Congress passes legislation eliminating more than 150,000 disabled children from the Social Security rolls, as well as individuals who are alcohol or drug dependent.
Kansas passes the Developmental Disabilities Reform Act, formalizing the structure to strengthen and better ensure that long-term care is provided in community-based settings instead of institutions.
Not Dead Yet is formed by disabled advocates to oppose Jack Kevorkian and the proponents of assisted suicide for people with disabilities. The Supreme Court agrees to hear several right-to-die cases, and disability rights advocates redouble their efforts to prevent a resurgence of “euthanasia” and “mercy killing” as practiced by the Nazis against disabled people during World War II. Of particular concern are calls for the “rationing” of health care to people with severe disabilities and the imposition of “Do Not Resuscitate” (DNR) orders for disabled people in hospitals, schools, and nursing homes.
1997 - The IDEA reauthorization that took place in 1997 expanded the responsibilities for schools to involve and solicit input of parents , it increased the due process rights of parents related to disciplinary actions taken against children with disabilities, and it substantially strengthened the requirements for education in the least restrictive environment (LRE). “Appendix A” was designed to communicate the LRE means that it is presumed the general education classroom is the true least restrictive educational setting, and that auxiliary aids and services are to be provided that empower every student to remain in that “placement.” Today, if a school attempts to remove a student from the general education classroom to a setting that is 25% or more restrictive they must follow certain procedures involving the parent in the decision making, etc.
Topeka State Hospital is officially closed. However, the Hospital’s cemetery is a reminder of the thousands of individuals who resided in the facility during its more than 100 year history. The cemetery hosts the unmarked burial sites for more than 1100 residents who died during their stay. Fewer than ten plots have any kind of marker.
1999 - Olmstead v. L.C. and E.W: This Supreme Court case that determined that forced institutionalization is discrimination. Olmstead requires that Medicaid services, e.g., long term care, must be provided in the most inclusive / integrated setting. In other words, people who are eligible for long term care can not be forced into nursing homes, group homes or other institutions. The state must provide community based options.
Murphy vs. UPS: This ADA employment case was a setback for people with disabilities protections from discrimination. Murphy was terminated from his position because of hypertension. The court found that that Mr. Murphy was not “disabled” under the definition in the ADA because his condition was controlled by medication. Therefore his claim of discrimination on the basis of disability was denied. Essentially, the court re-defined disability to not only include the persons impairment, but that the impairment must be evaluated in its mitigated state. In other words, if you have a disability which by itself falls into the ADA’s definition of disability, but you use technology, medication, or some other mitigating treatment that eliminates the affect of the disability on the person’s ability to function, you are no longer considered an individual with a disability under the law.
2001 – UAB vs. Garnett: this Supreme Court case resulted in an expansion of state’s rights of Sovereign Immunity under the 14th Amendment to the Constitution. The Court said that a state can not be sued by it’s employees for any action that it takes. Thos case severely restricts state employees due process rights under the ADA and other civil rights laws.
Help America Vote Act: A response the problems encountered in Florida during the 2000 General Election, HAVA again ensures people with disabilities equal access to the election process. Lack of understanding of the laws requiring access is widespread not only in Kansas, but also around the country. Here is just one example of how voters with disabilities have been relegated to a separate and unequal system.
To O'Donnell, 65, it was a case of democracy being served but in discriminatory fashion. She had to fill out a paper ballot in public, when able-bodied individuals could vote privately behind curtains.
For decades, people with disabilities, both old and young, have wanted alternatives to nursing homes and other institutions when they need long-term services. Our long term care system has a heavy institutional bias. Every state that receives Medicaid MUST provide nursing home services, but community based services are optional. Seventy five percent of Medicaid long term care dollars pay for institutional services, while the remaining 25% must cover all the community based waivers, optional programs, etc.
ADAPT has drafted a bill which will fundamentally change our long term care system and institutional bias that now exists. Instead people with disabilities and their families will be able to choose where and how they receive services.
Though MiCASSA was not enacted, it helped change the debate on community based services and supports for people with disabilities.
ADAPT met with the US Department of Health and Human Services at their Washington D.C. offices in March 2004.
ADAPT continues to be a progressive conscience of the Disability Rights movement.
The ADA was meant to be just like other civil rights laws that address employment discrimination – when someone experiences discrimination because of disability, the sole focus of the legal case should be on whether the actions of the employer were unlawful. However, the Courts have created an extra hoop for people with disabilities to challenge an employer’s actions. First, people with disabilities must “prove” their disability by providing highly personal and often wholly irrelevant information about their lives. Only if they have satisfied this difficult standard are they then permitted to present the facts of discrimination they encountered and increasingly, fewer and fewer people are able to get to that point.
