Lupus Canada Advokit

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.

Some Resources and Supports

· Lupus Canada
· Lupus Associations
· Disability Organizations
· Legal Clinics
· Self-Help Groups
· Library
· Member of Parliament
· Member of Provincial Legislatures
· Local social workers