Self advocacy for beginners
March 20, 2013
Advocacy is often needed when supports and services for acquired brain injury are so minimal. Advocacy is about justice and the fundamental human needs, rights and interests of everyone, but particularly people with a disability.
WHEN IS ADVOCACY NEEDED?
Typical situations that require advocacy are:
• Other people (including service providers)have an obligation to you that they are not fulfilling
• Your rights are being ignored or violated
• You have a responsibility that is particularly difficult for you to carry out
• You are being misunderstood or are having trouble understanding others.
FINDING AN ADVOCACY SERVICE
Occasionally you can find advocacy services who will advocate on your behalf, but in these days of scarce funding you will often have to do this for yourself. Check with the Brain Injury Association in your State. An example in Queensland is QADA (Queensland Aged and Disability Advocacy), an advocacy service providing information, education, support and representation to enable people to understand and exercise their rights and their responsibilities (ring 07 3637 6000).
SELF-ADVOCACY
If you can’t find an advocacy service to advocate for you, then it is time to do it yourself. Though the following plan is not specific to any particular type of advocacy, these techniques are based on educating rather than directing. Work through each step as they are presented before moving on to the next one.
Remember, this is only a guide, so use your best judgement when planning to self-advocate.
1 What do you want to advocate about?
The first step in this process is to clearly identify what your goals are. You may have more than one goal; however it is important to remember that all your goals should be specific around the issue you are advocating. Make sure you write down things as you go so that you don’t forget anything and you remain focussed on your task. Having a goal is essential when you are self-advocating so that you have something to work towards. It also means that you have a sense of achievement once you reach that goal (and so you should!).
Another step that may be useful is to gather as much information about the issue as possible (this may be paperwork, notes, receipts, or other general documents). This will not only help you keep focused and motivated on your goal(s), but may be useful during the advocacy process. Again, make sure that any information or documents you have are specific to the issue you are self-advocating about. You may want to read through the information again to make sure you are familiar with it.
So now you have set your goal(s), but if you are going plan effectively you may need some more information. It may also be beneficial for you to have a strategy and some evidence. A strategy is a list of details related specifically to how you will achieve that goal or desired outcome. Evidence relates to the information or proof that will let you know you have actually achieved that goal or outcome. This format for planning not only gives you a comprehensive tool for self-advocating, but also the best chance at being able to achieve your goals. Don’t forget to check off each goal as you complete it.
2 Who do you need to speak to?
Who you actually need to talk to resolve an issue can sometimes be very confusing. If the reason you are advocating is because of a particular organisation, then you should contact that organisation first to start the resolution process. Remember, you must always give the service provider or organisation a reasonable opportunity to resolve the issue. It will be helpful to become familiar with the complaint process of the organisation you are dealing with.
In some cases you may not have been previously dealing with a service or organisation. The issue in this instance may be that you are not able to organise a vital service, or you have not received some information that you really need. You may have to contact a Government Department or an independent organisation (such as a Union or specific Advocacy group).
If you are not sure who to contact, call StrokeLine 1800 STROKE (787 653) for contact details to assist you in finding the most appropriate service. If the people you call can’t assist you, make sure you ask them if they know of anyone who can.
Always remember to make notes of the names of people you speak with, what you spoke about, and the date you spoke with them.
Keep these notes somewhere safe along with any other information you may have gathered.
3 What do I say?
What you say or write to an organisation or service provider is very important as it may influence how long the advocacy process takes. Make sure that you focus on your goal and are as specific as possible. If you are going to speak with someone on the phone about your issue, it may be helpful to write down what you are going to say before hand. If you are going to write a letter or an email, make sure you read through it a few times to make sure it is clear and to the point.
State clearly the issue you are talking about and indicate what action you think should be taken to resolve it. Make it clear that you are giving the service provider or organisation a chance to fix a mistake or omission if that is the issue.
It is important to remember that although you may be upset, you should always be polite and keep your cool. State your case calmly, clearly and confidently. If you find that the situation is becoming too much, calmly tell the person you are speaking with that you will call them back later and hang up.
Always remember to ask if you are unsure about anything (or you need something clarified), there are never any stupid questions!
