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Eric’s story

BACKGROUND ON MY SON:

Diagnosed with Down’s Syndrome at three months of age (with the added anomaly of that being a complicated variant from ‘normal’ Down’s called Mosaicism), and with Bi-polar Disorder when he was 22, Eric has lived in a group home program since he was 23. Initially he lived in a home with three other young men. (Prior to such a setting, Eric had been in an albeit ‘progressive’ institutional setting since he was 15.) At age 34 he had a long, severe, and unresponsive manic episode which required three in-patient hospitalizations, a move within the same residential program to an apartment where he was the only resident, and a change in job settings.

For 11 years Eric had worked in community based jobs. He’d been part of a cleaning service working at Stein-Haskell Labs, had a brief stint at Blockbuster, then a longer tenure with WAWA doing refrigerator product shelving and outside clean up, and then a job bagging at ACME. When he ran away from ACME on a cold winter day after a customer said, “I don’t want someone like that bagging my groceries” he lost that job. His work was acceptable, he was a favorite among his co-workers, but his poor judgment in running away rather than discussing this distressing slight from the customer was an obvious sign that he needed a more sheltered environment in which to work. [He literally rang someone’s doorbell and said he needed help, whereupon the State Police picked him up, much to the relief of the ACME management and his program staff.] At ACME and each of his previous “community-based” employments, his tenure eventually came undone when teasing customers or co-workers so stressed him that he could not function adequately in his positions.

EXPERIENCE AT SERVICE SOURCE, FORMERLY OCI:

Given that when he started at Service Source his Bi-Polar condition was still not stabilized even after ten months of concerted effort, he began with a three-month probationary period. By virtue of hard work and advocacy we were able to get him expert help, and his bi-polar was stabilized on a new regimen of medication. A behavioral psychologist was available to consult both with the sheltered workshop and his residential program. This process, in conjunction with very sensitive and knowledgeable input from the OCI staff, resulted in a successful transition and stable employment there for the past 8 years.

Initially I felt a keen sense of disappointment that Eric was in a sheltered setting, especially after 11 years working in the community, despite the periodic job changes and the high stress these caused him. Within about four months at Service Source, I came to realize that although Eric functions wonderfully in social situations and appears capable of community work to the untrained eye, a sheltered workshop was actually the best fit for him, and working in the community with his hidden vulnerabilities put him at great risk. He is now marking almost 8 solid years of employment there, with a resulting sustained improvement in his own confidence and self-respect.

THE VITAL IMPORTANCE OF HAVING MULTIPLE EMPLOYMENT OPTIONS AVAILABLE FOR INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES:

Eric is not alone in needing a sheltered workshop job environment. The concept of finding community employment for all disabled individuals is good in the abstract – and the best alternative for many developmentally challenged adults, but not for all by far. There are many individuals for whom community work is beyond their functioning level, or puts them at unwarranted risk given their complex combination of conditions. The job recruitment staff at Service Source has worked with Eric to attempt to secure community employment for him. He now works two days a week at what is in essence another sheltered setting where adult volunteers work with disabled adults to make dog biscuits, on the other three days he’s at Service Source.

IMPLICATIONS OF NOT HAVING THE OPTION OF A SHELTERED WORKSHOP:

All human beings want to be contributing members of society. All humans deserve the sense of accomplishment that comes from managing a job and going to work. Were Eric not to have the option of working at Service Source, I can only envision deterioration in his functioning, his sense of self, and his mood. He’d actually be at risk for a significant depressive episode. Work provides him a consistent schedule, thus structure which is critical to his functioning. Since he is currently only suited for a sheltered job not having this option would mean he’d lose opportunity for regular social contact, another crucial human need. The specter of physical and mental health issues that arise when individuals are under-stimulated and inactive also rears its head. Finally I am aware by virtue of the experience of other parents whose sons and daughters have lost jobs that finding acceptable and appropriately stimulating activities to fill their days is exceedingly difficult.

THREE WORKLIFE PROFILES:

As I conceptualize it there are three likely categories to consider when thinking about employment for disabled adults.
• Individuals whose functioning allows them to work in the community for their entire working life.
• Individuals who work in the community for part of their work life, but need a sheltered workshop either to help them transition to a community job or, as in my son’s case, after working in the community is no longer a viable option.
• Individuals whose exceptionalities and limited skills require a sheltered environment for their entire working life.

Permanent link to this article: http://www.familiesspeakingup.com/2012/08/01/erics-story/

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