Tips and Tricks to Manage Your Illness and to Self-Advocate or Advocate for a Loved One Who is Mentally Ill
This is my Tips & Tricks Page for anyone going through something similar to this. This page also might be helpful to anyone who is mentally ill, or is advocacting for a loved one who is mentally ill.
These tips are only my personal words of advice and wisdom — they may not work for your situation, but these are strategies I can only recommend from a personal perspective.
If you are not sure whether or not any of these suggestions might work for you, then I strongly urge you to consult with a trained professional (Advocate, Social Worker, Attorney, Psychiatrist, Therapist, etc.) in the area of expertise that you need. I have many resources throughout this site to get you going in the right direction.
This page will be updated over time, and I will be posting about all of these topics. Please feel free to add your unique experiences and wisdom to what I have here. We need all the advice we can get!
1. Make sure you keep ALL records pertaining to the health and health care of yourself or your mentally ill loved one or mentally ill client. This is CRITICAL to the success of any advocacy for this person. Keep your files organized by year, month, doctor, etc. But keep them all very organized. Be fanatical about filing away everything that comes in the mail, is handed out in a meeting, is written on scrap pieces of paper by you, and anything else that should be kept in the files. Print out your monthly phone logs and email correspondence — and file them also. It’s better to have too much rather than too little. The history of medical issues is always important over time — so never dispose of them.
2. Make sure you keep ALL educational records in their own filing system. These records are also CRITICAL for any advocate, lawyer, or educational provider both now and in the future. Never throw them away — even after several years. The historical records of education may play an important role in applications for Social Security and other benefits, if that becomes necessary.
3. The instant your situation starts going “downhill,” get a journal that you like and write down EVERYTHING that occurs from that point until the entire situation is resolved — and NEVER throw it away! You have to make the time to record phone calls with names, dates, and times. Record conversations to the best of your recollection as soon as you can. Record people’s tone of voice in a conversation, body language, and your feelings and thoughts as well — this will provide another person with the entire context of a given experience or event. Fill in the gaps so that everything you record is tight, accurate, and as honest as you can make it.
4. Never Throw Out Your Loved One, unless they are going to a hospital or to a facility of care. Never throw them out onto the street with nowhere to go and no supports in place. At the very least, have somewhere safe for them to go — a family member, trusted friend, etc. I know what I am talking about, because I have done it the wrong way — and it can have disastrous consequences.
5. Before every meeting and before every conversation you have with a mental health care provider or agency, make darn sure you have your thoughts organized and written down in an organized fashion. Be Prepared!
6. WHEN IN DOUBT, RULE BIPOLAR OUT!
7. Pay for a second opinion — and maybe a third, if necessary.
8. Pay for a complete, comprehensive, and thorough neuro-psychological assessment if needed — it can be, and often is, the most important documentation for you, your loved one or client. It often ACTS as the advocate better than any person can. Make sure you get it done by a reputable professional.
9. Bring your own Agenda to any Team Meeting or other important meeting. I have templates to use for these types of meetings. If you don’t need to use the Agenda — great — but if you do — then you have it at the ready. Have a copy printed out for everyone that will be attending. This will be your official documentation and record of who attended, what was stated, and it will keep the meeting on track so it doesn’t get off track.
10. If you need to hospitalize yourself or your loved one because you, or they, are a danger to themselves or others, try to get permission from your insurance provider beforehand (if the situation allows). If the situation does not allow for that phone call — then get someone to take you or your loved one to an emergency room immediately. Call 911 if needed. If your insurance company refuses to pay, or will only pay for partial hospitalization, then immediately email and call your state’s Insurance Commissioner’s office. In most states, and definitely in CT, bipolar illness is covered under parity law. This means that the illness is considered a biological illness, therefore, they are required to cover the illness and all of it’s required treatment modalities — including FULL hospitalization when someone is a danger to themself or others. Be tough, be firm, and stick with it — get the hospital to advocate for you as well. They often have advocates to handle these types of situations with insurance companies. Make sure you DOCUMENT everything regarding all conversations you have with everyone involved — especially the insurance people you may talk with — this is crucial in case you have to get a lawyer — and you may have to do that. Be prepared!
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