In what has become known as the “Justice for Jenny” decision, Jenny Hatch, a 29 year old woman with Down Syndrome, won the right to live and work where she wants. The right to direct our own lives to the maximum of our abilities is guaranteed to every citizen, every day, by laws from the Declaration of Independence to the Americans with Disabilities Act. But, because of her disability, Jenny was forced to spend the last year living in a group home, against her will, cut off from her friends and access to the life she built in her community. Why?
Jenny’s case highlights the long struggle to make our American promise of freedom and individual rights equally applicable to people with disabilities. Her triumph is a step in the right direction. To continue and complete the journey, we must remember three simple, undeniable 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 people with disabilities, the opposite is true. Their limitations are used to define who they are and what kind of 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. For Jenny, people focused on her diagnosis – arguing that she cannot make her own decisions because she has Down Syndrome without wondering if 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 to make decisions and someone who can and has made good decisions when given that support.
We all need help. Think about the way you make decisions. Don’t you get support? Do you talk to a doctor when you’re not feeling well? To an accountant at tax time? When you do, you’re showing good judgment by going to someone who understands and can explain what you don’t.
Unless you have a disability, that is. When 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 wise – because they ask for help.
In Jenny’s case, we showed that she had a history of making good decisions – like whether to have surgery and to sign a complex Power of Attorney – when she was given the support she needs. That “support” — the same information, explanation and an opportunity to understand that we all need — is called “Supported Decision Making.” It allows people like Jenny to make their own decisions, without a guardian, using family, friends and professionals to provide the support and information they need. In Jenny’s case, that means she can call upon her supporters – including elected officials, doctors, friends, family and professionals – to help her make decisions in a safe, informed, productive way.
Help Shouldn’t Hurt: When people with disabilities need help making decisions, we think they need someone else 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.
All people, need the chance to chase their dreams, rise and, yes, fall. We are who we are because of our learning and life experiences, including the mistakes we make. Because of this, any help with decision making should create the smallest possible infringement on individual rights and be tailored to each person and situation.
In Jenny’s case, that’s exactly what Judge David Pugh did. In the first decision of its kind in Virginia, he ruled that Jenny has a right to engage in Supported Decision Making to make her own decisions, that her need for support does not equal a need for a permanent guardian overseeing and making every decision in her life.
Support in all its forms (including guardianship) must focus on promoting and protecting what people can do to maximize their independence – not on what they can’t do as a reason to “protect” them from living full and meaningful lives. If we can do that, then “Justice for Jenny” will lead to Justice for All.
Date: Friday, August 30, 2013
Authors: Tina M. Campanella, CEO, Quality Trust & Jonathan Martinis, Esq, Legal Director, Quality Trust