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This booklet was produced with a grant from the Alberta Law Foundation © Copyright the MS Society of Canada. All rights reserved. Advocacy This
guide is aimed at providing you with information on how to deal with issues that are
important to people with disabilities. We
will be looking at general suggestions for effective self-advocacy. As well, we will take a look at information that
may help you when you are dealing with the legal system, medical system and political
system. It
is important to know what advocacy is and how to advocate because of the historical
labelling of people with disabilities and the belief that they could not contribute to, or
be productive in, society. Today, we know
that people who have disabilities do contribute and are productive, important members in
all aspects of society. Advocating for yourself is an important step in educating others and achieving equality.
III. The Legal System
When Would I Be Involved with
the Legal System? IV. Medical System V. Political
System
There
are different definitions of advocacy, depending on the context in which you are using the
word. For example, advocacy in a legal
context has a different meaning from advocacy in a political context. We are using a broad definition that applies in
all situations. For
the purposes of this guide, advocacy means standing up for the things in which you
believe. Advocacy is sometimes divided into
two types: systemic advocacy and individual advocacy. Systemic
Advocacy Systemic
advocacy, also referred to as social action, includes efforts aimed at changing
legislation, policies, practices, opportunities or attitudes. It is directed at making changes in the system
that will have an affect on the lives of a group of people. Individual
Advocacy Individual
advocacy includes efforts aimed at supporting, empowering or acting on behalf of an
individual. Sometimes viewed as “going to bat” for a person, individual advocacy
helps where one feels he/she has not been treated as he/she should have been. What is an advocate? An
advocate is someone who speaks up for others. In
the case of both systemic and individual advocacy, it is the person assisting the person
with a disability. The assistance may be as
simple as finding information or it may be as involved as attending a hearing with the
person. What is a self-advocate? A
self-advocate is someone who speaks up for him/herself.
You take
the steps needed to achieve your goal, whether it is to get information, obtain a service,
or change a policy. You may not necessarily
be acting alone, but you have an active role in initiating and moving along the process. Keep
the following suggestions in mind throughout the advocacy process. Know Your Rights To
be able to speak up for yourself, you must first be aware of your rights. You can find out what your rights are by talking
to others, such as a representative of a disability organization, or by reading materials,
such as government publications. How
you decide to learn about your rights is up to you as there are many sources available. Be sure that the source you use is credible –
that is, it is giving you trustworthy information. Sources
that may seem to be aimed at providing information are sometimes aimed at a different
purpose and you may end up with misinformation. It
is a good idea to confirm information that comes from a questionable source. Rights
are described both as human rights and legal rights.
Most human rights – basic rights that belong to every living person – are
also legal rights – rights guaranteed through the law.
For example, the basic human right to equality is a legal right in Canada. Be Assertive To
be most effective, you will need to be assertive when dealing with others and speaking up
for yourself. Being assertive means standing
up for what you feel and believe, without being passive (letting things happen without
saying anything) or being aggressive (being too forceful or demanding). You need to not let others push you around but you
need to be open to compromise and reason. If
you are too passive nothing will change. If
you are too aggressive, you will have trouble getting the information and assistance that
you need. Focus on What You CAN Do You
know yourself and your abilities best. Where
you have been negatively labelled or treated unfairly, you may start doubting yourself. It is important for you to focus on your
strengths, abilities and your rights. Think
positively! Negative thinking will prevent
you from achieving your goals. If
you know your rights, you should be able to know what you want to achieve. Whether you are seeking to obtain a benefit,
educate others, or get a workplace adaptation, you should know your goal before you begin. If you are advocating without a goal in mind, you
won’t know where to go or what to do. As
well, you won’t know when you’ve reached your goal and you may end up wasting
valuable time and resources. Don’t
think that you need to advocate on your own. Others
not only support you – they will want to help you.
