Disability rights

BACKGROUND

There are many definitions for disability, and it remains a controversial and sensitive subject that few advocacy groups agree on.

When referring to an individual who is impaired, the American Psychiatric Association (APA) style guide maintains that the pronoun or person's name should come first followed by his/her impairment. For example, instead of saying "autistic boy" the APA encourages people to say "boy with autism." This method helps to give a person with a disability his/her own identity instead of simply defining a person by his/her disability.

Disability models: Disability scholars use four models to interpret disability. The way in which scholars view disability is not through one sole model, but through a combination of all four models. The first, the moral model, is the oldest model and views disability as a result of sin.

The second model, the medical model, which arose around the time of modern medicine in the 19th Century, views disability as something to be cured with medicine.

The rehabilitation model is similar to the medical model, in that it assumes that a disability is something that requires treatment, except in this model, treatment involves rehabilitation, therapy, and/or counseling rather than medicine.

The last disability model is the socio-political model, which views disability as an ordinary occurrence in life. Thus, the person with a disability is not the problem. Instead, negative stereotypes and environmental obstacles that face that person are seen as problems.

Disability rights: Disability rights stem from the idea that people with disabilities should be guarded against abuse; given basic rights; provided with adequate healthcare, education, employment, housing, and transportation; and are fairly represented within the justice/legal system.

Disability rights are enforced with various laws and protected by many nationwide advocacy groups. The most notable disability rights acts in the United States include the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990.

HISTORY

General: The disability rights movement started in the United States in the mid 1800s. However, many historians argue that the movement did not really begin to take off until the 1960s.

1800s: The earliest part of the disability rights movement focused on individuals with sensory disabilities.

In 1816, the American School for the Deaf was founded in Connecticut, making it the first school for people with disabilities in the western world.

In 1848, the Perkins Institute in Boston was founded by Samuel Gridley Howe as the first residential institution for people with intellectual disabilities.

In 1860, Simon Pollak introduced Braille for blind individuals at the Missouri School for the Blind.

In 1864, President Abraham Lincoln signed the Enabling Act, which allowed the Columbia Institution for the Deaf, Dumb and the Blind to give out college degrees, making it the first college in the world established for people with disabilities.

In 1869, a patent for the first wheelchair was presented to the U.S. Patent Office.

On June 27, 1880, Helen Keller was born deaf and blind. Keller went on to be an influential disability rights activist. She founded the Helen Keller International (HKI) Organization with George Kessler in 1915 and helped establish the American Civil Liberties Union (ACLU) in 1920.

In 1880, the National Association of the Deaf (NAD) was founded to help protect the rights of people with hearing impairments.

In 1883, the disability rights movement experienced a setback due to the adoption of eugenics, a term coined by Sir Francis Galton in England. As defined by the Second International Eugenics Conference in 1921, eugenics means the self-direction of human evolution. Followers of eugenics believe that it is possible to improve the qualities of the human population by discouraging the reproduction of people thought to have undesirable qualities, such as those with disabilities.

In the United States, the eugenics movement led to laws that prevented people with disabilities from immigrating, marrying, or having children. These laws sometimes resulted in the institutionalization and forced sterilization of many disabled people, including children.

1900s: In 1911, Congress passed a joint resolution that authorized a federal committee to investigate workers' compensation, more specifically, the employer's liability for financial compensation to injured employees.

By 1913, 21 states had some form of worker's compensation established, and by 1919 this number rose to 43 states.

In 1929, The Seeing Eye©, the world's first dog guide school, was established.

In 1935, Congress and President Franklin D. Roosevelt passed the Social Security Act, which primarily gave federal funding to the elderly, but also supplied federal assistance to the blind and to disabled children, making it the first act in history that included individuals with disabilities

Also in 1935, The League of the Physically Handicapped, the first advocacy group for people with disabilities, was founded in New York. The League's main concern was protesting discrimination within federal relief programs against individuals with disabilities.

In 1938, the Fair Labor Standards Act was passed in an attempt to decrease discrimination against blind individuals in the work force. Although the amount of blind employees did increase, their wages were much lower than the wages of individuals who were not blind. Thus, the act actually resulted in the exploitation of blind individuals because employers were able to hire blind individuals for reduced pay.

