I’ve chosen not to write blog posts daily on my Canadian leg of this trip, instead I’ll do a post every few days. I flew into Toronto a week ago on a fairly turbulent flight due to wind and jet streams. I was productive on the flight, met a few deadlines and was excited to see what Canada would hold. So far I’ve really not been disappointed.

I’ve been blown away by the hospitality that’s been extended to me, especially by Marilyn and Jim Dolmage. They have shared their knowledge and expertise, their contacts, ideas and suggestions, their stories and experience, and most of all their time and their home.

There are few places I can imagine that are more restful or calming to read court documents about abuse and neglect than The Bruce Peninsula. I got a couple days there with Marilyn and Jim acclimatising and familiarising and discussing the class action law suit brought by the survivors of Huronia.

From 1876 to 2009 thousands of children and adults with developmental disabilities/learning disabled people lived in the Huronia Regional Centre institution at Orillia. The abuse and neglect they were subjected to was utterly dehumanising, life altering and in some cases life ending. I’ll talk more about it in a separate post and share some of what the survivors who I had the privilege to meet had to say.

In terms of other meetings, I had coffee with William Cutbush, an investigations manager from the Ombudsman of Ontario’s office who was heavily involved in the investigation that led to the 2016 report, Nowhere To Turn. The report considered more than 1,400 complaints from families of adults with developmental disabilities in crisis situations, including being abused, unnecessarily hospitalised and jailed and painted a picture of systemic failure and neglect. It’s a familiar picture.

I’ve met with Rob Lattanzio, the CEO of ARCH Disability Law Centre, a ‘specialty community legal aid clinic dedicated to defending and advancing the equality rights of people with disabilities in Ontario. ARCH provides legal services to help Ontarians with disabilities live with dignity and participate fully in our communities’. Rob and I discussed their supports and services, to date they’ve not supported families of people with an intellectual disability who have died, although they have intervened in inquests where there is no family involvement. They also do grassroots work on human rights education and work with self advocates to deliver training.

I spent time with Esther Ignagni, Kim Collins, Giselle, Eliza Chandler and Kathryn Church from the School of Disability Studies at Ryerson University. Our conversation was wide ranging touching on previous inquests, medical assistance in dying, intersectionality, death cafes and the relationship between, and opportunities presented by, arts and disability. They recommended loads more people I should speak with although I may need to resort to Skype calls as I’m rapidly running out of time.

I had one completely fluke meeting with Leanne Dospital, Advocate for Service Quality in the Province of British Columbia. Much as I’d have loved to visit BC, the fluke element comes about because Leanne was in Toronto for a course and so we met in a downtown cafe. Leanne reports to the Minister of Social Development and Poverty Reduction. We talked about her role, death certification, the need for people with intellectual disabilities to be able to access good healthcare, and she also alerted me to the work of Joan Rush on the need for specialist dentistry services, see Help! Teeth Hurt for more. We also touched on over medication of people in long term care, another familiar story.

I also had a number of meetings that related to coronial processes. I met with the Deputy Chief Coroner of Ontario, Dr Reuven Jhirad. Reuven talked through the Coroners Act as it related to mandatory investigations and we discussed whether deaths of intellectually disabled people would get investigated – both what should happen and what is likely to happen in practice. Reuven had a very public health lens on the coronial process, strongly articulating for the need for investigations to both identify learning and for it to be fed back into the system to ensure that the work of the Coroners Office is related to prevention of future deaths, indeed their motto is ‘We speak for the dead to protect the living‘.

On the same day I was visiting a new report was published by the Office of the Chief Coroner, The Report of the Expert Panel on the Deaths of Children and Youth in Residential Placements. An expert panel was convened to examine the circumstances of the deaths of 12 young people, eight of whom were Indigenous, who died whilst they lived in residential care in the care of a Children’s Aid Society or Indigenous Child Wellbeing Society between January 1, 2014 and July 31, 2017. The panel concluded that:

The systems that were involved [in the young people’s lives] repeatedly failed in their collective responsibility to meet the fundamental needs of the young people… [the current system is] largely reactive, operates in siloes, and focuses on services to the individual rather than the individual and their families and communities.

It’s a heart breaking read, and one that interestingly almost hides issues of intellectual disability with fleeting reference made in one paragraph:

In the histories of the young people reviewed, the Panel found examples of young people who appeared to have a developmental disability and did not receive an official diagnosis, despite descriptions of symptoms in the documentation. In other examples, young people were likely experiencing a developmental disability, and were being assessed as having mental health challenges, and treated as such. In particular, the Panel noted that there seemed to be a lack of understanding about the most effective treatment options and support for young people living with fetal alcohol spectrum disorder.

Lots to think about there. I also got the chance to very briefly meet with Liz Siydock, the sole family liaison officer for the whole province, someone who brought personal and professional experiences together in her role. Liz described her role as relating to families and ensuring their concerns are addressed, communicating autopsy results, dealing with special requests to view bodies and dealing with complaints. She also mentioned work done with families who might be having a difficult time coming to terms with the coroners findings.

Which dovetails nicely with the other coroner related meeting I had in Toronto, with DIOC, the Death Investigation Oversight Council. I had the privilege of meeting with secretariat staff members John, Carole-Ann, Terry and Kevin, along with a public board member, Lucille, and chair of their board, Christine. DIOC had produced a slide deck to talk me through their remit and approach. They emerged as a recommendation of the Gouge Report, the Report of the Inquiry into Pediatric Forensic Pathology in Ontario. This report resulted in the repealing or acquittal and exoneration of a number of parents and family members wrongfully criminally charged and convicted of murdering babies and children.

DIOC has 14 council members, including the Chief Coroner and Chief Forensic Pathologist. They act as a layer of scrutiny for families, providing oversight of Ontario’s coroners and forensic pathologists in a number of areas, and administering a public complaints process. DIOC can not overrule a coroner’s finding, however they can liaise with them and request them to reconsider a determination or reopen an inquest if new evidence emerges, or if a family consider that key evidence was not considered. DIOC provides advice and makes recommendations to the Chief Coroner and the Chief Forensic Pathologist on matters that include:

• Financial resource management
• Strategic planning
• Quality assurance, performance measures and accountability mechanisms
• Compliance with the Coroner’s Act
• Administration of a public complaints process.

I’ve felt for a long time that our coronial process in the UK lacks any sort of recourse once the confidence of families has been lost, and I can’t help but think something like DIOC would be of use.

One week in my brain is buzzing with thoughts, reflections and ideas, but for now back to Edmonton.