Medical Assistance in Dying was legalized under strict conditions in Canada in 2016.

Given that:

People with intellectual disabilities regularly confront barriers to accessing the disability supports needed to live a quality life – in particular, income supports, assistive technologies, homemaking and personal supports, inclusive education, training and employment supports, and appropriate community-based mental health supports;

People with intellectual disabilities are marginalized in Canadian society through significantly higher than average rates of poverty, social isolation, lack of affordable and accessible housing, homelessness, unemployment and exclusion from the labour force, inaccessible health care, and violence and abuse;

People with intellectual disabilities experience widespread discrimination in society based on prejudice and negative stereotypes which commonly devalue their abilities and lives, including from some medical professionals and healthcare ethicists whose discriminatory views about disability can influence their judgement and behaviour;

In Canadian society, disability is closely associated with suffering which can make a person with an intellectual disability’s desire to die seem reasonable and natural to others; and,

All of these factors result in higher rates of suicidality for people with intellectual disabilities than in the general population.

And with the understanding that:

Federal and Provincial governments in Canada must actively protect the equality rights of persons with disabilities including intellectual disabilities.

The United Nations’ Special Rapporteur on the rights of persons with disabilities has called upon Canada to affirm a rights-based approach to disability supports.

Measures are required to counteract stigma and exclusion, encourage self-esteem and self-confidence, and promote a positive public perception of persons with disabilities.

Federal and provincial governments in Canada must avoid sending a message that having a disability is an acceptable reason to be put to death. Lives featuring disability, frailty, and suffering can be lives worth living.

Many persons with intellectual disabilities can give legal consent on their own for fundamental medical decisions, including medical assistance in dying.

Many persons with intellectual disabilities experience coercion and pressure to please others or to not be a burden.

Inclusion Canada is of the view that Canada’s Medical Assistance in Dying laws must:

Restrict access to those at the end of their natural life whose suffering is intolerable and cannot be alleviated by any acceptable means.

Require that requests originate only from the person seeking an assisted death and be unprompted and unequivocal.

Guarantee the opportunity for a person to change their mind and withdraw their request at any point prior to the administration of an assisted death.

Require free and informed consent from the person seeking an assisted death, without coercion or undue influence, and provide for the communication supports necessary to facilitate consent. Consent must be consistently re-affirmed over time.

Promote holistic care by engaging with a diverse array of experts including those who have authority to advocate for better social and disability supports, and, wherever possible, persons who are familiar with the individual seeking an assisted death.

Require exploration with the person requesting medical assistance in dying of physical, social, spiritual and psychological factors that may underlie their suffering, and ways these could be alleviated.

Ensure that medical assistance in dying be authorized only as a procedure of last resort, after alternative courses of action, including palliative care, appropriate disability supports, and respite services have been made available.

Establish a comprehensive monitoring system that captures:
– The nature and source of a person’s suffering and their reasons for requesting medical assistance in dying.
– The voice of persons seeking access to assistance in dying, and their families and support systems where appropriate (rather than relying on the reporting of medical practitioners alone).
– Demographics: socio-economic status, race, gender, sexuality, indigeneity, age, mental illness, and disability, in such a way that intersectional marginalization can be tracked.

This paper is about medical support to help people die. This paper outlines what Inclusion Canada thinks and believes about medical support to help people die.

What is the issue with medical support to help people die?

Since 2016, it has been legal to have medical support to help people die in Canada. There are strict rules that need to be followed in the law.

Background Information

It can be hard for people with an intellectual disability to get disability supports. There can be barriers to getting the following kinds of support.

  • Income support
  • Assistive technology
  • Homemaking and personal support
  • Inclusive education
  • Training and employment support
  • Mental health supports based in the community

The following factors contribute to why people with an intellectual disability are not included in Canadian society.

  • They have higher rates of poverty.
  • They have more social isolation.
  • They have less access to accessible housing they can afford.
  • They have more homelessness issues.
  • They have higher unemployment rates.
  • They are left out of the work force.
  • They are not able to access health care.

People with an intellectual disability are not treated fairly in society. They are treated differently than people without disabilities. Their abilities are not valued. Their lives are not valued. Many people view disability in a negative way. This includes some medical staff, like doctors or nurses. It also includes the people who make the rules for health care.

Negative views can have an effect on people. It can affect how they judge people with disabilities. It can affect the way they behave towards people with disabilities.

Many people have a negative view of disability. They think that having a disability means that people are ‘suffering’. This can make the desire to die make sense to others.

All of these factors have an effect on people with an intellectual disability. These factors also affect the suicide rate of people with an intellectual disability. They have higher rates of thinking about suicide than other people. They have a higher rate of trying to die by suicide than other people.

