How Are Adults with Developmental Disabilities Doing? My Job Is To Ask Them.

For five months I’ve had a part-time job doing surveys for the New York State Office of Mental Retardation and Developmental Disabilities. For this job, I talk with adults who have developmental disabilities. According to the script I’ve been issued to use when setting up appointments, I’m asking about the lives and services of these adults, and stressing that all the questions and the survey itself are voluntary.

Some of the parents of these adults say they’re not interested in having their kids take our survey in any way (which to tell you the truth is kind of what I imagine myself saying if someone calls my son for this 10 or 15 years from now). We also explain that the answers will have no immediate impact on anyone’s services. The state has told me to say that they’re just trying to figure out how to deliver services better in the future. I try to fight my suspicions that these surveys are just helping the state figure out ways to cut services.

“You will meet a lot of interesting people,” my supervisor told me when I was hired.

My “self-advocate”—a lovely 22-year-old woman with high-functioning autism—and I sit down with the adults, and sometimes with the adults’ service coordinators and parents, and ask questions like, “Are you ever afraid at your day program?”; “Would you like to have a job in the community?”; “Do you feel you have the experience necessary to make big decisions in your life?” Usually the answer to that last one is a quiet “no” or a couple of wordless shakes of the head from the service coordinators or parents. Sometimes it is a clear “yes,” though.

I certainly have met a variety of interesting people. One young man (they’re called “consumers,” I’ve learned) said nothing clear but seemed awful sharp at Nintendo. Another young man laughed and laughed and delighted in answering all questions “No!” One 42-year-old woman lived in a wheelchair; her tired-looking mom had to wipe the drool from her chin. “They told me I couldn’t care for her for so long,” her mom told me. “I’ve made it my mission to prove them wrong.” We’ve had to cancel a few of the surveys because the “consumers” parents were in the hospital.

Still other consumers seemed a lot less challenged than many of the bosses I’ve had.

“Are you ever afraid when you’re out in your neighborhood?” “In the past month, have you eaten in a restaurant or coffee shop?”

“What do you mean?” one young man replied. “You mean like at a nightclub or some shit like that?”

Often we do the surveys in people’s homes or at their day programs. Since my Alex (who is autistic) is only 12, I was never up to this point sure what a day program was, but I can see now that it’s the kind of place he’ll spend his time in about a decade (unless of course New York decides that one way to better deliver services in the future is to cut the funding for day programs).

I imagine Alex’s survey. I imagine him bolting from the conference table and repeating “Watch Elmo!” Over and over while I sit there wordlessly shaking my head.

“Do you have a best friend you do things with?”

“Do you think the staff you work with have enough training to meet your needs?”

I don’t know.

Photo by gregcookland.com

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