|History and Values Since 1900
The beginning of the 20th Century marked a major step in the history of medicine and the status of persons with disabilities. Plagues were mostly gone thanks to better public health, improved hygiene and basic preventive medical care. However, there were still influenza epidemics, infant mortality was high, deadly infections often accompanies surgery, and many diseases were still untreatable. But many people were surviving who once would have died.
Throughout history, nations have honored injured soldiers, trying to make up for their personal losses in the defense of their country. World War I was the first time a large proportion of battle victims survived - often with visible or invisible scars. Disabilities included the amputations pictured above, reduced lung capacity from being gassed, “shell shock,” head injuries, and the myriad of other reminders of the horrors of war.
Men and women were returning to the communities with physical and mental limitations that restricted their ability to work. “Affirmative Action” began with preferences for these veterans. In 1918, Congress passed a Soldiers’ Rehabilitation Act providing vocational retraining for veterans with physical impairments that limited their career choices. This was a way to “make up” for these unintended consequences.
These are residents in an institution for the “feeble minded” in a mid-western state. Large institutions like this existed in every state to care for persons with mental retardation or mental illness. The institutions were usually in rural areas and had large campuses, similar to a university campus but even more comprehensive.
By this time, treatment for mental illness had become activity based - “Idle hands are the Devil’s workshop.” Institutions had their own farms, dairies, wood and mental working shops, police and fire departments, and housing for staff. Inmates did the vast work needed to keep the institution running, including cooking custodial work, and even personal services for resident staff.
The general philosophy of the first half of the century was to provide adequate, if primitive, care for people with mental disabilities. Others made decisions for them and everyone assumed”inmates”/patients needed life long care. The inmates got uniforms and work assignments to provide them an orderly life. This segregation from the “normal community” was rationalized on the basis of safety for the residents. They were being cared for where they were “comfortable.”
According to typical promotional pamphlets for institutions, patients are getting “individualized care,” “close medical supervision,” and a “therapeutic environment.” Despite the good intentions of society, the reality of institutional care was very bleak. The back wars of institutions were often holding areas for a person’s entire future. By its very nature, this kind of segregation led to inadequate care, poor facilities, and loss of dignity. There was no chance for independence or productivity.
During the mid-1960's a radical “deinstitutionalization revolution” began. It was supposed to end the often cruel and inadequate care of institutions. The idea was that individuals would live in their communities and have a “normalized” life. Group homes residential care facilities, and rooming houses were developed, where persons with similar disabilities could live together. The problem was that, although the residents were now on their neighborhood communities, there were no supports to help them by part of the communities. The new living facilities, in effect, became “mini-institutions.”
Until persons with significant disabilities could get supports for meaningful employment and community participation, they would still be an invisible part of society. Integration and inclusion were still dreams, and mini-institutions were not the way to realize them.
During the 1970's people with disabilities and their friends and families started a “Civil Rights for People with Disabilities” movement, also called the Disability Rights Movement. These activists asked for “community inclusion” and “consumer choice” for people with disabilities. They argued that people with disabilities should be just as close to their neighbors and community as anyone else. They also said the person with a disability (the consumer) should be the person who decides what services she wants to help her become part of that community. The person with the disability should be the decision-maker.
This new philosophy was the beginning of person centered values, and it turned out to have some unexpected benefits. People who got to make choices and become parts of their community often got better jobs and ended up needing FEWER supports than before. The were happier, more active, and had more friends to help them out. There were real benefits for “doing the right thing.”
As the disability rights movement grew, it’s members started demanding more. They insisted that cities and towns remove physical barriers that made public places “inaccessible” for people with disabilities. They insisted that lawmakers pass laws to remove legal barriers that let employers discriminate against people with disabilities through low wages or not hiring them. Some activists insisted that the sheltered workshops, mini-institutions, and nursing homes should shut down so people in them could live and work in “normal” ways.
