Wednesday, September 8, 2010

MENTAL HEALTH REPORT PROMISES TO TURN THE CLOCK BACK ON HUMAN RIGHTS

In August 2010, an all party Select Committee on Mental Health and Addictions that has been working quietly across Ontario for a year to gather stories and feedback from individuals, organizations, professionals and law enforcement, on how to fix Ontario's mental health and addictions system released its final report with 23 recommendations. The report was praised in many quarters as it represented members of all three major political parties working together to produce this report, united in their experiences as they moved from town to town to hear stories from family members, a few "consumer/survivors", organizations and others on their own observations, experiences and assumptions about both mental health issues and what to do about them.

The report itself released on August 30, 2010, can be found on the site of the Ontario Legislative Assembly's Committee Reports. It is in a PDF format, which may be inaccessible for some, but there are likely sites online that may provide a copy of this public report in Word or text format. The report itself took up 63 pages, and is based on 25 days of public hearings and written submissions, and follows up an earlier version of this report, an Interim Report published in March 2010.

I downloaded both of them and read through them, keeping a supply of Tums handy in the event some of the terminology and recommendations made my stomach turn. While there are many positive recommendations, such as "removing silos" and blending services that would incorporate both mental health and addictions, and setting up a focused agency within the Ministry of Health and Long Term Care dedicated to these issues (similar to Cancer Care Ontario) makes some sense. Provision of better training to primary care physicians and nurse practitioners and others directly involved in the care of persons with mental health concerns is also a good thing. The report also recommended the obvious: funding has failed to follow the person, as he or she leaves the hospital and returns to the community. It is said the system is based on an acute care manner, whereas after the hospital stay is over, the person simply returns to whatever routine they left before they went there. Mental health has always been the "poor cousin" of other health services, taking a mere fraction of the system that claims to treat many more people than its funding assumes.

The report went into depth about the stigma of having a mental health problem or diagnosis, and what can be done about it. Frankly, I had to laugh at that section, because absolutely nothing is being done about this. This is not something that the Ministry, for example, can make a "feel good" commercial about, showing successful actors, musicians, athletes and business people, who have all experienced mental health issues, and are now recovered, thanks to the miracles of "modern medicine". The report begged for a champion, who can lead the fight against stigma against persons with mental health problems. The reason there are no takers for this position is because the mental health system, if adopted by such a champion, militates against somebody ever taking such a role. A content analysis of the verbal input into the committee hearings revealed a lot of prejudices, some of them developed by the media, and others brought to them by the "single case history" syndrome, about persons with mental health problems.

Most of the lay input into these hearings were family members, or associations representing family members, of persons with mental health issues. Their concerns are not to be disregarded. I am a family member survivor of a suicide, as well as a spouse and friend of another person who has struggled with mental health issues. I have also personally experienced some difficulties earlier in my life as well. In addition to this, I worked in mental health for ten years of my life, and currently in my practice, work with many clients that have moderate to serious problems with depression, psychosis, suicidal thinking, post-traumatic stress, and so forth. I don't relate well to what many of these family members were asking for, because there is a better way of dealing with these things than locking people up and forcing them to take treatment to which they may not recover. The Committee heard from some individuals with lived experience of mental health issues, but obviously not enough of them. I could count their numbers on my left hand.

The report only glosses over concerns about the human and civil rights of persons diagnosed with mental health conditions. This has been a recurring theme throughout, that somehow, the fact that people have rights, is somewhat detrimental to the health and well-being of the person. For example, the report notes "we are troubled that so many witnesses have experienced difficulty in obtaining care for family members who are clearly very ill, yet refuse treatment or are too quickly discharged from hospital. Many told us about their need to go through the complicated Form 1 or Form 2 process - involving the police or justice of peace - several time before their loved one was adequately treated. One family told the Select Committee that their son was not admitted to hospital until he threatened to jump from a four-story building ..." In these glimpses into the lives of these witnesses, forced treatment was good, personal freedom is bad. What was not shared with the committee were the results of this treatment and the quality of these people's lives afterward.

