My daughter is 25 years old. She works 10 hours a week and makes $9 an hour. When other parents hear about Lisa’s job, they assume that Lisa must be “higher functioning” than their adult child with disabilities. They assume that Lisa is just one of the few who has enough skills to get a job with a good hourly wage.
But the truth is, Lisa needs a lot of support at her job. And without those deliberate supports and the people who provide them, Lisa would not be successful.
Lisa has significant health issues that limit the number of hours she can work in a day. Too much work would wear her body out, and her medical issues would become worse from exhaustion. So she works only two hours a day. It took some effort to find an employer who would agree to a position that included only working two hours a day.
Lisa’s health issues also do not allow her to drive. We had to arrange for transportation to and from work each day.
Our family and Lisa’s job coach created visual schedules of her workday since Lisa has limited reading skills. The visual schedule lists the responsibilities that Lisa has each day. This schedule helps ensure that Lisa is completing each of her tasks in her 2-hour shift. The visual schedule is taped inside a cabinet door at work and on a piece of paper in her pocket, each day.
Some of Lisa’s tasks were more difficult and required more steps than she could remember from day to day. To help with multi-step tasks, we made individual picture cards of the steps required for each task. The individual picture cards are attached to a ring that is easy for Lisa to carry around. She references the cards when needed. She eventually learned to do a few of the tasks without the cards. But several of the more difficult tasks still require her to use a step-by-step card.
Lisa’s job coach assists when necessary. At first, her job coach was there each day for most of her shift. Gradually, he reduced his hours with Lisa. Now, her coach only checks in with her monthly to see if she needs any support.
Lisa has limited fine motor skills so a few of the tasks were too difficult for her. The job coach, Lisa’s employer, and our family worked together to order a few adaptive pieces of equipment that helped Lisa be independent in those tasks.
As you see, Lisa’s success on the job isn’t just a willy-nilly, spur-of-the-moment thing. It took careful planning and preparation. It takes different kinds of support from many different people. But with the right support in place, Lisa is successful in her job. Her employer and colleagues appreciate the work she contributes. And Lisa comes home with a well-earned, respectable paycheck, every two weeks.
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Just when I thought maybe the “autism thing” was calming down. And that maybe I had a few months to catch my breath before researching everything I needed to know about guardianship before my son turns 18. Wham–another big change brought us back to reality.
Support is out there for families of individuals with disabilities–you just have to ask! Take advantage of the community of others who are going through the same things as your family.