Supported Decision-Making Three Part Webinar Series

Hosted by: 
Quality Trust for Individuals with Disabilities, Burton Blatt Institute & Autistic Self Advocacy Network

1. Lessons Learned from the Canadian Experience: Supported Decision-Making Models
2. Introduction to Supported Decision-Making
3. Supported Decision-Making: The Next Level of Policy Development

In the summer of 2013, a young woman named Jenny Hatch won a landmark legal battle protecting her right to make her own life decisions using supported decision-making instead of being subjected to guardianship. Nationwide, people with intellectual, developmental and other disabilities continue to be placed under guardianship, losing their rights to make basic, fundamental decisions like where to live, what to do and who to see. Supported decision-making (SDM) is an effective, less restrictive alternative to guardianship that uses trusted friends, family members and advocates to give people with disabilities the help they need and want to understand the situations they face and the choices they must make, so they can make their own decisions. SDM shows great promise for increasing self-determination and improving quality of life outcomes.

The Jenny Hatch Justice Project (JHJP) established by Quality Trust for Individuals with Disabilities, who represented Jenny at her trial, invites you to participate in a three part webinar series in March, April, and May 2014 to increase your awareness and understanding of SDM and the implications for policy and practice at a community, state, and national level.

1. Lessons Learned from the Canadian Experience: Supported Decision-Making Models

March 26, 2014 1 – 2:30pm EST

The Canadian experience provides useful lessons about the underlying principles, structure, and approach of SDM as an alternative to guardianship and other substituted decision-making methods. For instance, 2005 Yukon legislation gives individuals with intellectual and developmental disabilities the right to enter into a supported decision-making agreement. In British Columbia, an individual with a disability may enter into a representation agreement with a support network.

On March 26, 2014 a panel of experts from Canada will share lessons learned from using SDM to help individuals with intellectual and developmental disabilities make their own decisions and order their own lives to the maximum of their capabilities.

Presenters

Michael Bach is Executive Vice-President of the Canadian Association for Community Living, the national Association of over 300 local Associations and 13 Provincial / Territorial Associations working to build a more inclusive Canada for people with intellectual disabilities and their families. He is also Managing Director of IRIS (the Institute for Research and Development on Inclusion and Society). For the past twenty- five years he has undertaken research and development in Canada and internationally on ways to advance the full inclusion and human rights of persons with intellectual disabilities. His publications cover disability theory, policy and practice in a range of areas including legal capacity, education, employment, and funding and delivery of community-based services. He holds a Ph. D. in Sociology and Equity Studies from the Ontario Institute for Studies in Education of the University of Toronto.

Lana Kerzner is a lawyer in Toronto, Canada who has devoted her legal career to disability law and policy work. She works, often in collaboration with disability organizations, to advance the rights of people with disabilities through law reform and education. She teaches Disability and the Law at Ryerson University and at the Law Society of Upper Canada. Her work currently focuses on capacity, decision-making and the international law implications of the United Nations Convention on the Rights of Persons with Disabilities, and she speaks at conferences, both in Canada and internationally, on the topic. Lana works in private practice and previously worked in Ontario's Legal Aid Clinic system, both at ARCH Disability Law Centre and the Advocacy Centre for the Elderly. She obtained her LL.B from the University of Toronto in 1992 and was called to the Ontario bar in 1994. She is also a graduate of the Maytree Public Policy Training Institute.

Peter Park was born in a small town in Ontario, where he lived for the first 20 years of his life. For the next 18 years, he was incarcerated at the Oxford Regional Centre Woodstock, an institution in Ontario. When Peter re-entered the community, he dedicated his life to advocating for people who have been labelled with an intellectual disability. Whether it be at the Supreme Court of Canada, or a small rural setting, Peter continues to advocate and educate on the realities of living in an institution, the barriers he faced, and the violation of rights that occurred while he was there. Peter has delivered presentations in Canada and internationally. He spends much of his time and energy travelling across Canada helping to organize other People First groups and continuing to advocate on behalf of Canadian's who have been labelled with an intellectual disability. Peter currently lives in the Toronto area with his wife, Rhea, of 24 years.

Reactor

Samantha Crane, Director of Public Policy, Autistic Self Advocacy Network

Moderator

Tina Campanella, Chief Executive Officer, Quality Trust for Individuals with Disabilities

Registration & Webinar Materials

2. Introduction to Supported Decision-Making

April 30, 2014 1 – 2:30pm EST

Jenny Hatch, her attorney and her supporter will discuss the “Justice for Jenny” case, the differences between SDM and guardianship and how SDM has worked for her. Presentations will focus on the contrasts between Jenny’s quality of life now as opposed to when she was under a guardianship and the practical and precedential importance of Jenny’s case for others who wish to avoid or be freed from overbroad or undue guardianship.

Presenters

Margaret "Jenny" Hatch is a leader, advocate and inspiration to people across the country. Jenny lives and works independently, is active in politics, and counts as her friends local, state, and national leaders. However, because she has Down syndrome, Jenny spent a long, lonely year living in a group home, against her will, cut off from her friends and access to the life she built in her community. Like far too many people with disabilities, Jenny faced a guardianship petition challenging her right to make decisions, choices she always made for herself like where to live, what to do, and who to see. After six days of trial, Jenny won the right to make her own decisions using Supported Decision-Making. The "Justice for Jenny" trial Court was the first to Order the use of Supported Decision-Making instead of guardianship for a person with a disability. Jenny now lives and works where she wants, has the friends she chooses and – as the founder, inspiration and face of the Jenny Hatch Justice Project – encourages others to do the same.

