Mark Hassemer

Mark Hassemer

Dear Friends of ACT:

My eyes were opened last week to an issue I’d never considered before: the potential harms of guardianship.

Here’s what I didn’t know:

  1. Guardianship is almost always plenary or total (But it doesn’t need to be.)
  2. The number of adults in guardianship today has tripled from 500,000 in 1995.
  3. Studies show that people who exercise little or no self-determination are injured by this prohibition, developmentally, physically, and psychologically. People who determine for themselves what their lives will be like are healthier, more independent and well-adjusted, and better able to recognize and resist abuse.

These revelations came at a presentation I attended last week by attorney Jonathan Martinis on Supported Decision-Making (SDM).

Martinis says SDM is an alternative to guardianship through which people with disabilities use friends, family members, and professionals to help them understand the situations and choices they face, so they may make their own decisions without the “need” for a guardian.

He’s calling for the use of SDM as an alternative to guardianship, which needlessly strips people with disabilities of their rights. It’s a paradigm, he says, not a process. It can and should change.

You can find more information about SDM at: www.supporteddecisionmaking.org.

We try to do what we say here when it comes to choice. We do person-centered planning with every individual who receives services at ACT. We ask each person what she or he prefers, wants, and aspires to. But in all my years in this field, I’ve never heard the phrase “supported decision-making.”

The idea rests on an understanding that everyone needs supports. I don’t make decisions about retirement plans without the support of my financial adviser. I get a diagnosis and advice from my doctor before medical treatment. I talk to my mechanic and get her advice on repairs to my car.

We ALL need supports. Although it may not seem like it, none of us makes it in life alone. The supports that a particular person with a disability receives may simply be different from the ones you receive.

Your life should not be dictated and controlled by a guardian simply because you need support.

Instead, people with disabilities can direct their own lives and regain access to their rights through SDM.

This idea is beautifully illustrated by the story of 29-year old Jenny Hatch, a Virginia woman with Down syndrome. https://www.washingtonpost.com/local/woman-with-down-syndrome-prevails-over-parents-in-guardianship-case/2013/08/02/4aec4692-fae3-11e2-9bde-7ddaa186b751_story.html

Jenny knew by direct experience what I just came to know, what Rep. Claude Pepper, Chairman of the House Select Committee on Aging said in his prepared remarks at a Briefing on Abuses in Guardianship (Sept. 25, 1987): “The typical ward has fewer rights than the typical convicted felon. They can no longer receive money or pay their bills. They cannot marry or divorce. By appointing a guardian, the court entrusts to someone else the power to choose where they will live, what medical treatment they will get and, in rare cases, when they will die. It is, in one short sentence, the most punitive civil penalty that can be levied against an American citizen, with the exception, of course, of the death penalty.”

Let that sink in.

Because we are helpers in a helping profession, and because we’ve seen the effects of isolation, abuse, and neglect on people with disabilities, we’re inclined toward being protective.

What I’ve come to see, what’s causing me to genuinely reconsider how we serve those in our care, is the harm of being over-protective.

There is dignity in risk. Taking a chance and pursuing what you desire elevates everyone. Even if we choose poorly. Even if we fail.

It could be that convenience is driving the rapid escalation of guardianship. It’s messier, more complicated, and time-consuming to ask a person what he or she wants and then do it. He might get injured on the job. She might seek a relationship with someone we don’t like. She might spend a portion of her income on a “frivolous” hobby. He might buy a six-pack of beer.

In some circumstances, Martinis says guardianship may be needed. For instance, guardianship could be appropriate in emergency situations when someone is incapacitated and cannot give consent; or to support people who face critical decisions and have no ability to make them or interest in doing so, or need immediate protection from exploitation or abuse.

If you’re not completely sold on this notion of SDM, before considering guardianship, at least ask, “What else can we try?”

Life, liberty, and the pursuit of happiness are the inalienable rights of all human persons, says the Declaration of Independence. These rights should not be snatched away reflexively simply for the convenience of care-givers or the fear that something bad might happen if one chooses poorly.

That’s what happened to Jenny Hatch. After she was hit by a car while riding her bike, her guardians sent her to live in a group home. She hated it. She wanted to go back and live with her two friends. Her friends helped her hire a lawyer and fight the guardianship petition. They sat down with her and explained her legal situation. They helped her understand her choices. And then they listened and understood when she expressed for herself what she wanted.

Although the Court found she needed a guardian, the need is temporary. And the Court considered Jenny’s preferences. Her friends became her guardians.

Martinis called that decision “the rock that starts the avalanche.”

I started feeling the rumble of that avalanche last week. And I’m thinking about what we can do at ACT to implement SDM and restore access to the right of self-determination inherent in everyone we serve.

Until next month,

Mark