This week, we have Kerri Joffe and Laurie Letheren, lawyers at ARCH Disability Law Centre (“ARCH”). ARCH is a specialty community legal clinic dedicated to advancing the equality rights of people with disabilities. ARCH provides free and confidential legal advice, engages in law reform, provides public legal education and provides some legal representation. An important objective of our work is to help Ontarians with disabilities live with dignity and participate fully in our communities.
1. The law in Ontario (Health Care Consent Act) says that doctors should approach their work from the starting place that people are capable of making their health decisions (“presumed capable”). In your experience, does this happen for young people with disabilities? If not, why not?
Even though the law says that doctors must start with the belief that no matter what age you are, you are capable of making your own decisions about your health care doctors will often speak to your parents or guardians about your health care rather than directly to you. If you are a young person with a disability, you might often be excluded from decisions about your own health care.
Like many people, doctors often wrongly believe that young people cannot understand all the medical information they need to decide about a medical treatment or that young people cannot understand the benefits or risks of a treatment. If you are a young person who has been labeled as being a person with a mental health or intellectual disability or if you communicate using symbols and gestures rather than your voice, it is even more likely that a doctor will wrongly believe that you cannot make your own decision about your health.
Doctors also may be concerned that if they only speak to you and not your parent or guardian, someone might later make a complaint about them or try to sue them because the doctor treated you and the person making the complaint might try to prove that you were not capable of making such a decision on your own.
2. What are some other ways that young people with disabilities experience discrimination when it comes to making decisions about their health and bodies and what needs to change in order for young people with disabilities to realize their health rights?
Young people with disabilities often experience discrimination when health professionals assume that because of your age and disability you are not capable of make a decisions about your health for yourself. Many times you are not even part of the discussion about your health or are not allowed to participate in decisions about your health and treatments. If this happens, your parents or guardians and the doctors could make a decision about your health and your body that you do not agree with.
Young people with disabilities sometimes also experience discrimination because they not even considered for some types of treatments. For example, a young person with autism might not get the heart or kidney transplant they need. This happens because the people who make decisions about transplants think that the young person with autism does not have much quality of life and so the decision is made to give the heart or kidney to another young person without a disability.
Another way that young people with disabilities experience discrimination is when they try to ask a health professional some questions about sexual health. If you are a person who has been labeled as someone with a mental health disability or an intellectual disability you might find that your doctor will not talk to you about safe sex practices or birth control without first speaking to your parent or guardian. Again, the doctor’s refusal to talk to you is often based on the doctor’s wrong belief that you cannot make good decisions about your sexual activities or understand the consequences of your sexual activities. Also some doctors may not give a young person with a disability the same information about sexual health that they would give a person without a disability. This happens because some doctors assume the people with disabilities should not be or have no interest in being sexually active.
If young people are going to be able to have their rights about making their own health care decisions respected, they are likely going to have to work to change their doctors’ beliefs about the capacity of young people to make such decisions for themselves. You are going to have to stand up for yourself and insist that even if your parent or guardian is present, you have a chance to ask the doctor questions and get the information from your doctor. You have to make sure your doctor understands that you know you have a right to make your own decisions. Tell your doctor that you want to either make that decision without your parent or guardian or that you want to participate in the decision. Make sure your doctor takes the time to understand you and understand how you make decisions. If you are a person who communicates without using your voice, make sure the doctor lets you ask and answer questions in the way that you communicate and does not just speak to your parent or guardian.
3. What does the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) say about the rights of people with disabilities to make health decisions and to be free from unwanted treatment? In your view, how does this change how we (service providers, advocates, etc.) think about our work?
The United Nations Convention on the Rights of Persons with Disabilities was the first human rights convention of the 21st century. It is an international law that affirms that people with disabilities enjoy all human rights and fundamental freedoms, including the right to be free from discrimination, the right to live independently and participate in the community, and the right to make decisions based on free and informed consent.
There are several articles in the Convention that relate to health care rights.
Article 17 states that every person with a disability has a right to respect for his or her physical and mental integrity on an equal basis with others. Respect for physical and mental integrity means the right not to be interfered with. Disability organizations have explained that Article 17 establishes the right of people with disabilities to refuse medical or other interventions that they consider harmful or do not want, despite the opinions of medical professionals.
Article 25 provides people with disabilities the right to the highest attainable standard of health without discrimination on the basis of disability. The article states that countries must ensure that health professionals provide care on the basis of free and informed consent. In order to do this, some of the steps that countries must take include raising awareness of the human rights, dignity, autonomy and needs of people with disabilities through training and promotion of ethical standards for public and private health care.
Article 12 states that countries must recognize that people with disabilities enjoy legal capacity on an equal basis as others. Legal capacity is the ability to make decisions and take actions that are recognized by law and can be enforced. People with disabilities have the right to make decisions, including health care decisions, unless there has been a finding that they are not mentally capable of doing so.
Article 15 says that no one shall be subjected to torture, cruel, inhuman or degrading treatment or punishment. It also says that no one shall be subjected to medical or scientific experiments without his or her free consent.
Canada ratified the Convention on March 11, 2010. By ratifying, Canada bound itself to the Convention and assumed responsibility for ensuring that Canadian laws, policies and practices are consistent with the rights that are set out in the Convention.
The disability community already monitors the actions that the federal and provincial governments take in relation to the Convention and encourages government to implement the Convention into Canadian law and policy. It is important that service providers, advocates and others who work with people with disabilities support the community in these efforts. Service providers and advocates can use the Convention as an advocacy tool by challenging laws, policies or practices that go against the rights in the Convention. Organizations can raise awareness and educate people with disabilities and the broader community about the Convention. Service providers should review their policies and practices to make sure that these are consistent with the rights that are set out in the Convention.
4. Can you tell us about supported decision making?
Supported decision-making is type of decision-making in which one or more support persons assist a person with a disability to exercise his or her legal capacity to make decisions. Legal capacity is the ability to make decisions and take actions that are recognized by law and can be enforced. Article 12 of the United Nations Convention on the Rights of Persons with Disabilities recognizes that people with disabilities have legal capacity on an equal basis as others. This means that a person cannot lose his or her legal capacity just because he or she has a disability. Article 12 recognizes that some people with disabilities need assistance and support in order to exercise their capacity to make decisions. Sometimes one support person will provide this assistance and sometimes a support circle or a network of people will do so. The support person(s) may help to explain to the person with a disability what kind of decision needs to be made, why it is important, and what information is relevant to the decision. The support person(s) can use language and concepts that are accessible to the person with a disability. The support person(s) may help to facilitate communication by interpreting the gestures, signs or sounds of the person with a disability. There are many other ways in which people with disabilities can be supported to make decisions.
A very important aspect of supported decision-making is that the person with a disability, not the support person(s), is the decision-maker. This makes supported decision-making different than substitute decision-making, which allows someone else to make decisions on behalf of a person with a disability when the person with a disability is not capable of making decisions for him or herself. In Ontario and most other provinces and territories in Canada, there are several laws that set out when substitute decision-making is allowed and who is allowed to act as a substitute decision-maker in specific situations. Supported decision-making has not been explicitly recognized in law in most Canadian provinces and territories.