Invisible and Forgotten in the COVID-19 Crisis: Canadians with Intellectual Disabilities

While Canadians are well informed of seniors’ vulnerability to COVID-19 and all too aware of its devastating and life-threatening impact, the same cannot be said for individuals with intellectual disabilities, leaving them in harm’s way.

The Canadian Association for Community Living (CACL) and its provincial and territorial associations have been raising the alarm and pleading for governments to act and protect the lives of individuals with intellectual disabilities, just as they have for other vulnerable populations. Governments have rightly committed to protecting those who are homeless, people experiencing domestic violence, and seniors yet remain unmoved by the comparable needs and risks of people with intellectual disabilities.

However, to the virus, individuals with disabilities are neither invisible nor forgotten. As families and those who provide support to people with intellectual disabilities, we are forced to conclude that individuals with intellectual disabilities are not equally valued and their lives are expendable.

“The blatant disregard of the value of my daughter’s life and others with intellectual disabilities is unconscionable and should never have been possible in this country,” stated Robin Acton, CACL President and parent of an adult daughter with intellectual disabilities. “Every day across this land, politicians and health authorities attempt to reassure us. With each passing day, my daughter and others with intellectual disabilities remain invisible and forgotten. My anxiety and fear mounts.”

Whether they live in their own homes, with their families, group homes or residential facilities, the vast majority of individuals with intellectual disabilities require personal support workers. Without these supports their very lives are at risk at the best of times, so it should not be difficult to understand their vulnerability to the COVID-19 pandemic. Many cannot fully isolate from others due to their disabilities or living arrangements and therefore have a higher risk of contracting the virus.

The personal support workers who continue to provide support are among the many unsung Canadian heroes, yet remain unrecognized and unsupported. They are deserving of additional wages as they risk their lives in the support of vulnerable Canadians. They continue day after day in their commitment to be in the homes of individuals with disabilities, without essential guidance from health professionals, access to needed protective personal equipment (PPE), or measures to address COVID-19’s impact when it strikes an individual they support and/or themselves. These resources and measures, which need to be available to families as well, must be brought to bear today, not tomorrow.

Although proposals have been made to government by CACL and its member associations, plans still do not exist to ensure a trained workforce is available when individuals or staff become ill or to provide alternative living arrangements for those who require isolation. Government is only taking action when there is a COVID-19 crisis in a residential facility. As a result, lives will be lost which might otherwise have been saved.

Recently, Minister Carla Qualtrough announced the COVID-19 Disability Advisory Group to which Krista Carr, CACL Executive Vice-President was appointed.

Mrs. Carr stated, “I will be seeking a nationally coordinated approach with the provinces and territories that is immediately responsive to individuals with disabilities, their families and those who support them to ensure they are no longer invisible, forgotten, or treated as if their lives do not matter.”

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Media Contact: Marc Muschler, Senior Communications Officer, CACL,
mmuschler@cacl.ca
The Canadian Association for Community Living (CACL) is a national federation of 13 provincial-territorial associations and over 300 local associations working to advance the full inclusion and human rights of people with an intellectual disability and their families.

CACL leads the way in building an inclusive Canada by strengthening families, defending rights, and transforming communities into places where everyone belongs.


BC Man's Death a Cause for Concern Medical Assistance in Dying Law Must be Clarified

TORONTO, ON – The Canadian Association for Community Living (CACL) is distressed to have learned of the death of Alan Nichols, a British Columbia man with a disability and mental illness who died with medical assistance despite, in his family’s view, being in a state of mental health crisis. Right now, doctors are able to interpret Canada’s medical assistance in dying law more broadly than ever intended; otherwise, Nichols, a vulnerable person in a moment of crisis, would never have been able to sign off on his death.

Alan Nichols was admitted to Chilliwack General Hospital in June, suffering from dehydration and malnourishment. Unbeknownst to family members, who were notified just four days before the procedure, Nichols was approved for doctor-assisted death. His family, who did not believe he met the eligibility criteria for medical assistance in dying, were unable to intervene in his case; on July 26 at 10:00am, Alan Nichols life was ended through lethal injection.

