Protection & Advocacy, Inc., 1-800-776-5746, legal@pai-ca.org ----------------------------------------------------------------- Introduction to Self-Advocacy Enclosed is a description of what self-advocacy is and some forms to help you prepare to advocate on your own behalf. These forms were originally developed by staff members on the Peer and Self-Advocacy Program of the California Network of Mental Health Clients as part of a contract with Protection and Advocacy Inc. They have been revised over time in response to suggestion by the people who have used them. They are designed for use by a wide variety of persons with a variety of problems and situations. Please feel free to modify them to best fit your personal use. At first it may seem awkward and time consuming to fill out these forms. However, we have found that people have more success when they take the time to put down on paper their particular problem and then develop a plan for resolving it. Good luck as you begin to advocate for yourself and regain control of your situation. If you need assistance in completing these forms or in performing self-advocacy, please contact me at (916) 488-9950, or 1-800-776-5746 (toll free). If you have suggestions for changes or additions to these forms, please let us know. We need to ensure that these forms are suitable for the persons who use them. Lori Shepherd Peer/Self-Advocacy Coordinator Protection & Advocacy, Inc. March 30, 1996 Copyright (c) 1990 - Protection & Advocacy, Inc.Revised and Updated 1996 Protection & Advocacy, Inc., 1-800-776-5746, legal@pai-ca.org ----------------------------------------------------------------- Description of Self-Advocacy Self-advocacy is different from the traditional form of advocacy services for mental health clients. In a traditional advocacy program, you give your complaint to an advocate, who would take the issue to the appropriate staff member for you and follow whatever due process or appeals might be necessary to attain your desired goal. The advocate then reports back to you when the issue has been resolved. In self-advocacy the goals is for you, the client, to decide what it is you want, find out how to about getting what you want, develop a plan, and carry out the plan. This include learning new skills, utilizing others to get what you want, and seeking assistance from those in a position to assist you. You may learn some of the skills necessary to successfully advocate for yourself from a patients' rights advocate. In self-advocacy the role of the advocate becomes a supportive one of helping you learn strategies and skills necessary to resolve your problem such as: "Who do you approach first? How do you negotiate? The advocate may assist you to learn listening, negotiation, problem solving, or assertiveness skills. A major goal of self-advocacy is to empower you to speak for yourself and participate in decisions affecting your life. You need to know your counselor, case manager, doctor, conservator, and other who are involved in your treatment plan. Keep in contact with them and take an active part of your treatment plan. Keep all copies of your treatment plan, court papers, and forms together. You never know when you may need them. There are four basic steps to self-advocacy: 1. Define the problem, 2. Develop an action plan, 3. Carry out the action plan, and 4. Evaluate the results. The first step is to define your issues and/or complaints. You need to become clear as to what the problems and goals are and how you would like to achieve your goals. Know the laws regarding your issues. It may be helpful to write down what the problems are and what the desired solutions are to reach your goals. Select one or two issues that you would like to work on. Write them down in a clear statement of problems and how you would like to see it resolved. Make a list of the possible solutions to your problems. Discuss the pros and cons of each solution. Select the solution you feel most comfortable with. After you have defined the issues and selected a solution for achieving your goals, you need to develop a plan for action. You will have a good idea of what the problem is, what you would like to accomplish, and how you would like to accomplish it. You need to develop an action plan to achieve your goal. You will develop steps defining how you will accomplish your goals and target date by which each step is to be completed. This may include gathering documentation and support for your case. It may be helpful to keep a log of your activities. In this phase you may want to seek out support from peers, family members, friends, staff members, and others who are supportive for your goals. You may need to demonstrate that your plan is a workable one that should be supported by others. Part of developing a plan is making sure you have contingency plans in case you need to change your strategy to get what you want. Decide what issues you are willing to give in on and what the minimum is you are willing to accept. The third step is putting your plan into action. Now you will carry out the steps of your action plan. You should be prepared to negotiate with staff members, your conservator, an/or your doctor, using assertiveness techniques. You may want to role-play or rehearse what you are going to say and get feed-back from others as to effective ways to approach persons in charge. This may involve meeting with key staff persons, involving the advocate, making phone calls, and writing letters. Your actions should be clear and concise with a clear statement of the problem and recommendations of how you would like to the problem resolved. Timing is important when presenting your issue. Is the person better to approach in the morning or afternoon? Is it better to approach him/her when he/she is alone? Would he/she respond better if you write him/her a letter? Never approach a situation when you are angry. You may want someone you trust to go with you for support. They can act as a witness to what is being said. During the meeting remain calm and stick to the facts. Do not become argumentative or emotionally