Why We Must Presume Competence
My son Nigel has long referred to his autism as his “difference.” If someone he knows is nice to him, he’ll say, “She understands my difference.”
Earlier this year I accompanied Nigel to his annual Individual Service Plan meeting with his service coordinator. We’ve been to this building several times before for other meetings, so he was quite familiar with it. The agency’s mission statement is posted on the wall inside: “…to assist adult persons with Intellectual and Developmental Disabilities and their families to create and direct their own services in an atmosphere of dignity and respect.” I love their philosophy – very person centered and supportive.
But as we sat there in the lobby waiting for the service coordinator, Nigel said, “Why can’t it say ‘Developmental Difficulties’ instead of ‘Developmental Disabilities’? It makes it sound like I can’t do anything.”
I told him he was absolutely right. It should be Developmental Difficulties.
There would be, unfortunately, the notion that if it’s just a “difficulty” fewer supports and services would need to be in place, and less funds would need to be spent. It’s so easy to lose sight of the fact that the person is doing well because of the supports and services, and if you take those away the ability to function successfully, to experience some autonomy and have a higher quality of life, is considerably decreased.
But with the supports and services in place, it’s amazing how much a person with Developmental Difficulties can achieve. Right now Nigel is starting a program called Job Discovery. It’s managed by Living Opportunities, the organization that also enables Nigel to successfully live in his own apartment due to support staff who check in with him daily (read here for more about his experience with this program).
His Job Discovery coach takes him to different businesses in the community who employ individuals with Developmental Difficulties (and anyone else, for that matter), and he meets with managers there to determine if the job would be a good fit for him and if he would enjoy it. So far he has checked out a pet store and a TV station (yes – perfect for someone interested in a film career!) and will look at a restaurant. He gets a few days to shadow someone and “test drive” the job before being hired, and will make the same wage as anyone else would in that position.
It used to be that programs like these (Job Discovery and Supported Living) did not exist for people with developmental disabilities because we assumed it would be a waste of time and funding – they could work in sheltered workshops (at much lower wages) and live in group homes (if they couldn’t live with their parents). This was a huge improvement over institutions, but it still did not presume competence.
So what do we mean by that? We believe that a person can do more than what we might otherwise assume, and we put supports in place to facilitate their success.
A person with Developmental Difficulties can, with support, have a job like anyone else in the community. He may, with varying levels of support, even live in his own apartment. He or she can – and will – experience a fuller, more satisfying life, the kind we all strive for and deserve.
[Image credit: Vantage Mobility International]