The disability rights movement changed the system of rehabilitation care. A new type of staff worker appeared - the “advocate” - to help people with disabilities understand their choices and responsibilities. Disability rights activists created community-based “Independent Living Centers” - places in the community where people with disabilities could get help from advocates and peer counselors (other people with disabilities) about how to live on their own. People began moving out of the mini-institutions and into regular apartments and houses. Vocational rehabilitation staff focused more on “integrated” jobs where someone with a disability worked with “non-disabled” coworkers instead of sheltered workshop situations, and where they earned at least minimum wage.
The care system is still changing towards being a consumer controlled system. Staff members, advocated disability rights activists, and people with disabilities are all working to remove physical and “attitudinal” barriers that stand in the way.; Gradually they are spreading the idea of freedom for all people to take part in life’s activities, no matter what disability they have and no matter how severe. After all, they point out, we all have accidents, we all grow old - even the “non-disabled” are only temporarily able.
History of Legislation
As people's values towards persons with disabilities changed, U.S. Federal laws were
changing too. Originally, the American ideal of strong, independent, productive citizens meant everyone was expected to take care of themselves and there was no federal support for people with disabilities. Private agencies helped as much as they could, but it was not governments' place to intrude into private lives that way, and especially not it's place to find jobs for the unemployable. Except for wounded veterans. If a man was injured protecting his country, the government owed that man for his sacrifice.
Before about 1900, this was not much of a burden because almost all wounded soldiers died. You may have seen pictures from the Civil War of doctors operating in open tents, wearing only aprons over their regular clothes no gloves or masks. The picture below shows wounded soldiers outside a "hospital"/barn. Nobody knew much about germs, infection, and sterilization back then. Soldiers were lucky if the doctor wiped off his scalpel with a rag between patients. More than 80 percent of the wounded soldiers died. In that kind of war, there is no such thing as a minor wound any cut, illness, or bullet wound could kill you.
All that changed in WW I a war bigger than any ever fought before. With millions of men fighting, there were far more wounded soldiers than before, and doctors now knew how to keep more of them alive. After the war, U.S. towns and cities suddenly had lots of physically disabled veterans wandering around without jobs. American values wouldn't stand for the European approach building large institutions where the veterans and their families could live for free. Instead, Congress helped them get back to work by passing the Soldiers Rehabilitation Act of 1918. This law provided retraining for wounded veterans so they could become productive citizens again. A farmer who lost a leg fighting in France might find himself trained as an accountant. A factory worker whose lungs were burned by mustard (chlorine) gas in Belgium might find himself taking courses to be a pharmacist.
The program was so popular with the voters that two years later Congress expanded it to include civilians. Now anyone with a serious physical disability could get guidance and training for a new job, and states began creating Vocational Rehabilitation Agencies to run the services.
These laws did much more than help people it was the first time the government had assumed responsibility for helping people in need. That paved the way for the all social services we have today Social Security, Medicaid, welfare, veterans' benefits, federally funded programs in schools, and even civil rights legislation. The history of these types of programs begins with the Soldiers Rehabilitation Act in 1918.
But the government was not just giving away money. In America, people had to earn their own way, and rehabilitation services were only for people with physical disabilities who really wanted to work.
Vocational rehabilitation workers had a range of standard, "acceptable" jobs for which they would train people, and they carefully selected only people whom they thought would succeed. People with the "right kind" of disabilities could get training for different careers, and there was only one list of careers from which they could choose, including chair caning like the gentlemen above are doing. Everything went by the numbers, and it was only for people with physical disabilities. People with problems like depression, mental retardation, "epilepsy", or cerebral palsy continued to live isolated from their communities, depending on family and friends to survive.
During the Great Depression of the 1930's, Vocational Rehabilitation services expanded in a minor but important way. A law called the Randolph Sheppard Act gave persons with severe vision problems the priority to operate vending booths (snacks, cigarettes, etc.) on federal property. This meant that people with vision problems got chosen over anyone else who applied to run the booths in places like post offices, government buildings, and federal parks. Even though this was a limited opportunity for people with visual disabilities, it was the government's first attempt at "affirmative action" special privileges given as compensation and help for people who have been deprived in other ways. Today's affirmative action laws for minorities are based on ideas first used in the Randolph Sheppard Act.
