What ADA has meant and what it can mean for people with mental retardation

What ADA has meant and what it can mean for people with mental retardation – Americans with Disabilities Act

Thomas Baffuto

On that sunny day in July, some 3,000 people on the White House lawn looked toward a raised platform on which, in addition to President George Bush, the First Lady and Vice President Dan Quayle, were two sign language interpreters, two men in wheelchairs, a cleric, who on close inspection was seen to be wearing a jacket with empty sleeves, and a woman. People who recognized the woman knew that in addition to being a national leader she was also the mother of a son with severe multiple physical disabilities. Gazing over the audience, those on the platform could see more wheelchairs, a number of white canes, a few crutches, and here and there a headstick.

Some of the people were wearing visible indicia identifying the nature of their respective disabilities. For reporters and many members of the public, ADA is about accommodating these people, on the job, on the bus and in other public places. Just as the wheelchair is the international symbol of access for all people affected by architectural barriers, so people in wheelchairs have come to be perceived as the standard bearers of the “disability movement.” The classic image of the movement to eliminate architectural barriers is someone, usually a man, in a wheelchair positioned near a flight of steps or some other similar obstacle, stressing a message that implies that we must adapt the environment for people in wheelchairs. What is missing is the suggestion that accommodations must also be made for people who have disabilities involving something other than motor functions–something that does not explain itself on initial acquaintance, something that makes other people uncomfortable and insecure in establishing a relationship or offering a job, something like mental retardation. For people with less visible disabilities, the needed accommodations are likewise less obvious. Attitudes and understanding are particularly critical if the specific tactics of accommodation for people with mental retardation are to succeed.

It is therefore especially significant that ADA has already meant some very important things to people recognized as mentally retarded. It has meant participation in the political process as accepted colleagues with people having traditional physical disabilities. Some examples include:

* A young man with Down syndrome testified at a Senate hearing.

* People with mental retardation marched in Washington and elsewhere; they and their families sent post cards and letters to their Congressional Representatives.

* With the success of ADA, “self advocates” from many states went to Washington, DC, rubbed shoulders with others cheering on the White House lawn, mingled with the picnic crowd, and shared the exhilaration.

It aurgurs well for the realization of the goals of ADA that the campaign of the last 8 years has exemplified in its own performance the inclusiveness of the “cross disability approach,” which is reflected in the broad definition of disability contained in the act. Particular commendation is due to those leaders of the disability movement who rely on wheelchairs and who took a leaf from their own book by turning away from traditional discriminatory attitudes toward people with mental impairments. They not only wrote a comprehensive definition of disability into the act but also exemplified this position during the campaign. The members of the community of people with physical disabilities have thus led the way in demonstrating how to accommodate people with mental retardation, head injury and chronic mental illness in a collective activity. Surely, able-bodied people can follow such an example.

In this connection, it is important to note that in the real world the distinctions between people based on whether their impairments are physical or mental is not all that clear. Indeed, many individuals have combinations of impairments. This is especially true among people (such as those with mental retardation) who have been disabled since early childhood. The majority of developmental disabilities, legally defined as severe disabilities with onset prior to age 22, originate during gestation or early childhood, and an estimated 90 percent involve the brain or spinal cord. Many “physical” disabilities such as cerebral palsy or epilepsy, as well as certain sensory disorders, are the result of a malfunction in some portion of the brain. Depending on its extent and location, a brain “injury,” or dysfunction, can produce functional impairments in the motor, sensory, communication, or cognitive areas or any combination thereof.

For the significant number of people with some degree of mental retardation who also have motor handicaps, the issue of a barrier-free environment is highly relevant. It is important that such people not be denied, on the basis of retardation, any relevant accommodation that is developed for people with physical or sensory disabilities. Lest this be regarded as an unnecessary caveat, it should be recalled that as late as the mid-1960’s there were states whose federally funded “crippled children’s services” were reserved only for those “crippled children” who were of “sound mind.” Children with intellectual limitations were denied prostheses that they needed and could have used effectively. Similarly, agencies for the blind and deaf in the past have denied their specialized services to people with sensory impairments who were also perceived as retarded. ADA should provide a bulwark against the return or perpetuation of such practices, particularly in times of retrenchment.

