"If people with lupus won't help each other - who will?"
- Lavina Townes

This kit is dedicated to the memory of Lavina Townes. As a long-standing Board member of Lupus Canada and the President of Lupus New Brunswick, Lavina made a profound contribution to both organizations.

Lavina will always be remembered for her hard work, dedication and delightful sense of humour.

We also wish to acknowledge the commitment of the health care professionals, family members and other caregivers who contribute to the empowerment of persons with lupus.

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Preface

The need for Lupus Canada to take on a role in advocacy was clearly identified in nationwide strategic planning consultations. The 1996 Annual General Meeting unanimously accepted a recommendation to form a Lupus Canada Advocacy Committee. The Committee was launched in April of the same year.

The 1996-98 term, Committee Members:
Glenn Outhwaite, (Chair)
David Butts (Québec)
Gary Lake (British Columbia)
Alan Maitland (Prairie Provinces)
Carolyn Newhook (Atlantic Provinces)
Shelagh Purcell (Ontario)

A key priority for the Advocacy Committee was to develop a kit of information that would equip persons with lupus to work on their own behalf, or others to work on their, to improve their situations. This kit could not have been compiled without the enthusiastic participation of the member organizations and the Lupus Canada Executive. Their unqualified support has made this project possible.

The members of the Lupus Canada Advocacy Committee spent considerable time compiling and reviewing data for this kit. For their hard work and enthusiasm, I would like to express my appreciation. Special thanks to Kathryn Babcock who assisted in the coordination of this project and to Káca Henley of YOU*NIQUE for so capably integrating her knowledge of advocacy with the work of the committee.

On behalf of Lupus Canada I would like to thank Health Canada for the financial support that made the vision of the "AdvoKit" a reality.

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Advocacy is helping yourself (or someone else) to get what you (or they) are entitled to.

Advocacy for persons affected by lupus is any activity aimed at identifying and claiming rights and entitlements. This includes rights as broad as respect and personal dignity, or as narrow as the entitlement to a pension.

Lupus Canada and its Member Organizations want to provide advocacy leadership, support, information and education, to improve the quality of life for individuals with lupus, their families and the entire lupus community.

Introduction

The more information you have, the more easily you can face the challenges related to living with lupus.

The unpredictable 'flares' of lupus can severely affect many aspects of daily life. As a result, you may often turn to family, friends, the medical system, government and other services for help. This can sometimes be a frustrating and unsettling experience.

This kit was developed by Lupus Canada as a support resource, to provide you with information, skills, advocacy tips and techniques. It is our goal to help you learn about your rights, what supports are available, and how to go about getting what you need.

The material in this kit was compiled to help you advocate for yourself or someone else. When the kit uses the term 'you' it refers to you personally or the person who is advocating on your behalf.

Although this kit focuses on an individual approach to advocacy, we recognize that individual efforts are just one facet of advocacy. Broader coalitions and systemic advocacy efforts are a very important part of the advocacy picture, but they are beyond the scope of this kit.

This kit is intended as a starting point. While it is important for you to take action yourself, you are not alone. Every province has a lupus association which is there to direct you to support programs and local resources. Along with Lupus Canada, they are your partners in advocacy.

We live in a time of constant change. Agencies and programs rise and fall, laws and regulations are constantly being rewritten. We hope to provide regular updates to your association, to ensure that the kit will continue to be helpful.

You will certainly come up with your own style of advocacy, techniques, supports and resources. We welcome any suggestions or additions you might have to offer.

The kit consists of five main sections:

Individual Advocacy

• Describes different ways to advocate, and some of the issues that may emerge;
  
• Deals with support systems and networks, rights and entitlements;
  
• Outlines advocating for yourself, and what makes advocating for others different, with particular stress on empowerment;
  
• Addresses taking legal action as an option and outlines some court decisions;

Taking Control

• Outlines the various levels of government and how to approach an office or agency;
  
• Confirms your right to be in charge of your own life;
  
• Walks through a sample advocacy situation, and provides a few tools to help;

Resources

• Outlines many resources on a federal and provincial level, and how to contact your local lupus associations.

Go for it!

• Encourages you to use the information in this kit to make your life as empowered, independent and active as possible.

A Few More Tools

• Definitions of some words and expressions in this kit that might be unfamiliar to you;

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Individual Advocacy

People use the word "advocacy" to describe a broad range of activities. Let's go back to the definition at the beginning of this kit:

"Advocacy is helping yourself (or someone else) get what you (or they) are entitled to".

Even in a perfect world, where systems work and needs are met, there will always be people whose voices, for one reason or another, remain unheard and their needs unrecognized.

Advocacy is based on the principle that each of us has the right to be heard, to understand and to be in control of how we are treated. This applies whether we are advocating for ourselves or for others.

Often, getting what we need is simply a matter of knowing where to go for advice or an answer, or finding out what is available and applying for it.

There are situations, though, when getting what we need requires that we convince someone, or defend our rights and challenge a system that can seem rigid and unfeeling.

Styles of Advocacy
There are as many different ways to advocate as there are advocates. Some people are good on the telephone, others deal better with difficult situations face to face, and others are more comfortable writing letters.

There are situations where each of those styles or methods, or a combination, can be useful. With practice, we each find the style that suits us and that gets the job done.

Among an advocate's best tools are information (you don't have to know it all, but it helps to know where to find it) and having a plan. Through planning, you are more likely to succeed in putting your point across.

It is helpful to think through a situation and decide how best to handle it, a step at a time. You may need to talk with someone about how you plan to take action, or have someone read a letter you have written. Sometimes it helps to do a dry run: "If I say this, what will the other person say?"

Support
Support is important, at all stages - from diagnosis onward - and at all levels. There are supports available, starting with the lupus associations and Lupus Canada.

Lupus associations deal with a variety of questions and problems, reassuring callers that they are not the only ones who have ever faced that particular challenge.

A few of the issues and questions that come up most often are dealt with in this section, as well as other information that could be useful. It is impossible to cover everything in this small volume, but the suggestions included here are based on first-hand experience with lupus, and are guidelines that people have found helpful.

Support is also available through other organizations dedicated to helping people with disabilities and specific conditions.

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If you have lupus

Your best tool as a person with lupus is to educate yourself about your disease and be able to educate the people around you. You will benefit from learning as much as you can about lupus, and specifically about your lupus - which may present itself differently from another person's condition.

Lupus is known as 'the disease of a thousand faces' - there are several different ways that the disease can affect you. For example, at some point during the course of lupus, up to 50% of persons describe feelings of confusion, fatigue, memory impairment and difficulty expressing their thoughts. You may also suffer from mood swings, irritability, extreme emotional or mental fatigue - even without any obvious flare-up symptoms.

It is important that you get to know how you experience your lupus so that you can explain it to people. This is particularly important as many of the symptoms of lupus are invisible and you may 'look just fine' to other people and be in a flare.

When first diagnosed or when you are flaring, you may not be well enough to understand all that is happening. To allow you to collect your thoughts and questions, you might want to ask your doctor for a special appointment to discuss your condition in detail. In the meantime, it can be a good idea to write down any questions or symptoms you want to talk about, because it is easy to forget them.

If you find you cannot cope alone, ask a family member or close friend (an advocate) to come with you - to the hospital or the doctor's office - to hear what is being said and to help explain what is happening to you. (Your advocate is there to listen, and to speak out when you cannot - not to take over the meeting.)

If you want more information than your physician provides, there are good books, articles and pamphlets written on the subject and your local association can provide suggestions. The more you know, the better you can cope.

Seek out the information you need from as many reliable sources as you can. The word "reliable" is important here. Not everything in print or on the Internet is true, so make sure you check the source or the information with your doctor or your lupus association.

Don't be afraid to speak about lupus, or to meet other persons with lupus. You will soon realize you are not alone.

A visit with your local association can be arranged, if this would be helpful. Speaking with someone who has been through what you are experiencing can sometimes relieve a lot of tension and ease your fears.

In addition to the resources listed in this kit and ones you can obtain from your lupus association, there is another, important, type of information that many have found helpful. This source of information (and encouragement) is the first-hand experience of people living with lupus. Your local lupus association can help you find (or even create) a self-help group, or put you in touch with someone to talk with.

Gathering and sharing what you learn will help you and those around you to understand how lupus can affect your life, why you feel the way you do, what is happening to you, what treatments are available, what to expect, how symptoms can affect you and how best to deal with them.

Your Doctor
Your first and best resource should be your doctor. Ideally, you need a physician you can trust, one who is willing to listen and prepared to spend the time needed to answer your questions clearly and respectfully.

It is important that you be able to communicate with your doctor. A good doctor is your partner in dealing with lupus, ready to refer a difficult problem to a specialist, and not uncomfortable if you ask for a specialist or a second opinion.

If your doctor considers you a partner in your care and informs you fully about any treatment or medication prescribed, it will help you to follow directions and note any unusual reactions.

