Thursday, May 26th 2016
Hello everyone and welcome back to the blog this week!
A few weeks ago we wrote and published a blog titled Supported Decision Making: A Discussion. In that blog, we focused on Supported Decision Making (SDM) as a newly emerging legal method of ensuring that adults with disabilities have the supports, information and autonomy that they need to make successful decisions about their own lives and futures.
Today, we would like to revisit that topic by taking a closer look at the role that self-advocate Jenny Hatch – an adult with Down syndrome – and the advocacy organization Quality Trust for Individuals with Disabilities played in bringing SDM to the forefront of the disability community. By successfully challenging the existing legal norms in regards to adult guardianship and decision-making autonomy for individuals with disabilities Jenny, with the support of her legal team (Quality Trust as lead council) and other advocates, won the right to make decisions for herself, using Supported Decision Making: to direct her life to the maximum of her abilities and choose where to live, what to do and who to see.[i]
If you would like to learn more about SDM and the Jenny Hatch Justice Project, please read on!
Supported Decision Making: A Review
Supported Decision Making is, in a nutshell, a decision making support system that respects the personal choice and autonomy of individuals with disabilities. As a positive alternative to the more traditional legal role of Adult Guardianship, SDM places the decision making process directly into the hands of the individual with disability, while ensuring that the individual has access to the right information, tools, and the support that he or she needs to make a successful and informed decision.
According to Tina Campanella, Executive Director of the Washington, D.C. based non-profit Quality Trust (the organization leading efforts to advance SDM efforts through the National Resource Center on SMD), the supported decision making process “provides emphasis on legal capacity as a right, provides for meaningful involvement for the person needing support in decision making, discusses the need for self-advocacy support and new strategies for safeguards.†In other words, it involves providing an individual with disability with the help and support that he or she needs in order to make important decisions about where they live, how they pursue medical treatment, legal matters, and other important life decisions. In this way, the individual with disabilities is able to develop and pursue personal goals, retain autonomy, and exercise control over things that are important to them.
Jenny Hatch – The Story
Prior to 2012, Jenny Hatch was living an independent, happy, successful life. Jenny – an adult woman with Down syndrome – lived, worked, and banked independently. She managed her life with minimal supports, and was a well-rounded individual with a purposeful work life, a meaningful social life, and was actively involved in her community.
In 2012, this all changed when Jenny suffered a bike accident that injured her back. After a hospital stay (for spinal surgery), Jenny moved in with Kelly Morris and Jim Talbout, the owners of the thrift shop where she had worked for five years. Later that same year, after Jenny had lived briefly in a group home before returning to live with Kelly and Jim, Jenny’s biological parents filed a guardianship petition. As a result, Jenny was forced to move into the group home again – this time against her will.
Jenny was extremely unhappy at this group home. In her own words:
I was not allowed to go to my job at the thrift store. I worked there for five years. I wasn’t allowed to have my friends or co-workers visit or even call me. I wasn’t allowed to have my cell phone or computer. I felt like a prisoner, but I didn’t do anything wrong. I was told I had rights at the group homes, but that wasn’t true. Jewish Family Services (JFS). took them away. It was like I didn’t matter.
Jenny successfully challenged the guardianship petition, and the court ruled that although Jenny needed support she did have the right to make her own decisions, and her preferences should be respected. Morris and Talbot were named as temporary guardians, and charged with the task of helping Jenny become independent.
This case, often known as the Jenny Hatch Justice trial, is instrumental in paving the way for future individuals with disabilities to ensure that they retain the right to exercise control over their futures, and the decisions that affect their daily lives.
The Jenny Hatch Justice Project
Jenny, when giving speeches, often asks the crowd – who is making sure that what happened to me isn’t happening to someone else? One group, Quality Trust for Individuals with Disabilities, has risen to that challenge with the Jenny Hatch Justice Project (JHJP) which was established in 2013. The JHJP, inspired by the legal struggles that Jenny had to undergo in order to ensure that she had the right to make her own choices about her life, including where she would live, and where she would work, is an integrated, multi-faceted resource and outreach center dedicated to advancing people with disabilities right to make their own choices and determine their own path and direction in life. The organization seeks to provide supports and services to individuals with disabilities wishing to take control of their own decision making process.
In the JHJP welcome letter, Tina Campanella, pledged that the project would embody and advance five core principles:
1.) Everyone has the right to make their own decisions – to choose where to live, where to work, what to do and who to see – to the maximum of their abilities;
2.) Everyone has the right to ask for help in understanding the situations and choices they face, so they can make their own decisions;
3.) Laws, regulations, policies, and day to day practices must promote and protect people’s rights to make decisions with or without support;
4.) Health care, legal, support and other professionals and practitioners must recognize and respect people’s right to make decisions, with or without support;
5.) Researchers must develop evidence-based research to assess the impact and applications of Supported Decision-Making.
Since its inception, JHJP has been instrumental in helping more than 20 individuals avoid guardianship in favor of SDM and other less restrictive alternatives, provided help and guidance to more than 50 people on their rights in respect to guardianship and SDM, and trained more than 100 individuals on SDM and alternatives to guardianship. As Jenny herself says, Just because people have a disability does not mean they need a guardianship. Many times they may need just a little help.
Further Information
Thank you all so much for taking the time to visit us today – if you would like to learn more about SDM, please take a moment to visit supporteddecisionmaking.org, the website for the National Resource Center for Supported Decision-Making. If you would like to read more about Jenny Hatch and her successful fight for autonomy, please visit Quality Trust, The Jenny Hatch Justice Project.
For any other questions regarding helping adults with disabilities lead independent, integrated, inclusive lives please contact us! We would love to meet you and hear about the plans you have for the future of your family with special needs.
If you enjoyed reading our discussion today, please take a moment to subscribe to our blog, found on the right hand side of the website. This will ensure that you receive a copy of our weekly blog directly to your inbox every Thursday. We also welcome your questions on this or any of our blogs, as well as suggestions for future posts.
Thanks again – until next week!
[i] http://jennyhatchjusticeproject.org/trial