Some Lessons from History

In considering the potential evolution of ADA and its implementation as it will differentially affect people with mental retardation, it may be useful to consider the history of vocational rehabilitation programs in this country. This federal-state program got its impetus at the end of World War I when the effectiveness of physical medicine in restoring wounded service men was first demonstrated to the satisfaction of Congress. This was followed in 1920 by federal legislation authorizing federal grants to states for vocational training or retraining for workers who became physically handicapped as a result of injuries on the job. It was not until 1943 that the law was amended to extend its coverage to people with mental disorders. This amendment, coming as it did in the midst of World War II, reflected the effect of a tight labor market that afforded an opportunity for people with mental retardation to enter the military or to be accepted in civilian jobs in war industries. The scope of the Vocational Rehabilitation Act was enlarged by the tactic of amending a single section in the act; the amendment redefined “physical handicap” to mean “a physical or mental handicap.” This change was intended to reinterpret “physical handicap” everywhere that it appeared in a fairly lengthy act. No other structural changes were incorporated at that time to reflect the peculiar needs of the new clientele.

As long as the war economy prevailed, the vocational rehabilitation agencies were able to report statistics indicating that people with mild mental retardation were indeed being prepared for successful entry into employment. By 1950, however, it was becoming increasingly obvious that paradigms, techniques and time frames for rehabilitation that were the norm for people with physical impairments did not work well for adults with mental disorders and that, to the extent that the structure of the act was based on these pre-existing models, it limited the success of these new clients. It was not until 1954 that amendments to the basic act were made that allowed for such things as extended evaluation and longer training periods in lieu of physical therapy and rehabilitation technology. Since then, the list of rehabilitants with mental retardation has climbed to about 10 percent of the total caseload. Mental illness accounts for another 12 to 15 percent.

We may anticipate a somewhat similar development in extending the promises of ADA to all members of the heterogeneous population covered by the rubric of mental retardation, particularly in fields other than employment. It may be said that, in the struggle being waged for civil rights, participation and assimilation of people with mental retardation, we have in 1991 reached a legislative stage analogous with that reached in 1943 in the quest for rehabilitation services and jobs, that is, the stage of official recognition. The next stage will include explicit practical provisions for societal accommodations as civil rights. In the meantime, we can increase our scope by making broader application of techniques that have been tested in the area of employment.

Reasonable Accommodation in the

Workplace and Elsewhere

Because the past 10 years have seen advances in technology, including social technology, that have increased the productivity and employability of people with mental retardation who heretofore have been discounted, we have a new depth of understanding about how to provide “reasonable accommodation.” This understanding can be used to implement the employment title of ADA in nontraditional work settings, including those workplaces covered by ADA but not by Section 504. It can also be used to implement the ADA provisions covering transportation, communication systems and public accommodations as these apply specifically to people with cognitive impairments. Such accommodations include those required of small businesses in opening their places of business to customers.

Based on the employment requirements of this new law, employers may not discriminate against an individual with a disability, in hiring or promotion, if the person is otherwise qualified for the job. In addition, employers will be required to provide “reasonable accommodation” to people with disabilities when needed. “Reasonable” is defined in the law as accommodations that do not impose “undue hardship” on business operations or finances. It is this provision of “reasonable accommodation” that may cause employers the most concern, due to a number of misconceptions.

“Reasonable accommodation” can conjure up visions of structural change to the work site. Employers may think of building ramps, widening doors, etc., as reasonable accommodations. In fact, Jay Rochlin, former executive director of the President’s Committee on Employment of People with Disabilities, has stated that 92 percent of reasonable accommodations will cost a business less than $500. Individuals who support ADA believe that this is a small price to pay for human rights. While ramps and wider doors may be reasonable for many people with physical disabilities and certainly should be considered by employers, there are a number of people with mental retardation seeking employment who need less obvious and, often, even less expensive types of accommodation. “Reasonable accommodations” for people with mental retardation tend to be simpler in nature and usually reflect their slower rates of learning.

When hiring a person with mental retardation, one reasonable accommodation an employer may consider is to allow ample time to learn the job. Because of a cognitive disability, a person may have to repeat job tasks more times or may require more reminders and prompts to learn the job. Typically, all a person with mental retardation will need to learn the job is more time and adequate training opportunities. As more people with moderate, severe and profound mental retardation enter the work force, more training becomes necessary to meet established company standards. A job coach, or trainer, may be needed to accompany a person on the job during the training period. Job coaches stay for varying lengths of time depending on the employee’s needs and the complexity of job tasks. They not only train the employee on how to do the job correctly, but may also do a portion of the job while the new employee is learning, to assure that company production needs are met. Working with a supported employment program and allowing a job coach on the job site to provide individualized training free of charge to the company is certainly a good example of a reasonable accommodation under ADA. Because of cognitive limitations, people with mental retardation may need to use check lists or picture cues on the job to remind them of their job task sequence. Many people with mental retardation only need these items to be successful on a job. Employers making such ‘reasonable accommodations” find themselves with employees who not only achieve success, but who are also committed to continue succeeding. In fact, these accommodations sometimes may increase the effectiveness of other employees currently performing the same job. for example, Jack, a person with moderate mental retardation who works at a nursing home in New Jersey, was unable to remember the order of his job tasks, but his employer was unable to provide close supervision to make certain Jack completed his job in the proper order. His employer was willing to accommodate Jack by allowing him to use a checklist. Several copies of the list were made, and at the end of each work day Jack was asked to give his completed check list to his supervisor. Thanks to this minor accommodation, Jack is successfully employed and his employer gets the job done.