During WW II the opportunities for people with disabilities expanded again. When millions of men (and some women) went off to war, they left behind jobs that still needed to be done. At the time, most women in the U.S. were housewives. During the war they left their homes to fill skilled jobs in factories and offices. But many unskilled jobs were still empty building maintenance, food preparation, transportation jobs and other jobs that only took basic abilities. The Rehabilitation Act of 1943 helped fill these jobs by expanding eligibility to persons with mental disorders mental illness and mental retardation. This doubled the number of participants overnight.
It also changed the type of services the government provided for vocational rehabilitation. In addition to training and guidance, VR started paying for certain types of treatments to correct disabilities. People who needed cataracts surgery on their eyes, for example, or orthopedic (bone) surgery to correct deformations in their limbs, or physical therapy to restore movement to damaged limbs, or even money to buy hearing aids and wheelchairs. Although some people had health insurance to pay for things like this, many people did not and at the time there was no Medicare or Medicaid yet. VR agencies stepped in as a back up resource to cover medical bills as long the medical problems related to employment.
Like World War I, the end of World War II changed VR when it flooded the nation with wounded veterans. More progress in medicine meant not only that more people survived the war, but also they survived with greater variety of disabilities. New varieties meant new VR service needs. In addition to veterans with loss of limbs, vision or hearing, there were now people in wheelchairs, people with head injuries, people with epilepsy, and people with seizure disorders, among others. At the same time, the booming economy after the war created thousands of new kinds of jobs. Suddenly VR staff needed to understand both the new job possibilities and the new kinds of disabilities.
The Rehabilitation Act of 1954 started federal funding of research on vocational rehabilitation and funding of advanced college training programs in rehabilitation counseling. Rehabilitation counselors became trained professionals, and research offices sprang up. This eventually led to of the National Institute on Disability and Rehabilitation Research (NIDRR) in the U.S. Department of Education.
By the 1950's, people admired vocational rehabilitation as an example of what federal social programs should be. VR had a clear definition of who could receive services people with documented mental and physical disabilities that kept them from working and for whom VR services would allow them to work. The program also had a clear definition of success (employment of "rehabilitants") so administrators could keep track of staff efficiency. VR administrators could document success by calculating the cost of services, wages earned by rehabilitants, and taxes paid back into the U.S. Government. Professionals from VR began transferring into leadership positions in other federal and state programs to help them.
History of Legislation Since 1960
In a sense, VR became too successful for its own good. In the 1960's, President Johnson was running a “War on Poverty,” and he used the Rehabilitation Act of 1968 to harness the VR system in the fight against all types of problems faced by “the disadvantaged.” Suddenly the term “disability” included drug abuse, alcoholism, repeated criminal convictions, and many non-medical conditions. Vocational rehabilitation programs opened offices in prisons, welfare offices, and urban neighborhood storefronts. VR counselors found themselves working with anyone needing any kine of help to “level the playing field” in looking for a job.
This created hug problems for the system of state and federal programs. The number of VR staff and VR offices quickly doubled. To handle the task, administrators created generic services (“jobs programs”) that were very good at preparing lots of people for a very limited set of jobs. These services helped more people than ever before, but in more limited ways. VR counselors had to abandon two main principles that had previously guided them - the sue of individualized programs and the flexibility of those programs to meet a person’s specific needs. VR became more like a mass production system, which sometimes made people with disabilities feel like parts of a huge machine.
This new system worked well, but there were also problems. The streamlined version of VR found many jobs for people with prison records, in the welfare system, or with “mild” disabilities. However, people with severe disabilities - things like severe mental retardation, quadriplegia, or cerebral palsy - could not get the specialized VR services they often needed. With the huge flow of people, people with severe disabilities often got lost in the shuffle.
The Rehabilitation Act of 1973 corrected some of these problems and started the modern age of vocational rehabilitation. With this law, Congress told VR staff to go back to the way they used to operate. Other departments of government took over vocational services for people with prison records or in the welfare system, reducing the workload for VR. VR returned to mostly serving people with severe physical or mental disabilities that kept them from working. Vocational rehabilitation counselors created Individualized Written Rehabilitation Programs (IWRPs) for each person. In addition, the person with a disability was more involved in creating that plan and selecting the services included. The 1973 Rehabilitation Act used specific definitions of “severe” disabilities, and for the first time gave people with disabilities the right to appeal decisions about their services.