excited. If you find you are becoming upset, leave the conversation and re-approach the situation at a later time. It is okay to let him/her know how you feel, but never use personal attacks or obscenities in your discussion. Stick to the issues. If he/she changes the topic, bring it back to the issue(s) you want to discuss. At the end of the meeting, thank him/her for his/her time. Ask by what date can you expect to hear from him/her about your issue. You need to be sure you document all of your efforts when making a phone call. Be sure to have a paper and pencil handy before making the call. Write down the date, time, agency, and the person you talk to. Write down your questions before placing the phone call. Write down their answers. Send a letter confirming any agreements made. Also, be certain to set a time line for achieving all agreements. The last step is the evaluation phase. Once you have gone through the steps of your action plan, you need to evaluate what happened. You need to review what you did, how you did it, and did you accomplish what you hoped to? If you didn't accomplish what you hoped to, what steps do you need to take to be successful in getting what you want. If the solution you originally selected did not work out, you will want to look at achieving it through different means or selecting a new solution and developing a different action plan. It is important not to give up if your first attempt to change something doesn't work out. You may have to stop your plan and try other tactics to achieve your goal, but the important thing to remember is to keep trying until you resolve your problems and get what you want. DOCUMENTATIONYou can fight the system, but not by yelling and screaming! The key to getting your problems solved to your satisfaction is to document what happened. It is easy to use the Who, What, Where, When, Why, method when writing down. You can get what you want if you understand the system and can identify supportive people to help you. You can be successful at getting what you want if you understand what your rights are, ask for what you want, and keep a record of what you are told. There are laws and regulations to protect your rights and agencies which are required to assist you in protecting them. Before you can begin to protect your rights, you need to know what they are, and who can help you protect them. Each county is required by law to have a patients' right advocate to investigate complaints. KEEP A RECORD OF YOUR SITUATION - Keep all letters you receive and a copy of the letters you send. - When you sign forms you have a right to a copy. This will establish a record of what you have agreed to. - You have the right to participate in your treatment plan and you have a right to a copy of your treatment plan. You should know your treatment plan well and you should be telling the staff what you want, and writing a note to record what you want, and who you told. HOW TO KEEP A RECORD: AN EXAMPLE Write Down: Who: Who you contacted -- name, phone number, address and title. When: Date and time of contact. What you want: What you want in a word or two -- vocational training, change of medication, treatment complaint, etc. What they said: What you were told. Example of a note: Who: Dr. Jones When: 4-1-96; 9 a.m. What you want: Change of meds - told the Dr. I was shaking from the meds. What they said: He said he would evaluate me before the end of the day. or Who: Mrs. Mary Smith, evaluator at Social Security Office. When: 4-1-96; 3:30 p.m. What you want: SSI check not received. What they said: Computer foul up. I was incorrectly cut off from my SSI check. I should receive my check in 10-15 working days. If you don't get what they said you would get, then you will have to contact another person and make another note. If you still don't get satisfaction you can file a complaint with the patients' right advocate. TAKE CONTROL OF YOUR SITUATION By keeping a record and writing letters you will be able to use your legal power to get what you want. You have the right participate in your treatment. You can get what you want within available options, but it all depends on you. You have to document your case and keep a record. If you are still unable to get what you want, your documentation will be important when you go to get advocacy services. Documentation will help the advocate figure out what the facts are, who the service providers involved are, and when you were told that something would happen. If your information is complete and written down, an advocate will be better able to assist you to get what you want. Adapted from Cope Advocacy, Department of the Public Advocate, Division of Mental Health Advocacy, Trenton, NJ 08625. BLANK FORM TO USE WHO: ----------------------------------------------------------------- WHEN: ----------------------------------------------------------------- WHAT: ----------------------------------------------------------------- WHAT YOU WERE TOLD: ----------------------------------------------------------------- SELF ADVOCACY I. DEFINE THE PROBLEM A. Before you can begin to advocate for yourself, or for anyone else, it is important to know exactly what the problem is that you are trying to resolve. Just saying "I can't stand the mental health system anymore" isn't much help, you have to: DEFINE YOUR PROBLEMS AND IDENTIFY THE POSSIBLE SOLUTIONS 1. What exactly is the problem? ______________________________________________________________ ______________________________________________________________ ______________________________________________________________ 2. How often does the problem occur? ________________________________ 3. Have I tried to resolve this problem before, and what was the result? ______________________________________________________________ 4. Do other clients share my problem? ________________________________ 5. Has anybody else tried to solve a similar problem? ___________________ ______________________________________________________________ 6. What has worked in the past? _____________________________________ ______________________________________________________________ 7. What hasn't worked in the past? ___________________________________ ______________________________________________________________ 8. Does the law address my problems? ________________________________ If so, which laws? ______________________________________________ 9. Do I know Who, What, Where, When, Why? _______________________ Who: _________________________________________________________ What: ________________________________________________________ Where: _______________________________________________________ When: ________________________________________________________ Why: _________________________________________________________ 10. Share contacts and resources a. Find out how the system works _______________________________ __________________________________________________________ II. ORGANIZE AND DEVELOP AN ACTION PLAN A. Identify the possible solutions: 1. File a formal complaint 2. Hold an informal meeting to negotiate solution 3. Write a letter B. Select the solution you feel most comfortable with and break it down into "do-able" steps with target dates by which each step is to be completed, i.e., informal meeting to negotiate solution. 1. Who will you approach? _________________________________________ Target Date: _________________ 2. How will you approach that person? (telephone, in-person meeting, letter) ______________________________________________________________ Target Date: __________________ 3. Who is supportive of your efforts? _________________________________ 4. What are your strong points? a. Your legal rights ___________________________________________ __________________________________________________________ __________________________________________________________ b. Benefits to you and others ___________________________________ __________________________________________________________ __________________________________________________________ c. Facts in your favor _________________________________________ __________________________________________________________ __________________________________________________________ d. Other important information __________________________________ __________________________________________________________ __________________________________________________________ 5. What are your weak points? a. Admit mistakes. ____________________________________________ __________________________________________________________ __________________________________________________________ 6. What costs, if any, will be involved in the changes you want? __________ ______________________________________________________________ ______________________________________________________________ 7. Know what you want and offer possible solutions. ____________________ ______________________________________________________________ ______________________________________________________________ 8. Anticipate the view of your opposition and be ready to answer them. ___ ______________________________________________________________ ______________________________________________________________ ______________________________________________________________ ______________________________________________________________ 9. Decide on a bottom line position you can agree to. ___________________ ______________________________________________________________ ______________________________________________________________ ______________________________________________________________ ______________________________________________________________ 10. Role-play with others the presentation of your case. Target Date ______________________ III. ACTION STAGE Risk-taking is the emotional component in presenting your case. Will you get upset during the meeting? In presenting the problem, you must evaluate how much emotion you think might be appropriate. An alternative approach is to check to see if you can discuss your case over the telephone with the notes in front of you. Or you may want to have a supportive person present to assist you. If you present the case with another person, have signals for when you feel that the other individual should enter the conversation and when the discussion should end. Evaluate your mood during the week. Is there a better day to hold the meeting? A. Set your plan in motion. 1. Make an appointment, or set a time that is convenient for everyone to meet. B. Keep your presentation simple. 1. Start with your most persuasive facts and arguments. 2. Say only the important things about the problem. 3. Keep it short. 4. Say what you have to say and stop. C. Be willing to listen. 1. He/she may be willing to give you what you want under certain conditions. 2. Ask politely about his/her reaction to what you say. 3. Address the problems he/she raises and show why your solution is better. 4. Try to think of reason why he/she would want to do what you want. D. Make Agreements. 1. State what you are willing to do. 2. State what your understanding of what the other person is willing to do. 3. Set a timeline for achieving these agreements. 4. After the meeting or phone call, send a letter confirming all agreements that were made and the timeline for achieving these agreements. E. Document your efforts 1. Keep a record of all phone calls. After completing your negotiation, or whatever approach you chose, you are ready for the last step, evaluation. This is very important so you can know what went wrong and what went right, and use your experience for your next advocacy effort. IV. EVALUATION Self advocacy is representing your own needs, problems, or position. Each advocacy effort, regardless of outcome (success, partial success, or failure) is a REHEARSAL. As mental health clients, self-representation, or self advocacy, may occur frequently. Each advocacy effort can be viewed as practice or a rehearsal for the next year. Therefore, evaluation will assist in the preparation of future advocacy efforts. A. Evaluation takes place throughout the entire advocacy effort, at every step. We must evaluate to determine: 1. Did I get what I wanted and/or needed? ____________________________ ______________________________________________________________ ______________________________________________________________ B. Evaluate after the presentation. 