2010 – The most substantial health insurance reform in the history of our nation is signed into law by President Barack Obama. Two long-term care provisions are contained in this far larger bill that have a particularly important impact on people with disabilities. The first is the “community first choice option,” which ends the money follows the person initiative to 2016 and provides additional options to encourage states to stop the institutional bias against home and community based services.
The second long-term care provision contained in the larger health insurance reform bill is the CLASS Act (Community Living Assistance Services and Supports Act), which creates a national, voluntary long-term care disability insurance program through payroll deductions which would provide benefits based on the significance of the disability to purchase long-term care services and supports. This is an idea whose time has come. The CLASS Act provision provides long-term care services through this voluntary insurance program. So, how does one currently qualify for long-term care services and supports for a disability? Typically you must either purchase private long-term care insurance (which is cost prohibitive) or be forced into poverty in order to qualify for Medicaid and Social Security to obtain the long-term care services and supports you need to accommodate your disability needs. Kansas has the 35th lowest, or worst, income eligibility requirements for Medicaid. Many Kansans with disabilities are living on far, far less than $700 a month just to qualify for these critical services through Medicaid.
The current system forces people into poverty and creates dependence. The CLASS Act creates a nationwide optional long-term care insurance benefit to break that cycle by creating an opportunity for independence.
The cost of providing long-term care services and supports are projected to more than double by 2040 due to the aging of Americans, including the baby boomers.
AMERICA AND KANSAS HAVE A LONG AND CRUEL HISTORY OF DISCRIMINATION AGAINST PEOPLE WITH DISABILITIES.
Discrimination is the making of distinctions in the way a person or class of persons is treated based on a particular characteristic or set of characteristics of that individual(s). In this case that characteristic is disability. Examples of discriminatory acts range from a one-inch step into a building, to forced institutionalization, and to the most heinous examples of abuse and neglect. The history of discrimination, forced institutionalization, forced sterilization, denial of education, being hidden away from society, etc., has been well documented by Congress and by the Courts.
• Historic Discrimination: The “propriety of any legislation 'must be judged with reference to the historical experience ... it reflects.” Florida Prepaid Postsecondary Educ. Expense Bd. v. College Sav. Bank, 527 U.S. 627, 640 (1999) (quoting Flores, 521 U.S. at 525). While petitioner and its seven amici States ignore it, Congress and this Court have long acknowledged the Nation's “history of unfair and often grotesque mistreatment” of persons with disabilities. Cleburne, 473 U.S. at 454 (Stevens, J., concurring); see also Olmstead v. L.C., 527 U.S. 581, 608 (1999) (Kennedy, J., concurring) (“[O]f course, persons with mental disabilities have been subject to historic mistreatment, indifference, and hostility.”); Cleburne, 473 U.S. at 446 (“Doubtless, there have been and there will continue to be instances of discrimination against the retarded that are in fact invidious.”); Alexander v. Choate, 469 U.S. 287, 295 n.12 (1985) (“well- cataloged instances of invidious discrimination against the handicapped do exist”).
• Enduring Unconstitutional Treatment: “Prejudice, once let loose, is not easily cabined.” Cleburne, 473 U.S. at 464 (Marshall, J., concurring); see Hibbs, 123 S. Ct. at 1979 (noting the “persistence” of gender discrimination and the “firmly rooted” stereotypes that accompany it). Indeed, Congress found that “our society is still infected by the ancient, now almost subconscious assumption that people with disabilities are less than fully human and therefore are not fully eligible for the opportunities, services, and support systems which are available to other people as a matter of right,” and “[t]he result is massive, society-wide discrimination.” S. Rep. No. 116, supra, at 8-9.
• Another section reads, “That is because a concerted process of changing discriminatory laws, policies, practices, and stereotypical conceptions and prejudices did not even begin until the 1970s and 1980s. Cf. Hibbs, 123 S. Ct. at 1978. Even then, “out-dated statutes [were] still on the books, and irrational fears or ignorance, traceable to the prolonged social and cultural isolation” of those with disabilities “continue to stymie recognition of the[ir] dignity and individuality.” Cleburne, 473 U.S. at 467 (Marshall, J., concurring) (emphasis added). The involuntary sterilization of the disabled is not distant history; it continued into the 1970s, and occasionally even into the 1980s-- well within the lifetime of many current governmental decision makers. P. Reilly, The Surgical Solution 2, 148 (1991); Look Back at Oregon's History of Sterilizing Residents of State Institutions (National Pub. Radio broadcast Dec. 2, 2002). As recently as 1983, fifteen States continued to have compulsory sterilization laws on the books. Spectrum 37; see Stump v. Sparkman, 435 U.S. 349, 351 (1978) (state judge ordered the sterilization of a “somewhat retarded” 15-year-old girl); Reilly, supra, at 148-160; contrast Skinner v. Oklahoma, 316 U.S. 535, 541 (1942) (strict scrutiny governs sterilization classifications). Until the late 1970s, “peonage was a common practice in [Oregon] institutions.” Governor J. Kitzhaber, Proclamation of Human Rights Day, and Apology for Oregon's Forced Sterilization of Institutionalized Persons, Speech at Salem, Or. (Dec. 2, 2002). As of 1979, “most States still categorically disqualified ‘idiots’ from voting, without regard to individual capacity and with discretion to exclude left in the hands of low-level election officials." Cleburne, 473 U.S. at 464 (Marshall, J., concurring).
