From Justice for Jenny to Justice for All: EVERYONE Has the Right to Make Choices

Author: Jonathan Martinis, Legal Director, Quality Trust for Individuals with Disabilities

About a year-and-a-half ago (time really does fly!), I had the honor of meeting, representing, and most importantly, becoming friends with Jenny Hatch. When I met her, Jenny was living in a group home, where she didn’t want to live. Each day, she went to a sheltered workshop to do work she didn’t like in a place she didn’t want to be, for less than minimum wage. She wasn’t allowed to see her closest friends. If you wanted to talk to her, you had to fill out a permission slip.

I learned that, before the group home, Jenny lived in the community, volunteered in political campaigns, and counted as her friends local, state, and national leaders. She had a real job, made real wages, and paid real taxes. She had a social life with friends she made in her community and through Facebook.

Yet, because she has Down syndrome, Jenny was forced to spend a long, lonely year of her life living and working where she didn’t want to, kept away from the people she loved most. Her cell phone was taken away. Her Facebook password was changed. She was told to “get used to” her new life.

Why? Because, like far too many older adults and people with disabilities, Jenny faced a guardianship petition seeking to take away her Right to Make Choices—the principal prerogative we all have to make our own life decisions and chart our own life course.

When I met her, the Court had already ordered her into a temporary guardianship. I gasped when I saw the order. It had four different paragraphs giving her guardians the power to decide where Jenny lived and three paragraphs giving them the power to say what medical care she’d get (even saying the guardians could decide whether or not Jenny got medical care at all, including CPR). The real kicker was this paragraph, giving the guardians the power to:

make decisions regarding visitation of individuals with [Jenny], [her] support, care,  health, safety, habilitation,  education,  therapeutic  treatment and, if not inconsistent with an order of commitment, residence.

After that, did Jenny have any rights left? Could she choose anything for herself? Did it matter that, before the order, she had always made those choices for herself?  Or that she had people in her life who could, would, and did help her make those decisions?

It didn’t. As far as the law was concerned, Jenny had ceased to exist. She was an “unperson” who suffered a “civil death.” Her guardians, for all intents and purposes, became Jenny, making decisions for her, instead of her, whether she liked it or not.

And Jenny didn’t like it one bit.

Time and again, she said, to anyone who would listen, “I don’t need a guardian. I just need a little help.” Jenny knows that she needs some help doing some things. And she had created a support system to do that: friends and professionals she chose, helping her in the way she directed. So she could make her own decisions.

But none of that mattered, because she was up against 2,000 years of history. Since Ancient Rome, society has singled out older adults and people with disabilities—people supposedly in need of “protection” from themselves or “for their own good”—and given someone else the power to make decisions for them. This process, whether called guardianship, conservatorship, commitment, or something else, has remained essentially unchanged since the Middle Ages: a Court finds a person to be “incapacitated” or unable to make his or her own decisions, and appoints someone else to make decisions for that person.

It sounds simple, right? A person can’t do something, so we appoint someone else to do it for him or her. And the law is pretty clear: guardianship is supposed to be limited. Meaning, we should only put people under guardianship who truly need it, then only give guardians the power to make the decisions the person can’t. So, if a person can’t manage money, but can manage all the other areas of his or her life, the Court should only give the guardian power to make financial decisions. After all, that’s what the person “needs,” that’s the area where he or she requires “protection.”

Except, that’s not how things have worked. Studies have shown that vast majority of guardianships are “full” or “plenary”— where, as in Jenny’s case, the guardian is given the power to make alldecisions. (1) Even worse, the number of people under guardianship has tripled since 1995. (2)

Why? Because it’s easy. Because well-meaning, but uniformed, attorneys, teachers, social workers, doctors, and other “authority figures” recommend it. Because “as long as the law permits plenary guardianship, courts will prefer to use it.” (3) Because it fits with 2,000 years of history.

It’s time to change the conversation. Time to focus on what people cando rather than what they can’t.

