Caregiving 101-How to be Your Own Advocate 

There are times when caregivers need to advocate for themselves or for the person they care for. Situations may range from advocating for better educational services for a child with special needs, changing medical protocol, making an insurance claim, obtaining a VISA to visit another country, acquiring Social Security benefits for a person with disabilties, or settling an unscrupulous business transaction. Obtaining a beneficial outcome in an advocacy situation depends upon 1.) accurately documenting information, 2.) maintaining good records, and 3.) contacting the right people. Care teams and other professionals in your support system can often be good advocacy resources. But in order to be more independent and better prepared, you should be prepared to be your own advocate if the need arises. Here are a few helpful tips that may prove beneficial. Identify the Problem Clearly state what the problem is and what outcome you seek. Take time to formulate a written statement so that it focuses your efforts. In the end, you don’t want the solution to be confusing because you were unclear about your goals. Write down your simple statement and keep it at the front of your notebook.

Gather Information Use a notebook and folder to get organized. Once the problem and desired outcome are identified, start gathering together all relevant information in a safe place. Use a notebook to record all relevant phone calls, contacts and other important information, along with an envelope or folder to keep all correspondence and transactions regarding the issue. If you need to appear before a committee, lawyer or a board, coming to a meeting with an organized notebook can better prepare you and assure a better outcome.

Keep Detailed Phone Records Dedicate a section of your notebook to a phone log. For each relevant call, make sure to log a.) the date and time, b.) who was contacted and by whom, and c.) exactly what was said to the best of your ability. Always verify your understanding during the conversation. Repeat back all important steps that you, or a third party, will need to take and write them down in the phone log with the expected time frame for completion of the activity. Here are a couple of examples of clarifying statements to help you document conversations accurately:

• “You will be out to fix the problem no later than Friday of next week?”
• “I need to fill out the form, have it notarized, mail it in, and then I will hear from you in writing within 20 business days. Correct?”

Do not text information to parties involved in the situation. Texting space is limited and auto-correct can misconstrue information. Emails, letters, meetings and phone calls are often better forms of communication.

Save Copies of Mailed Information Make copies of everything before sending in the mail. For all mail-requested documents, make sure to keep duplicates of the filled out forms. Depending upon the importance and timeliness of the matter, mailing information with a returned receipt guarantee may be worth the extra postage cost. Never send original documents like passports, birth certificates or driver’s licenses. Keep this information in your folder. Make sure all forms are filled out completely; incomplete forms can delay or defeat your process. If in doubt while filling out forms, call the appropriate place and ask clarification questions.

Seek Help from Advocate Offices For assistance with civil matters, contact your local, state or federal legislators. Representatives and Senators have regional offices and generally have staff that specialize in helping constituents cut through any “red tape” citizens may encounter. Contact other local advocate offices. There are various other types of advocates depending upon your issue. Search the internet, talk to others who have faced the same struggles, and follow up on word-of-mouth recommendations about specific people who can help you.

Bring Support to Face-to-Face Meetings Bring someone with you to any in-person meetings. If you are required to attend a meeting as part of the advocacy process, a second pair of eyes and ears can ease the stress and help you remember the details after the meeting. This person’s job is to quietly take notes and provide moral support. During the meeting, check with your note-taker to be sure they are getting the information accurately. Keep all notes in your notebook, and make sure they are dated with all participant names and roles in the meeting. Use the help of legal counsel when appropriate. If a law has been broken, legal help may be your best option. Many lawyers don’t charge for the first consultation, and there is also legal aid available for citizens in need. The District Attorney for your jurisdiction can be a great resource as well. While people often have support systems to lean on, caregivers and consumers should also feel empowered and prepared to advocate for themselves when necessary.