In 1945, President Harry Truman created the National Employ the Handicapped Week, which eventually turned into the Committee on Employment of the Physically Handicapped, a group that reported directly to the President and Congress on an annual basis.

In 1950, the Social Security Act of 1935 was amended to establish both federal and state programs to aid those with significant, incurable disabilities. This amendment paved the way for the federal disability assistance programs known as Social Security Disability Insurance.

In 1968, the Architectural Barriers Act was passed, mandating federally constructed buildings to be freely accessible by people with disabilities. All new construction that was federally funded had to include elevators and wheelchair ramps in order to be approved for construction.

In 1972, in the U.S. District Court for the District of Columbia, the Mills vs. Board of Education of the District of Columbia case became the first prominent trial favoring those with disabilities. The court ruled that disabled children cannot be excluded from public schools. Following suit, the U.S. District Court for the Eastern District of Pennsylvania, in PARC vs. Pennsylvania, caused several state laws which previously excluded disabled children from public schools to be retracted.

In 1972, the Center for Independent Living was founded in Berkeley, California. The Independent Living Movement was considered revolutionary for the disability rights movement because it viewed people with disabilities as individuals, rather than as a group. The movement maintains that even individuals with the most severe disabilities should have the option to live on their own within the community.

In 1973, the Rehabilitation Act was passed, which addressed discrimination against people with disabilities for the first time in history.

In 1975, the American Coalition of Citizens with Disabilities was founded, making it the first organization to represent people with all types of disabilities.

Despite all the progress made by the disability rights movement, namely laws and advocacy groups dedicated to ensuring equal rights for individuals with disabilities, disparities are still present.

Recent data: According to the Equal Employment Opportunity Commission (EEOC), 19,453 claims were made by individuals with disabilities against current or potential employers in the fiscal year 2008. These 19,453 claims represent 20.4% of all claims made to the EEOC that year, which makes disability the sixth-leading cause of discrimination in the work place. The EEOC is a federal agency that aims to eliminate employment discrimination by investigating and resolving discrimination claims. Out of the 19,453 claims made in 2008, 15,708 were resolved, resulting in $57.2 million for the charging parties.

TECHNIQUE

Policy: Disability policy makers have historically taken one of two contradictory approaches when developing policies to help people with disabilities. The first approach is income maintenance, in which people with disabilities are supported financially by government programs and nonprofit advocacy organizations. Examples of these programs include workers' compensation, social security, and disability insurance. Although this approach may be beneficial in the short term, it may cause individuals to become permanently dependent on professional or government rehabilitative assistance. It can be argued that the income-maintenance approach to disability policy may inhibit individuals with disabilities from becoming independent individuals within society.

A second approach taken when developing disability rights policy is to provide corrective programs that help people work with their disabilities to become dependent on themselves, rather than a government program or agency. Examples of such programs include rehabilitation and independent living.

Disability law has transformed from simply providing individuals with disabilities charity into a system of rehabilitation, with an attempt to integrate them into society.

Enforcement: The interests of those with disability rights are supported, in a large part, by various advocacy groups. Advocacy groups follow current events and political decisions in order to ensure that individuals with disabilities are properly represented in news stories and considered in new legislation. Many advocacy groups have a very prevalent legal component that can assist individuals with disabilities in pursuing legal action against an employer, renter, etc., who has discriminated against the individual or who has not followed properly disability laws.

Some of the most notable disability rights groups are the Disability Rights Advocates (DRA), the American Civil Liberties Union (ACLU), the Council for Disability Rights (CDR), the National Disability Rights Network (NDRN), the Disability Rights Education & Defense Fund (DREDF), and the National Council on Disability (NCD).

Although disability rights advocacy groups have been beneficial to people with disabilities in recent history, there are some downfalls in the way these groups function. According to some historians, their largest flaw may be that they are not run by people with disabilities. This is likely because many advocacy groups were initially created by parents of children with disabilities. As a result, they may sometimes have inaccurate interpretations of the disabled community, which may cause them to advocate for things the disabled community does not want.

THEORY/EVIDENCE

General: The following are examples of major laws that have been passed specifically for individuals with disabilities. There are many additional laws, though, that have components dedicated to individuals with disabilities.

