Submitted by: Sue Hutton, MSW, RSW
I’m a social worker who’s worked in developmental services for over 25 years (okay, I’m old). I spent many years getting my feet wet in case management, leading community-based programs like a weekly music group at Community Living Toronto. Some of the people I learned the most from, who stay most near and dear to my heart, are those with Fetal Alcohol Spectrum Disorder (FASD). The challenges they face clearly were met with developmental services staff who required deeper training to fully be able to support them. One client of mine became a real focus for me – the support she needed was different than supports any other clients of mine required. I had to be flexible, to be there in different ways – supporting her through the ups and downs of having a child who was apprehended in foster care, the challenges of substance use, and of having complicated people in her life who moved in and out of the criminal justice system. Her heart was more open than others I worked with, both the deep wounds and the innate ability to show compassion.
Then I was offered a position developing and delivering rights training at the agency level. In this role I created case scenarios for staff to explore how they react around supporting complicated examples of decision-making rights. Examples of the complexity of life decisions for someone with FASD kept coming up. However, only a year after another worker had taken over my caseload, I heard that my previous client had been permanently discharged from services for non-compliance. The worker who discharged her had clearly not received the necessary training or resources to provide services in the right way to effectively support our FASD population. Her rights were not being upheld as they should have been. To this day, I continue to put the word out to shelter workers from time to time, to see if she has surfaced somewhere safely. The issue of her right to services continued to haunt me.
The rights work I moved into continues, as does my work supporting self-advocacy. All of this work has been alongside my other love, mindfulness research in autism, at The Centre for Addiction and Mental Health (CAMH) with Dr. Yona Lunsky.
In delivering Rights training to staff and observing how the self-advocacy movement across Ontario looked like it could use a major facelift, I began to consult with Rights lawyers at ARCH Disability Law Centre to learn more about the legal rights of persons labeled with intellectual disabilities. It seemed as though the law was missing from the fabric of how rights work was being carried out across Ontario’s developmental services agencies. It wasn’t just one agency or another – it was the whole province from what I could gather through academic searches, literature reviews, and my own environmental scans.
Then in 2009 I met with Robert Lattanzio (now ARCH’s Executive Director – back then a staff lawyer at ARCH). Rob showed a deep commitment to defending the rights of adults with intellectual and developmental disabilities (IDD) and shared with me his experiences of working the front lines of developmental services long before becoming a lawyer. He knew the system well and was passionate about supporting people with disabilities to access their rights.
One summer morning in 2009, Rob, myself, Peter Park (the Godfather of self advocacy and founder of People First Ontario), and Lorry Cumming met for breakfast in a local diner, and the idea of forming a grassroots committee with three voices united was born. We called it “triple scoop”: self-advocates working alongside rights lawyers at ARCH, and advocacy-minded social workers like myself. We all felt we needed each other’s voices to strengthen the work we had all been doing. Respecting Rights was born. It is now a full project at ARCH that is led by self-advocates labelled with intellectual disabilities, working in our triple scoop way.
We strive to bring accessible legal rights education to adults with IDD across the province, using art, role play, and video. We’ve now been delivering innovative rights education across Ontario since 2011. Over a thousand people have participated in our workshops and presentations. In parallel work, we do accessible law reform projects. In this, we work with a growing community of adults with IDD across Ontario to improve the law.
Respecting Rights: My Voice, My Choice
To further our work, ARCH is grateful to have been awarded funding from the Special Projects Initiative which will be critical in supporting and expanding this program. These funds were made available through the settlement agreement in the institutional abuse class action lawsuit against the Government of Ontario regarding the Huronia Regional Centre.
The project we have now launched with this funding is called RESPECTING RIGHTS: MY VOICE, MY CHOICE. Through this project, we are exploring how people labelled with IDD across Ontario are supported to advocate when it comes to making their own decisions with support. We feel that there is much education and support for families around Supported Decision Making, and not quite as much for people labelled with IDD to be determining what they need to develop supported decision-making such as support circles.
We are focusing this project in three communities and are evaluating this work with the help of third-party evaluator Cam Crawford at Eviance (formerly the Canadian Centre for Disability Studies). The self-advocate team of Respecting Rights selected Cam for this work, largely based on his lived experience (literally!) – living within a L’Arche Community for 5 years, prior to pursuing his education and eventually becoming a professor in the Critical Disability Studies program at Ryerson University.
We are thrilled to be doing this work along with researcher Josee Boulanger in Ottawa, who is supporting the Disability Advocacy Network of Eastern Ontario (DANEO) team of self-advocates to participate. Additionally, we have Western Ontario on board with the London network of self-advocates (New Visions Advocates), supported by long time advocacy staff Vicky Pearson. In Toronto, Central Ontario is represented through Community Living Toronto’s Self Advocates Council.
It feels a little bit like a dream team. It’s not easy work, and we are sharing in the journey of supporting people through daily struggles to make their own decisions and having their voices heard. Families and staff are learning along with us – and we are all in this journey together.
Respecting Rights self-advocates are receiving training from social workers and lawyers in delivering peer-based supports through RESPECTING RIGHTS: MY VOICE, MY CHOICE. Through the project self-advocates are also co-authoring journal articles on advocacy issues such as Self-Advocacy from the Ashes of the Institution and System Kids: Transition-Aged Youth From Foster Care to Developmental Services, published earlier this week in the Journal on Developmental Disabilities as part of their special issue on transitional-aged youth. This article is co-written by, Sarah Lyttle, one of the very articulate and brilliant young women I have worked alongside in public speaking about decision making rights of persons with disabilities. She is very vocal about her FASD diagnosis, and how it affects her life, her decision making, and the kinds of supports she needs from her workers. I must say, her personal lived experience expertise and ability to articulate her needs related to her FASD diagnosis has taught me the world. Co-authoring with the wisdom of people like Sarah is an incredible experience. Who could be a better expert on FASD than someone living with it?
Please join our mailing list and get in contact if you are interested in knowing more and getting involved. It’s a long journey, and we’d love to share it with you. The more of us there are, the stronger our network working toward change will be. One decision at a time.
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#FeatureFriday Story By: Sue Hutton, MSW, RSW
ARCH Disability Law Centre/ Community Living Toronto
shutton@cltoronto.ca