1. What went right? _______________________________________________ ______________________________________________________________ ______________________________________________________________ a. Why? _____________________________________________________ __________________________________________________________ __________________________________________________________ b. What did I learn? ___________________________________________ __________________________________________________________ __________________________________________________________ c. Can I use the same method again? _____________________________ __________________________________________________________ __________________________________________________________ d. How do I feel? _____________________________________________ __________________________________________________________ __________________________________________________________ e. Are my needs met? __________________________________________ __________________________________________________________ __________________________________________________________ 2. What went wrong? ______________________________________________ ______________________________________________________________ ______________________________________________________________ a. Why? _____________________________________________________ __________________________________________________________ __________________________________________________________ b. What can I change? _________________________________________ __________________________________________________________ __________________________________________________________ c. How do I feel? _____________________________________________ __________________________________________________________ __________________________________________________________ d. Was it a total loss or did I gain something? ______________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ NOTES: _________________________________________________________________ _________________________________________________________________ _______ _________________________________________________________________ _______ _________________________________________________________________ _______ _________________________________________________________________ _______ C. Evaluate losses and gains. 1. Losses _______________________________________________________ ______________________________________________________________ ______________________________________________________________ 2. Gains ________________________________________________________ ______________________________________________________________ ______________________________________________________________ D. Ask yourself: Can I capitalize on the gains and minimize the losses? _________________________________________________________________ _________________________________________________________________ _________________________________________________________________ _________________________________________________________________ _________________________________________________________________ Adapted from COPE Advocacy, Department of the Public Advocate, Division of Mental Health Advocacy, Trenton, NJ 08625 PROBLEM WORKSHEET Date of Incident: _____/______/_____ Issue/Problem: ____________________________________________________________ Facility/Agency/Person Involved: ____________________________________________ _________________________________________________________________ _______ _________________________________________________________________ _______ STATEMENT OF FACTS What happened? ___________________________________________________________ _________________________________________________________________ _______ _________________________________________________________________ _______ Who was involved? ________________________________________________________ _________________________________________________________________ _______ _________________________________________________________________ _______ Where did it happen? _______________________________________________________ _________________________________________________________________ _______ _________________________________________________________________ _______ Why did it happen? ________________________________________________________ _________________________________________________________________ _______ _________________________________________________________________ _______ _________________________________________________________________ _______ SAMPLE] COMPLAINT FORM TO THE COUNTY PATIENT RIGHTS ADVOCATE _________________________________________________________________ ______ DATE: 6/1/96 TO: Ms. Gloria Whitehead Patients Rights Advocate County Mental Health Dept. 134 Maxwell Drive The City, CA 90000 Dear Ms. Whitehead: Pursuant to Section 864(b) of the California Codes and Regulations, I wish to file the following complaint(s) with your office. My complaint(s) are as follows: 1) I was put in seclusion and restraints without good cause at Sunrise Hospital on 5/15/96. 2) I was not allowed to have visitors on 5/19/96 because I called the nurse names and refused to go to group. 3) The doctor talked to my mom and told her personal things about me without my permission. My desired resolution is to my complaint(s) is: 1) Investigate all complaints - report back to me your findings. 