You can make it easier for your doctor if you do your part. Keep a diary or journal of your illness. Make notes about symptoms right away, as they come up. If you find a way to cope with or to lessen a symptom, write that down too. Record any medication reactions, blood tests, and other ongoing evaluations.

The diary can help your doctor in considering medications, treatments and referrals. It can also help you prepare questions to ask and issues to bring up at your next medical appointment.

You can improve communication with your doctor by arriving on time, with specific questions, and the willingness to answer the doctor's questions honestly.

Don't try to diagnose yourself, but do explain what has happened since your last visit. The doctor can't be expected to read your mind about your condition.

If you disagree with your doctor about a course of treatment, you (or your advocate) should make your concerns known and discuss the situation.

There are also a number of other health professionals who may be helpful to you - for example: occupational therapists, physiotherapists, social workers or massage therapists. Your doctor can discuss these alternatives with you and provide you with a referral if needed.

Your Medications
For each medication prescribed you need to know: possible side effects, interactions with food and with sunlight, how long it takes to work, how to take it and when, and how long you can expect to be on it.

In addition to your doctor, your pharmacist is qualified to give you information about your prescriptions. If you can, establish a connection with one pharmacist, who will keep track of what you are taking and tell you of possible interactions when something new is prescribed.

If you are seeing more than one doctor, be sure all of them know the medications you are taking - and don't feel awkward about reminding them. Doctors know they can forget some of the details, and you are the one most affected by the medications and treatments. Again, diary entries will help you keep track of any reactions or side effects.

Hospitalization
If you're admitted to the hospital, be sure that all the doctors who have been treating you know about your hospitalization. Very often, a person with lupus is being seen by several specialists. They should all be aware of any changes.

Many hospitals have Patient Advocates, to help patients who have a problem with a health professional, treatments or the surroundings. If you have any difficulties while in the hospital ask to speak to a Patient Advocate. To a person with lupus who is ill, such help can be invaluable.

Your Family
It isn't just you as the person with lupus who suffers with this chronic illness. Family, friends and co-workers are all touched by it in some way.

Experience has shown that all family members should be told what is happening to the person with lupus. The specific details will, of course, depend on the age of the persons involved.

Family and close friends are often your first line of support. It is important that they understand what is happening to you, and what you need from them.

If you and the people close to you can be knowledgeable about this illness and talk openly about your limitations and your needs, it will help all of you weather the 'flares' more smoothly.

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If you're a parent with lupus

As a parent with lupus, you have the additional concern of how your children are dealing with your illness.

You need to be aware of what they may be thinking. They might overhear an adult conversation and misinterpret what was said. They also might assume that they are somehow responsible for what is happening to you and feel guilty.

If your children tend to hide their thoughts and emotions, you may not know what is bothering them. Being open and honest with them about what you are feeling will encourage them to do the same.

Flares and fatigue often interfere with the lives of families, and if your children know how you are affected, they will be better able to understand your limitations - for example, why you can't be at their school events or participate in other activities. It will also help them feel better about doing extra chores around the house and making quiet time when you aren't feeling well.

Different children react differently to the situation, because of age or personality. Informal family discussions may help to get some of the feelings out in the open.

For example, children especially need to understand that they did not 'cause' lupus to happen. There is no known cause for lupus - yet. Some of the best researchers are working to find out the causes or cause and how to cure it.

Limit stress
If you think your family is having serious problems, you might ask your lupus association to recommend family support groups. Counselling or family therapy might be helpful if the family is having a particularly stressful time.

There are good books, articles and pamphlets written on the subject and your local association can provide suggestions. Above all, remember that adding family stress to your physical condition will just complicate your lupus.

Try not to assume that you should be able to handle everything on your own, or that you're the only parent who has ever had this problem. There is help and support for you, and getting help is a sign of wisdom, not of weakness.

During a serious lupus flare, you might consider making arrangements for your children to stay with a close family member or a good friend. It is a good idea to make these arrangements when you are feeling reasonably well.

Then you can explain the circumstances to your child; telling them that it will help you to get better, and that it will only be a temporary situation. Assure them that you will be happy knowing that they are well taken care of while you are not well.

The children's teachers, sports coaches or activity leaders (Cubs, Brownies, Scouts, Guides) should also be alerted to your health problems. They need to have enough information to understand why a child might behave differently at certain times.

In addition, they can give the child an opportunity to share with a trusted adult the feelings they hesitate to talk about with a parent or family member.

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If your child has lupus

For the parent of a child with lupus, information is equally important. Everything - symptoms, medications, side effects, sun sensitivity - will affect what you and your family can do together. It is easier to cope when everyone is informed about what they are dealing with.

Children react to peer pressure, and some of the difficulties that arise can be as much age related as lupus related. But either way, a chronic condition alters everyone's perspective.

A parent needs to be aware of how sisters or brothers are dealing with the illness, and how they are affected by the attention the child with lupus is getting. The child may be unwilling to accept the reality of the disease and the routine of treatment and medication. Denial - by the child or others in the family - may require counselling, perhaps for the whole family.

Parents are encouraged to get together with other parents and exchange information about how they have dealt with various situations. It's always good to know that you are not alone with your problems.

If there are peer groups of children with chronic illnesses, you might encourage your child to meet with them, both to recognize that others face similar issues and to learn new coping skills.

School and the community
Some adults who deal with your child may be familiar with lupus and others may not. Your child's teacher, community leader or religious leader should be provided with up-to-date and accurate information about lupus. They need to know about symptoms, medications and side-effects, in case they need to deal with a sudden problem.

If it is something they are willing to do, you can encourage your child to speak to the class or group about lupus and its effects, or to do a science project about it.

Classmates are often more accepting of a situation if they are told about it openly, and this may help your child cope better in the peer group. Instead of having to explain absences, your child can return to school and simply acknowledge that lupus was acting up again.

Make time for yourself
To cope with the stress when a family member is ill, many of us tend to shut ourselves off from the world. We need to make a real effort to take time for ourselves, outside the family. While there are countless activities to choose from, some have found volunteering with the local lupus association is an effective way of dealing with the feelings of helplessness.

Volunteering can provide opportunities to meet other people with lupus and their families and see how they have coped with the disease. Volunteering is also a source of up-to-date information and a variety of supports.

As an example: when two of the four adult children in a Toronto family were diagnosed with lupus (within a year) the parents did what they could during the times of illness. The young people were living away from home, and both parents were frustrated that there seemed to be so little they could do to make things better.

They decided to join their local lupus association, to see what they could do to help. It was also a way to educate themselves about the disease and to meet others who faced similar problems. They volunteered their time because it seemed to be a pro-active approach to the family situation.

Certainly, not everyone has the time or the inclination to volunteer. Still, it can be a good way to learn about lupus and to confirm that we are not alone in dealing with it.

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For the teenager with lupus

Even though a diagnosis of lupus can be difficult because it imitates many other illnesses, lupus is being diagnosed today at a younger age.

As a teenager with lupus, you face not only the challenges of the disease, but the challenge of feeling different than your peers.

It may be difficult, for example, to explain to your friends at school the "moon face" side-effect of some medications, or to admit how exhausted you are when you look quite normal to other kids. Having a chronic condition like lupus means being "different", and that affects how you are accepted.

Symptoms that arise will influence how well you can cope with school and extra-curricular activities, how you meet the expectations of your peers, teachers, parents and extended family members, and above all your own hopes and goals.

A majority of sources agree that the most effective method of dealing with these problems is to try to educate your peers about lupus.

Your teachers should also be aware of limitations that you might have to deal with periodically. For example, if you wait until the night before an exam to explain that you're exhausted, a teacher might not be as sympathetic as if you had explained your situation at the beginning of the term.

You might also try to arrange different study and exam patterns, in case a 'flare' takes over your life for a while. It is important not to overload! If you feel you can't take a full course load, try spreading your classes over a longer period of time. Adding stress to your illness can only extend the time it takes you to recover from a flare. It's all right to go easy on yourself.

Support groups for you and your parents can help to solve some communications issues. Often when teenagers with lupus get together, they are surprised to realize they share the same problems.

There are also supportive computer bulletin boards (BBSs) like Ability OnLine (see the section 'Provincial Resources'), for young people with disabilities, where you can find friendship and understanding.

A good relationship with your doctor - in which you can ask questions and talk things over - can help you deal with problems, large or small, before they take over your life. If your doctor doesn't have the time to spend with you, find out if there is someone else - a social worker or counsellor - who could help you deal with your concerns. Keeping things bottled up inside can make the situation worse. Your peer group or close friends may want to help by listening to your problems, but they rarely have the experience and the knowledge to provide solutions.

Be as well informed as you can. Local lupus associations can give you a reading list of books that provide good information on your illness. Also, try the library, the Internet, resources and supports listed on page 22. Do make sure your sources are reliable, though - not everything in print or on the Internet is credible.

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If your partner has lupus

Often in a relationship where one partner has a chronic illness, we forget that the other person suffers too. While medical attention is paid to the person with lupus, life can change drastically for both partners.