Since 1973, Congress has updated this new “Rehab Act” about every five years, but kept the central ideas. Most of the updates are better definitions of issues - what a “severe disability” is, what kinds of services VR is authorized to provide, what “independent living” means, the kind of “due process” and legal rights available to people with disabilities, and what “supported employment” means. Using this language, the Rehab Act defined a new belief in equal rights for people with disabilities. This worked so well that other laws have copied the language and beliefs of the Rehab Act. These include the Individuals with Disabilities Education Act (IDEA) of 1974 and the Americans with Disabilities Act of 1990 (ADA). The Rehabilitation Services Agency (RSA) is the part of the Federal Government that carries out the vocational rehabilitation and independent living programs defined by the Rehab Act.
ADA: The Civil Rights Act for People with Disabilities
When Congress was considering the ADA law in 1990, people with disabilities rallied in support of it. The implementation of person centered values, through laws and through the VR system, had created a new feeling of political power among people with disabilities and they “advocated,” or spoke up, for themselves. On the day President George Bush signed the ADA into law, people with disabilities marched in the streets of Washington to celebrate. They called the ADA “The Civil Rights Act for Persons with Disabilities,” because it set in law the new philosophy that they had the same rights as everyone else. Under ADA, all public places have to provide “disabled access.” So do all programs funded by the Federal Government. When they interview people for a job, all employers have to treat people with disabilities equal to any other applicants - the employers have to look only at qualifications for the job, not at disabilities. Under the ADA, people with disabilities can expect the freedom to have “regular” jobs, “regular” education, and “regular” lives in their communities. If they do not get those freedoms, they can sue in court under the ADA law.
Together, the Rehabilitation Act, IDEA, and the ADA constantly re-enforce the ideals of person centered values. IDEA helps people with disabilities get the same basic education as everyone else. The Rehabilitation Act helps people with disabilities prepare for and find career jobs. The ADA makes sure they have a fair chance of getting those jobs if they are qualified. Because Congress periodically revises and adjusts these laws, you can thing of them as “living documents” that adapt to different situations. There are still controversies and debates about, for example, who monitors the use of taxpayer dollars spent on rehabilitation. But two principles of the rehabilitation system do not chant - 1) employment and productivity lead to independence and 2) independent living is the right of all American citizens, with and without disabilities.
Under these principles and person centered values, the role of rehabilitation staff changed. From the 1920's through the 1960's, they were often thought of as gatekeepers who chose only certain kinds of people to receive services - only the people they were sure would be successful. The older, “medical model” of disability service sought to cure and protect persons with disabilities, often by confining them in “safe” institutions and sheltered workshops. Under the medical model, VR service providers gave people with disabilities jobs they were “fit” for. The new “person centered” model of service seeks to help all persons with disabilities live as equal members of their communities, with “normal” jobs, friends, homes, and families. Under person centered values, VR service providers find jobs for people with disabilities jobs that they find fulfilling. Today staff members act more like consultants for “clients” by helping the clients choose their own careers and supports. This is the new “consumer controlled” system of Rehabilitation Services.
In the “Findings, Purpose, and Policy” section on the public VR program, the Rehab Act says:
“Disability is a natural part of human experience and in no way diminishes the right of individuals to live independently, enjoy self-determination, make choices contribute to society, pursue meaningful careers, and enjoy self-determination, make choices, contribute to society, pursue meaningful careers, and enjoy full inclusion and integration in the economic, political, social, cultural, and educational mainstream of American society.”
The Act is intended
“to empower individuals with disabilities to maximize employment, economic self-sufficiency, independence and inclusion and integration into society. . .” and provide “respect for individual dignity, personal responsibility, self-determination, and pursuit of meaningful careers, based on informed choices. . . inclusion, integration, and full participation of the individuals.