Tuesday, August 13, 2013

Jenny Hatch

I haven't followed every twist and turn of Jenny Hatch's case, now decided in her favor, but here's the quick summary.

Hatch, a 29-year-old woman with Down syndrome, wanted to live with two friends, Kelly Morris and Jim Talbert, and work in their thrift store. Hatch's verbal skills are great and she expressed this as clearly as anyone could.

Hatch's mother, for reasons I have not quite untangled, had removed her from living with Morris and Talbert, had placed in her a group home, and was trying to impose a highly restrictive guardianship order on her daughter (including limiting with whom she could come in contact and her movements).

It's easy to side with Jenny and her friends against her mother, so let's assume for a moment that all the principles here are people of goodwill who are trying to do the right thing for Hatch. Let's even assume that Morris and Talbert are bad influences, driving a wedge between Jenny and her family, taking advantage of Jenny's naivete, or even trying to get Jenny's social security check! Let's assume the mother in fact is right that living in a group home would be the best thing for Jenny in both the short and long term.

DISCLAIMER: I BELIEVE NONE OF THESE THINGS. NOW ON WITH THE THOUGHT EXERCISE.

Imagine, especially other parents of people with Down syndrome, that this is your child, your child with whom you have played, laughed, cried, and worked worked worked through so many thousands of hours of therapy. Now she can talk. Now she can work. Now she's healthy. And now she wants to leave. And you know it's the wrong thing for her.

But our children grow up.

So much of my focus is on agency, how to help Nico in particular be his own advocate, express his desires, and be active, not passive, in his engagement with the world.

Hatch (note, not Jenny) is a high-functioning 29-year-old woman with Down syndrome. She gets to make her choices, even if they're the wrong ones.

And in this case, I and the courts both think, Hatch was right in her decision making. It's also a precedent, and a powerful one, that helps shift more agency towards people with disabilities, something both our culture and our legal system badly needs. Here's what the essay says:

Legally, Hatch’s case came down to two questions: Was she an incapacitated adult in need of a guardian, and, if so, who would best serve in that role — her mother and stepfather, or Morris and Talbert?

But for national experts on the rights of people with disabilities, several of whom testified on Hatch’s behalf, the case was about much more. It was about an individual’s right to choose how to live and the government’s progress in providing the help needed to integrate even those with the most profound needs into the community.

In the end, Newport News Circuit Court Judge David F. Pugh said he believed that Hatch, who has an IQ of about 50, needed a guardian to help her make decisions but that he had also taken into account her preferences. He designated Morris and Talbert her temporary guardians for the next year, with the goal of ultimately helping her achieve more independence.

So this is good news.

2 comments:

David Perry said...

I had to repost this, and am bringing a comment over from Jisun:

"I'm troubled by the dialogue going on around regarding the issue of competency. In your last post, you say you're uncomfortable with the idea of Saylor watching Zero Dark Thirty because you're unsure of whether or not he would be able to understand the true nature of reality vs. fantasy, but your concern seems to assume competence in those without Ds. There are plenty of adults who don't seem to successfully navigate these issues, but their competence or right to make mistakes is never questioned. I find similar issues with Hatch's story. I'm not sure what a person's IQ or "level of functioning" should have to do with their basic human right to make their own decisions.

I'm glad that her case came out in her favor, as well as the fact that it will hopefully set new precedent for others, but I do fear that as long as our discussion centers around this issue of competence, we might be playing a game of whack-a-mole. "

David Perry said...

To which I replied ...

"I agree. I'd love to be able to say that I had absolutely no qualms about Saylor going to Zero Dark Thirty, but I do. I try to be honest even when I'd rather not be. That doesn't mean I think I'm right to have qualms, just that I have them.

I actually have similar issues with people without DS going to see movies like ZD30 when they are too young. "