Roles may be reversed - wage earning, household chores and family connections may fall to the caregiver. There are mood swings, medications and medical appointments to sort out, and a broad range of symptoms, fatigue on both sides.

Because a person with lupus often looks well, family and friends fail to understand or accept how serious the problem has become. Change is hard to cope with, and tension in the household can escalate as everyone tries to deal with the illness and the desire to get back to what used to be normal.

Excerpts from a letter written by a woman dealing with her husband's lupus illustrates one example of what happens: "For years, we suffered through the agony of not knowing what is wrong…the anger when the doctors can't find anything and the anger when the medical profession treats us as hypochondriacs. But still we hang in there...then the person shuts me out…'After all, you can't possibly understand what I am going through'...And this is when we discover who our friends are, and which family members have plenty to say, all of it critical…Our identities are lost. Everything we do and everywhere we go is wrapped up in pleasing the patient. We do these things willingly because we love the family member with lupus."*1

Not every situation will be the same, but there is no question that lupus calls for flexibility.

Some partners have difficulty expressing their feelings, their needs and concerns. A support group run by the local lupus organization may be a safe place to share some of these frustrations.

At the very least, in a group we realize that we are not alone and admit, if only to ourselves, that our feelings and reactions are normal.

Lupus organizations have a reading list of books dealing with specific concerns among partners, extended families and friends. It may be helpful to read and learn how to manage your emotions at these difficult times or how to relieve stressful situations for the person with lupus.

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Lupus in the workplace

If you have been diagnosed with lupus at a time in your life when work is important to you, adjusting to a new lifestyle can be an additional challenge. Almost everyone wants to work and to be productive. Working, whether it is in a paid job or volunteering, is very important to our well-being and self-esteem. However, for a person who has lupus, that can be a difficult task.

On the job

The first question becomes 'Should I tell my employer I have lupus?'. This is a personal decision that only you can make. Here are some situations and examples that may help you decide. All considerations need to be weighed carefully.

Some enlightened employers are willing to make changes to the work environment and schedule to accommodate an employee's changing needs. Where it would be helpful, for example, they might:

• make working hours more flexible,
  
• change the lighting (for some, sunlight and fluorescent lighting can cause lupus flares),
  
• provide rest periods,
  
• change work duties,
  
• provide a temporary leave of absence,
  
• or, if the job can be done away from the workplace, making it possible to work from home.

These are just some of the actions that could be taken to enable you to do your job with a minimum of discomfort. Such accommodations will also reduce your stress level in the workplace. Remember, stress, whether good or bad, can make your lupus worse, and in some instances might even bring on a lupus flare.

Consider Jack: he lives on the West Coast and works for a professional firm. He decided to tell his employer that he had lupus. His employer was very concerned about his well-being and looked into what could be done to assist him with his work.

His desk chair was replaced with an ergonomic one. The lighting in his office was adjusted and his work schedule rearranged.

These actions made it easier for Jack to deal with his illness and his lupus remains under control. Needless to say, Jack continues to work happily at his job.

On the other hand, it does not always go that well. Consider Jane, twenty-seven years old, employed by two professionals. She had lupus since childhood, and made no secret of it, both with her employers and co-workers.

Everything was fine for about five years until Jane started to flare and began losing time at work. She explained her condition to her employers and to her co-workers, thinking she could make them understand about her joint pain, fever and flu-like symptoms.

Lupus often does not affect a person's appearance, and Jane didn't realize that, because she looked so well, her colleagues didn't understand what she was going through.

Inevitably, problems arose. Her employers had misgivings about the time she was missing from work but were reluctant to discuss it with her. Her co-workers resented having to pick up the slack and started to make nasty comments.

When Jane walked into a room, they would immediately fall silent. She knew they had been talking about her. The situation grew worse and worse until Jane finally resigned.

It was years before she was able to resolve in her own mind the hurt and anger she felt about how she had been treated because of her lupus.

If you decide to tell your employers about having lupus, make sure you educate them with an up-to-date information package. But that is not enough. You need to tell your employer about your particular symptoms (remember, symptoms vary widely from person to person) and to communicate your specific accommodation needs clearly, rationally and coherently.

Applying for a job
Should you indicate that you have lupus when completing a job application form? Again, this is a personal decision that only you can make.

Some employers follow the trend to be sensitive to equity issues and people with disabilities, and will be quite willing to hire you if you have the skills for the job. Others will not. Existing policies seldom cover every situation.

The Human Rights Code in your province prohibits discrimination on the basis of a disability, and if you feel you have been refused employment for which you are qualified, you can file a complaint with the Human Rights Commission in your province (see the examples in the section 'Case Law'). Bear in mind, though, that such appeals take a long time to go through, and can be quite stressful.

In any case, you do not have to mention any disability in your application, and whether you do or not depends on whether you feel right about it, and whether you think it will be useful or not.

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A Broader Support Network

In addition to your immediate family and the lupus association, you can look for support to an informal network of friends and extended family, who can also be a valuable source of strength and encouragement.

In the process of living with lupus, you will develop an even broader, more formal network. For example, if you need information about wheelchair accessibility in your community, you might check with organizations like the Arthritis Society or the Canadian Paraplegic Association who deal with people with mobility problems. They may also be able to suggest other resources or self-help or support groups of people who have dealt with similar issues.

The problem is often in finding these resources and finding out what is available locally. Hospital social workers can be valuable sources of information about community and available services, especially in smaller communities. They generally have a broad network of local resources, and are usually happy to share their knowledge.

It is a good idea to keep a list of people who have been helpful in the past, in case their help is needed again.

When personal advocacy fails to bring results, or when we feel we have been wrongly treated, we may consider taking legal action. A lawyer or a legal clinic will be able to tell us if the issue can be taken before the courts, and if necessary help us in doing so.

Agencies
Advocating with government or other kinds of agencies is a particular challenge. In the section "One Approach to Advocacy" you will find some tools for planning your approach, organizing your efforts and applying them.

Once you have a plan, it is helpful to find out which of the organization's departments to approach and a contact name. An obvious source of information is the switchboard operator. Stating what you need, briefly and specifically, you can ask for the name of the best person to contact. The name can be important - speaking or writing to someone by name is much more effective than dealing with a faceless, nameless department or telephone number. People can often be more helpful when addressed by name.

When you deal with organizations, you need to remember that they generally have strict rules about eligibility. Often they don't tell applicants what those rules are. Knowing the rules is important - sometimes you will find that you have information they didn't ask for, information that can establish that you are eligible.

While rules are seldom broken, often a supervisor or manager can bend them or make an exception when your situation does not fit into their rules.

If you are not satisfied with an explanation, you are entitled to contact someone in authority. An important part of the advocacy process is keeping records of what you have done - names of organizations and individuals, what you were told and what was promised. Being able to return to your notes often improves your ability to get what you need. Besides, it can save you having to go hunting for the same information all over again the next time you need it.

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Rights

Everyone in Canada has certain rights that no one can take away from him or her. They are written into provincial and federal law as "human rights".

There are certain groups of people who are considered vulnerable. They are people who could be taken advantage of and who may need supports to defend their rights. They often don't have a lot of power in our society. Examples are: children, people with disabilities and elderly people.

For these people, specific rights are often put into the law. For example, provinces have laws that state how children in the care of the government should be treated.

The US has a law about the rights of disabled people called The Americans with Disabilities Act. While it does not apply in Canada, Canadian disability advocates are working hard to get Canada to create such a law. (That is a good example of the systemic advocacy.)

There are also international codes: The Universal Declaration of Human Rights was adopted by the United Nations over 50 years ago, and The United Nations Convention on the Rights of the Child, which applies to all children, was adopted in 1989.

It is important to remember that the human rights laws guarantee equal rights: no one can be denied a service just because they have a disability. These laws support the right of every person to dignity and respect.

In Canada, jurisdiction over human rights is shared between the federal government and the provincial and territorial governments. The Canadian Charter of Rights and Freedoms, part of Canada's Constitution, forbids discrimination, listing as examples many grounds, including disability. The Canadian Human Rights Commission investigates complaints of discrimination. If the complaint is not in the Commission's jurisdiction, the person filing it will be directed to the appropriate authority.

Most workplaces are subject to provincial jurisdiction, and as such, most individuals are governed in terms of employment discrimination by provincial human rights codes (see the section 'Provincial Resources' for the contact for your specific province).These laws also forbid discrimination on the basis of disability in all ranges of goods and services that are not federally regulated.

Laws can be complicated and hard to understand, but a simplified version is often available through the library. We need to be aware of our rights, and make sure others understand and respect them.

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Entitlements

Entitlements are benefits a person is qualified to receive. These benefits are usually not automatic. We must apply for them, and prove that we are truly qualified to receive them.

One of the important tasks of an advocate is to find out about our entitlements and to collect the documents required to apply for them. A good example of an entitlement is a disability pension. (For more about the federal disability pension under the Canada Pension Plan, see 'Resources'.)

