The case of Jenny Hatch raises questions for people with developmental disabilities, parents, advocates and officials that we all tend to shy away from.

They all boil down to a simple question without any simple answers. Who should make decisions for adults deemed by others to be not fully capable of making decisions for themselves?

Jenny Hatch is a 29-year-old Virginia woman with Down Syndrome who earlier this month won a court ruling that allowed her to pick a different living arrangement from the ones her parents wanted for her.

http://www.specialedpost.com/2013/07/23/woman-with-down-syndrome-fights-for-own-legal-control

Last year, Hatch, who had lived in several groups homes where she had been placed by her mother and stepfather, her legal guardians, took a stand that she didn’t want to continue living in those kinds of arrangements. Friends, including a couple that owned the thrift shop where she worked, helped her mount that challenge legally. On August 3 the court ruled that while Hatch was still determined to be in need of guardianship, she could choose who that would be. The judge awarded a one year guardianship to the friends and it was understood that Hatch would be living with them.

Hatch’s mother and step father contended that, among other cognitive and behavioral capacities, she was not able to make accurate judgments about other people’s motivations and trustworthiness and that this put her at risk in less controlled situations.

These are issues faced to greater and lesser degrees by everyone who has the responsibility for others and for everyone who wants the right to be their own person despite the risks involved.

You can’t keep people from risks. Those are just part of the living experience. Parents face this when their children grow up. Children face it when their parents get older.

It’s a constant juggle between what’s safe and what’s desirable. Unfortunately, those are all too often at odds. Why? I believe, in part, it’s because we all rebel against being sequestered from the main flow of living; even temporarily and even if it’s only by perception.

In Hatch’s case, it was the group home environment that rankled. Here was a place that she admittedly didn’t mind much in the various particulars. She liked doing most of what the group did. And she wasn’t at serious odds with housemates. But still, it was an unnatural home. One not of her choosing. It was a place where she had been “put” by others. To complicate matters it seems that the relationship between her and her parents, including her biological father, was complicated, as they often are.

On the other side of the situation are parents and guardians, as well as public officials and the law, that have the responsibility for someone else’s safety and wellbeing. That responsibility can be daunting. The more vulnerable the charge the more tremendous that responsibility.

Often times those vulnerabilities are hard to gauge, especially over shorter periods of time, which is often the case when an outside person is asked to step into a situation temporarily to make a determination. Also, if something bad does happen the public might demand someone or ones be held accountable. That’s true no matter what the complexities of the relationships are or to what degree the individual should be allowed to make their own decisions. The public is not always right in these demands. In fact, all too often these situations result in knee jerk public, and subsequently, official reactions that can have very damaging consequences. But right or wrong these public accountings are real, as are the often anguishing private emotions involved, which take their own toll on all those directly involved.

As I said early on, this is not a challenge specific to the disability community. Although the various subcommunities, if you will, that make up the broader human community operate within themselves much of the time, their issues are rarely unique. That’s a topic for another blog.

For now, as in the broad community in which we are all a part, there are no easy answers to the question of when and where liberty should take precedence over safety or the other way around. This is one lesson from Jenny Hatch’s story. We should resist the temptation to say that every situation requires a cookie cutter solution. For Hatch this may work out to be the best thing. I sincerely hope it does. For someone else it might end in failure or, even worse, tragedy.

It’s wrong to say that every person with a developmental disability should have to live in facility, with programs and rules governing everything from food to travel to bedtimes to personal habits because somewhere some other person with a developmental disability ran into problems when all those things weren’t “secured.” Many say it’s wrong that any have to live that way. That’s still an open question at this point.

In the meantime though I believe it is also wrong to condemn families, other caretakers and agency officials who are most often trying to make the best decisions they can in often ambiguous circumstances. I realize not everyone in these situations is trying to do the best thing. But most are.

And there is still the overriding issue of if it is ever necessary to impose our decisions on others and, if so, when.

As uncomfortable, and even unresolvable in any universal sense, these natural tensions between safety and liberty are, we need to keep talking about them. They are at the heart of many policy decisions about how best to support people with developmental disabilities without subverting their individual rights.

While we do so let’s keep in mind that it is individual lives we’re talking about. People and their relationships, their desires and their realities. All the messiness and complexities that go with all our lives. And, as such, they will best be understood and resolved individually. All works in progress, like Jenny Hatch’s.

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Disability in Focus