In the Interim Report, it was mentioned over fifty percent of the people on ODSP are receiving it for "mental health reasons", leaving one to wonder why such a huge percentage of people deemed disposable by our society are also labeled with some type of mental health diagnosis. I know when I worked in the mental health field, I did a research project, part of which included calling a random sample of employers in a random sampling of industries across Niagara, and learned that out of over 100 employers interviewed, only one had knowingly hired a person with a mental health history (and this person was their nephew). Several of them made jokes about people with mental health problems, while a few repeated certain stereotypes they felt were true about people with these experiences. A tire store told us that they were afraid that somebody like this would blow up the tires. Another said they would worry about what kind of mood the person would be in each day. Another one implied that persons with mental health issues were the same as persons with developmental disabilities. If employers think this way of persons recovering from these conditions, it is no wonder the majority of them seem to be sitting on ODSP - no matter how well educated, skilled, willing to work, etc.

About their rights, the report went on to note the following "Rights advocates cautioned the Select Committee that involuntary admission and treatment are such grave violations of autonomy that society has to accept these risks and dangers. They also warned that psychiatric drugs can have serious side effects to which many people are reluctant to expose themselves ..." This is fine until the report continues ... "the Select Committee believes, however, that the right to autonomy must be balanced with the right to be well. The Select Committee also believes that our present laws tie the hands of health care professionals and families and have contributed to the criminalization of mental illness, where individuals need to be arrested in order to receive care. While Ontario undoubtedly needs better access to community supports and hospital beds, some people will not avail themselves of such services because it is the nature of their condition to deny that they are ill ..." Grab those Tums!

So what if somebody denies they are ill. So what if somebody refuses to receive treatment they don't want or feel they need. I know of many cancer patients, diabetics near end stage renal disease or cardiac failure, etc. who have also done the same thing. They did not want yet another intervention to prolong whatever it is they consider to be ailing them. Do we force diabetics to submit to insulin treatment if they somehow refuse to take steps to control their blood sugars and dietary intake? Do we force a person with cancer, even one who is dying and who is loved immensely by her family, to accept yet one more round of chemo and radiation to hit her body with yet more poison to sully the quality of the balance of their lives? While the Committee members learned about the path many of these unfortunate souls took to get treatment or have it forced on them, the Committee has failed or neglected to explore what happened to these same people afterward. Hearing the story from a mother, a father, a brother, an uncle or an aunt, doesn't cut it for me. I have met too many people who have been through forced treatment to know that this is not the answer. One has to ask if one has to force treatment on someone, is this treatment really that beneficial?

I am alive because I refused treatment when I was much younger. My spouse is alive, because I personally weaned him off three highly risky psychiatric drugs he was given, which in fact drove him to the emergency room several times until he was free of them. Others have had to experiment with different drugs in cooperation with their doctors until they found something that agreed with them. This was done on a voluntary basis, in the case where a person was given a choice. I know many who are no longer with us to tell their stories because they died of complications resulting from these drugs, or from the restraints or a combination thereof. There were numerous coroner's inquests in the 1980's, that were called as a result of "psychiatric patients" dying either in the hospital, or off grounds as a result of something treatment related. These inquests took place before the laws that exist today were passed, which are the very same laws the Select Committee is suggesting we return to.

Further on it states "we have received testimony that other jurisdictions have broadened involuntary admission criteria by expanding their definition of harm, without unduly jeopardizing autonomy (my comment: this is a very difficult tightrope they are pretending to walk). For example, these jurisdictions consider the threat of all serious harm, not merely physical harm. They also permit treatment in cases of involuntary admission. The Select Committee was particularly impressed by British Columbia's mental health legislation ..." The report goes on to state that psychological harm might also be considered as a criterion for harm. This frightens me as "Big Brother". A similar change to child protection legislation was made under Mike Harris in the late 1990's, which resulted in tripling the budgets of child protection agencies across Ontario, merely as a result of over-interpreting harm. As most child protection workers are not well trained in cultural, psychological and child-rearing differences in poor families, families of persons with disabilities and families of differing ethnic origins, these families instantaneously became a target for child protection laws in the late 1990's whereas up to 87% of all apprehensions involved children living in low income families.

One may ask if child protection laws that were more loosely defined helped save any child from harm. We can't prove it did, nor can we prove it didn't, which is the very difficulty of these types of programs as they are very rarely evaluated on their merits. They are merely funded on the basis of emotional reactions and "bad case scenarios" reported in the media. However, we have seen the results of many families that have been broken up for unwarranted reasons, former parents turning to drugs and alcohol, welfare benefits dropping leading to the loss of homes, other children, divorce, etc. The child protection agencies do not see these after effects as "their problem" as their responsibility, they say, rests solely with the child. One can find lots of personal stories about this system on other websites, such as fixcas.ca, Canada's Court Watch, and the Foster Care Council of Canada. These are not just disgruntled abusive and neglectful parents that got "caught"; many of these people were forced to sue to regain their dignity and families. Now the Select Committee on Mental Health and Addictions wants to police irritating, bothersome and offensive conduct, by criminalizing these people anyways. The Select Committee protests the idea of criminalizing so-called psych patients, then proposes a set of laws that will restrict or remove their civil liberties anyways, even if these persons committed no crimes.

