Posting by A. Frank Johns, JD, LLM, CELA, CAP
Chair, National Guardianship Network
Today is the second day of the 3rd World Congress on Adult Guardianship. We heard from Sharon Lewis, Principal Deputy Administrator of the Administration on Community Living.
During today’s sessions at the 3rd World Congress on Adult Guardianship, Lewis offered a personal story about her 17-year-old daughter Zoe – for whom, she will provide supported decision making, but no guardianship. She suggested that “health care providers must do no harm” referring to patient-centered care.
“We don't do a good job with individual needs and wants,” Lewis said. “What harms are appropriate in guardianships?”
She listed numerous areas of harm, asking if it was “appropriate harm”. During this harm assessment, a self-fulfilling prophesy occurs that limits the self-decisions.
Lewis also quoted Burton Black on the freedom to make choices, “Each of us makes thousands of choices, many of them not in our best interest.”
She asked why we shouldn't allow persons with disabilities and vulnerabilities the same freedom to make bad choices and quoted Robert Persky explaining the difference between assisting individuals and intervening in their lives in order to “protect them from harm.”
The second presenter was Jenny Hatch, an individual with Downs Syndrome. Hatch eloquently described her personal fight for freedom from under the demeaning horrors of guardianship in her Virginia community.
At times tearful, her voice trembling with emotion, Hatch detailed how she was denied access to her own church, denied returning to her own job, denied living with those she identified as friends and family. Hatch said she was yelled at, and even hit, by those who were supposed to help her achieve a quality of life. She lamented how she lost a year of her life fighting for her independence and declared what a horrible thing it was to experience the loss of her rights.
As Hatch concluded her comments, she stood, thrusting her fist in the air, shouting, “I have my rights. I have my freedom back!”
Afternoon Notes from Day 2
The afternoon general plenary session was on Person-Centered Guardianship and Supported Decision-making in Six Countries. I organized this general session and invited the panel of guardianship experts from around the world to write and speak on person-centered guardianship and supported decision-making from their countries’ perspectives.
I also sought the support and expertise of Professors Rebecca Morgan and Roberta Flowers from the Stetson University College of Law (US), to moderate and facilitate the 90 minute session. To emphasize interaction between the panel and participants, a transponder system was utilized where after each presenter several questions were posted on the screens and all participants had “clickers” that produced their collective answers with explanation that followed.
We were honored to have Law Professor Makoto Arai from Japan, Professor Kees Blankman, from the Netherlands, Dr. Christer Fjordevik, from Sweden, Sue Field, from Australia, Professor Rob Gordon, from Canada, and Professors Tanya Richmond from the United States. The session was a tremendous success, and all participants will collaborate on an article to be published in the Journal of International Aging, Law and Policy to be published later in the year.