Architectural Barriers Act (1968): The Architectural Barriers Act (ABA) requires federally funded or leased buildings and facilities to comply with federal standards for physical accessibility. Requirements are limited to newly constructed or renovated buildings. The ABA does not address activities conducted at each building or facility.

The U.S. Architectural and Transportation Barriers Compliance Board oversees the ABA by investigating any claims that a federally constructed or leased building does not meet the requirements. The board determines if the facility is actually covered under the act and helps create a plan to bring said facility up to code.

Rehabilitation Act (1973): The Rehabilitation Act was signed by President Richard Nixon on September 26,1973. It has been amended twice: once in 1992 by President George H.W. Bush and again in 1998 by President Bill Clinton. This act prohibits discrimination on the basis of disability in programs conducted by federal agencies, in programs receiving federal financial assistance, in federal employment, and in the employment practices of federal contractors.

Section 501 of the Rehabilitation Act requires affirmative action, a program designed to give minority groups advantages when accessing education, employment, healthcare, and so on, and nondiscrimination in employment by federal agencies of the executive branch. This section of the Rehabilitation Act is monitored by the U.S. Equal Employment Opportunities Commission (EEOC). The EEOC investigates any claim made by a supposed discriminated individual to ensure that employers, admissions boards, and others in positions of power are following the rehabilitation act. In 2008, 19,453 claims were made with the EEOC and 15,708 were settled.

Section 503 of the Rehabilitation Act requires affirmative action and prohibits employment discrimination by Federal government contractors and subcontractors with contracts of more than $10,000. The Office of Federal Contract Compliance (OFCC) within the U.S. Department of Labor oversees this section of the act to ensure that it is followed.

Section 504 of the Rehabilitation Act states that "no qualified individual with a disability in the United States shall be excluded from, denied the benefits of, or be subjected to discrimination" under any program or activity that either receives federal financial assistance or is conducted by any executive agency. Section 504 also applies to the United States Postal Service. The OFCC also ensures that these programs adhere to this section of the Rehabilitation Act.

In 2008, 4,333 claims were made with the OFCC and $67,518,982 was made in settlements. However, the OFCC did not report how many of these claims were resolved and the methods they used to resolve them. Several equality organizations, including the Center for Corporate Equality (CCE), have called for the OFCC to be more transparent in their enforcement of the Rehabilitation Act. The CCE claims that without proper recording, the public cannot understand the OFCC's mission or its impact on equal opportunity employment.

Section 508 of the Rehabilitation Act requires federal electronic and information technology to be accessible to people with disabilities, including employees and members of the public. The Center for IT Accommodation (CITA) helps ensure that federal employees and the public have access to resources explaining the requirements of Section 508.

Voting Accessibility for the Elderly and Handicapped Act (1984): The Voting Accessibility for the Elderly and Handicapped Act requires that all polling places for federal elections are accessible to all eligible voters, including people with physical disabilities. If an accessible location is not available, a political subdivision must provide an alternative means of casting a ballot on Election Day.

This act also requires that voting ballots must be accessible to persons with hearing and seeing disabilities. For example, telecommunication devices for the deaf (TDDs) should be available.

The U.S. Department of Justice implements this act.

The Air Carrier Access Act (1986): The Air Carrier Access Act prohibits domestic and foreign air carriers offering regularly scheduled services to the public from discriminating against qualified individuals with either mental or physical impairments. Requirements of the act include boarding assistance, providing access, and making appropriate changes to airports.

The Air Carrier Act is overseen by the U.S. Department of Transportation.

Fair Housing Act (1988): The Fair Housing Act makes it unlawful to discriminate while selling or renting housing on the basis of race, color, religion, sex, disability, family status, or national origin. The act covers public and private housing, including housing that receives federal funding. Other covered activities include, for example, financing, zoning practices, new construction design, and advertising.

In addition, the Fair Housing Act requires owners of housing facilities to make reasonable exceptions in their policies to allow people with disabilities equal housing opportunities when renting or purchasing housing. For example, a landlord with a "no pets" policy may be required to grant an exception to this rule and allow an individual who is blind to keep a guide dog.

Finally, the Fair Housing Act also requires landlords to allow for reasonable changes to their properties in order to make them accessible to persons with disabilities. These changes made include expanding doorways or installing ramps. However, the landlord does not always have to pay for the renovations. The Fair Housing Act is enforced by the U.S. Department of Housing and Urban Development.