Many people are reluctant to claim their entitlements. They need to remember that social benefits are not charity, but a way that society tries to create a "level playing field" - where persons who are at a disadvantage, for one reason or another, can live as fully as possible.

Another reason some people fail to claim their entitlements is that they don't know about them. Once again, you can use your resources to find out what is available: your lupus association or other disability organizations, the hospital social worker or the library. Again, keeping records of various services may be helpful at a later date.

For some of us, advocating for ourselves is difficult. Often we believe we ought to be able to manage with what we have. We wonder why we should have something that other, healthy people don't have. Even when we do recognize that lupus can put us at a disadvantage, and that we need supports, it can still be hard to pursue them.

When it is too hard - for instance, when first diagnosed, and coming to terms with having lupus, or in the middle of a severe flare - we may need to rely on someone we trust to advocate for us.

This person can be a professional (for example a social worker), an advocate recommended by a disability organization, a close friend or relative, or even a member of a self-help or support group who has the knowledge and the willingness to advocate.

But when we are able, and when we recognize that we truly deserve to ask for what we need and what we are entitled to, we will advocate for ourselves.

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What Makes an Advocate?

Much of what an advocate does is based on 4 qualities:

· Commitment involves caring, the determination to make things happen and the will to follow through;
· Communication skills include the art of listening, putting thoughts into words clearly, distinctly, and convincingly, whether in person, on the telephone or in writing;
· Curiosity leads a person to collect the information necessary to advocate; and
· Creativity helps to develop new, imaginative solutions when other solutions seem impossible.

These four C's are basic to the investigating, the problem-solving, the negotiating, the record-keeping and everything else that makes up the tasks of an advocate.

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Advocating for yourself

Your first line of support is often your family and close friends. It is important that they understand what you are experiencing, and what you need from them.

Sometimes that will be as basic as asking for some time to rest, or as difficult as asking not to be treated as if you were 'made of glass'.

Family and friends also present excellent opportunities to practice advocating.

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Advocating for others

Situations may arise when you need to advocate for someone else - often a family member or friend. It can be easier to speak convincingly and enthusiastically for someone other than yourself.

When advocating for someone else, styles and methods of advocacy remain the same. An important difference about advocating for someone else, though, is that you must keep the person involved and informed about everything that will affect him or her.

Always remember that you are speaking for another person, and that you cannot make decisions for that person without making sure they are in agreement. You need to be as clear as possible about the issue at hand. Everything you know about possible problems, regulations, rules and restrictions needs to be passed along.

Empowerment
It can be easy to assume that you know what is best for another person, to convince yourself that you understand what they want. In fact, you may very well be right. But an individual going through the struggle with lupus may already feel powerless and out of control about their body, their health and their life. If the power to understand and make decisions is taken away too, it can be devastating.

Being involved, having a part in whatever is happening, having a say about how services are delivered and how activities are carried out, gives the person with lupus a sense of control. It can, indirectly, affect how well the person deals with their condition, and can even play a part in lessening its effects.

The person you are advocating for may have some ideas and skills that can make your work easier. Partnering with the person in the advocacy process is an excellent way of empowering them.

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Case Law

(Note: These comments are for general information only. Legal advice should be obtained regarding specific situations.)

This section is designed to provide an idea of how judges of various courts and commissioners of human rights tribunals have protected the rights of people with an illness or a disability. The case examples in this section don't all deal with lupus, but they give us an idea about how the legal system can work for people with disabilities and chronic conditions.

Case Law, or legal precedents, provides the system with principles to base its decisions on. The more similar a new case is to a previous case, the more likely it is that the outcome will be the same.

No two cases are ever exactly alike, though, just as no two people with lupus have exactly the same symptoms. Each decision a judge or commissioner makes is based on the specific facts of the case. A difference of even one or two facts may result in a very different decision.

There is no way of knowing for certain what a commissioner or judge will decide, but if you have a case in which you feel that you ought to receive compensation or relief, you certainly should look into the possibility of taking legal action.

If, for example, you have been refused work, fired from a job or discriminated against, you could seriously consider consulting a lawyer. It is very possible that the action taken against you can be corrected and you might be awarded monetary damages for that wrong.

If you want to take the issue to court, support is available. In a court of law, a lawyer is the advocate. In many cases, a lawyer will give you a free consultation upon request. You can also consult a legal clinic, or the local Bar Association can tell you where to go for advice.

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Taking Control

Many of us with chronic conditions or disabilities feel that we have far less power or control over our lives than healthy people have.

Income, health care, transportation, housing, access to recreation and education all seem to be in the hands of others.

The "system", often with the best of intentions, can treat us as if we were incapable of making the same decisions about our lives as someone who does not have a chronic illness.

When we are advocating for ourselves, we need to take back control and reclaim our right to have a say. Working on behalf of someone else, we must make sure that the person has the opportunity to take an active part in decision-making. That's what "empowerment" means.

Services
Services funded by government - federal, provincial and local - are paid for with tax money. Every Canadian pays for them. You need to keep this in mind when you face rigid or patronizing people administering them.

Your best tool for dealing with agencies is information. The more you know, the more intelligently you can advocate. This applies not only to governments, but also to private agencies and services.

Organizations have rules and regulations created for the most typical situations.

Because persons with lupus vary widely in their needs, they don't always fit into any of the "pigeonholes" that organizations have created for people with chronic conditions or disabilities.

You as the advocate can help find creative ways to provide appropriate services. To do that, you need to find out as much as possible about how the organizations and services operate in the community.

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One Approach to Advocacy

It is not always easy to deal with an agency, organization or government department regarding a benefit or service.

To help with that task, three tools are part of this section:

· An Advocacy Plan, based on a 7-step problem-solving process;
· A Worksheet to use with the plan; and
· A Checklist of things to remember when applying for a service or benefit.

Let's use the step-by-step, common-sense Advocacy Plan to walk through a relatively simple and quite common situation.

Step 1

Define the problem, simply and specifically.

Let's say you live alone, and find you are often too tired to handle the tasks that make for a smooth-running household: shopping, cooking, laundry, cleaning.

To pin down the problem, you ask which jobs are the hardest for you. Say you decide the problem is cleaning and laundry.

Step 2

List possible solutions.

• You can let it go until you are strong enough to do it.
• You can ask friends or family to do it for you.
• You can get outside paid help.

Step 3

Collect information for each option.

1. For option 1, you need to decide if you can put up with a messy house and dirty laundry for however long it will take.
   
2. For option 2, you can list the people you're comfortable asking for help.
   
3. You might come up with two approaches to option 3:
   a. Hire someone, or
   b. Look for a service that is free to people with disabilities.

You can call an employment agency to see how much hiring someone would cost, and see if you can afford it. For a free service, you might check with your lupus association, the local public health office, or a community information service for suggestions.

Let's say you learn of a non-profit local agency that operates a Homemakers Service, free to disabled persons if recommended by a doctor.

Step 4

Consider the options and decide.

You decide to look into the Homemakers Service.

Step 5

Consider further actions.

If this is an unfamiliar task, you can use the checklist in this section.

Perhaps the first thing you do is to call the agency to find out who manages the Homemakers Service, and who is entitled to the service.

You may find that you need to apply in person, on certain days of the week, and bring a doctor's recommendation and proof that you live in the community. (You would be wise to write all that down, so you don't forget any of it.)

Step 6

Take action!

You make the appointment and get the documents, plan what you're going to say - it's easier if you think it through beforehand - and go to apply.

There, you find they have a 6-month waiting list. You write that down in your records.

Step 7

You are not willing to wait that long, so you go back to Step 4, and choose another option.

You decide the next best option is to ask a good friend to help.

You think through your best approach (Step 5). Maybe you can offer to do something in exchange, something less exhausting than housework, for example, waiting for a repairman while your friend is at work.

In the end (Step 6), you may be surprised at how willingly your friend agrees to your suggestion.

This process can be applied to a variety of advocacy situations. If and when you would like to try this approach on a situation of your own, print the blank worksheet based on the Advocacy Plan. You can make photocopies of the worksheet, leaving the back of the page blank.

Follow the same seven-step process, step by step, with each situation. Fill in the blanks, using the back of the photocopied worksheet if you run out of space.

You can file completed worksheets as your record, for future reference.

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Advocacy Plan

1. What exactly is the problem?
2. What is needed to resolve the problem? What are the options?
3. Collect information for each option, so the best option can be chosen.

Where do I go to find out?
Gather information.

A. For each one, consider:
a. How can I find out anything I need to know before I make the contact?
b. What method/approaches can I use?
c. How will I make contact? In person? Telephone? Letter?
d. What do I need to ask (say)?
e. What are my best arguments/reasons?

B. Do it!
C. If necessary, return to Step 4.

A. Date:
B. Name:
C. What was I told? Are there any deadlines?
D. What do I need to do to follow up?
     Do I need to pre-plan this step? If so, return to Step 1.