Jonathan Martinis, the Legal Director for Quality Trust for Individuals with Disabilities, has over 20 years’ experience representing people with disabilities in cases under the ADA, Section 504 of the Rehabilitation Act, the Individuals with Disabilities Education Act, and the Constitution of the United States. In 2013, he represented Margaret “Jenny” Hatch in the “Justice for Jenny” case – the first trial to hold that a person with disabilities has a right to engage in Supported Decision-Making instead of being subjected to a guardianship. Prior to joining Quality Trust in 2012, Jonathan was the Managing Attorney for the Virginia Office for Protection and Advocacy, the Virginia state agency dedicated to protecting and advocating for the rights of people with disabilities. With VOPA, he served as lead counsel in Brinn v. Tidewater Transportation District Commission, the first case to hold that people with disabilities have a right to paratransit transportation on a next day basis and in Winborne v. Virginia Lottery, which held that the Lottery must ensure full and equal access to its products and services, even when they are sold by private businesses.

Kelly Morris is a committed and passionate advocate and parent, strongly supporting people with disabilities’ right to live their lives in the places and ways they choose. When Jenny Hatch, Kelly’s employee, was injured in an auto accident and had nowhere to go, Kelly and her fiancée, Jim Talbert, took her in and became her greatest supporters. When Jenny faced a guardianship petition seeking to put her in a group home and take away her right to make her own decisions, Kelly and Jim fought for Jenny, spending a year of their lives and thousands of dollars to defend their friend. Thanks to Kelly and Jim’s commitment, compassion and advocacy, Jenny won her trial and now lives with them, using Supported Decision-Making to make her own decisions about her own life. Since the “Justice for Jenny” case, Kelly has continued to advocate for people’s rights, appearing at national conferences and becoming a founding supporter of the Jenny Hatch Justice Project.

Reactor

Ari Ne’eman is the President and co-founder of the Autistic Self Advocacy Network, an advocacy organization run by and for Autistic adults seeking to increase the representation of Autistic people across society. He is an Autistic adult and a leading advocate in the neurodiversity and self-advocacy movements. In 2009, President Obama nominated Ari to the National Council on Disability. He worked to shut down the New York University Child Study Center’s “Ransom Notes” campaign and also led other successful disability community responses to offensive advertisements, including the response to the Autism Speaks "I am Autism" fundraising video. Ari serves as a member of the Institute of Medicine's Forum on Aging, Disability and Independence, and as a board member of TASH. He previously served as a public member to the Interagency Autism Coordinating Committee, Vice Chair of the New Jersey Adults with Autism Task Force, a member of the New Jersey Special Education Review Commission, and was the first ever Patricia Morrissey Disability Policy Fellow at the Institute for Educational Leadership. Ari has received the HSC Foundation "Advocates in Disability" Award, and the Expanding Horizons Award from United Cerebral Palsy. In his policy work, Ari has worked on a wide variety of disability rights related legislation relating to education, transition, employment, rights protection and other areas.

Moderator

Tina Campanella, Chief Executive Officer, Quality Trust for Individuals with Disabilities

Registration & Webinar Materials

3. Supported Decision-Making: The Next Level of Policy Development

May 22, 2014 1 – 2:30pm, EST

What are the implications of the Jenny Hatch decision for future Olmstead litigation and settlement agreements? Should SDM and the development of decision-making capacity be a part of Special Education transition planning? Should guardianship laws be changed to identify or embrace SDM as a less restrictive option? A panel of experts will discuss policy development options to accelerate systems change at a local, state, and federal level.

Presenters

Sharon Lewis, Commissioner, Administration on Intellectual and Developmental Disabilities
US Department of Health & Human Services

Allison Wohl, Executive Director, Collaboration to Promote Self-Determination
National Down Syndrome Society

Barbara Brent, Director of State Policy
National Association of State Directors of Developmental Disabilities Services

Sue Swenson, Deputy Assistant Secretary, Office of Special Education and Rehabilitative Services
US Department of Education

Reactor

Ari Ne’eman is the President and co-founder of the Autistic Self Advocacy Network, an advocacy organization run by and for Autistic adults seeking to increase the representation of Autistic people across society. He is an Autistic adult and a leading advocate in the neurodiversity and self-advocacy movements. In 2009, President Obama nominated Ari to the National Council on Disability. He worked to shut down the New York University Child Study Center’s “Ransom Notes” campaign and also led other successful disability community responses to offensive advertisements, including the response to the Autism Speaks "I am Autism" fundraising video. Ari serves as a member of the Institute of Medicine's Forum on Aging, Disability and Independence, and as a board member of TASH. He previously served as a public member to the Interagency Autism Coordinating Committee, Vice Chair of the New Jersey Adults with Autism Task Force, a member of the New Jersey Special Education Review Commission, and was the first ever Patricia Morrissey Disability Policy Fellow at the Institute for Educational Leadership. Ari has received the HSC Foundation "Advocates in Disability" Award, and the Expanding Horizons Award from United Cerebral Palsy. In his policy work, Ari has worked on a wide variety of disability rights related legislation relating to education, transition, employment, rights protection and other areas.

Moderator

Tina Campanella, Chief Executive Officer, Quality Trust for Individuals with Disabilities

Registration & Webinar Materials