Advocating for the mentally ill

By Marilyn Baker from Marilyn’s Blog, April 30, 2016

People with serious mental illness need an advocate at least as much as people with other health problems, and probably more. When the brain malfunctions, the patient can (and often does) make poor decisions, with very negative consequences.

For me, advocacy means doing whatever it takes to get my loved one’s life running  smoothly  and keeping it that way.  In actual practice, it is often driven by a reaction to a crisis.

Advocacy should also mean doing things to enrich their lives and enhance their care. In general, a good goal would be to raise public awareness about serious mental illness.

So far I have not found much time for the awareness and enhancement part.  I have been mainly busy trying to smooth out the bumps in day-to-day living for my loved one.

I will give some examples of the things I have been doing for my loved one. They tend to be very specific.  I expect that you, the reader,  will have your own list of things that you have done and are doing now.  My hope is that by communicating about it, it will help all of our loved ones to get better care.

Since writing the words “loved one” gets monotonous, let’s abbreviate it to “LO.”  LO can be either male or female, in keeping with the fact that severe mental illness does not discriminate by gender and afflicts men and women equally.  For ease in sentence construction, I will use “he” or “him” or “his”, but it also can mean  ”she” or “her” or “hers.”

SMOOTHING OUT THE BUMPS IN DAY-TO-DAY LIVING

A lot of the stuff I do involves the writing of letters and filling of forms and emailing people. Some of the activities have been triggered as the result of a crisis. Not all have been successful – yet. Advocacy is a work-in-progress.

My first success was with Canada Pension Plan.  I applied and got a CPP Disability pension for LO. It took four years, but in the end it was worth it. The pension is small, reflecting the very limited time he was able to work before becoming ill, but it helps with the rent.

I helped LO to file three years’ worth of tax returns, which recovered some long lost  refunds. I became his CRA authorized representative,  and I continue to help him file each year.

LO had no  medical coverage for a while.  Everything had just fallen through the cracks after he become ill.  So, as his advocate, I helped him to apply for MSP coverage. Because of the three years tax filings, he was able to qualify for premium assistance. He is also able to benefit from BC’s Fair Pharmacare program. It is a very good system because it is income based. This means that he is able to afford the many medications he needs.  Over the years he has also been helped with other onerous costs such as ambulance fees.

Power of Attorney or Representation Agreements  are important legal tools for the advocate.  These agreements require the cooperation of the ill person. Unfortunately, so far,  LO has not agreed to very much. The agreements make it easier to manage finances, such as paying rent and hydro, when the patient gets too ill to manage things himself.

Housing and apartment rentals are sometimes made easier if someone is willing to co-sign the rental agreement.  Over the years I have also provided references, arranged for movers, and biweekly cleaning services.

I write letters  to doctors, hospitals, nurses, social workers, case managers, police … The letters have mainly been to say “thank you” for  helping LO through some difficult times. I also keep in communication with his doctors to provide feedback on how the meds are working.  Sometimes I give negative feedback, such as expressing my grave concern at the appalling discharge practices at some Toronto hospitals.

Other advocacy involves trying to resolve crises: One letter to Air Canada resulted in LO getting a significant sum of money refunded for an unused airline ticket. Fortunately, he had kept the boarding pass  which was the only proof of purchase found among his belongings. There are many more, too numerous to recount here, but suffice it to say all would have been made easier if we had had a Representation Agreement signed.

I provide a permanent mailing address for important things, such as government, CRA and banking correspondence.

 ENHANCING AND ENRICHING LIVES; RAISING AWARENESS

Since I am a writer a lot of what I do is writing.

  1. I write letters to editors, usually in response to an article or horrific event involving a person with a serious mental illness. I also find it therapeutic to rant.
  2. I write letters and emails to people in power, such as my MLA or MP. Invariably, I receive a reply within nanoseconds, thanking me profusely for writing and promising to forward it to someone whose job it is to send constituent’s emails to the bit bucket. But I keep trying.
  3. I write articles for publication in newspapers. I blog. I follow people on Twitter. I “LIKE” and retweet articles of interest. I make comments in online comment boards on pertinent articles. I have sparring matches with anti-psychiatry buffs on Amazon.com over book reviews.  Until they cut off public participation and denied me access, I contributed to the Mental Health Commission of Canada’s Collaborative Spaces , by providing useful links to new research, treatments and other interesting articles by Susan Inman & Marvin Ross & others.

My hope is that if enough of us do this sort of general advocacy, sometime soon maybe some of it will stick and we will see real change in how our most vulnerable citizens are treated.