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Worksheet

1. The Problem: ____________________________________.

2. Options for Solution:
     a. _____________________________________________
     b. _____________________________________________
     c. _____________________________________________
     d. _____________________________________________

Record of Contact

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Checklist
Applying For Benefits Or Services

The following suggestions can help you with the application process and ensure that your application will move through as quickly and smoothly as possible:

o      If you deal with a specific person in the office, get their name and title. It can be helpful to have someone to contact later in the process.

o      Get as much information as you can about the benefit or service for which you are applying. Ask if there are any brochures or booklets.

o      Don't hesitate to ask about eligibility requirements and criteria. This is information you are entitled to have. If they are not clear, insist on an explanation.

o      Be sure to get all the forms you need from the agency.

o      If a form is unclear or hard to understand, don't hesitate to ask questions. Answering them is part of the employee's job.

o      Ask if any additional documentation will be needed.

o      Ask about deadlines for applying. Make sure you can get all documentation in time.

o      Ask when and how you will get a reply.

o      Follow up your application with a phone call and, if necessary, correspondence, to prevent the paperwork from getting buried in what is often an agency's overwhelming volume of applications.

o      Keep a record of all communications with the office. Make a note of the time and subject matter of all meetings and telephone calls. If you leave a message, make a note of that too.

o      Record any decisions or agreements that were made

o      Keep all letters received, and copies of all letters sent.

o      If your application is rejected, find out the reason, and ask if there is an appeal process. There usually is.

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Resources

Various aspects of Canadians' lives are administered by different levels of government. Some are shared between federal and provincial governments, but most of the major ones that affect our day-to-day lives are in the hands of the provinces. These include the delivery of health care, education, child welfare, social services and justice.

See the section 'Provincial Resources' for your province for an overview of some of the specific services and resources there.

Provinces can delegate powers to local governments - cities, towns and regions - which in turn can fund agencies to provide services.

In recent years, the administration of some federal and provincial services has been put in the hands of private corporations and organizations (for example, Canada Post, day care, some nursing homes).

The federal government has jurisdiction over everything that is not specifically in the power of the provinces.

Some of the main areas administered by the Federal government include, for example, Canada Pension, federal taxes, tax credits and employment insurance. These are detailed in the section that follows.

Governments do not administer all the services we might need and be entitled to. A number of them are supplied by organizations and associations, agencies, corporations and companies. Often the greatest challenge in the advocacy process is finding out what services are available, and from whom.

To learn about services administered locally, it is usually possible to check at the community's municipal office.

Many organizations serving the elderly (and some larger municipalities) have published lists of local services available to seniors, and these may be helpful to people with lupus too. Information can also be obtained from the sources listed in the section 'A Broader Support Network'.

The focus of this section is on a selection of major government benefits and services, and where to find out about others.

Information about federal services is available toll-free at 1-800-667-3355.

Local telephone books have a government section (usually blue pages) listing federal and provincial ministries, departments, commissions and agencies, as well as municipal and regional ones.

On the Internet, a good starting point, which can lead the searcher to a broad range of government Internet sites, is at: http://canada.gc.ca/

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Federal Resources

The Government of Canada administers human rights legislation, as well as benefits like federal disability and old age pensions, employment insurance sick benefits, various tax credits, assistance with making a residence physically accessible, assistance accessing emergency medications, and others.

This kit only covers the most basic information on each of these topics. Further details should be sought if the reader is considering applying for any of these benefits.

Local or regional offices of Canada Revenue Agency (CRA) can answer questions about various federal tax credits.

For employment security and pensions, any local Income Securities Programs offices (in smaller communities often located in the same building as other federal offices) can supply applications and information. Most of this material is also available at http://www.hrdc-drhc.gc.ca/.

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Human Rights

Federally, it is the Canadian Charter of Rights and Freedoms and the Canadian Human Rights Act that define rights and protect individuals from discrimination.

The Charter (Section 15) says that everyone must be treated equally before the law, without discrimination1. It lists examples of grounds on which discrimination is forbidden, and disability is one of these grounds. The idea behind Section 15 is that the law is intended to bind all individuals equally. No law should benefit (or burden) one person more than any other.

When someone is put at a disadvantage because of some personal characteristic, that is discrimination. When a person or group is denied opportunities, benefits or advantages that are available to others, that is discrimination.

The Charter forms part of the Constitution of Canada, the supreme law of the land, and supersedes any other law, federal or provincial. In principle, no legislation, federal or provincial, may disagree with the Charter.

The impact of federal rights legislation is important for the individual advocate to understand, as the health care sphere, for example, involves many federally administered agencies.

The Human Rights Commission (http://www.chrc-ccdp.ca/)
An employee who has suffered discrimination because of a disability may file a complaint with the Canadian Human Rights. The Commission will determine whether the activities of the employer are under federal jurisdiction or provincial. If it is provincial, the complaint will be referred to the correct agency.

If the Commission finds that the situation is in the federal jurisdiction, the Commission will appoint an investigator to find out if the complaint is valid. An employer is obliged by law to accommodate disabled employees to a certain degree.

Once filed, the complaint is investigated by an agent of the Commission, who tries to negotiate a settlement between the parties. If no settlement can be reached, a report is prepared for the Commission.

The Commission then has several options. It can:

1. Appoint a conciliator to try again to bring the parties to arrive at a settlement; or

2. Send the complaint to the Human Rights Tribunal for review and adjudication; or

3. Dismiss the complaint, usually for lack of evidence that a violation has occurred.

If the complaint is referred to the Human Rights Tribunal, the Commission represents the one who filed the complaint: the complainant.

The Tribunal decides either that the complaint should be dismissed or that the employer must take action to remedy the situation. The Tribunal has the power to determine the remedy.

Generally, the remedy will be an order for the employer to stop the discrimination. This may include creating a program to correct the problem or a plan to prevent any similar situation from happening in the future.

The Commission may also award compensation for lost wages or injured feelings and may order the employer to pay other costs involved in settling the complaint.

Either party may, if not satisfied with the decision of the Tribunal, ask that it be reviewed by a Review Tribunal or the Federal Court.

It is important to remember that the Commission may not take on all cases submitted to it, and if they do, the process can take months, even years, and is very stressful.

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Canada Pension Plan

To apply for a monthly federal disability pension, an individual:

·    must be considered disabled according to CPP legislation;

·    must be between 18 and 65 years old;

·    at the time that he or she became disabled, must have contributed to CPP in four of the last six years, unless there are extenuating circumstances;3

(If you have contributed to both CPP and QPP, your contributions will be combined. Applicants who reside in Quebec at the time of applying for benefits will apply to QPP: all applicants from other provinces apply to CPP-Disability.)

You should apply in writing for benefits when you believe that your disability prevents you from working regularly at any job. The application must be in writing. If you are unable to apply on your own, another person can apply for you. For an application kit, you can call free of charge to 1-800-277-9914 (English) or 1-800-277-9915 (French); TDD/TDY: 1-800-255-4786. The kit contains the information and instructions you will need to apply and tells you what documents you need, such as proof of birth. The kit also contains:

• A basic application form for you and your dependent children to complete, including name, address and other vital statistics.
• A questionnaire about your health, education and work history.
• A consent form to be signed by you, allowing CPP staff to contact other sources to support your application.
• A medical report to be completed by your doctor. If you have more than one doctor, choose the one who knows the most about your main medical problems. Along with this will be an envelope for your physician to return the medical directly should they wish.
• Documentation to verify your legal status in Canada.

When the application is received, it will be reviewed to make sure it meets the criteria for contribution and the definition of disability. Sometimes CPP asks individuals to have a medical examination by a physician it chooses, in order to verify medical findings and limitations. This will be paid for by CPP.

Payments generally begin about four months after CPP determines you to be disabled, so it is important not to delay making an application. The amount an individual receives is calculated on the amount contributed and the number of years of contribution. As previously noted, you must have contributed in four of the last six years, unless there are extenuating circumstances noted on the previous page. The maximum CPP-Disability benefit in 2005 is $1010.23 per month. Each January this is reviewed and adjusted if there is an increase in the Canadian cost of living index. Cheques are sent/deposited within the last three banking days of each month.

CPP-Disability does not pay for medication or transportation nor does it subsidize rental costs. If your health improves and you are able to return to work on a regular basis, CPP may offer you a three-month trial work period. During this time you will continue to receive CPP benefits. If you are able to continue work beyond the three months, your CPP-Disability benefits will be discontinued. If you are working but not on a regular basis, you can earn up to $4100.00 in a calendar year without informing CPP and losing your benefits. You must inform CPP if your earnings are more than $4100.00. They will want to talk with you about your personal circumstances, medical situation, work capacity and pattern.

Other benefits that CPP-Disability offers include a monthly benefit for children of a disabled parent, a survivor benefit including a lump sum death benefit for funeral expenses and a pension for surviving spouses and children.

Definitions of Disability
It is important to realize that "disability" is defined differently for various entitlements. For the Canadian Pension Plan, an applicant must prove that:

1. The disability is severe: because of the disability, the person must be incapable of regularly carrying out any paid work.

