An Enviable and Dignified Life
An “enviable life” is what the family wanted for their son, Jay, to experience. He did in many ways even though delivery systems lagged behind in providing significant supports to meet the needs of individuals with disabilities.
We decided that what we are gonna commit to for Jay was to have what we called an "enviable life." And by "enviable life," I mean a life that Kate would want to have for herself, that I would want to have for myself, a life that was characterized by dignity. And that really put us on a whole different path that enabled Jay to have a fabulous life of work at the University of Kansas as a clerical aide, participating in his community, especially in music and dance clubs, to participate in his faith community, to have friends and neighbors throughout. We started doing this with Jay 30 years ago.
And I should say, very sadly and still surreal, Jay died ten years ago, when he was at the top of his game, loving his life. And one morning, got up and was ready for breakfast, and in a nanosecond was gone. I'm so thankful that if Jay's death had to be so untimely, it wasn't at the peak of his unhappiness in the system, but it was at the peak of his happy life. But what makes me sad today is even 30 years later, I've seen so few adults with very significant support needs, such as Jay, of needing support in crossing the street and counting money and telling time, you know, and kind of all aspects of living.
It's still… it seems that services for people with the most significant needs have really lagged behind. I know in my own state right now, I'm very involved with several families who have sons or daughters with highly significant support needs, where they are getting such limited services, where their son or daughter might be in an apartment or condo, but they have a three-shift staff, that the staff turns over every time they can make a little more money because they're very underpaid.
And their lives are very routinized, and, in some ways, kind of too custodial, too looked-after rather than really being an active participant. So this is a major challenge that we have, and we have miles to go before we sleep.