Please note: below is a detailed summary of the 12th Annual Federal Policy Forum for Inclusion. You can find links to all of the presentations here.

Introduction

On November 30th and December 1st, Inclusion Canada and People First of Canada (PFC) hosted the 12th Annual Federal Policy Forum for Inclusion. The theme for this year’s virtual two-day event was Right at Home: Advancing Article 19 – The Right to Live in the Community. As COVID-19 continues to expose the dangers of congregate care and institutional living, this year’s Policy Forum explored pathways to community living and how the introduction of innovative federal programs could support this shift.

Day 1:

Opening Remarks and Keynote Introduction

Opening remarks were provided by Krista Carr, Executive Vice-President of Inclusion Canada, Dewlyn Lobo, President of People First of Canada, and the Honourable Carla Qualtrough, Minister of Employment, Workforce Development and Disability Inclusion. Each speaker highlighted the unique impact of the COVID-19 pandemic on people with intellectual disabilities. They also recalled the lack of public awareness of the specific impacts on people with disabilities and the need to reform the glaring inequities exposed by the pandemic.

Keynote Speaker

Megan Linton, a disability policy researcher and writer, provided the keynote. Megan’s  PhD research at Carleton University focuses on the intersection of disability, criminalization, and institutionalization. As the lead researcher of the Invisible Institutions Research Project, she produced a forthcoming podcast mini-series and a national report on institutionalization.  Her presentation, Invisible Institutions: Counting the COVID Crisis presented her research about the impact of COVID-19 on institutionalized people with developmental disabilities in Canada. The research clearly demonstrates that the institutional care system is convoluted, confusing and in need of reform.

Her presentation discussed two types of institutions in Canada – indirect support (for example, prisons, emergency shelters, long term care) and direct support (for example, developmental services, dual diagnosis services, forensic psychiatric services). These systems cause significant amounts of emotional and mental harm to people with a disability. However, Megan discussed how indirect support causes even further harm, in which “people with disabilities are segregated even further.”

Based on her research, Megan strongly believes that “in order to demand de-institutionalization, we [first] need to understand where people are being institutionalized across Canada”. However, a lack of data on where institutionalized people with developmental disabilities are living makes it nearly impossible to clearly define the number of people living in institutions and fully support this transition.

Concluding her presentation, Megan stated: “We need to demand access to choice, community and autonomy so that people can realize their rights and have access to the supports that they need in community. And even though it might seem like we have a gigantic task ahead of us, we know from the deinstitutionalization movement that we have done it before, and we can do it again.”

Please click here to view Megan’s presentation.

Powerpoint slide with text reading "Disrupt: the idea that institutionalization is over. Demand: access to choice, community, and autonomy. Deinstitutionalize: we have do it before and we will do it again."

“It became quite clear that since we didn’t have a list of institutions, we didn’t know where people labelled with intellectual disabilities who were at this increased risk of contracting and dying from COVID-19 were, we would need to know where they were.”

Megan Linton

Panel 1: Bringing COVID Learnings Home 

Access all of the presentations from Panel 1 here.

The policy forum’s first panel brought together panelists with lived experience to discuss how the pandemic has impacted life for people with a disability and their families. Bobbie-Rae, Shane Haddad, Janet Forbes, and Doug Cartan recall the harsh realities of the pandemic for institutionalized and non-institutionalized people with disabilities. A particular focus was given to the conditions of institutions and what institutionalized life looks like.

In the first panel, self-advocates Bobbie-Rae and Shane Haddad provided first-hand accounts of what life is like for people with intellectual disabilities during COVID-19. In a pre-recorded video[MM1] [RM2] , Bobbie-Rae discussed the many ups and downs she faced since the start of the pandemic and provided advice on how to maintain your mental well-being. Shane shared his difficult experience in dealing with the isolation the pandemic caused and feelings of helplessness watching his granddaughter, Riley, struggle to adapt to online schooling.   

