Health Policy-Advocacy: When Others Need to Take Over
Part of being a good advocate for yourself means making advance plans for what you want and need others to do for you when you are not able to do things for yourself. Certainly, you hope that this will never be necessary, that you will always be able to take care of yourself. However, even with your best intentions and efforts, this may not be the case. While difficult times may lessen in frequency or intensity as you learn how to better manage severe symptoms, they may continue to be an issue from time to time.
When you are feeling well, write a plan that describes what you want others to do for you when you cannot take care of yourself. This keeps you in control even when it feels like things are out of control. Laws about the legality of these documents differ from state to state. Check with your attorney or the Protection and Advocacy Agency in your location to see what kind of document is legal in your state, territory or province. Even if the document is not legal in your location, it will be a helpful guide for your chosen supporters.
Begin by learning about all treatment options suggested including information that expresses a variety of viewpoints. Discuss them with your physician and other health care professionals.
Think about things that have been helpful or not helpful in the past.
Then develop a document that might be called a Document of Treatment Preference, Advanced Directive, or a Crisis Plan.
You can get a copy of a model form. Discuss your plan with your doctor or health care provider. Include the following information:
- a list of those symptoms that show others you can no longer care for yourself or make good decisions in your own behalf
- the names of people whom you would want to take over for you, like family members, friends, and health care providers (designate whom you would want to make final decisions if your supporters can't agree)
- medications you are currently taking, those that might be used in a crisis, and those that must be avoided
- treatments and treatment facilities that would be helpful and those that should be avoided
- a plan for being cared for in your home or in the community
- things that others can do that would help you to feel better and things that might make you feel worse
- chores or tasks you need others to take over for you like, child and pet care and paying bills
- a listing of indications that you are well enough to take care of yourself and that your supporters no longer need to follow this plan.
Sign and date the plan. Give each of your supporters, your health care providers and your doctor a new copy of the plan each time you change it.
Give copies of this plan to anyone who might be assisting you now. Update your plan as necessary.
Speaking out for yourself often is difficult. Give yourself a pat on the back for each action you take. When you do something that is very hard or that is a major accomplishment, give yourself a treat, like taking a walk, calling a friend, or visiting a museum. Don't be discouraged by setbacks. Applaud yourself for starting again. And always keep in mind?
You are a unique and valuable person. You have the right to speak out for yourself, to protect your rights, and to insist that others treat you well.
Sourced from Speaking Out For Yourself: A Self-Help Guide, SAMHSA booklet SMA-3719