4 What if I need someone else to assist me to advocate?
Why would you need anyone else to speak on your behalf? Depending on the issue you are dealing with, you may need a professional to communicate your views to the organisation you are dealing with, or assist you to organise a service. For example, if a medical issue is involved, a doctor may have to write a letter or speak with someone directly for the advocacy process to continue or for a service to be implemented. Don’t ever feel bad if you wanted to advocate purely on you own and you had to involve someone else, sometimes it is the only way to resolve an issue; it in no way means that you have failed.
Getting assistance from a family member or close friend is another good way to self-advocate if you are having trouble getting your point across. Your family and friends often know your situation well and they can work with you to achieve your goal.
5 How do I make contact?
There are several different methods you can use to self-advocate; phone, email, letter, fax, or the media. Choose the method that best suits you, or the one you feel most comfortable with. Remember that the way you raise your issue will be different from place to place. Some organisations will only accept letters.
6 How do I tell if it’s working?
Hopefully after Step 1 you have completed a plan of how you are going to self-advocate i.e. your strategy, evidence and goals. The
best way to evaluate how you are going with the advocacy process is to take some time and review your plan. If (for a specific goal) you have completed the strategy and you now have your evidence, then you should have completed your goal, congratulations! If you feel that your goal is completed, make sure you check it off your list. This will not only give you a sense of achievement, but also prevent you from doing any additional, unnecessary work.
You may however, not feel as though the goal has been completed, even if you have done the strategy just as you outlined. If this is
the case, then you should go back and review the strategy, evidence, and goals you have set yourself. It may be a matter (especially after you have now had some experience) of redefining some of your strategies or evidence to better suit the goal you have. You might have found that the strategy you identified does not work or is not practical and you may need to make some changes. Additionally, you may find that the goals you have previously set are too big or too broad. If this is the case, you may need to re-evaluate your goal and break is up into smaller, more manageable goals The benefit of this is that you have a more realistic idea of how you are progressing, and you should know a lot earlier if things are not going according to your plan.
SELF-ADVOCACY TIPS
Keep all relevant records and documents
• Record important information during phone conversations
• Ask for the company’s policy and procedures on complaint resolution
• Remain calm and specific to your goals when dealing with people
• Ask to speak to someone higher up if responses aren’t satisfactory
• Ask if there is an external agency that can help resolve the issue
• Keep trying… never give up.
To find advocacy services, please check with Stroke Foundation 1800 787 653, the Brain Injury Association or Stroke Association in your State.
WHEN IS ADVOCACY NEEDED?
Typical situations that require advocacy are:
• Other people (including service providers)have an obligation to you that they are not fulfilling
• Your rights are being ignored or violated
• You have a responsibility that is particularly difficult for you to carry out
• You are being misunderstood or are having trouble understanding others.
FINDING AN ADVOCACY SERVICE
Occasionally you can find advocacy services who will advocate on your behalf, but in these days of scarce funding you will often have to do this for yourself. Check with the Brain Injury Association in your State. An example in Queensland is QADA (Queensland Aged and Disability Advocacy), an advocacy service providing information, education, support and representation to enable people to understand and exercise their rights and their responsibilities (ring 07 3637 6000).
SELF-ADVOCACY
If you can’t find an advocacy service to advocate for you, then it is time to do it yourself. Though the following plan is not specific to any particular type of advocacy, these techniques are based on educating rather than directing. Work through each step as they are presented before moving on to the next one.
Remember, this is only a guide, so use your best judgement when planning to self-advocate.
1 What do you want to advocate about?
The first step in this process is to clearly identify what your goals are. You may have more than one goal; however it is important to remember that all your goals should be specific around the issue you are advocating. Make sure you write down things as you go so that you don’t forget anything and you remain focussed on your task. Having a goal is essential when you are self-advocating so that you have something to work towards. It also means that you have a sense of achievement once you reach that goal (and so you should!).
Another step that may be useful is to gather as much information about the issue as possible (this may be paperwork, notes, receipts, or other general documents). This will not only help you keep focused and motivated on your goal(s), but may be useful during the advocacy process. Again, make sure that any information or documents you have are specific to the issue you are self-advocating about. You may want to read through the information again to make sure you are familiar with it.
So now you have set your goal(s), but if you are going plan effectively you may need some more information. It may also be beneficial for you to have a strategy and some evidence. A strategy is a list of details related specifically to how you will achieve that goal or desired outcome. Evidence relates to the information or proof that will let you know you have actually achieved that goal or outcome. This format for planning not only gives you a comprehensive tool for self-advocating, but also the best chance at being able to achieve your goals. Don’t forget to check off each goal as you complete it.