Another “reasonable accommodation” an employer can make for an employee with mental retardation is to restructure the job. Often, such an employee can do all but one or two of the job tasks required of a already designated position. If an employer allwed another current employee to do the task that the person with a disability could not or if some task were exchanged with another employee, the employer would be able to accommodate the mentally retarded employee. For example, a person hired by a large retail store as a processor was required to remove clothes from a box and place them on hangers. Due to her disability, she was unable to learn how to hang pants correctly. The employer was able to accommodate her by just requiring her to do shirts and sweaters and having another employee do the pants. While this is a simple example of a job restructuring, it shows a reasonable accommodation an employer can make for an employee with mental retardation.

An important accommodation during the probationary period for a retarded employee is to reserve judgment until the cause of an employee error or failure can be determined. Quite frequently, the trainee may not be quite certain what is expected of him. A classic example is that of a young man who started work on a Monday, worked diligently until Friday, picked up his pay check, and did not return the following Monday. An inquiry by his counselor revealed that no one had explained to him the difference between gross wages and take-home pay. The employee thought he was being cheated, and he “quit” by not showing up. Once identified, these kinds of misconceptions can easily be corrected.

Several other simple accommodations may be made for employees with mental retardation. These include: allowing flexible starting times to accommodate public transportation schedules; color coding time cards, work materials and dangerous areas for people who cannot read; allowing employees o sign in if they cannot learn to use time clocks’ making simple adaptations to existing equipment; or purchasing new equipment. For example, lowering or raising a work area or chair or adding shelving to a closet to organize materials can make the difference between successful and unsuccessful employment. A company, working with a supported employment provider, purchased a light weight mop and a smaller broom to enable an employee with Down syndrome and congenital heart problems to do his job with minimal strain. These small accommodations were made at a cost less than $40.

Simple jigs can also be made for employees with mental retardation to allow them to do a job successfully. A jig, usually a simple handmade device used to maintain the correct positional relationship between various parts during assembly, is a “reasonable accommodation” that an employer can allow on may job sites. Counting jigs can be made for jobs that require counting. A cardboard jig, made for a Sears employee whose job in the men’s department involves folding jeans, is used to help him make the correct fold. A plastic and wooden jig designed to hold a napiin in the appropriate position for silverware rolling at a Red Lobster Restaurant allows an employee with limited manual dexterity to complete his job. For the most part, employers have been receptive to making these accommodations because they know that they will result in well-trained, dependable employees. It makes good business sense; and, now, it is also the law.

Where Are We Headed?

Our experience in developing “reasonable accommodations” in the workplace over the past 16 years has focused largely on adaptations that are job specific and person specific, as illustrated in several of the examples cited above. Similar but sometimes more costly adaptations are now common for people with physical disabilities. While such adaptations will continue to be necessary, there are costs associated with retrofitting the workplace or making individual exceptions to company rules that can be alleviated in the long term by considering systemic changes. The most obvious of these is the construction of new barrier-free buildings, vehicles, and even whole community developments. Properly done, such buildings will obviate the need for special lifts, ramps and makeshift retrofitting of toilet stalls; just as important is the resulting social message announcing that people with disabilities are welcome everywhere and are expected to mingle with everyone. We will be moving in this direction in the next 20 years.

Here again, the changes necessary to accommodate people with cognitive limitations are more subtle, and more likely to affect personnel practices and employee training than the visible physical plant. Clearly, as in the history of rehabilitation, provisions for people with mental disabilities lag behind, yet a review of the examples given above will reveal several approaches that can be extremely effective in company practice, obviating the need for making special provisions each time an atypical employee is hired.

The ultimate goal of ADA is to create a society in which both the physical and social norms are more broadly defined, where diversity is celebrated and where stigmatizing or discomforting differences are minimized, not only in the work place but in all aspects of a person’s life.

Dr. Boggs was Co-Chairperson along with Justin Dart on the Task Force on Rights and Empowerment of People with Disabilities and is a member of the Governmental Affairs Committee of the Association for Retarded Citizens of the United States.

Mr. Baffuto is Director of Project H.I.R.E., a New Jersey statewide supported employment program for adults with developmental disabilities.

COPYRIGHT 1990 U.S. Rehabilitation Services Administration

COPYRIGHT 2004 Gale Group