 CURRENT TOPICS INCLUDE

– Supported housing  is first and foremost of importance

– Absurd privacy laws need changing, or at least explained better

– Bus pass program needs reinstating and made more generally available for disabled people

– Assisted suicide legislation needs input from mental illness advocates

– Hospital discharge planning needs work

– Teachers, university professors, nurses and doctors need more training on mental illness

HOW TO DO ALL THIS? SOME ADVICE FOR ADVOCATES

  1. Write from the heart, they will feel your pain.
  2. Use technology: Twitter, Facebook, emails make it easier; follow research online *
  3. Be tenacious. Never take no for an answer and never give up!

 

* I have a growing list of websites that are invaluable in providing the latest exciting news on new breakthroughs in mental illness research. I sign up to receive their newsletters. Things are exciting and very positive!

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9 thoughts on “Advocating for the mentally ill

  1. Greetings; I am an advocate and a writer; how can I get my articles (they are all supportive of our loved ones with serious mental illnesses) into media publications? I am now working on supportive housing based on the Utah Model that obtains funding from non profits and religious groups as well as government. Please inform me; margiealtman@yahoo.com

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    1. Hi Margie, you have asked the $64000 question! It is not easy to get published and sadly due to financial pressures on print media, it is getting harder and harder.

      Here is what I do, for what its worth: I put together an article and make sure it is not more than 800 words and preferably shorter. Then I go onto media websites and try to find the name of the “comment editor”. Sometimes they are called “editorial page editors”. or “opinion page editors.” Then I send an email with my credentials and name/address etc followed in the same email with my article (NOT as an attachment). Then I cross my fingers. If nothing comes back after a few days, I send it to the next editor on my list. It’s hard work but sometimes they will print it. Not very often these days though.

      That’s why I started blogging. Then at least I get my thoughts “out there” in the World Wide Web. I use WordPress because it doesn’t cost anything for a basic setup. So blogging might be your best solution – but keep sending your best pieces to media and hope that someone likes them enough to print them! And NEVER GIVE UP!
      Marilyn

      Liked by 1 person

  2. I really enjoyed your blog. I know what it is like to find time to advocate for needed change at the same time addressing the ongoing needs of your LO. None of us can ever give up because the current mental health system is not caring for the needs of the seriously mental ill seriously enough. Families are the ones keeping things together for our LO’s despite the successful apartheid practices by the system. When our LO’s were in the asylum, we were considered “intruders” now by the use and misuse of privacy legislation we are prevented from getting the necessary health information to properly care for our LO’s. This fact can cause intense anguish for the family caregiver. It is overwhelming what we experience sometimes. Nothing more chilling than being told that your LO’s life is not as important as what they perceive as his/her right to privacy. Even when your LO gives consent, there is still that reluctance to involve the family. The 2013 MHCC Family Guidelines give guidance about how to address the privacy rights of the individual while ensuring that the family caregiver has the needed medical information. These Guidelines also recommend discharge planning that ensures follow up for our LO’s.

    The BIG question is ‘why have these Guidelines not been implemented as it can be demonstrated that these Guidelines save lives.

    So why is there a resistance to their implementation??

    Also I agree that many professionals do not know enough about serious mental illness. This fact can cause serious harm especially around the symptom of anosognosia. LO’s can be haunted when they are repeatedly told that they have a mental illness when they genuinely do not believe that they have a mental illness.

    And for those professionals who are uncomfortable with manifestations of serious mental illness displayed by our LO’s, please help us families by displaying signs in your waiting rooms about your discomfort so that we are informed in a timely manner and can plan accordingly.

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  3. Why hasn’t Ms. Baker told us why her “LO” refuses to let her access his private info? If she’s *truly* caring for him, he would be glad that she wants to be so involved in his care. “Anosognosia” is NOT REAL and NOT the reason why he’s keeping her at a distance. People like Ms. Baker invented that buzzword in order to try and stop society from pathologizing and rebuking them for trampling their Mad family member’s rights. This story reeks!

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    1. These aren’t “beliefs”. They are all facts that Ms. Baker HAS ADMITTED TO!! EVERYONE who is very, very Mad is well enough to ask their “LOs” or other people for help, if help is *actually* available to them. And, obviously, Mad people’s less-extreme states do not ever impede their ability to ask their family members or anyone else for whatever viable sources of help that are or could be useful to them. As with most Mad people, Ms. Baker’s son knows that his mother will hurt him if he doesn’t maintain his boundaries with her. I’ve read some of Ms. Baker’s articles. I can guarantee you that her son will not and should not be giving his mother, who has written about how she wishes he were dead, any power over his life.

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