My experience in working with people dictates that mental health services must be delivered in a timely, non-stigmatizing and voluntary environment, that is free of threats and influence. Many are fearful of entering the system voluntarily, fearing that somebody will later force them into another part of the system involuntarily. Others have told me they do not want to be seen entering or leaving buildings that are known to house mental health services. People in registered professions suffer in silence, fearing that if they disclose and ever end up in treatment that their capacity to carry on in their profession will be questioned. People prefer not to tell their employers about their mental health issues, even though many of them do have serious disabilities. Some use recreational drugs or alcohol to help "cover up" their disabling symptoms, fearing their employers, neighbours and others know. Doing this can lead to even worse problems, as we know. While I know that it is fact that a significant minority of people with mental health problems as serious as schizophrenia or bipolar affective disorder, do hold good jobs, the majority of these people are "hidden" - fearful of what their employer might do if they find out. Their fears are not unjustified, as in a recent case before the Human Rights Tribunal and later upheld by the Divisional Court does show how erratic an employer may react upon receiving information about an employee involving a serious mental health problem. People with mental health problems want to work just as much as anybody else, and to use the full range of their skills and education.

These facts still remain despite the fact that in cultures where persons with a serious mental health diagnosis, including schizophrenia, recover socially most of the time, when they are accepted, included and given a role or meaning in their lives. Richard Warner, a psychiatrist, studied schizophrenia in various cultures and found that in cultures where a person would return to a socially meaningful role, usually a job and a place in their community, they recover. As frequently stated by direct consumers in their testimony to the Select Committee and thereafter ignored, "a home, a job, a friend", is what they need, just like the rest of us. This concept was tested in modern western society, which with its obvious limitations and implications/stigmatization, it has been found that a model based on Sen's "capabilities-informed agenda", as opposed to today's damaged identity management, is a preferable approach.

This report not only attempts to skimp on civil liberties, but also on patient privacy as well. Later in the report, there were references to family members concerned when they approach health care providers treating their family member, and fail to obtain information over the "privacy act". This personal information, like your personal information about your diabetes, your STDs, your breast cancer, your HIV, etc. cannot be released without your consent. The same presently applies in health care for mental health clients. under the Personal Health Information Privacy Protection Act. The report lends itself to some eerie recommendations that also concern me, as it stated "... recommended that the language of the Act be amended to clarify that health information may be disclosed to reduce the risk of 'serious psychological harm', as well as physical harm. The Select Committee believes that this is a reasonable amendment ..."

The report further states that "The Select Committee was also informed that British Columbia's legislation permits the release of personal health information to health care professionals, family members, and others involved in a client's care without the client's consent for the purposes of 'continuity of care' and if it is in the best interests of the client (my comment: "best interests" as determined by whom?). In other words, you can be an inpatient of a psychiatric ward and have a sister who would love to get hold of your money, come onto the ward and be provided your health information so that she can then use this information to take over your finances. This type of information sharing is dangerous, not only in situations like this, but I have seen it alienate the person from their family entirely. Families are not always loving, caring and therapeutic, nor do they always have the best interests of one another in mind. I have seen more dysfunctional families, than functional, intact ones in my career. Would you like your family members to know all of your personal health problems, unless you deliberately permit the flow of this information? This suggestion, of course, would be only for mental health issues, and not for patients with other diseases or conditions.

The Select Committee, while it does not make specific recommendations, through its words as cited above, would like to set up a committee of family members, health care professionals and "consumers", to come up with recommendations. My money is on picking those individuals that seem to be of like mind to the Select Committee. While there are mental health 'consumers' around that might agree to these things, most do not. People generally want to live their lives with as much autonomy as possible, and to make choices about their lives and take responsibility if they make the wrong choices. By not permitting persons with mental health problems to make the wrong choices, they are not being permitted to make any choices at all. Please be assured I was a participant in the earlier drafts of various mental health laws that we have today, such as the Weistubb Report, the Fram Report, as well as the legislative committee that preceded the Graham Report, of the 1990's. These reports were also drafted by experts, including those with lived experience, such as family members and consumers. These reports resulted in the Health Care Consent Act, the Substitute Decisions Act and the Mental Health Act amendments. I also took the Toronto Star to the Ontario Press Council in the late 1980's for their portrayal of "victims" of mental health conditions as being incompetent, helpless and suicidal, one hand or homicidal human beings, on the other, despite study after study that shows mental health diagnosis does not increase the probability of somebody being violent, and they are certainly within the same range of intelligence and skill base as the general population.

