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.
- 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.
- 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.
- 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
- Write from the heart, they will feel your pain.
- Use technology: Twitter, Facebook, emails make it easier; follow research online *
- 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!