Individuals with Disabilities Education Act (1975 & 1990): The Individuals with Disabilities Education Act (IDEA), which was originally known as the Education for all Handicapped Children Act of 1975, did not come into effect until 1990 and has been amended twice, once in 1997 and again in 2004. According to the IDEA, all children with disabilities must have access to free and appropriate education. According to the law, members of the patient's school should consult with the patient's parents or caregivers to design and write an individualized education plan (IEP). Once all parties agree with the plan, the educational program should be started. The school faculty should document the child's progress in order to ensure that the child's needs are being met. The individualized program must be reviewed annually.

Those with disputes about their IEP can file a complaint with the U.S. Department of Education, specifically the Office of Special Education and Rehabilitative Services.

Americans with Disabilities Act (1990): The Americans with Disabilities Act (ADA) was signed by President George H.W. Bush on July 26 1990. It was amended by President George W. Bush on September 25, 2008. It prohibits discrimination on the basis of disability in employment (Title I), in public services within the state and local government (Title II), in public accommodations (Title III) and in telecommunications (Title IV). It also applies to the United States Congress.

Title I of the ADA requires employers with 15 or more employees to provide qualified individuals with disabilities an equal opportunity to benefit from the full range of employment-related opportunities available to others. The U.S. Equal Employment Opportunities Commission (EEOC) is responsible for enforcing Title I's prohibition of discrimination against people with disabilities in employment.

Title II of the ADA requires that people with disabilities have equal opportunities for all state and local programs and services, including employment, education, healthcare and public transportation.

The U.S. Department of Justice and the Office of Civil Rights oversee and enforce Title II of the ADA.

Title III of the ADA requires public facilities to be accessible to people with disabilities. The U.S. Department of Justice oversees Title III of the ADA.

Title IV of the ADA ensures that people with hearing and speech disabilities are able to access telephone and television services. Telephone companies must establish interstate and intrastate telecommunications relay services (TRS) 24 hours a day, seven days a week. TRS allows people with telecommunications devices for the deaf (also called teletypewriters) and voice telephones to communicate with each other through a third-party communications assistant. The Federal Communications Commission monitors Title IV of the ADA.

National Voter Registration Act (1993): The National Voter Registration Act, also known as the "Motor Voter Act," makes it easier for individuals to exercise their fundamental right to vote. The main purpose of the act is to increase registration rates among minorities and people with disabilities by eliminating any discrimination that may have prevented registration in the first place. Under this act, all voter registration offices must provide all applicants with voter registration forms, help those in need to complete the forms, and transmit all completed forms to appropriate state officials.

The National Voter Registration Act is overseen by the U.S. Department of Justice, which, when a claim is filed, brings civil action to federal courts to enforce the act.

Telecommunications Act (1996): The Telecommunications Act is an amendment to the Communications Act of 1934. Manufacturers and providers of telecommunication equipment (such as telephones, cell phones, pagers, etc.) must ensure that their products are accessible to people with disabilities. The enforcement of this act is overseen by the Federal Communications Commission.

Civil Rights of Institutionalized Persons Act (1997): The Civil Rights of Institutionalized Persons Act (CRIPA) grants the U.S. Attorney General authority to investigate living conditions in any state or local government institution, including public nursing homes, psychiatric institutions, prisons, jails, and correctional facilities. The CRIPA aims to identify and correct any problems in these institutions that jeopardize the health and safety of residents. Investigations are not warranted based on isolated incidents or on the behalf of an individual institutionalized person.

The U.S. Department of Justice ensures that the CRIPA is followed by investigating conditions in public residential facilities and by taking action if a pattern or practice of unlawful conditions is seen.

Evidence: According to some experts, the amendments to the ADA signed by George W. Bush in 2008 have helped to include patients with severe diseases or mental health problems such as AIDS, cancer, epilepsy, diabetes, and schizophrenia.

Some suggest that current legislation is vague and open to interpretation. Specifically, the Individuals with Disabilities Education Act relies on a lot of professional opinion. If the professional does not work directly with the student or client, then the advice/plan may not suit the individual well.