The report leaves the uneducated reader with a set of assumptions about people with mental health problems:
1. They are incapable of making decisions for themselves;
2. They have or need caregivers in their lives;
3. If they refuse treatment, it is a symptom of their illness;
4. A whole system of paid staff and institutions and programs need
to be developed to control these people; and
5. Family members should be able to dictate or control the lives of
their errant loved ones.

If I brought these assumptions to the people I presently know who are living with some type of mental health diagnosis, including the serious ones, most will say the following:
1. Let me decide how I want to live my life, but please help
support me so that I can reach these goals;
2. I don't have or need a "caregiver". I can look after myself,
thank you very much. If I need help, however, please make
sure that it is available when I need it.
3. I should have the right to accept, refuse or negotiate treatments
for all of my health conditions. I do not want decisions made for me;
4. If I want help from the system, please provide supports that I can
access readily and will not threaten me with incarceration if I
refuse some of their help, or want to do some things my way; and
5. Let me choose if I want my family involved in my life or not.


After reading this, what I find is true is a dearth of VOLUNTARY, SUPPORTIVE and HOLISTIC resources for persons in crisis. If a program was non-threatening, and promised to give the person a sense of safety, the person will go. If they feel they will be coerced into something, they will refuse. It is our human nature. We continue to spend more money on hospitals, acute care and involuntary admissions ... taking this money away from much needed community-based resources. I am constantly being told as a legal professional to "get my son some help, even if you have to help me force him to". I refuse to do so, or participate in this. When their family encounters this individual, he is stubborn, angry, delusional, confrontational and downright scary. Yet, when I meet with him, he calms down considerably. His best hope of remaining well, unfortunately must be to stay away from the source of tension - their families, at least for now. I also meet with the family separately to talk to them about how they need to take care of themselves, ensure they remain healthy and strong, and how they can be supportive if and when the person returns to them. I am always armed with resources - support groups, websites, books, articles, etc. to assist the family member to de-stress and learn to let go.

It is very hard to let go. I know it. My brother committed suicide when he was twenty years old. He was three years older than me. Prior to his death, he reached out to me, talked to me a lot, spent a lot of time with me ... for years, I felt badly, and wondered if there was anything I could have done to prevent him from doing this. Twenty years later, I finally reached the realization that there was likely nothing I could have done. I finally forgave myself for the years I dwelt on this "if only" type of thinking. This doesn't mean that suicides cannot be prevented, but it is my absolute conviction that forcing people into treatment against their will is not the answer. This may prevent the suicide for today, but will not prevent it from happening later.

In the meantime, one needs to understand the difficult time we are giving people with this type of diagnosis. If they won't even share with me what is wrong with them when they come to me to appeal a disability claim, who will they share it with? I have had young men come into my office and cry about how their knees are so bad, they can no longer work. It is only after I obtain past medicals, clinical files and medical reports, that I learn that there may have been a mental health issue. We are keeping mental health problems in the shadows by attempting to treat their bearers differently than others suffering from other medical conditions. We are disrespecting their autonomy, their privacy, their rights, and then pretending at the same time, we considered all of this, and only discover the damage done when it is too late.

I don't know when the time will be when the major stigma connected to mental health issues will ever go away, or if it ever will. However, I believe in the recovery concept or the newly developed "capabilities-informed agenda", as opposed to focusing on the deficits of these human beings. When all of us, including health and legal professionals, neighbours, employers, teachers, and others, begin to think in the same way, perhaps then, the major stigma of these conditions will go away and for once, these often beautiful and creative people will feel free to be themselves.

Your thoughts?

5 comments:

Binaakwe said...

First, I would like to thank you for being so clear about what you believe. As a mental health consumer/survivor, I have mixed feelings about this issue and it is delightful to read such a well conceived and delivered argument for one side of this discussion.