Family, friends, other advocates and other people with disabilities will be
able to provide you with resources and support that can be invaluable. Depending on your goal and the extent of your
disability, you may not need the help of anyone or you may require extensive assistance. Be Organized Being
organized involves a practical approach. For
example, when you are applying for something (e.g.,, a government support), you will have
to fill out numerous forms. Make sure you
have photocopies of everything you submit. If
you talk to someone from a program, write down the name of the person and the date that
you spoke to him/her. Keep all your
information in one place. Being organized in
this sense is critical to being able to advocate for yourself effectively. III. The Legal System Because
people have legal rights that can be infringed, they may find themselves within the legal
system. The legal system is a complicated
environment for many reasons. Legal language
is difficult to understand, especially if you are not trained in the legal field. As well, the legal system is full of procedures
and rules that must be followed in order to achieve some progress. Not knowing these rules can be very frustrating,
especially if the various procedures and rules have not been explained to you. Added to all this is the anxiety that is generally
associated with the legal system. Many
people believe that if you need the help of a lawyer or are involved in a legal issue, you
have done something wrong. That is often not
the case. Where you are trying to have your
rights upheld, you have done nothing wrong. You
are using the justice system for the purpose it was intended. When Would I Be
Involved with the Legal System? As
a person with a disability, you may be involved in the legal system or need a lawyer
where:
As
used in human rights law, discrimination means making a distinction between certain
individuals or groups based on a prohibited (expressly forbidden) ground. Under the Canadian Human Rights Act, one of these prohibited
grounds is mental or physical disability, which includes previous or present drug or
alcohol dependence. Under the Human Rights, Citizenship and Multiculturalism Act (Alberta),
discrimination on the basis of mental or physical disability is also prohibited. For
Albertans, both these acts apply. The Canadian Human Rights Act applies to areas for
which the federal government has responsibility and the Act applies throughout Canada. In Alberta, the Human Rights, Citizenship and Multiculturalism Act
applies to areas for which the Alberta government has responsibility and the Act applies
only in Alberta. Other provinces have
similar legislation that applies to that province only.
Examples If
you are flying on a national airline and the plane does not accommodate your wheelchair,
you could file a complaint under the Canadian
Human Rights Act, as national airlines are an area for which the federal government is
responsible. If
you are asked to give information about whether or not you have a disability on a job
application for an Alberta company and there is no reason why the job would require such
information, then you could file a complaint under the Human Rights, Citizenship and Multiculturalism Act. This issue falls under the responsibility of the
provincial government. Should I File a Complaint? In
many cases, you may be able to resolve a situation by speaking to the people involved. What might seem at first to be discrimination may
be a misunderstanding. In the case of
workplace discrimination, many employers have policies against discrimination and a
specific person should be contacted if it occurs. Or
there may be a union or company grievance procedure you can follow. In situations where you have been refused a
service, you could complain to the manager. If
these steps don’t get results, you can contact the Canadian Human Rights Commission
or the Alberta Human Rights Commission. Sometimes
they are able to resolve a situation simply by talking to the people involved. If this doesn’t work, you can file a
complaint. Filing a complaint is a
serious matter and should not be taken lightly. If
you do file a complaint that is considered frivolous or is intended only to cause trouble,
you may face charges. The further along in the process you get, the more likely it is that
you will require legal assistance. You should
also be aware that the process could be very lengthy.
See Appendix 1 for how to file a complaint under both the Alberta and
Canadian human rights legislation. Both
Human Rights Acts give protection to people who file complaints and those who may give
information in the process of investigating a complaint.
Anyone who intimidates, threatens or discriminates against someone or who
interferes with an investigation, can face criminal charges. Duty to Accommodate One
of the most frustrating forms of discrimination against people with disabilities is the
failure to accommodate disability in the workplace. Because
people with disabilities may require a workplace modification, employers may not want to
retain or hire them. However, that person may
not only be productive but also the best person for the job. Under
human rights legislation, employers have a legal obligation to take appropriate steps to
get rid of discrimination against employees, prospective employees or clients in the
workplace. This is referred to as the
“duty to accommodate”. This duty
does not apply where it can be shown that the discriminatory practice/ condition is a bona fide occupational requirement (BFOR) or
there is a bona fideO justification. To prove that a practice/condition is a BFOR or is
a bona fide justification, an employer would
have to prove there would be “undue hardship” if made to accommodate. Undue
hardship on an employer is measured in part by costs.