• See also California. Attorney General, Commission on Disability: Final Report 17, 81 (Dec. 1989) (Cal. Report) (“A bright child with cerebral palsy is assigned to a class with mentally retarded and other developmentally disabled children solely because of her physical disability”; in one town, all children with disabilities are grouped into a single classroom regardless of individual ability.); 136 Cong. Rec. 10,913 (1990) (Rep. McDermott) (school board excluded Ryan White, who had AIDS, not because the board “thought Ryan would infect the others” but because “some parents were afraid he would”); NY 1123 (three elementary schools locked mentally disabled children in a box for punishment); Education for All Handicapped Children, 1975-1974: Hearings Before the Subcomm. on the Handicapped of the Senate Comm. on Labor & Pub. Welfare, 93d Cong., 1st Sess., Pt. 2, at 793 (1973) (Christine Griffith) (first-grade student “was spanked every day” because her deafness prevented her from following instructions); id., Pt. 1, at 400 (Mrs. R. Walbridge) (student with spina bifida barred from the school library “because her braces and crutches made too much noise”); id. at 384; 2 Leg. Hist. 989; Spectrum 28, 29; UT 1556; PA 1432; NM 1090; OR 1375; AL 32; SD 1481; MO 1014; NC 1144; Garrett, 531 U.S. at 391-424 (Breyer, J., dissenting).
• There is a long and unfortunate history of people with disabilities being denied access to government services and programs. A few examples: A paraplegic Vietnam veteran was forbidden to use a public pool; the park commissioner explained that “[i]t's not my fault you went to Vietnam and got crippled.” 3 Leg. Hist. 1872 (Peter Addesso); see also id. at 1995 (Rev. Scott Allen) (woman with AIDS and her children denied entry to a public swimming pool); 2 Leg. Hist. 1100, 1078, 1116; WS 1752 (deaf child denied swimming lessons); NC 1156 (mentally retarded child not allowed in pool); CA 166; MS 855; May 1989 Hearings 76 (Ill. Att'y Gen. Hartigan) (visually impaired children with guide dogs “cannot participate in park district programs when the park has a ‘no dogs’ rule”); NC 1155; PA 1391 (limiting library cards for “those having physical as well as mental disabilities”); CA 216 (wheelchair users not allowed in homeless shelter); CA 223 (same); DE 322 (same for mentally ill); KS 713 (discrimination in state job training program); IL 533 (female disability workshop participants advised to get sterilized); IA 664; AK 72, 145; OH 1218; AZ 116; AZ 127; HI 456; ID 541; see generally Spectrum App. A (identifying 20 broad categories of state-provided or supported services and programs in which discrimination against persons with disabilities arises).
The protection and advocacy system was founded in 1975 because of the sudden public acknowledgment of the horrific abuses that people with developmental disabilities were experiencing in institutions all around the country. Unfortunately by the mid 1970s thousands upon thousands of individuals with disabilities had been forced to live in institutions and as a result had been brutally abused, tortured and denied any chance at the life that other Americans enjoyed. In Kansas, the Disability Rights Center of Kansas is the Protection and Advocacy System, having been founded in 1977.
People with a wide range of disabilities were, and still are institutionalized. People were referred to as the “feeble minded, epileptics, Mongolian idiots, imbeciles, and insane.” Numerous public policies and practices of publicly mandated, publicly funded and publicly accepted discrimination and abuse were instituted. Today, the institutions look different in size, color, location, furnishings and appearance, but make no mistake, an institution is an institution is an institution. Regardless of how well meaning the intent, any living situation where the “owner,” service provider, administration or other systems or persons control your lifestyle, your room mates, your money, your meals, your recreation and your movements, (and on and on), is an institution. Institutions by their very nature deny, withhold, violate and abuse the rights of the people that live there.
In response to the historic discrimination against people with disabilities, the Protection and Advocacy (P&As) System. Every state and most US Territories have a designated protection and advocacy system (again, in Kansas this is the Disability Rights Center). P&As provide legally-based advocacy, including free advocacy and legal services, to people with disabilities in order to protect, enforce and enhance their rights under the law. P&As also have special powers under federal law to investigate abuse and neglect, along with the corresponding authority to hold abusers accountable through civil actions.

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