2. The disability is prolonged: likely to continue for a long and indefinite period or likely to result in death.

The definition used by CPP-Disability is different from that used by many other government programs. It may be more difficult to satisfy the narrowly defined criteria of "severe", "prolonged" and the inability to perform any gainful occupation. Decision-makers consider the individual's personal circumstances in deciding whether the disability meets the above criteria. For that reason, it is important that the application and any future correspondence refer to the person's work history, age, gender, education, etc.

If approved, you will receive a Notice of Entitlement letter indicating the date the benefits will start, the monthly entitlement, any retroactive payments you are eligible to receive as well as your rights and responsibilities. Retroactive payments can be paid to a maximum of 12 months. Generally the first payment is received within 30 days of approval. It will take approximately four to six months for your application to be processed and approved.

Some people have their eligibility to continue to receive CPP-Disability benefits re-assessed. To continue to qualify for benefits under this program you must be under 65 years of age, and your disability must be considered severe and prolonged. CPP-Disability will periodically review your file to verify that you have not regained the capacity to return to work. You may appeal a decision you do not agree with. If an application for CPP disability benefits is refused, it may be because decision-makers felt that criteria of a severe and prolonged disability were not met or that you have made insufficient contributions to the Plan. You will receive a letter explaining the decision. A denial of benefits can be appealed. You have 90 days to request, in writing, a review of your application. A doctor's letter should accompany each appeal. While there is no required form for a doctor's letter in support of an appeal, the format suggested here could be effective.

Click here for a sample doctor's letter

Your CPP Disability Hearing
If you have applied for CPP disability benefits and have been refused, you will be notified by letter. You will be advised that you can appeal the refusal by writing a further letter requesting a review of this decision.

You should talk to your doctor and get a stronger medical letter from him or her, describing your disabilities in greater detail, and enclose it with your appeal application. If you have new medical information from other doctors, consider including that documentation. Make sure that you respond within the time limit that they specify or your claim will be cancelled. Follow their instructions carefully.

When they receive your request for a review, the CPP authorities will have your application and the additional information reviewed by an appeal officer, who will go over your file to see if the original rejection should be reversed.

You will be notified of this decision in due course. If your application is still rejected you have the right to a further appeal hearing before an appeal panel of three persons in a large community where or near where you live. These panels are put together fairly frequently and they hear several appeals in a one- or two-day hearing session.

To start the process for your appeal hearing, you must follow the CPP's officer's instructions and send a letter stating that you want to appear before an appeal panel. The CPP authorities will then schedule a hearing for you and advise you of the time and place. Contact your doctor (who might be your star witness) immediately, to see if he or she would be available. Regardless of whether or not your doctor is willing to attend the hearing, the doctor's letter will be an important document in your appeal.

With the letter advising you of the hearing, you will receive a package of materials, which the CPP officer intends to rely upon to reject your application. It will contain the medical reports that you had sent them and a report of the officer who rejected your claim stating his reasons for the rejection. Read this report carefully as you must counter-act its comments.

The best way to counteract the CPP's rejection is to have your doctor state in writing that in his or her opinion you are severely disabled and you will be so for a prolonged period of time. If your doctor is not able to come to this conclusion you will not win.

The review panel consists of three persons (members of the community appointed by the government) who schedule the hearing in a local hotel or other room. The atmosphere is very informal but your presentation will not be informal. The hearing starts with an introduction and welcome by the panel chairperson who then asks you to present your case. You should then:

1.   Make a brief introductory statement explaining who you are and what you want - a disability pension as a result of your severe disability, which will last for a prolonged period of time. You won't have to go through all the paperwork; they will have read the materials that the CPP officer sent to you. Tell the panel who will be your witnesses. This will give them an idea of what to expect and allow them to prepare to take notes.

2.  Call your doctor as your first witness if he or she is able/willing to attend. Give the panel three copies of his resume. Ask the doctor to review his or her resume so that he or she can inform the panel of his or her training and experience. Then ask the doctor to review all your medical records to describe your condition to the panel. Finish by asking him or her to give an expert opinion as to what your disabilities are, when they became totally disabling, how bad they are, and how long they are expected to last. Your doctor will have been a courtroom expert witness in the past so he or she will be quite comfortable with this process. Make sure that the doctor gives a date when the disability became severe as that is the date that the disability payments will commence. At the conclusion of the doctor's evidence, the panel may ask him or her questions.
If your doctor does not attend, refer the panel to the summary statement describing your condition on your medical report and point out how your doctor has stated it meets the criteria of a severe and prolonged condition.

3.   Call family members (one or two) as witnesses. A father, mother, spouse, older child or friend, can describe the details of your life and the difficulties that you have. Describe the ordinary activities that are difficult or impossible, such as getting dressed in the morning, preparing meals, taking care of children, traveling about, looking after your family. This is to give a concrete and graphic picture of your disabilities to the panel.

4.   Give evidence yourself. Explain what your problems are. Describe the difficulties you have doing everyday activities. Describe in detail what you cannot do and why. Then answer any questions the panel may have.

5.   The CPP officer will read their report and state why your claim should be denied. Argue against this. Give reasons why the officer is wrong.

After this, the chairperson will thank you for coming and state that will you get their decision directly from Ottawa in a few weeks. Be patient. This will take some time.

REMEMBER...the most important information is the medical information provided by your doctor. If he or she is not prepared to say that you are severely disabled for a prolonged period of time, you will probably lose. Ensure that you have given your doctor enough details concerning your condition so that he or she can form this opinion.

If the Tribunal denies your appeal, the Pension Appeals Board (which is independent of HRDC) is your final opportunity for appeal under CPP. It is important to note that both you and the Minister of Human Resources Development can appeal a Review Tribunal decision to the Pension Appeals Board. Permission to appeal (called "leave to appeal" must be requested in writing from the Pension Appeals Board within 90 days of receiving the letter of denial from the Review Tribunal. The letter should go to:

The Pension Appeals Board has a handout on how to apply for leave to appeal. Before applying you should obtain a copy of this from the address above.

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Employment Insurance Benefits

If illness or disability makes you unable to work and you have paid into the Employment Insurance account, you may be eligible for Employment Insurance sickness benefits.

Employment Insurance (EI) is a Federal program, also administered through Social Development Canada (SDC). These benefits are available to individuals who have lost their jobs through no fault of their own (that is, not being fired or quit), cannot find work, but have contributed to the EI program. It is a "contribution-tested" program, which means that any money you have in the bank or any assets - like a house, a cottage or boat - are not considered when determining your eligibility. There are two EI benefits programs - regular benefits and special benefits, which include maternity, paternity leaves, compassionate care and sickness benefits.

Applications for EI sickness benefits include a basic EI application form, a special benefits form to specifically apply for EI sickness benefits and a medical form to be completed by the applicant's doctor, confirming the medical condition and the fact that it prevents the applicant from working. Information and applications for these benefits are available at any local Social Development Canada (SDC) office. Check your local telephone directory to local the HRDC office closest to you.

You need to return the application and medical form to your local SDC office along with your Record of Employment (ROE), provided by your employer. The ROE lists your insurable earnings and the hours you have worked over the last 52 weeks or since your first day of work, whichever is shorter. If you have had more than one employer within the last 52 weeks you must attach all of your ROEs to your application, as they will be required to calculate your claim for benefits. You will also need to provide and/or show your Social Insurance Number (SIN) when submitting your application.

In order to be eligible for the sickness benefit, a person must have worked at least 600 hours during the previous 52 weeks or since your last claim. You may be eligible for up to a maximum payment of 15 weeks of financial benefits at 55% of your income, to a maximum of $413.00 per week. If you are in a low-income family (a net income of less than $25,921.00 per year) with children, and you receive the Canada Child Tax Benefit (CCTB), you could be eligible to receive a higher benefit rate. In this case your increase will automatically be added to your EI cheque.

Your EI sickness benefits will automatically end after 15 weeks of sickness benefits have been paid out or when you reach the date your doctor stated that you would be ready to return to work.

If they have all the required information and if you qualify for benefits, your payment will usually be issued within four weeks of the start date of your claim. If you do not qualify, you will receive a letter explaining the reason(s) why your claim for benefits has been denied.

The first two weeks of your claim are a waiting period, and you are not paid for that period. This is like a deductible for any kind of insurance. Any earnings made during the two-week waiting period will be deducted from the first three weeks of payable benefits.

In some instances, the two-week waiting period may be waived or deferred, but only under certain circumstances, including for example:

• If you get paid sick leave from your employer following your last day worked, the waiting period may be waived;
• If you receive group insurance payments, you can serve the two-week waiting period during the last two weeks that these payments are being paid.

After the two week waiting period, you could be paid for a maximum of 15 weeks, or shorter if your doctor indicates on the medical that you can return to work sooner.