“So much more could have been done to improve Alan’s quality of life,” says Krista Carr, Executive Vice President of CACL, “Alan was living in poverty, lacked access to the disability supports needed to live without stress, and does not appear to have been connected to appropriate community-based mental health services. This is exactly why we need the end-of-life criterion to remain in the law – deaths like Alan’s cannot be normalized.”

Nichols’ death brings to light the immense discretion some medical professionals have taken upon themselves when assessing patients for medical assistance in dying. With such application of the law gaining popularity, in clear conflict with the intent of the legislation, Canada’s medical assistance in dying system appears to be quickly moving towards enabling access to based solely on a person’s, and others’ perception of intolerable suffering.

The Alan Nichols case, along with many others reported in the media, signal the critical need to review and clarify the medical assistance in dying law. A review mandated in the legislation is set to begin in 2020. However, in order for the law as written to still be in place at that time, the Attorney General must appeal the Quebec Superior Court’s recent decision in the Truchon and Gladu case, which struck down the end of life criterion as unconstitutional.

Advocates like Carr and Joy Bacon, President of CACL, urge the Attorney General to appeal contending that without the end of life criterion, deaths like Nichols’ will become more routine.

“This is my main concern with the Truchon and Gladu decision,” shares Joy Bacon, President of CACL, “that stigma and medical assistance in dying are entangled and inseparable. Without the firm line that is the end of life criterion, there is more space for stereotyping and discrimination to seep into the medical assistance in dying system. By steering people who are oppressed and suffering toward assisted death, Canada will be feeding back into stigmatizing narratives, telling Canadians that some lives are more worthwhile than others.”

Canada’s monitoring system has failed to identify when injustices like Alan Nichols’ death take place. This is in part because Canada only asks the three or four medical professionals who played an active role in a particular death to report on their participation. There is no space for direct reporting from the person seeking an assisted death or for families to share their experiences. Catherine Frazee is correct in raising that “we have no way of knowing how many might have been in situations similar to Alan” and this is deeply concerning.

There is an urgent need for Parliament to provide clear guidance on the reasonable foreseeability of natural death criteria. Therefore, the Attorney General must appeal the Truchon and Gladu decision to ensure that vulnerable Canadians are not at risk both within the medical system and society at large. What is at risk if Canada doesn’t appeal Truchon and Gladu? Ask Alan Nichols’ family.

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Marc Muschler, Senior Communications Officer, Canadian Association for Community Living. Ph: 416-661-9611 ext. 232 or Email: mmuschler@cacl.ca

The Canadian Association for Community Living is a Canada-wide association of family members and others working to advance the human rights and inclusion of persons of all ages who have an intellectual disability. Founded in 1958 by parents of children with intellectual disabilities who wanted supports and services within the community instead of in institutions, CACL has become one of Canada’s ten largest charitable organizations, and has grown into a federation of 10 provincial and three territorial associations comprising of 400 local associations and over 40,000 members. Find out more at www.cacl.ca.


Landmark Supreme Court Ruling Helps to Secure Financial Future for Persons with Disabilities

TORONTO, ON – In a 7-2 split decision, this past Friday in the case of S.A. v. Metro Vancouver Housing Corp, the Supreme Court of Canada overturned British Columbia’s Court of Appeal’s decision on discretionary (Henson) trusts. In doing so, the court has set a precedent that will serve to shield the rights of persons with disabilities and helps to reduce poverty.

Discretionary trusts are used by parents and family members of persons with intellectual disabilities to provide financial security for their loved ones. The court decided that discretionary trusts should not be considered assets when determining income levels because the beneficiary cannot unilaterally force the trustees to make payments.

The appellant in the case was an individual with a disability living in a Metro Vancouver Housing Corporation (MVHC) complex. They were required to provide income verification every year as part of their application for rental assistance. In 2015, MVHC declined to approve the appellant’s application after learning that they were the beneficiary of a Henson trust. The Supreme Court ruled a Henson trust could not disqualify the appellant from being considered by MVHC for rental assistance.

The central issue in the appeal was whether assets in a Henson trust could be considered assets to assess an individual’s eligibility to receive social assistance benefits. This issue is of importance to people with disabilities as Henson trusts are a common estate planning tool used by families to ensure that their loved ones have a measure of financial security and autonomy after their death.