In the next panel, Janet Forbes, member of the Joint Task Force on Deinstitutionalization, provided an in-depth analysis of how the pandemic isolated people with developmental disabilities. She advocated for individual funding and direct support for people with developmental disabilities to have access to community living.

Janet Forbes speaking into a headset while looking at the camera on a Zoom call.

Following Janet, Doug Cartan, Co-Founder of Seniors for Social Action Ontario, spoke about the deplorable conditions in long-term care homes and how Seniors for Social Action Ontario is working to help people living in these facilities. Doug provided 5 recommended approaches to changing the system of institutionalization, including:

  • focusing on the person,
  • ensuring autonomy,
  • ensuring direct and portable resources,
  • providing alternatives to congregate care,
  • providing care within the home

He concluded his presentation with a powerful statement – “[…] we need to find a way to facilitate the circles of support that help ensure the commitment of community living, lifelong, for all people. That’s the path forward,” – marking the end of Panel 1.

“In long-term care in Ontario, 25% of the population will die each year.”

Doug Cartan

Panel 2: Congregate Care & the Courts: Potential impact of the Nova Scotia court decision 

Access all of the presentations from Panel 2 here.

The second panel of the day focused on the fight for people with developmental disabilities to live in community settings and the impact of the Nova Scotia Court of Appeal ruling on the violation of people with disabilities’ right to live in the community.

Leta Jarvis, a member of Joint Task Force on Deinstitutionalization and People First of Nova Scotia, opened the panel by recalling her tragic experiences as a person with a disability who spent many years living in institutions. Leta said, “You go there, you have no rights. You got no life. They will tie you down”. She told the audience of the physical, medical, sexual and emotional abuse she suffered at the hands of her caregivers, including physical punishments and electric shock ‘treatments’. Leta now lives in the community, but her brother, who also has a developmental disability, remains institutionalized.

Leta Jarvis speaking on a Zoom call with ASL and LSQ interpreters pinned in different boxes

Following Leta’s powerful presentation we were joined by parent-advocate Barb Horner, a founding member of the Disability Rights Coalition, who shared her family’s experience of trying to find adequate support for her daughter, Mallory, who has a disability. Barb was told the Dartmouth Children’s Training Centre would be a safe place for Mallory and would provide her with a meaningful life. Shortly after moving into the institution, Mallory was harmed by staff. Barb took her home and refused to place her in an institution again. Barb discussed life after the centre and the work she did to find the support her daughter needed to live in the community.

The third panelist was Claire McNeil, a staff lawyer with the Dalhousie Legal Aid Service, who outlined the Nova Scotia Court of Appeal case that found “[…] the province is violating the human rights of people with disabilities when it fails to provide access to the supports needed for them to live in the community”. Claire explained the court case in detail, emphasizing, “the government really effectively treated social assistance for people with disabilities as a privilege rather than an entitlement.”

The final panelist of the day was Joëlle Pastora Sala, an attorney with the Public Interest Law Centre, who discussed the potential impact the Nova Scotia Court of Appeal case will have on Canada. She noted that, “While the court of appeal decision is not binding in other jurisdictions, the impacts of the decisions cannot be underestimated”. Joëlle explained how the Nova Scotia case can set precedent for similar cases across the country and gave advice on how to demand change by contacting your local government representatives.

In recent days, Inclusion Canada has learned that the Nova Scotia government intends to appeal the decision to the Supreme Court of Canada.

“So, please remember that this is not about buildings. It’s not about group homes. It’s not about small option homes. Buildings and places do not support our kids. People support our kids. So we must continue to advocate for properly-trained support staff as part of this process.”

Barb Horner

Day 2

Opening Remarks and Keynote Introduction

Day 2 began with opening remarks from Donna Brown, the 1st Vice-President of People First of Canada, and Moira Wilson, Vice-President of Inclusion Canada. The day’s focus was on pathways to community living. “We’ll learn about the process of moving from institutionalization to true community living [and] what it means to do this ‘the right way,’” said Moira.