If you are having problems completing your EI application, you have the right to receive help. If you disagree with an EI-related decision, you have the right to appeal that decision. You may want to talk with an EI staff member about this, to assure that all details of your case have been given, including any new information not previously presented and as well, to ask questions to clarify concerns you may have regarding the decision.

If you decide to appeal, write to your local SDC office explaining what decision you are appealing and why. Your letter must be sent within 30 days of receiving the decision letter and include your name, address and telephone number; your Social Insurance Number (SIN); what decision(s) you are contesting and your reasons for appealing; if you want to attend the hearing; if you want your hearing in French or English; if someone will represent you at the hearing, include that person's name and address. Don't forget to sign and date your letter.

For further information on the Appeals process, contact your Employment Insurance office or see their brochure entitled Employment Insurance: Appealing a Decision, available at their office.

For more information about EI programs you can contact your local SDC office (check for a listing in the blue pages of your telephone directory), contact your local MP's office or visit their web site at www.sdc.gc.ca and look under EI benefits.

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Disability Tax Credit

The information in this section applies to federal tax rules. While the rules of the provinces may mirror those of Canada Revenue Agency (CRA), individuals should verify the requirements of their particular province or territory with a reliable tax accountant.

Under the federal Income Tax Act, people with certain disabilities may be eligible to claim a Disability Tax Credit (DTC). Individuals claiming the DTC must fill out a T2201 form, and have their doctor complete a form as well.

Individuals claiming the DTC will need documentation from their treating physician describing the severity and effect of their disability. Any other material confirming the condition and its effects can be helpful (for example, documentation from a Worker's Compensation Board or an insurance company).

The DTC is a non-refundable tax credit for individuals who have "a severe and prolonged mental or physical impairment, which markedly restricts their ability to perform at least one basic activity of daily living." As a tax credit, it reduces the amount of federal tax that may be paid. If you owe less tax than your DTC, or no tax at all, you may be eligible to transfer the credit to your spouse or supporting person.

Eligibility
The local taxation-processing centre decides on eligibility. If the centre needs further information to decide on a particular case, the case is referred to a panel of medical doctors knowledgeable in the specific area.

The fact that you receive CPP or other disability benefits (such as long-term disability benefits or worker's compensation) does not automatically qualify you to claim the DTC. Once more, the definition of disability is different again. CRA reserves the right to make its own decisions about eligibility. It may take into account the fact that you receive other benefits but that fact alone doesn't guarantee that you'll be eligible.

You are responsible for any costs involved in getting additional evidence about your condition to support your claim, even if CRA requests that evidence. Provincial health insurance will not cover such costs.

If you received the DTC in the previous taxation year and still meet the eligibility requirements, you are entitled to claim it again without sending a new Form T2201. If, however, the period stated on the original form ended in the previous year, or if CRA requests it, you must send in a new form.

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Medical Expenses Deduction

It is also possible, in certain circumstances - for example, if they have not been reimbursed by an insurance company - to claim medical expenses as a deduction on one's federal income tax form. Unlike the Disability Tax Credit, the Medical Expenses Deduction does not require you to be disabled and is available to everyone. There is, however, a formula that must be used to determine an individual's Medical Expenses Deduction, which is described in detail in Canada Customs and Revenue Agency 's (CCRA) tax booklet.

In short, you can claim the lower of the excess of 3% of net income (line 236) or the amount in excess of $1813.00 (based on 2004) Deduction of this tax credit is made on an income tax schedule. Do not submit the receipts with your tax return. But you do need to keep all receipts and other proofs of purchase (credit card slips, insurance forms, etc.) related to treatment of your condition.4

For expenses to qualify for the Medical Expenses Deduction, it is not necessary that they have been paid or incurred in Canada.

The Income Tax Act describes expenses that may qualify for this deduction. They include:

· Payments to medical practitioners, hospitals;
· Care of an individual with mental or physical impairment;
· Care of an individual in a self-contained domestic establishment;
· Care in an institution;
· Transportation expenses;
· Artificial limbs, aids and other devices and equipment;
· Premiums to private health insurance plans.

· Reasonable expenses related to renovations and alterations to a dwelling;
· Expenses related to rehabilitative therapy;
· Preventive, diagnostic and other treatments; and
· Medications

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Special Access Program

Website: http://www.hc-sc.gc.ca/hpfb-dgpsa/tpd-dpt/

The Special Access Program (SAP) is a federal program to provide access to non-marketed drugs for medical practitioners treating patients with serious or life-threatening conditions when conventional therapies have failed, are unsuitable, are unavailable or offer limited options. The SAP provides the authority for a manufacturer to sell a specific quantity of a drug and therefore grant access to a drug which cannot be otherwise sold or distributed in Canada. The scope of drugs considered for release by SAP includes pharmaceutical, biologic, and radiopharmaceutical products that are not approved for sale in Canada. SAP does not grant authority to use or administer a drug - this authority is considered to be within the practice of medicine, which is regulated at the provincial level.

SAP authorization does not constitute an opinion or statement that a drug is safe, efficacious or of high quality. SAP does not conduct a comprehensive evaluation to ensure the validity of drug information or attestations of the manufacturer respecting safety, efficacy and quality. These are important factors for practitioners to consider when recommending the use of a drug and in making an appropriate risk/benefit decision in the best interests of the patient. SAP strongly encourages practitioners treating patients with drugs obtained through SAP to seek informed consent prior to treatment.

To initiate a request a practitioner may write, telephone, fax or e-mail the Special Access Program:

Special Access Program
Therapeutic Products Program
Finance Building 2nd Floor
Tunney's Pasture
Ottawa, ON K1A 1B9
(613) 941-2108 (Office hours 8:30 am to 4:30 pm EST)
Fax (613) 941-3194
After hours: (613) 941-3061

Calls to this emergency service should be limited to requests for drugs or blood products requiring immediate or overnight drug delivery.

Websites: Main Health Canada site: http://www.hc-sc.gc.ca/english; Special Access Program (SAP) site: http://www.hc-sc.gc.ca/hpfb-dgpsa/tpd-dpt/

The Special Access Program is designed to help meet the needs of patients with serious or life-threatening conditions who require drugs that are not currently approved for use in Canada.

Under this program, the Drugs Directorate of the Health Protection Branch (Health Canada) can authorize the sale of certain medications to health care practitioners.

Responsibility for the Special Access Program is divided between two federal bureaus: the Bureau of Human Prescription Drugs and the Bureau of Biologics. Each bureau is responsible for authorizing the sale of drugs falling under its jurisdiction.

The Special Access Program does not deal directly with individual patients, it responds only to requests from health care practitioners. It is important to make sure that your doctor (or a delegated representative from a medical profession, such as a nurse or pharmacist) is familiar with the procedure for obtaining the release of drugs through the program. The person requesting the release of a drug should provide the following information with each request:

• Physician's name and telephone number;
• Address of physician's office or hospital pharmacy where the drug is to be distributed;
• Drug name and dosage form (i.e. tablet, capsule etc.);
• Name of manufacturer;
• Quantity of drug requested;
• Intended dosage;
• Patient information: initials, age, sex, condition;
• Medical indication for the use of the drug; and
• Whether it is a new request or a repeated request.

The procedure is for health care practitioners to telephone, fax or write a request for an emergency drug. Health Canada follows up any written request with telephone communication. Requests for emergency drugs are then considered and, if authorized, the manufacturer of the requested drug is notified by telephone by the EDRP.

This verbal notice is followed by a Letter of Authorization, with a copy sent to the health care professional making the initial request. The manufacturer has the final word on whether the drug requested will be supplied. The turn-around time from request to delivery is twenty-four hours, so it is crucial for the health care professional to have all of the above-mentioned information readily available.

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Accessibility Improvements

The Canada Housing and Mortgage Corporation
(http://www.cmhc-schl.gc.ca/en/prfias/rerepr/readaspr_005.cfm)

The Residential Rehabilitation Assistance Program for Persons with Disabilities (RRAP-D) is one of the Canada Housing and Mortgage Corporation programs which offers financial assistance to homeowners and landlords to undertake accessibility work to modify dwellings occupied or intended for occupancy by low-income persons with disabilities.

Homeowners may apply if the value of their house is below a specific figure and their household income is at or below established ceilings (limits) based on household size and area. Assistance is in the form of a forgivable loan.

Other programs include: Home Adaptation for Senior's Independence; Emergency Repair Program (ERP); and other Assistance Programs.

For more information check out the CMHC web site for financial assistance at http://www.cmhc-schl.gc.ca/en/prfias/rerepr/readaspr_005.cfm

Before filing the application, it would be best to go over it with a CMHC representative to make sure it is correctly prepared and that any supporting documentation (if required) is available.

In some areas of Canada, funding for these or similar programs is provided jointly by the Government of Canada and the provincial or territorial government. In these areas, the provincial or territorial housing agency may be responsible for delivery of the programs. Programs may vary in these areas as well.

Check the Provincial Resource section of the AdvoKit or the blue pages of your telephone directory for the telephone number of Canada Mortgage and Housing Corporation office close to you.