People First of Canada (PFC) and the Canadian Association for Community (CACL) served as co-intervenors advocating on behalf of the many persons with disabilities, and their families who regularly rely on discretionary (Henson) trusts as a tool to combat the systemic disadvantage and poverty persons with an intellectual disability face when their parents die.

Shelly Fletcher, Executive Director of PFC, responded that “For many of the people with disabilities that make up People First, discretionary trusts provide a modest level of financial stability after family members have passed away. But it isn’t like these folks are sitting on excess funds that can be used at their discretion. It is always encouraging when people with disabilities are heard – and today it feels like People First was heard loud and clear at the Supreme Court.”

“People with disabilities continue to face barriers in their participation as equal members of Canadian society. There is still more work to be done, but today we will celebrate,” said Joy Bacon, President of CACL.

This ruling does help, but it does not eliminate the need for good public policy that addresses the longstanding poverty of people with an intellectual disability, the barriers they face, and issues they encounter before and after their parents die.

The full text of the case is available here.

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Media Contact: Kurt Goddard, Director of Public Affairs, CACL, kgoddard@cacl.ca

 

CACL is composed of ten provincial and three territorial associations, with over 400 local associations spread across the country and more than 40,000 members. CACL leads the way in helping Canadians build an inclusive Canada by strengthening families, defending rights, and transforming communities into places where everyone can belong. PFC is a self-advocacy organization with a membership made up of people who have been labelled as having intellectual disabilities and has approximately 3,300 members nationwide. 


Canada's First Poverty Reduction Strategy Promising for People with an Intellectual Disability

TORONTO, ON – The Canadian Association for Community Living (CACL) welcomes the release of Opportunity for All – Canada’s First Poverty Reduction Strategy and its significant focus on social inclusion and the tremendous potential it appears to offer persons with an intellectual disability.

CACL looks forward to the implementation of the Strategy and to working with the Government of Canada over the coming months and years. It is critical for government infrastructure to maximize the effectiveness of its investment. As the Poverty Reduction Strategy and its various initiatives unfold, we encourage the Government of Canada to keep the lived experience of people who have an intellectual disability in mind and included.

“Persistent poverty remains, and it can only be addressed by both income and disability-related supports,” said Joy Bacon, President of CACL.

Some indicators of an approach inclusive of persons with an intellectual disability could include – but are not limited to – representatives from the intellectual disability community on the advisory council, up-to-date data on persons with a disability within the Strategy’s Gender-based Analysis Plus (GBA+), and the inclusion of current out-of-pocket expenses that persons with a disability spend to be added to Canada’s Official Poverty Line calculation known as the Market Basket Measure. CACL is pleased to see that the Canada Income Survey will be designed to be able to report on income and disability. We strongly recommend that sufficient data be collected to be able to track progress by type and range of disability.

In addition, CACL hopes that the Government of Canada takes leadership with its provincial and territorial partners to ensure that Canada’s first national Poverty Reduction Strategy is implemented to its fullest potential.

“It is critical to know we are making a difference. CACL remains committed to exploring and advancing conversations about the unmet needs for income support for persons with an intellectual disability,” said Krista Carr, Executive Vice-President of CACL.

CACL welcomes the focus of the strategy on inclusion and looks forward to working with the Government of Canada. We also echo Mile Corak’s, Economist in Residence at Employment and Social Development Canada, forward in the Strategy that, “Credit is due, not when budgets are spent, but when outcomes we care about are efficiently and effectively achieved.”

CACL is composed of ten provincial and three territorial associations, with over 400 local associations spread across the country and more than 40,000 members. CACL leads the way in helping Canadians build an inclusive Canada by strengthening families, defending rights, and transforming communities into places where everyone can belong.

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Media Contact: Agata Zieba, Senior Communications Officer, CACL, azieba@cacl.ca.


Law Commission of Ontario Rejects Proposals to Advance Rights of People who have an Intellectual Disability

On March 8, the Law Commission of Ontario released its long awaited Final Report on Legal Capacity, Decision-Making and Guardianship. The report goes to some length to flatly reject detailed proposals it received from the Coalition on Alternatives to Guardianship, which includes Community Living Ontario, People First of Ontario, People First of Canada and the Canadian Association for Community Living. For over 25 years, the Coalition has called on governments to provide an alternative to guardianship because for so many people it stands as a fundamental violation to their human rights, a reality the United Nations acknowledged over a decade ago. Guardianship removes people’s power over their own lives.