Information that we know to be true

  • The governments of Canada must protect the rights of people with disabilities. This includes people with an intellectual disability. The rights of people with disabilities must be the same as the rest of society.
  • Canada has to use an approach to disability supports that is based on rights. The United Nations has called on Canada to confirm that the country will do this.
  • There needs to be work done on the public view of people with disabilities. The negative view of disability needs to be changed. There needs to be more positive messages about disability. People with disabilities need messages that encourage them. They need messages that build their esteem and confidence.
  • All levels of governments in Canada must send the same message. The message is that having a disability is not a good enough reason to get help to die. People with a disability have lives worth living. So do people who are frail or who are suffering.
  • Many people with an intellectual disability can give legal consent on their own. They can make their own medical decisions. This includes decisions like asking for help with dying.
  • Many people with an intellectual disability are forced or pressured to do things they may not want to do. They may do this to please others. They may ask for help to die so they won’t be a burden to others.

Inclusion Canada believes that access to medical support to help people die must respect the rights of people with a disability

Inclusion Canada believes that access to medical support to help people die must respect the rights of people with a disability. That can happen by taking the following actions.

  • Limit access to medical support to help people die to those at the end of their natural life. Make sure it is for people who are suffering a great deal and will not improve.
  • Require that the request for medical support to help people die comes only from the person wanting to die. Make sure the request was not made under pressure. Make sure the request is clear and obvious.
  • Require that people are given the chance to change their mind. Make sure they can take back their request at any point before the medical support to help them die starts.
  • Require free and informed consent from the person asking for medical support to die. Make sure people really agree with the request to die. Make sure they are not being pressured or pushed into the decision. Make sure the person has the supports needed to give consent. This may be communication supports. Make sure the person continues to agree to the request over time.
  • Make sure lots of care options are considered for the person. Connect with many different experts who provide care. Include those who have the power to advocate for better supports. Connect with other people who know the person, if possible.
  • Require a deeper look into the person who is asking for help to die. Look at other factors that may cause their suffering. These could be physical or social factors. Or they could be spiritual or have to do with the person’s mind. Look for ways to improve their suffering in these areas.
  • Make sure that medical support to help people die is only approved as a last resort. Before medical support to die, make sure different kinds of supports are available to the person. This could be end of life care. Or it could be disability supports or respite services.
  • Make a good system to monitor medical support that helps people die. Make sure the system gets the following kind of information.
    • How and why a person was suffering. What reasons they gave for asking for help to die.

Tracy Latimer: 25 Years Later

October 24th, 2018 marks the 25th anniversary of Tracy Latimer’s death by homicide. On this day in 1993, 12-year-old Tracy would be loaded into the cab of her father (Robert Latimer)’s truck. Mr. Latimer would run a hose from the exhaust pipe into the cab, and start the engine. Tracy died by carbon monoxide poisoning. … Continued

PRESS RELEASE: Canada’s Medical Assistance in Dying Regulations Fall Short

Click here for French press release. FOR IMMEDIATE RELEASE September 4, 2018 TORONTO – Inclusion Canada and the Council of Canadians with Disabilities (CCD) strongly call on the federal government to strengthen the monitoring system for medical assistance in dying (MAiD). As they stand, the just-published MAiD regulations to come into effect November 1, won’t … Continued

People with an intellectual disability have access to quality healthcare, including mental health services, on an equal basic with other free from bias and discrimination.

Our Objectives for 2024

  • Successfully influence the review of Canada’s medical assistance in dying legislation to protect the rights of people with disabilities.
  • Identify and promote solutions to address the inequities, experienced by people with an intellectual disability and their families in accessing healthcare during the pandemic.
  • Proactively work with partners to advance access to mental health services for people with an intellectual disability and their families.
News and resources from the Vulnerable Persons Standard
Monitoring Matters - Vulnerable Persons Standard
Discussion Paper and Draft Position Statements of Issues of Assisted Suicide and Genetic and Testing Technologies
Must Medical Practitioners Refer for Medical Assistance in Dying (MAiD) Under Canada’s Newly Amended Assisted Dying Legislation? A Statement of Principle Grounded in Disability Rights.
Bill C-7 through a Disability Lens
Proposed Amendments to Bill C-7 to Protect the Equality Rights of People with Disability
Voices from the Margins - Perspectives on MAiD from the Disability Community
Nicolas Rouleau - End of Life, Equality and Disability Forum Speech
Nicolas Rouleau - End of Life, Equality and Disability Forum Transcript

An Amendment to Ensure the Rights of Persons with Disabilities: Bill C-7 (French version available here)

Letter: Concern with Expert Panel Composition

PRESS RELEASE: Canadian Mental Health Association Says No to MAiD Solely on the Basis of Mental Illness

FOR IMMEDIATE RELEASE SEPTEMBER 7, 2017 TORONTO – The Canadian Association for Community Living (CACL) welcomes the release of the Canadian Mental Health Association (CMHA) “Position Paper on Medical Assistance in Dying (MAiD)”, which concludes that Canada’s current law should be maintained, restricting MAiD to persons who are already dying. In June 2016, Parliament adopted a legal … Continued

PRESS RELEASE: Mental Health-Related Suicides and Growing Numbers with Dementia Not a Reason to Expand MAID

FOR IMMEDIATE RELEASE April 18, 2017 TORONTO – Members of Inclusion Canada are saddened to learn about the suicide of Adam Maier-Clayton, a young man who struggled with mental health issues and was an advocate for access to assisted suicide or what is known in Canada as medical assistance in dying (MAiD), solely because of … Continued