There is toll-free access to general information on all federal programs and services in both official languages at 1 800 O CANADA, or 1 800 622 6232. On the Government of Canada's Internet Website - http://gc.ca/main_e.html - a few related links that you might find helpful include:

Disability Web links
Tax Information for People with Disabilities
Persons with Disabilities on Line
Review Tribunals (CPP/0AS)
Veterans Affairs Canada (VAC)

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Provincial Resources

Each province has its own appendices of resources. The appendix is different for each province, listing selected provincial agencies, resources and services, with ways to contact them.

Each province is different, and yours may not have entries under every heading.

The list is far from complete - a complete list would fill a book. But it is a starting point for your advocacy on a provincial and local level.

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Other Resources

Short-Term and Long-Term Disability Benefits*

If you are employed, the company you are working for may offer extended health insurance as part of your benefit package. Health insurance benefits may include hospital room coverage, medication coverage, dental and vision coverage, life insurance, and professional services such as podiatry, massage therapy, chiropractic care and psychotherapy. Wage protection through short- and-long term disability income programs is another common benefit of health insurance packages.

Short-term disability programs (STD) provide coverage if you need to be away from work for medical reasons for a relatively short period of time, usually up to a maximum of six months. During this time period, your employer will hold your job for you as you are expected to return to work.

You will need to contact your Human Resource or Personnel Department to find out what steps you must follow to apply for STD. In any case, your doctor will need to provide some basic information to your employer and more detailed medical information to the benefits/insurance company.

The exact amount that you may be eligible for under short-term disability benefits is based on the contract negotiated between your employer and the benefits/insurance company. Generally STD programs will cover up to 26 weeks away from work, paying between 60% and 100% of your current wage. Some plans start immediately; others have a waiting period. Some plans may start after you have used up all of your sick days and vacation time, others start after you have used your sickness benefits from Employment Insurance (EI), while others will provide coverage in place of EI benefits or top-up your EI benefit amount to that of your current wage.

You should review your employee handbook to learn about the specific details of your STD program. A copy of the handbook can be obtained from your Human Resource or Personnel Department. If your company does not have such a handbook, make an appointment with the person in charge of benefits/personnel to find out about what you are entitled to. If there is a union in your workplace, the union steward could be helpful as well.

The insurance company will have a claims adjudicator or liaison employee who can also be contacted for information. Use discretion when giving personal information - you need to keep in control of both your medical information and any decisions about a potential leave from work.

If it is going to take a while to receive your STD benefits, you may have to apply for Employment Insurance (EI) sickness benefits. For details, see the earlier section entitled Employment Insurance Benefits. Long-Term Disability Programs (LTD) cover employees who have a severe illness or disability that prevents an individual from doing their job/or any other job. The definition of disability used by LTD programs tends to be similar to that of the Canada Pension Plan, but not necessarily identical.

To determine eligibility you will have to complete an extensive application, which you will submit to the insurance company. A detailed medical report completed by your doctor will also be required.

LTD benefits are also based on the contract between the employer and the insurance company. Generally LTD starts between six and twelve months after leaving work due to illness and pay between 50% and 90% of your pre-disability wage. LTD usually requires you to use up any pre-LTD sources of income, such as short-term disability or EI sickness benefits, before you will qualify.

Your LTD provider will want you to apply to any other source of income you may be eligible for such as CPP-Disability, Workers Compensation Pension, etc. Amounts received from any of these sources will be deducted dollar for dollar from your total LTD benefit. Your LTD plan will want to evaluate your work potential based on own occupation/any occupation criteria. In your first two years on LTD, you will be evaluated based on your ability to do your own job, after that you will be evaluated against your ability to do any job (occupation) for which you are reasonably suited based on your training, education and experience.

LTD benefits are taxable income, unless you paid a tax premium for a LTD benefit, in which case your LTD will be a tax-free income.

You are still an employee of the company while you are on LTD and may be eligible for some of the other extended health benefits offered. Some plans may require you to pay some of the premium costs for the extended health benefit or life insurance in order to keep this coverage. As with STD, you can find out specific details on LTD from your employee handbook, the person in charge of benefits, a union steward or the insurance company, but again, use discretion about what information you give out.

Private Short-Term and Long-Term Disability Plan
Some individuals, usually self-employed, contract or seasonal workers, purchase their own private STD and LTD through insurance companies, alumni associations, interest or business groups or with an investment company. Most of the points mentioned earlier about employer-based STD/LTD plans apply to private plans, except that rather than your employer negotiating the contract, either you did it yourself or the association negotiated it on behalf of its members.

As with the employer-based STD/LTD plans, review your documents and policy to learn about your benefits. Consider contacting the claims adjudicator or insurance provider to answer any questions you may have. Use discretion in disclosing your medical circumstances without supporting documentation from your doctor.

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Personal Assets*

You may have acquired financial resources that you had forgotten about or that you do not know how or when to use. Such resources maybe used to help reduce the financial burden in either the short- or long-term when living with a chronic disease like Lupus.

Resource persons, for example, a bank manager, investment planner, financial planner or credit counsellor can help you with your decisions regarding your assets. It may also be helpful to speak with others who have gone through a similar experience. One of the most important things to remember when considering your own assets is to review all of the terms, conditions and documents that describe each asset. This will give you the knowledge and the tools you need to best decide if and how to use any assets you may have.

Your assets may include stocks, bonds, GIC's, mutual funds and/or RRSP's. You may also have a life insurance policy, which may offer you some options as well.

If you have made any major purchases recently such as a house or a car, you may have purchased insurance and have coverage through a long-term disability premium or a wage-loss protection premium. You may also have credit cards that have disability insurance coverage. It is important that you review your contract(s) and policy(s) to find out if you have long-term disability insurance.

Contact the insurance company(s) to see if you qualify and what steps you must take to apply for benefits. Insurance companies will often deny benefits to applicants when they first apply. Don't be discouraged. Appeal their decision. Unfortunately the insurance companies may not provide you with information on appealing a claims denial.

You must research your particular insurance company yourself. Have the insurance company explain in writing why they have denied your claim. It is important to remember that most insurance companies have an OMBUDSMAN or CONSUMER RELATIONS OFFICE. A major role of the Ombudsman is to ensure that the process of assessing/evaluating your application is fair. It is your right to contact the Ombudsman's office and talk with them about your situation. Let them know that you are appealing the decision and that you would like to have them involved in the process. They will also be able to explain the process followed by that particular insurance company.

Send a letter to your claims adjudicator explaining why you are appealing the decision along with any relevant medical information and any other relevant documentation. Make sure you include your claim number and that you date and sign the letter. A copy should be sent to the Ombudsman's office if you have asked for their assistance.

Financial Resources for Prescription Drugs

Drug Assistance Programs

Most pharmaceutical companies run programs aimed patients who are having financial difficulties and are not eligible for any other private insurance or government assistance. Each company has different requirements and most if not all require a physician to register the patient. Many doctors are aware of these programs and will have no problem in writing to them on your behalf. You may call the company that makes the medication you need assistance on and inquire about the procedure necessary in your case. The programs run by the pharmaceutical companies should not be misused since this may be the only way for some people to receive life-saving medications.

Here are some web sites to help you locate the drug company and program that is offered:

http://www.cancersupportivecare.com/drug_assistance.html
http://www.needymeds.com/

To make it easier for physicians to identify programs available for needy patients the Pharmaceutical Research and Manufacturers of America (PhRMA) put together The Directory of Prescription Drug Patient Assistance Programs. This directory applies to Canadians as well and can be printed off and given to your doctor for reference.

http://www.helpingpatients.org/

Doctor's Assistance
Many doctors receive samples from drug companies or can request them. Most doctors will try to help their patients get the medication they need, so tell your doctor about your financial situation. Your doctor may supply you with free sample medications or help you work out a solution to your dilemma.

Government Sponsored Drug Programs
The provincial governments across Canada offer various programs for those who are having financial difficulties and are not eligible for any other private insurance. These programs are usually run along with the provincial welfare program so therefore the financial requirements differ. You may not need to be unemployed to qualify so check your provincial section of the AdvoKit for contact information about the agency closest to you.

Parking Permits
You may be eligible to apply for a disabled parking permit. Pick up an application form from your Provincial Driver and Vehicle Licence Office. Discuss this with your doctor who will have to complete some portion of the form or submit a letter supporting your application. If your doctor supports your application, complete the form and return it to your local Licencing Office.

Personal Care Resources
In some communities across Canada, opportunities to access personal care resources at reduced rates (hair styling, esthetics, dental care or chiropractic care) exist through schools, colleges or universities. Check the yellow pages in your telephone directory under such headings as Schools-Academic-Colleges or Universities to see if any of these resources are available in your area. If a community college or university is listed you may have to contact them by telephone or check out their web site to see if they have programs in your area such as dental hygiene or dentistry and if they offer these services at a reduced rate.

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A Few More Tools

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Definitions

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