Keynote Speaker

Once again, Megan Linton joined as the keynote speaker to discuss the cyclical nature of institutionalization in her presentation, Invisible Institutions: Trends and Troubles in Today’s Institutions. She described the ways institutionalization creates a cycle that prevents people with disabilities from leaving the system.

Megan noted that it is easy to get trapped in the cycle of institutionalization because of our government’s approach to the issue, stating “Instead of creating policies that focus on ensuring their transition out of the institution and into the community, policies have focused on ensuring that long-term care is somehow more appropriate”. Factors such as institutional allowances and long waitlists for direct support services make this cycle difficult to break.

In conclusion, Megan stated, “Because I think as we can all agree here, people with disabilities are an integral part of our communities. And when they’re not within our communities, our communities are missing out on some of the best people. On some of the greatest community members. And on some of the most important relationships,”

You can find a copy of Megan’s powerpoint presentation here.

Stand Alone Quote:

“Instead of changing the current system that relies on institutionalization, we normalize it by making these policies that are supposed to make it better for people living within the institution.” -Megan Linton

Panel 3: My Home, My Community – The Right Way

Access all of the presentations from Panel 3 here.

The first panel of Day 2 provided information about transitioning from an institution to community living and the options available to people with a disability living in community.  

Youth Coordinator, Nicole Canzonei, and Former Project Manager and Curriculum Developer, Emily Branje, of the Truths of Institutionalization project, gave a presentation on The Truths of Institutionalization – Past and Present curriculum. Featuring discussions about the history of disability rights in Canada, they provided historical context to institutionalization and the impact the curriculum had on their perception of inclusion in the community.

Following Nicole and Emily, Norm McLeod and Gordon Fletcher, Chairs of the Joint Task Force on Deinstitutionalization, presented 8 lessons about the transition between institutionalization and community living fond in the document The Right Way: A Guide to Closing Institutions and Reclaiming a Life in The Community for People with Intellectual Disabilities. The 8 lessons emphasize the importance of a person-centred approach to deinstitutionalization:

  1. Find champions for community living
  2. Make sure the needs and preferences of the person comes first
  3. Respect the experiences and roles of families
  4. Facilitate person centred plans
  5. Create quality supports, services and safeguards
  6. Recruit and develop qualified support staff
  7. Carefully coordinate support for each person
  8. Establish community partnerships

The third panelist was Jeff Ferguson, Director of Policy and Program Operations at Inclusion Canada. He reviewed past work of My Home, My Community and provided a preview on the latest My Home My Community project called Pathways to Homeownership. Led by the Institute for Research and Development on Inclusion and Society (IRIS), in collaboration with Inclusion Canada, People First of Canada , the project provides tools, information and resources for people with intellectual disabilities and their families who are looking to explore the purchase a home as an option. Jeff detailed the nature of housing and home, saying “While housing varies across the world, the meaning of home is constant. It’s the place where we grow up, develop and go out into the world and eventually we create a home of our own that reflects who we are as unique people”. To illustrate this point, Jeff examined 3 different types of homeownership through the experiences of 3 people with intellectual disabilities who have purchased a home.

Image of slide with white background. "Pathways to Homeownership" report cover in the middle, with text that reads "My Home My Community: Pathways to Homeownership" and the MHMC, IRIS, Inclusion Canada and People First of Canada logos below.

The project features examples from 6 people with intellectual disabilities who have gone through the process of purchasing a home and outlines their challenges and successes along the way. Jeff also showed two videos from the project and 7 plain language tools that have been created to help in the planning and process to see if owning a home would be an option worth exploring. The project also features resources for professionals such as lawyers and financial institutions on how they can help better help guide people with intellectual disabilities and their families with the process of owning a home. The work will be available on the My Home My Community website in the coming weeks.  Jeff concluded his presentation by indicating that, “it may not be an option for everyone but this project demonstrates that it is possible”.