In Jenny’s case we did that by showing she has a history of making good decisions— like whether to have surgery and to sign a complex Power of Attorney—when she has the support she wants, the help she knows she needs. That method is called “Supported Decision-Making.” People who use Supported Decision-Making work with friends, family members, and professionals to give them the help they need and want so they can understand the situations and choices they face and make their own decisions.

Although, really, aren’t we all “people who use Supported Decision-Making?” Have you ever asked a doctor to talk to you “in plain English?” Or gone to an accountant to help with your taxes? Or asked a mechanic to explain why you need repairs?  When you do that, whenever you get help making a decision, you’re using Supported Decision-Making just like Jenny does.

And, because Jenny makes her decisions like we all do, she won the right to keep doing that. After a long trial, the Court refused to put her in a permanent, plenary guardianship and ruled that she should continue to use Supported Decision-Making. Today, Jenny exercises her Right to Make Choices by living and working where she wants and having the friends she chooses.

Jenny’s case highlights the long struggle to ensure that everyone has the Right to Make Choices. While her triumph is a step in the right direction, the journey remains long. To continue and complete it, we must remember three simple truths.

Ability Matters Most. Did you choose your home because you’re not allowed to live anywhere else? Your job because you can’t do anything else? Of course not: you made your life choices based on what you like to do and do well—the things that make you who you are.

For older adults and people with disabilities, the opposite is true. Their limitations are used to define who they are and the life they will lead: they go to “special” schools, have segregated housing and employment because “that’s where people like you” learn, live and work. That’s what happened to Jenny: people focused on her diagnosis, jumping to the conclusion that she can’t make her own decisions because she has Down syndrome without exploring whether she can make decisions even though she has Down syndrome. When people focused on who she is— her choices, strengths and history—they met the real Jenny: someone who needs support, but someone who can make her own decisions when given that support.

We All Need Help And That’s A Good Thing. When you get help making decisions, you’re smart. You’re seeking a “second opinion.” Or “considering your options.” Or “doing research.” Those are all looked at as signs of wisdom, of your ability to make your own decisions.

Unless you’re older or have a disability, that is. When older adults and people with disabilities need support to do something, too many people assume they can’t do anything. This leads to people like Jenny being judged as incapable and in need of a guardian for the same reason you were seen as wise—because they ask for help.

Help Shouldn’t Hurt: When older adults and people with disabilities need help making decisions, society thinks they need someone to decide for them. Does that make sense? You need help doing something, so from now on you’re not allowed to do it? Too much of that kind of “help” can be harmful, preventing people like Jenny from living full and free lives with access to friends, opportunities, and employment.

In fact, study after study has shown that when people have more self-determination—more control over their lives—they have a better quality of life. People with more self-determination are more independent, better employed at higher wages, more integrated into their communities, and better able to recognize and resist abuse. (4) So, as I told the Judge in Jenny’s case, if you want to “protect” her, if you want to “help” her, don’t take away her Right to Make Choices!

Because everyone deserves the opportunity to direct their own lives, chase their dreams, rise and, yes, fall. We are who we are because of our learning and life experiences, including the mistakes we make. Often because of the mistakes we make. “Protecting” people by taking away their Right to Make Choices, because they may make a bad choice, denies them the chance to learn and grow, to become better, wiser, more well-rounded adults.

Jenny won her Right to Make Choices. But there are millions of “Jennys” out there, right now. People who are facing or in overbroad or undue guardianships. People who have lost or are at risk of losing their Right to Make Choices.

The National Resource Center for Supported Decision-Making exists for them, for families who are being told to get guardianship over them, for professionals who think the only way to serve them is to recommend guardianship. You’ll find material here that will challenge long-held beliefs about older adults, people with disabilities, and guardianship.

You’ll find resources, educational material, and tools to help you learn about, advance, and protect the Right to Make Choices. Use them. Join Supported Decision-Making Interactive! and ask questions about them.

If you do that, Justice for Jenny can become Justice for All.