Health and safety are also factors considered.
Basically, the law requires all reasonable accommodation. Even
where a reasonable accommodation is contrary to a collective agreement (in a unionized
setting), an employer is required to implement it. The
duty to accommodate, where reasonable, overrides a collective agreement. If
an employer fails to reasonably accommodate your disability, you can file a complaint with
a human rights commission. If you are
successful, the result could be reinstatement, compensation for lost wages and other
expenses, letters of apology, an order to issue an anti-harassment policy, and/or other
orders the human rights commission sees fit. For
more information on the duty to accommodate, contact your nearest office of the Alberta
Human Rights Commission or Canadian Human Rights Commission (see Appendix 1). APPEALING THE
DECISION OF A GOVERNMENT PROGRAM When
you require income support or any other form of assistance through a government program,
you will have to fulfil different eligibility requirements.
Within government programs, different criteria will apply. What is considered to be a disability in one
program may not be considered a disability in another.
You will have to be familiar with the various requirements of each individual
program. If
you feel you do meet the requirements and you have gone through the process of filling out
the appropriate applications but you have been denied, or you disagree with the amount
given or the date your payment begins, you will have to appeal. To appeal, you must follow the appeal procedures
outlined in the appropriate legislation or regulations.
For example, for Canada Pension Plan disability benefits, appeals must first go to
Reconsideration, then to a Review Tribunal and then, if leave is granted, to the Pension
Appeals Board. These steps must be followed
in this order – you cannot just go to court. In
the more preliminary stages of an appeal you often won’t require legal help. The assistance of family, friends, or another
advocate who is familiar with the program will be sufficient. If the appeal continues on to more formal stages
with more formal panels/boards/tribunals/commissions, you will likely require legal
assistance. DENIAL OF
LONG-TERM DISABILITY Again,
in this situation you may not need the assistance of a lawyer in the initial stages of
applying for long term disability. Union
representatives or benefits workers are there to provide you with assistance. It
is important that you have read and understand your insurance plan. For example, you will need to know whether there
is a statement on “pre-existing condition” as this may affect your eligibility. As well, there may be a clause stating that the
insurance provider has a “right to refuse” or that there can be
“non-compliance with recommended protocols”.
As well, your plan may state that to be eligible you must be unable to do
“any” as opposed to “some” work.
Various conditions may be placed on eligibility. Once
you know what your plan says, you need to provide the right documentation. Getting the right reports and other documents will
allow you to avoid delays and frustration. If
you are denied, you should request written reasons for denial, although unless the plan
says so, the insurance provider is not required to give them. If
you have been denied but you feel you qualify, the assistance of a lawyer may be your best
option. A simple letter from a lawyer to the
insurance company may be sufficient but in some cases it may require more involvement. At this stage you need to weigh the benefits of
obtaining the long-term disability coverage with the costs of continuing legal help. OTHER In
addition to the above situations, you may find you need legal help for issues unrelated to
your disability. For example, you may need to
make a will or want to buy/sell property. Where do I find help? If
you have never needed a lawyer before or do not know a lawyer, you may not know where to
get the legal help you need. You should
actually speak to some lawyers before choosing which one to hire. There are a number of options for finding a
lawyer. If you have access to the Internet,
you can also check out www.extension.ualberta.ca/plena.