2) An apology from the facility for the way they treated me. 3) Take the doctor to Small Claims Court for violating my confidentiality. I request that any resolution and/or any findings be sent me at the following address: Address: 196 Glenwood Lane Signed: ____________________________ The City, CA 90000 Date: ____________________________ Phone: 387-9145 Enclosures: ( ) COMPLAINT FORM TO THE COUNTY PATIENT RIGHTS ADVOCATE _________________________________________________________________ ______ DATE: _________________________ TO: Patients Rights Advocate County Mental Health Dept. Dear : Pursuant to Section 864(b) of the California Codes and Regulations, I wish to file the following complaint(s) with your office. My complaint(s) are as follows: 1) 2) 3) My desired resolution is to my complaint(s) is: 1) 2) 3) I request that any resolution and/or any findings be sent me at the following address: Address: ________________________ Signed: ____________________________ ________________________ Date: ____________________________ Phone: ________________________ Enclosures: ( ) SAMPLE] COMPLAINT FORM TO THE COUNTY MENTAL HEALTH DIRECTOR _________________________________________________________________ ______ DATE: 7/1/96 TO: Mr. Bill Clark Mental Health Director Dogwood County 134 Maxwell Drive The City, CA 90000 Dear Mr. Clark: Pursuant to Section 864(c) of the California Codes and Regulations, I am filing the enclosed complaint with you. On 6/1/96, I filed this complaint with Ms. Whitehead, Patients' Rights Advocate. To date, she has not resolved this complaint to my satisfaction. According to these regulations, you have ten working days to respond to me. I request that my resolutions and/or my findings be sent to me at the following address: Address: 196 Glenwood Lane Signed: ___________________________ The City, CA 90000 Date: ___________________________ Phone: 387-9145 Enclosures: 1 COMPLAINT FORM TO THE COUNTY MENTAL HEALTH DIRECTOR _________________________________________________________________ ______ DATE: __________________________ TO: Mental Health Director Dear : Pursuant to Section 864(c) of the California Codes and Regulations, I wish to file the following complaint(s) with your office. My complaint(s) are as follows: 1) 2) 3) My desired resolution to my complaint(s) is: 1) 2) 3) I request that my resolutions and/or my findings be sent to me at the following address: Address: ________________________ Signed: ___________________________ ________________________ Date: ___________________________ Phone: ________________________ Enclosures: ( ) EXAMPLE] COMPLAINT FORM TO STATE OFFICE OF PATIENTS' RIGHTS _________________________________________________________________ ______ DATE: 7/20/96 TO: STATE OFFICE OF PATIENTS' RIGHTS Oakland, CA To Whom It May Concern: Pursuant to Section 864(d) of the California Codes and Regulations, I am filing the enclosed complaints with your office. On 6/1/96, I filed this complaint with Ms. Whitehead, Dogwood County Patients' Rights Advocate. She did not resolve any of my complaints to my satisfaction. On 7/1/96, I filed this complaint with Mr. Clark, Mental Health Director, Dogwood County. Enclosed is the letter he sent me, which did not resolve my complaint to my satisfaction. According to the regulations, you have thirty days to resolve my complaint. I request that any resolutions and/or any findings be sent to me at the following address: Address: 196 Glenwood Lane Signed: ___________________________ The City, CA 90000 Date: ___________________________ Phone: 387-9145 Enclosures: (3) Complaint form to Patients' Rights Advocate Complaint form to Mental Health Director Mental Health Director's letter to me COMPLAINT FORM TO STATE OFFICE OF PATIENTS' RIGHTS _________________________________________________________________ ______ DATE: ______________________________ TO: STATE OFFICE OF PATIENTS' RIGHTS 1600 Ninth Street Sacramento, CA 95814 To Whom It May Concern: Pursuant to Section 864(d) of the California Codes and Regulations, I wish to file the following complaint(s) with your office. My complaint(s) are as follows: 1) 2) 3) My desired resolution to my complaint(s) is: 1) 2) 3) I request that any resolutions and/or any findings be sent to me at the following address: Address: _______________________ Signed: ___________________________ ________________________ Date: ___________________________ Phone: ________________________ Enclosures: ( ) PLAN OF ACTION FOR ESTABLISHING THAT YOU ARE NOT "GRAVELY DISABLED" 1. What is your source of income? _________________________________________________________________ ____ _________________________________________________________________ ____ 2. Where will you live? _________________________________________________________________ ____ _________________________________________________________________ ____ 3. How or where will you eat? _________________________________________________________________ ____ _________________________________________________________________ ____ 4. How or where will you obtain your clothing? _________________________________________________________________ ____ _________________________________________________________________ ____ 5. Do you have any friends, family, church, clubs or organizations who will help you? _________________________________________________________________ ____ _________________________________________________________________ ____ 6. Do you have any support groups that you will be attending? _________________________________________________________________ ____ _________________________________________________________________ ____ 7. Do you plan to continue participating in Mental Health outpatients services? _________________________________________________________________ ____ _________________________________________________________________ ____ 8. How will you provide your transportation? _________________________________________________________________ ____ _________________________________________________________________ ____ MONTHLY BUDGET Income: $______________________ Expenses: 1. Rent _______________________ 2. Food _______________________ 3. Clothing _______________________ 4. Transportation _______________________ 5. Personal Items _______________________ 6. Medical/Dental _______________________ 7. Miscellaneous _______________________ 8. Entertainment _______________________ 9. Other _______________________ Total Expenses: $______________________ Less Total Expenses ______________________ Money Left Over $______________________ ----------