2 Who do you need to speak to?
Who you actually need to talk to resolve an issue can sometimes be very confusing. If the reason you are advocating is because of a particular organisation, then you should contact that organisation first to start the resolution process. Remember, you must always give the service provider or organisation a reasonable opportunity to resolve the issue. It will be helpful to become familiar with the complaint process of the organisation you are dealing with.
In some cases you may not have been previously dealing with a service or organisation. The issue in this instance may be that you are not able to organise a vital service, or you have not received some information that you really need. You may have to contact a Government Department or an independent organisation (such as a Union or specific Advocacy group).
If you are not sure who to contact, call StrokeLine 1800 STROKE (787 653) for contact details to assist you in finding the most appropriate service. If the people you call can’t assist you, make sure you ask them if they know of anyone who can.
Always remember to make notes of the names of people you speak with, what you spoke about, and the date you spoke with them.
Keep these notes somewhere safe along with any other information you may have gathered.
3 What do I say?
What you say or write to an organisation or service provider is very important as it may influence how long the advocacy process takes. Make sure that you focus on your goal and are as specific as possible. If you are going to speak with someone on the phone about your issue, it may be helpful to write down what you are going to say before hand. If you are going to write a letter or an email, make sure you read through it a few times to make sure it is clear and to the point.
State clearly the issue you are talking about and indicate what action you think should be taken to resolve it. Make it clear that you are giving the service provider or organisation a chance to fix a mistake or omission if that is the issue.
It is important to remember that although you may be upset, you should always be polite and keep your cool. State your case calmly, clearly and confidently. If you find that the situation is becoming too much, calmly tell the person you are speaking with that you will call them back later and hang up.
Always remember to ask if you are unsure about anything (or you need something clarified), there are never any stupid questions!
4 What if I need someone else to assist me to advocate?
Why would you need anyone else to speak on your behalf? Depending on the issue you are dealing with, you may need a professional to communicate your views to the organisation you are dealing with, or assist you to organise a service. For example, if a medical issue is involved, a doctor may have to write a letter or speak with someone directly for the advocacy process to continue or for a service to be implemented. Don’t ever feel bad if you wanted to advocate purely on you own and you had to involve someone else, sometimes it is the only way to resolve an issue; it in no way means that you have failed.
Getting assistance from a family member or close friend is another good way to self-advocate if you are having trouble getting your point across. Your family and friends often know your situation well and they can work with you to achieve your goal.
5 How do I make contact?
There are several different methods you can use to self-advocate; phone, email, letter, fax, or the media. Choose the method that best suits you, or the one you feel most comfortable with. Remember that the way you raise your issue will be different from place to place. Some organisations will only accept letters.
6 How do I tell if it’s working?
Hopefully after Step 1 you have completed a plan of how you are going to self-advocate i.e. your strategy, evidence and goals. The
best way to evaluate how you are going with the advocacy process is to take some time and review your plan. If (for a specific goal) you have completed the strategy and you now have your evidence, then you should have completed your goal, congratulations! If you feel that your goal is completed, make sure you check it off your list. This will not only give you a sense of achievement, but also prevent you from doing any additional, unnecessary work.
You may however, not feel as though the goal has been completed, even if you have done the strategy just as you outlined. If this is
the case, then you should go back and review the strategy, evidence, and goals you have set yourself. It may be a matter (especially after you have now had some experience) of redefining some of your strategies or evidence to better suit the goal you have. You might have found that the strategy you identified does not work or is not practical and you may need to make some changes. Additionally, you may find that the goals you have previously set are too big or too broad. If this is the case, you may need to re-evaluate your goal and break is up into smaller, more manageable goals The benefit of this is that you have a more realistic idea of how you are progressing, and you should know a lot earlier if things are not going according to your plan.
SELF-ADVOCACY TIPS
Keep all relevant records and documents
• Record important information during phone conversations
• Ask for the company’s policy and procedures on complaint resolution
• Remain calm and specific to your goals when dealing with people
• Ask to speak to someone higher up if responses aren’t satisfactory
• Ask if there is an external agency that can help resolve the issue
• Keep trying… never give up.
To find advocacy services, please check with Stroke Foundation 1800 787 653, the Brain Injury Association or Stroke Association in your State.