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.


CUPE Manitoba, Inclusion Winnipeg, Inclusion Westman, Children’s Coalition Keep Education Assistants and Support Staff Employed During the COVID-19

Manitoba – Workers and disability advocates are calling on School Divisions to keep Education Assistants (EAs) and other support staff on the job during the COVID-19 crisis.

“Education Assistants are providing critical support to children with disabilities during the COVID- 19 virus crisis,” said Janet Forbes from Inclusion Winnipeg.

“The COVID-19 virus puts children with disabilities at greater risk due to existing health conditions, reliance on outside support and disruptions to daily routines.”
“Families are more isolated than ever and there is so much work that needs to be done to support those children and their families who may not be used to instruction from home.”

As the union that represents 5,000 school support staff in twenty-four school divisions across Manitoba, CUPE is ready to work with School Divisions to help ensure there are no layoffs to Education Assistants and other support staff.
“CUPE has reached out to School Divisions to see how we can work together to help EAs either work remotely from home or find creative ways to support their students during this crisis,” said CUPE Manitoba President Abe Araya. “With so many students studying at home, we need a strong, fully-staffed education system to get these students the support they need.”

“It is important that all students have access to the supports they require to learn at home during this time,” said Amanda Hamm of Inclusion Westman. “We know that Education Assistants have a role to play in providing this needed support especially in terms of supporting students with additional needs. We are calling on schools to provide this consistent support to all students so they can continue their learning at home.”

In a letter to School Superintendents, the Education Minister suggested that “savings generated as a result of the closures of schools must be held in a separate account”. It is CUPE’s position that this is not a time to generate savings, rather it’s a time to support staff and be creative.

“School Divisions in Manitoba have already budgeted for their staff for the year, and those staff need to be focused on helping students succeed,” said Araya. “Many students and their families face additional challenges working remotely, and addressing those challenges cannot happen without school support staff.”
This position is also endorsed by the Children’s Coalition, an advocacy organization for children with disabilities.

CUPE Manitoba represents approximately 5,000 education support staff in twenty-four school divisions across Manitoba, including EAs, custodians, maintenance and trades, secretaries, library techs, mechanics, bus drivers, international student support, school liaisons and more.

Inclusion Winnipeg is a registered charity which, for 60 years, has been dedicated to making life better for children and adults living with intellectual disabilities.

Inclusion Westman is a not-for-profit organization committed to enriching the lives of people who live with an intellectual disability in the Westman region by promoting their full inclusion in the community. The work we do benefits not only the individuals with intellectual disabilities and their families, but the community in which they reside.

The Children’s Coalition is a network of organizations which exists to unite the voice of families in matters that have a direct impact on their supports and services. The Coalition is committed to working in partnership with community-based agencies and government departments including Family Services and Housing, Education, Citizenship and Youth, and Health, to achieve a coordinated network supporting the full inclusion in community life of children with disabilities and their families.

Contact:
Abe Araya, President, CUPE Manitoba – 204-509-5923
Janet Forbes, Executive Director, Inclusion Winnipeg – 204-953-5876
Amanda Hamm, Executive Director, Inclusion Westman – 204-573-1210
David Kron, Chairperson, Children’s Coalition – 204-250-4226

Support Letter from Trustee Chen

Inclusion Safety Bulletin: Social Distancing

Dear friend of Inclusion,

Inclusion Winnipeg produces “inclusion information bulletins” to draw your attention to important issues that impact children and adults with intellectual disabilities. Bulletins are fact-based and provide background for you to understand an issue in more detail.

1. ISSUE: For people with intellectual disabilities, COVID-19 is a serious risk due to pre-existing health conditions, a reliance on outside support, a lack of understanding of new requirements and congregate living arrangements. “Social distancing” is the best way to reduce the spread of viruses like COVID-19. Also called “physical distancing” it means changes to our day-to-day lives to minimize close contact with others, whether we know them or not (source: Province of Manitoba).

2. ACTION:

  • Call, email, text, face-time and send a message to a loved one today.
  • Make sure they know all about “social distancing” and how to keep themselves safe.
  • Reinforce these messages

(source Province of Manitoba):

Province of Manitoba: https://www.covid19manitoba.ca/social-distancing?fbclid=IwAR37xVx27WftjtV21dwIq1RWmfROXSAWQmhlPPyW_QQBa08_p1XpJ_rHFbg

3. SHARE YOUR THOUGHTS WITH INCLUSION WINNIPEG:

Please send us your thoughts on this via email to info@inclusionwinnipeg.org.