The Coalition recommended the Law Commission of Ontario recognize supported decision-making as one option for situations where people are unable to make personal decisions independently, and we provided a comprehensive draft statutory framework developed by legal experts.

“The reforms we put forward would give legal recognition to what so many people and families now do in practice, which is interdependent decision-making guided by a person’s will and preferences,” said Chris Beesley, Chief Executive Officer of Community Living Ontario.

Supported decision-making is legally recognized in British Columbia, the Yukon, Manitoba and increasingly in jurisdictions around the world. As well, it has been recognized in the UN Convention on the Rights of Persons with Disabilities, which Canada ratified in 2010.

“The Law Commission failed Ontarians who have an intellectual disability and their families, because everyone should be able to have power over their own lives, regardless of whether they need support or not,” said Kory Earle, President of People First of Canada. “The reality is that many people who have an intellectual disability cannot even change their address with the Canada Revenue Agency or open a Registered Disability Savings Plan without a guardian being appointed. We’re asking the Government of Ontario to follow the lead of other provinces and territories by providing a third option, so that we have more of a say when we go to the bank, speak with our doctor or participate in the community in other ways.”

The Coalition has recommended a series of robust safeguards to protect people under supported decision-making, including specified commitments by supporters, enabling the appointment of monitors, notification of a supported decision-making arrangement being put into place, measures to investigate situations of harm, abuse or neglect, and the creation of a special tribunal to consider complaints and to mediate disputes among supporters and individuals.

“The Law Commission adopted all these recommendations, but only for those under powers of attorney. It says it would be too complex to extend these safeguards to supported decision-making, where people are not able to appoint a power of attorney. Instead, it calls for more research,” stated Brendon Pooran, Principal at PooranLaw Professional Corporation. “I receive calls from families every day in my practice looking for an alternative because their son or daughter cannot appoint power of attorney and the costs and complexities of guardianship, not to mention that it removes their family member’s legal personhood, rightfully prevent people from pursuing that option. People who have an intellectual disability should not be required to forfeit their right to make their own decisions due to gaps in our legislative framework.”

Extensive studies on supported decision-making have been conducted in Canada and internationally, the practice has been in place in other provinces for years, and it is recognized by the United Nations. As far back as the early 1990s, the Coalition has called on the Government of Ontario to include the option of supported decision-making when the Substitute Decisions Act was first introduced. At that time, it was the government who called for more study.

In response, Community Living Ontario developed detailed proposals and the Canadian Association for Community Living also produced a major report titled Alternatives to Guardianship. However, the government failed to act on any of the recommendations. Since then, calls have grown in Ontario to introduce supported decision-making, including from the Ontario Legislature’s Select Committee on Developmental Services in its 2014 Report. We trust Premier Kathleen Wynne and Attorney General Yasir Naqvi will finally take the necessary leadership, go beyond the Law Commission of Ontario’s far too limited vision, and enact significant and meaningful change to at least recognize the rights of all Ontarians to inclusion, citizenship and equal respect for the right to legal capacity.


The Passing of Disability Champion Dianne Pothier: A Letter from EVP Michael Bach

Dianne Pothier, leading expert on constitutional law and a long-time champion of disability rights, passed away unexpectedly January 3rd 2017 at home in Halifax, NS. The following is a letter to the Community Living movement and its allies from CACL EVP Michael Bach.

It is with such a profound sense of loss and sadness that I share the news of the sudden and unexpected passing of Dianne Pothier.

Dianne was instrumental in helping to draft the Vulnerable Persons Standard. Catherine Frazee and I reached out to her last January as we started to design the VPS and consider the legal and ethical arguments for robust safeguards. Dianne taught for a number of years at the Dalhousie University Schulich School of Law, and brought a keen mind, brilliant insight and analysis, and prodigious publication. As Canada’s leading disability rights scholar she leaves an immense and invaluable legacy for disability rights legal theory and practice.

Read more at CACL