The final presentation of this panel was from parent-advocate Susan Borkowsky about her son, Dan , and his journey to homeownership. Susan discussed the home purchasing process and the many challenges that he faced along the way. This included the complexity of the house purchasing process and financial roadblocks such as securing a mortgage. She emphasized the value of community living for people with developmental disabilities and the positive impact it has had on her son. Concluding her presentation, she stated that “13 years into home ownership, Dan has evolved from a young man stepping into independence to now a man in his 30s with his own home. And living the best life for him”.

Susan Borkowsky speaking on a Zoom call.

“Home ownership gave Dan the freedom and control to make his own choices regarding who would be living with him and who he would be working with. He was also able to make his own schedule and plan his life, just like you or I would.”

Susan Borkowsky

Panel 4: From Dreams to Reality: Policy Solutions for the Future

Access all of the presentations from Panel 4 here.

The final panel of the forum focused on creating real solutions to institutionalization within government policy.

Self-advocate and President of B.C. People First, Jo-Anne Gauthier, shared the story of her family’s housing journey. She discussed the many ups and downs they faced after selling their home and moving across the country. Despite the challenges they faced, such as poor financial advice and theft, Jo-Anne and her husband now live together in an apartment of their own.

Jo-Anne Gauthier speaking on a Zoom call with her husband sitting in the background.
“You might not live in a big house. I don’t want that either. I just always wanted to live where I feel like me, and where I feel alive,” – Jo-Anne Gauthier

Following Jo-Anne’s presentation, Thomas McManus, Principal Associate at the non-profit research organization Blueprint, discussed the Canada Housing Benefit’s potential to make affordable housing accessible to people with disabilities. Using research that Blueprint conducted in partnership with Inclusion Canada, Thomas explained potential designs for a disability supplement for a housing benefit and the challenges that need to be overcome to make the supplement a reality.

The third panelist, Sylvaine Fortin, Director, Programs at the Office of Disability Issues, provided information about Registered Disability Savings Plans (RDSPs) and recent improvements to the program. Sylvaine explained the improvements to the program, including the introduction of a measure that “[…] allows beneficiaries who lose their disability tax credit approval to keep their RDSP open. And not have to repay grants and bonds received while they were approved”. She also gave a detailed explanation of how RDSPs work and who qualifies for one.

Bruce Uditsky, Chief Executive Officer Emeritus, Inclusion Alberta, concluded the forum with a detailed explanation of the My Home My Community recommended changes to the RDSP program (link to the paper here) that would make the financing of homeownership more accessible to some people with disabilities just like the withdrawals for home buying under the Registered Retirement Savings Plan (RRSP) does. He reviewed 2 proposed changes that would benefit people with disabilities looking to purchase a home:

  • Allow access to individual RDSP invested savings funds at an earlier age than is currently allowed.
  • Permit people with disabilities the ability to withdraw funding from their RDSPs, without penalty, for a down payment on a home.
Image of slide with text from Bruce's presentation. Text reads "RDSP Home Ownership Plan. Change federal policy to enable: RDSPs to be used toward the purchase of a home, RDSP savings to be withdrawn without penalities, More individuals/families to be eligible for grants & bonds, Funds used for homeownership not having to be paid back."

Stand Alone Quote:

“Just as Canadians in general may have a dream of someday owning their own home, so that’s as true for people with intellectual or developmental disabilities, particularly as they’re growing up at home at increasing numbers and living an inclusive life.”

Bruce Uditsky

Conclusion/Closing Remarks

Krista Wilcox, Director General at the Office for Disability Issues, Employment and Social Development Canada, Shelley Fletcher, Executive Director of People First of Canada, and Krista Carr, Executive Vice-President of Inclusion Canada, each gave closing remarks summarizing the 2-day event along with their own individual take aways.

The final remarks emphasized the importance of ensuring that people with disabilities have the right to live at home. They questioned why despite glaring inhumane living conditions exposed by the COVID-19 pandemic, some people still see institutions as a viable housing option.  Closing out the event, Krista Carr stated: 

“[…] we need to move from talking to actual action. We need to take the steps to make a real difference. We know what needs to happen. And now we need to make it real. And it’s time for us to band together in partnership”.