4. BACKGROUND: Please find below credible information about “social distancing”:

Public Health Agency of Canada
Plain language COVID-19 explanation
Plain language for caregivers and families from the Canadian Association of Community Living

Please stay healthy and be socially creative while keeping your physical distance from each other. We are all in this together.

PDF version of bulletin

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.


Volunteer Opportunity - Winnipeg Blue Bombers & Inclusion Winnipeg

The Winnipeg Blue Bombers have chosen Inclusion Winnipeg to run one of their concession stands during the ten home games this season!
For our efforts, we will receive a percentage of the sales from our stand for each game. This is a great fundraising opportunity and we need your help.

Join a core team of dedicated volunteers to help at the games

Volunteers must:

  • Be 18 years or older
  • Be able to work 5 or more of the games
  • Pass the online serving it safe course
  • Attend a two-hour orientation prior to the first game

Volunteer roles

Cooks: grilling, simple food assembly, basic food safety and sanitation. Two of the cooks will also need their food handler’s certificate. all cooks will need to attend the two-hour Cook Orientation on Saturday May 25th at either 11:00AM or 2:00PM

Cashiers: serve orders, money handling, beer service, inventory and clean up. Our 2 lead cashiers will need to attend the Cashier Orientation on Thursday May 23rd at 6:00PM

The fees for the Serving it Safe and Food Handlers certificate will be covered by Inclusion Winnipeg.

Game Dates

Friday, May 31st @ 7:30pm
Thursday, June 27th @ 7:30pm
Friday, July 12th @ 7:30pm
Friday, July 19th @7:30pm
Thursday, August 8th @ 7:30pm
Thursday, August 15th @ 7:30pm
Saturday, September 7th @ 3:00pm
Friday, September 27th @ 7:30pm
Saturday, October 12th @ 3:00pm
Friday, October 25th @ 7:30pm

When registering, please let us know which role you are interested in and the dates of the games you would be able to attend.


Federal Budget continues Ready, Willing, and Able Across Canada

OTTAWA, ON – Federal Budget 2019 commits a $12 million investment to Phase 2 of the Ready, Willing, and Able program (RWA). RWA is a national employment program for persons with intellectual disabilities or Autism Spectrum Disorder (ASD). The Government of Canada has made a 3-year investment in RWA to continue its work with employers and community agencies across the country to generate employment opportunities for people with intellectual disabilities and ASD.

In response to the budget news, Cynthia Carroll, Chairperson of CASDA said, “This signals the government’s commitment to an inclusive and accessible Canada. This investment allows RWA to continue working toward the vision of an inclusive and effective labour market with an employment rate for people with intellectual disabilities and ASD on par with the national average.”

Based on outcomes and evaluation, the award-winning RWA is one of the most successful national employment initiatives of its kind in the history of the country. It has drastically changed the quality of life for persons with an intellectual disability or autism and has supported a more competitive labour market in Canada.

Krista Carr, Executive Vice-President of CACL, declared, “We are grateful for this investment from the federal government, which will allow us to continue to demonstrate that with targeted support, community involvement and employer leadership, job seekers with an intellectual disability or ASD can obtain and retain employment within the labour market. Real work for real pay.”

RWA has brought real outcomes and has empowered thousands of job seekers with an intellectual disability or ASD who previously were unable to enter or remain in the competitive labour force while providing employers with a source of talent that was previously overlooked. Recognizing the government’s strong commitment to supporting persons with disabilities, the funding announced in Budget 2019 for RWA will ensure this critical initiative continues to contribute to an inclusive and accessible Canada. We look forward to continued conversations with the government to expand and grow RWA.

Please visit http://readywillingable.ca/ to learn more about the Ready, Willing, and Able initiative and keep up-to-date as Phase 2 is rolled out across the country.

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

About the Canadian Association for Community Living

CACL is composed of ten provincial and three territorial associations, with over 400 local associations 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.

About the Canadian Autism Spectrum Disorders Alliance

The Canadian Autism Spectrum Disorders Alliance (CASDA) is a coalition of organizations and individuals developing a comprehensive National ASD Framework. CASDA is committed to ensuring the implementation of a comprehensive National ASD Strategy that addresses critical gaps in funding and policies, which are preventing individuals with ASDs and their families from exercising their equal rights as Canadians. CASDA includes over 55 national, provincial, and local autism organizations as well as individual members.