Second, I am very sorry for the loss of your brother. As someone who has struggled with suicidal thoughts since the age of 5, and openly so with my loved ones since the age of 20 (I'm 40), I can assure you from my personal experience and my experiences as a personal counselor that there was nothing you could have done to stop him. Which you already know.

Third, I take my meds like a responsible citizen for my multiple diagnoses. They have side effects which can make life miserable when I let it. But I see it as part of my contribution to society, part of a social contract that I should take my medication. Be stable. Be more "normal". However, this is my choice and I like that. I work collaboratively and not coercively with a physician to select which medication I take and debate the dosage, etc. So I believe that there should be a social obligation to take your meds but not a legislated requirement. Hope that is clear.

Fourth, for a time, I lived with my wife and young child below a man with a psychotic disorder of some kind. At first, we got along because we shared common experiences and could talk openly with each other about topics that are usually quite taboo. Then, his father died and this man, in his grief, stopped taking his medication. Six months goes by and he was violent several times to me and my family and we are hiding in another apartment building while an Emergency Response Unit (SWAT) removes him from the building and then we have to stay away until the Regional Bomb Disposal Unit has finished unrigging his apartment and the grounds that we shared with him. Certainly a sad situation but one in which I was badly harmed as I suffer from PTSD and he managed to undo about 10 years of therapy. I was also assaulted. He refused treatment. The landlord couldn't remove him before I got hurt. So in this case, I really questioned whether he had a relative or an absolute right to refuse treatment since it was obviously going to result in something serious injurious to himself or others. Is it okay to wait until the social contract is completely broken before taking measures ie criminal court which I never felt he belonged in anyways but...maybe I'm wrong maybe he did? Is it fair to pose things in such a black and white way when the reality is so very grey?

These are my scattered thoughts in response to your wonderful blog. Hope you found something useful in them. Please keep writing!

The Advocate said...

As for the gentlemen in the other apartment above you, where was your landlord? He should have submitted an N7, and would have had him out quickly. The more we assume these folks cannot take responsibility for themselves, the more others with mental health conditions will be assumed to be incapable and denied their rights, their goals, etc.

It's not the state's responsibility to make people behave. He made whatever choices he made to get himself into this situation, and you are being prevented from living a quiet life. Get HIM out. Let him make the decision where he lives next.

While a landlord has to accommodate people under the Human Rights Code, if this person is refusing this accommodation, he should be treated no differently than somebody else who is partying and damaging the place.

wheelchairdemon said...

Aptly put.

The so-called professionals and bureaucrats have no idea how much damage the medication is causing to people, especially when there are no supports to help one get integrated into the community after they leave the hospital.

They also have no idea how much damage is being caused by the labels; especially labels like borderline personality disorder, adjustment disorder, etc.

These labels are stigmatizing and, in and of themselves, will only lead to further exclusion. So will a label of depression. Why? Because the public's perception is that the person who has the label need only pull up their socks, stop feeling sorry for themselves, and get going.

To have social workers and employment counsellors refuse to give a good reference, line up a mentor, or talk you up enough so you can get your foot in the door of the working or volunteer world, after they have done all the career testing, aptitude testing, and have seen you in action in a job placement, is simply wrong.

However, their job descriptions do not require them to help us get started in a job or volunteer job EVER.

With a volunteer job being just as hard to get as a paid job, and the hours being just as inflexible, a person who can't afford to own a car, or who has a physical disability (from the over-use of psychiatric medications) and needs to be home at the time demanded of their home support workers (yes, we have to accommodate them so they can enjoy their family life in the evening), a person does nothing.

That is almost impossible to do (and stay healthy) when one has a good working brain and a strong desire to live life.

Angela, thanks for writing such a true, and important, post.

wheelchairdemon said...

One more comment Angela... I would gladly volunteer to be the champion who could lead the fight against stigma of persons with mental health problems because I have developed enough strength to combat the attitudes, and I fully realize that there is nothing more that can be done to be...

Prison would be more preferrable than having to endure life on the outside with a physical disability, services cut off, and the loss of too many friends to the impact of exclusion.

My friends are all either dead or lost to a depression that is so severe they no longer come out of their homes anymore. I can't climb the steps to visit them in their apartments so, I too, have been forced to exclude them.

They either don't own, or don't answer the phone, and they can't afford to have a computer. It is totally sickening and disgusting.

Care to sell me as the ideal champioin?

The Advocate said...

Wheelchairdemon, you just did.