HEALTH IMPACT/SAFETY

Abuse and neglect: The largest safety concern for those with disabilities is abuse and/or neglect. According to the National Association of Protection and Advocacy Systems, abuse refers "to any act or failure to act by an employee of a facility rendering care or treatment which was performed, or which was failed to be performed, knowingly, recklessly, or intentionally and which caused, or may have caused, injury to a person with disabilities."

Although abuse can occur at any treatment facility, according to the National Association of Protection and Advocacy Systems, it is found to be more prevalent in those which care for individuals with disabilities.

Abuse may be either mental or physical, and also may be neglect. The National Association of Protection and Advocacy Systems defines neglect as "a negligent act or omission by an individual responsible for providing services in a facility rendering care or treatment which caused, or may have caused, injury to an individual served or which placed an individual at risk of injury, and includes an act or omission such as the failure to carry out an appropriate individual program plan or treatment plan, failure to provide adequate nutrition, clothing, or healthcare or the failure to provide a safe environment." Neglect can be just as harmful as physical or mental abuse, especially to those who have disabilities that prevent them from taking care of themselves.

Many protection and advocacy organizations have been developed in response to a concern about abuse and neglect of those with developmental disabilities. These organizations have access to institutional records in order to investigate cases of abuse or neglect.

Advanced directives: Usually used by terminally ill patients, advanced directives (AD) are legal documents that dictate a patient's wishes about future care.. Psychiatric advanced directives (PADs) are tools for the mentally ill which dictate specific instructions or preferences for future mental-health treatment. PADs are written when a mentally ill patient is in a lucid state in preparation for a possible future acute psychiatric episode, in which the patient may not be able to speak for themselves. PADs may include instructions about hospitalization and medication use.

A PAD is a safety tool for patients with psychiatric illnesses because it allows the patient to have preemptive control of his or her medical care; it ensures that the patient is treated in the manner he or she would expect if he or she was not suffering from an acute psychiatric episode. In some respects, PADs help patients with a psychiatric illness prevent neglect or abuse during a treatment period in which they may not be lucid.

Healthcare access: According to Disability Rights Advocates (DRA), a nonprofit corporation, the delivery of healthcare services to patients with disabilities is insufficient, presenting a "crisis for people with disabilities." The DRA conducted a healthcare access survey which revealed the following results.

Mobility disabilities: Seventeen percent of patients reported difficulty getting in the main entrance of their doctor's office and 29% had difficulty accessing the waiting room. Thirty-three percent of patients with mobile disabilities experienced barriers accessing examination rooms.

Forty-three percent of patients reported difficulty using exam chairs, 69% had trouble with exam tables, 60% reported difficulty with scales, and 45% had problems with x-ray equipment such as mammography equipment.

Hearing impaired: Twenty-six percent of individuals who are deaf reported difficulty getting an interpreter for medical appointments.

Seeing impaired: A majority of patients who are blind or partially sighted did not receive provider lists (98%), educational materials (90%), or medical history forms (95%) in alternative formats (Braille, CD, large print).

Learning/cognitively disabled: Fifty nine percent of individuals with learning disabilities and 64% of individuals with cognitive disabilities reported that their providers communicate with someone else in the room rather than directly communicating with the patient. Seventy-nine percent of individuals with cognitive disabilities reported receiving too little time to communicate their symptoms to the provider and too little time to ask questions of the provider.

These inadequacies in health access for individuals with disabilities have very large impacts on their health, and in turn, their lives. As a result, the Disability Rights Advocates Corporation has started the Health Access Project, an outreach and educational campaign.

FUTURE RESEARCH OR APPLICATIONS

Health access project: This project, funded by the California Endowment, is an outreach and educational campaign conducted by Disability Rights Advocates. The project includes advocating for physical accessibility, culturally competent health resources, service delivery, and care by major health providers. Disability Rights Advocates accomplishes its mission by offering free publications about the healthcare and insurance rights and concerns of people with disabilities and serious health conditions to people with disabilities, disability advocates, lawyers, policy makers, and healthcare providers. These publications include Disability Watch, Volume 2, Through the Maze, Edition 2, Know your Rights, and A Call to Action.

AUTHOR INFORMATION

This information has been edited and peer-reviewed by contributors to the Natural Standard Research Collaboration (www.naturalstandard.com).

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