Legal Services
Directory You
can find legal help through a number of services throughout the province. You can contact your local chapter of the
Multiple Sclerosis Society or the Alberta Division office toll free at 1-800-268-7582 for
a listing of the names and numbers of general and specific legal services in your area. Lawyer Referral
Service Another
source of legal help that is available in Alberta is the Lawyer Referral Service. This program is offered by the Law Society of
Alberta to help people find a lawyer who will provide them with the legal services they
need. It is an information service that is
not subsidized. You can call toll free
1-800-661-1095 (or 228-1722 in Calgary) and a Lawyer Referral Operator will answer. After describing the nature of your problem the
Operator will give you the names and phone numbers of three lawyers practicing in the
appropriate field. You
can make an appointment with any one or all of the lawyers, making sure to tell them you
were referred to them by the service. There
is no charge for the first half-hour. Afterward,
you can decide whether you would like one of those lawyers to represent you at full fee rates and the lawyer can decide whether
to take your case. Legal
Aid services are provided by lawyers who are willing to act for legal aid clients. Lawyers willing to act are on a list and are
issued certificates for individual cases. Participation by lawyers is voluntary. Before one of these lawyers can assist a client,
he/she must first have a certificate from a Legal Aid office. Eligibility
for legal aid services depends on the nature of your problem and your income. You will be required to pay costs reasonable to
your financial situation. To find out whether
you qualify and the costs you can expect, you should contact your local legal aid office
(see Appendix 1 for contact information). Disability Organizations Some
disability organizations will know of lawyers who are familiar with the issues and who
represent people with disabilities. Internet If
you have access and you are familiar with the Internet, it could be very helpful to you. Many law firms have web pages, as do other
organizations that provide legal assistance and they will tell you what type of work they
do. Phone Listings You
can also look in the phone book under Lawyers. You will have to call those lawyers who you think
may be suitable. When
looking for a lawyer, you should find one that makes you comfortable and who understands
your issue. Some lawyers are very specialized
and others are not. While you can talk to as
many lawyers as you want before choosing, be reasonable.
Talking to too many lawyers may confuse you and take up valuable time. How much will
legal help cost? Lawyers
have different ways of setting the fees they charge.
A lawyer may:
Different
lawyers charge different hourly rates
Lawyers
often cannot predict exactly what their costs will be as each case is different. Some lawyers do what is called “pro
bono” work where they will provide their services for free. What will happen
when I first visit a lawyer? After
you have contacted some lawyers and chosen which one(s) you want to meet with, you will
arrange a first visit. When you first visit a
lawyer, you should:
What should I
expect from my lawyer? The
lawyer should explain the laws that apply to your legal problem. He/she should be able to tell you what your rights
are, what you can expect from him/her and the process you are involved in, what costs you
can reasonably expect and about how long it will take.
It will be difficult to accurately predict exactly what will happen but you should
have some idea. Your
lawyer may not always tell you what you want to hear or be able to do everything you want. The legal system places restrictions and timelines
that lawyers must follow and he/she knows that. What should my
lawyer expect from me? Your co-operation is
essential. You must be honest at all times. You should also be aware that lawyers have other
clients and other commitments too. You need a
lawyer to help you with a legal problem and he/she may not be able to assist you with
other problems you may have. Your expectations should be realistic. For example, he/she cannot provide you with family
counselling. IV. Medical System Advocating
for yourself within the medical system will involve being aware of how the system is
structured and what kinds of problems you will encounter.
Waiting lists, referral rules and changes to the healthcare system may be
frustrating but you will need to be patient and informed. You
will encounter a number of different health care professionals and you should be aware of
what services they can offer you. Your
family doctor is a general practitioner – that is, he/she is able to look after your
general medical problems. He/she takes care
of and often has the best understanding of your overall health. Usually, the doctor is someone you have been with
a long time. He/she also usually treats other
members of your family. For these reasons,
your family doctor plays a significant role in your health care. If
you do not have a family doctor, you should find out which doctors in your area are taking
new patients and you should schedule an appointment to see one. To obtain a list of
doctors that are taking patients in your area, contact the College of Physicians and
Surgeons of Alberta (see Appendix 3). By
providing them with your postal code they can give you a list of doctors taking new
patients in your area. If
you have general health problems or need regular check-ups, you should see your family
doctor. It is important that you are
comfortable with the doctor so that you can avoid switching later. Consistency is an
important factor in getting proper health care. When
looking for a new doctor, consider talking to others for their suggestions. If you do switch doctors, you will need to make
sure your medical history is forwarded to your new doctor. Your
family doctor is also your first contact when you require special treatment or information
for a specific disability or illness. In
order to see a specialist you will need a referral from your family doctor. Your
family doctor can also fill out forms for you, write letters and advocate on your behalf
when necessary. A
specialist is a doctor who has a specific area of medical expertise. For example, a neurologist has specialized
medical knowledge when it comes to nerves and the nervous system. It is unlikely that a doctor will be a specialist
in more than one area because of the education and training that is involved in acquiring
a specialty. You may have to see more than
one specialist depending on your condition. To
see a specialist, you will require a referral from your family doctor, even if the
specialist requests that you come back. If
your specialist actually books the follow up appointment at the time of your last visit,
then you will not need a referral from your family doctor.
