Employment first! That’s the rallying cry of many organizations working to help people who have intellectual disabilities plan for life after school. It’s usually defined as work in a non-segregated workplace offering competitive wages. And for many people who have disabilities, it’s a reasonable and preferred choice. But it isn’t for everyone.
Part of the problem is that we’re a society that tends to swing to extremes. At one time, the great majority of children and adults who had significant intellectual disabilities lived in hospitals and institutions. These were often notoriously inadequate, lonely places, and abuse and neglect was widespread.
Things improved as people started caring for their own children at home and in the community. Since 1975, federal law requires that children be educated in the least restrictive environment, meaning that they are included in regular school classrooms and extracurricular activities as much as possible, with the help of needed supplementary aids and services.
But children who have severe intellectual disabilities are still frequently placed in classrooms consisting of other children who have a variety of severe disabilities, including medically fragile children, children who have severe autism, and a variety of other mental and developmental disabilities. These classrooms are usually run by a teacher and several aides.
The next step for people can often be sheltered workshops where people who have disabilities work in a segregated setting, sometimes doing piecework for very low wages. Many people spend their days in these settings for their entire adult lives.
Critics complain that people who work in sheltered workshops are often bored, and periodically left idle between contracts. People working in these settings might never learn the skills needed for jobs in the competitive workplace.
Today, some disability advocates and other organizations serving people who have disabilities increasingly insist that all people, even those who have severe disabilities, should join the competitive workplace, preferably working full-time alongside their non-disabled peers, earning regular wages.
According to the U.S. Equal Employment Opportunity Commission: “Persons with intellectual disabilities successfully perform a wide range of jobs, and can be dependable workers. The types of jobs people with intellectual disabilities are able to perform will depend on individual strengths and interests. Examples include: animal caretakers, laundry workers, building maintenance workers, library assistants, data entry clerks, mail clerks, store clerks, messengers, cooks, printers, assemblers, factory workers, photocopy operators, grocery clerks, sales personnel, hospital attendants, housekeepers, statement clerks, automobile detail workers, and clerical aides.”
All limitations and strengths must be taken into account when deciding upon which jobs might realistically be successfully performed with any needed support.
It sounds reasonable. The problem is that traditional employment isn’t the answer for everyone. It’s certainly not for my 19-year-old son Jalen, for instance. Jalen has severe intellectual disabilities. In the not-so-distant past, he would be labeled severely retarded. Like many people who have severe intellectual disabilities, he also has other co-occurring disabilities. He reads at a kindergarten level, and his interests and abilities are much like those of a two- to six-year-old.
Many social situations make him extremely anxious and he’s especially volatile when children are whining and screaming, which sets off PTSD-like reactions in him. Even certain words can trigger him to strike out despite years of behavior training. You see, in his self-contained school classroom there were many instances of children having melt-downs and sometimes physically attacking classmates and teachers. A sheltered workshop environment would be extremely upsetting for him.
He has a very small vocabulary, extremely limited conversational ability, and it’s hard for people to understand what he says. In turn, he has trouble understanding everyday concepts that are vital to people in most workplaces. Except for sports, his interests are those of a three-year-old, and his functioning ability in most areas (self-help, etc.) is about the same.
He is emphatically not interested in the kinds of work deemed “appropriate” for him. He does not like repetitive work, and wiping tables and cleaning floors does not give him a sense of pride. In fact, he is likely to strongly refuse to do more than just a small amount of such work, not matter what the reinforcement includes. He also doesn’t understand the role money plays in our society. We are his legal guardians, and he will need legal guardians throughout his life.
He does like to go to basketball, football, and other sporting events in the community, especially because he loves team mascots. Right now, the best “job” for him would probably involve him helping out team members and mascots in any way that he can for a few hours a week.
Now that would be self-determination in action for someone like him, even though it’s far from competitively waged employment. He also likes artwork, but his creations (mostly of fireworks), are not likely to sell much in the marketplace.
In another example, my friend’s 27-year-old adult son who has a mild intellectual disability and autism worked in a bakery in the community for years. He takes public transportation independently. He cooks for himself and lives in a house with the help of a hired roommate. Right now, he’s between jobs and he’s never held a full-time job.
It’s important that people with intellectual disabilities have the opportunity to pursue meaningful job training and work. The benefits include income, self-esteem and social opportunities. But for some people the mix of self-determination, individual skill levels, strengths and limitations make traditional employment undesirable. Let’s not limit self-determination by being rigidly determined to push everyone into the workplace whether it’s appropriate or not.