Examples of specialists that require referrals include:
The
role of a specialist is to treat you in relation to a specific illness or disability. Only
specialists can prescribe some medications. For
example, if you have multiple sclerosis, your neurologist will be the individual with whom
you would discuss drug therapies, and he/she will be the doctor who can prescribe them. He/she does not become your family doctor and you
should not see a specialist for general health concerns.
The
challenge with seeing a specialist is that because he/she does not know your overall
health, you may need to spend time discussing other aspects of your life and your health
with the specialist. It is important that the
specialist understands how your disability affects your life. Another challenge with specialists is that it will
take much longer to get appointments with them. It
can take as long as several months to see a specialist.
Your
specialist may also fill out forms or write letters for you. You will need to decide which doctor can give the
best information on you and your disability in this case. Knowing What to Do In
recent years there have been many changes to the medical system and such changes will
continue to occur. In order to make your
visit to the doctor as productive as possible, you have a responsibility to be proactive. The following suggestions should help you make the
most out of the medical services provided. When you need to
see a doctor or specialist…
Before your
visit…
During your
visit…
Following your visit…
During
your visit, you may feel anxious or sick and it may be difficult to remember details. Appendix 2 contains a list of questions you may
want to ask your doctor. There is also an
example of a reminder sheet that you or your doctor can fill out to help you remember what
was said during your visit. Health Care
Insurance Part
of understanding how to make the most out of the medical services available to you, is
understanding your health care insurance. When
you have a disability, different provisions will apply to you and your family. You may be able to obtain coverage for aids and
assistive devices but you will have to apply and provide medical proof of your disability. Co-ordination and Consistency When
you are seeing multiple doctors, it will be a challenge to co-ordinate all the information
you get. However, it is important that each
of your doctors understands what the others are doing.
It will be up to you to make sure they are informed, as doctors are very busy
people. You have the responsibility to ensure
you are receiving the best health care possible. Where
you require assistance in filling out forms (e.g., for income support) you will need to
make sure the doctors are consistent in the information they provide. They need to be consistent not only among
themselves but with you as well. Often, when
a patient has not conveyed the functional limitations of their disability to their doctor,
the doctor cannot provide the medical support required for successful applications. The person with a disability may describe a
problem or limitation on their application but the medical information does not indicate
the same problems or limitations. It is
important that your doctor knows how your disability is affecting your ability to work and
perform daily living activities, as well as the overall quality of your life. You can guide your doctors when it comes to
providing information on forms. Be Organized When
you need to submit medical information and other documentation to apply for programs and
services, you will need to keep your information organized.
It is very important that you: · answer all
questions · keep copies of
all the information you submit · write down
information given to you by phone or in person · make note of
when you speak to people, their names and their position, · make note of
when you submit your application · make note of the
date you receive any correspondence/documentation · know the
timelines and follow-up if processing is overly delayed Often, when in a hurry to
get applications in, people forget to do these small things. However, taking a little extra time to make sure
your application is complete, and that you have documented everything, can make the
difference in a successful application/appeal. If
your application is not properly filled out, then this will delay processing and may
reflect poorly on you. If you cannot fill out
an application, you can always request assistance. If
you do use help, be sure to make note of this on your application. V. Political System |
