When Will All Mental Health Professionals Learn to Respect Families?

By Marvin Ross

Families of the mentally ill are the tireless workers who provide support and advocacy for their ill relatives at tremendous financial, emotional and physical costs. The families also are the ones who push for reforms from reluctant elected officials. It was families in the US who formed the National Alliance on Mental Illness (NAMI) to fight for their kids. In Canada, it was the late Bill Jeffries, a family member in Oakville, Ontario, who formed what was originally the Friends of Schizophrenics in Canada (now the Schizophrenia Society).

A group of family members in the US (partly tongue in cheek) call themselves the Sisters of Perpetual Determination to indicate their resolve.

Families fight for their ill relatives whatever the illness they suffer is – cancer, CP, autism, schizophrenia – and that is as it should be. But when it comes to mental illness, we are often not consulted and are shunned and talked down to by professionals. Just recently, a group of very dedicated families had to fight for months to have a representative on an Ontario Government Committee set up to evaluate mental health services before a family member was appointed.

But do not consider the Family Outreach and Support Program (FOR) in the same class as these aforementioned family advocacy groups. FOR which is funded in part by tax money is being integrated into the Canadian Mental Health Association Toronto Chapter. Despite the name FOR, from the writing of its founding executive director who stepped aside in 2015 but is still on staff, this group is not family friendly in my opinion.

Karyn Baker says that she is a mother of a child with mental illness but in her article entitled Families: A Help or Hindrance in Recovery she reveals what I consider to be disdain for families. I’m not sure if she still believes what she wrote as the article is no longer online but it was discussed by Susan Inman in a Huffington Post article and I do have a copy.

The article is a chapter in a book called Alternatives Beyond Psychiatry edited by a founding member of an organization called INTAR or the International Network Toward Alternatives and Recovery of which Ms Baker is or was a member (she lists her membership on her CV). The organization believes that emotional distress is often labelled as psychosis.

Here is what Ms Baker writes:

  • “traditionally many families have not been given the information or strategies for helping their families in the recovery process. As a result, families have tended to unwittingly be a hindrance in their relative’s recovery”
  • “There was little, if any, mention of recovery and no critical examination of the mental health system from a trauma-informed and anti-oppression perspective. These programs created like-minded thinking between families and mental health professionals, which further reinforced the limiting idea that mental illness is a disease and must be treated with medication or otherwise, recovery is not possible.”
  • “In North America, the alliance of mental health professionals and family organizations has entrenched the medical model of mental health distress and has led to an extreme over-reliance on psychiatric medications and coercive mental health legislation. A collateral damaging consequence has been the divisiveness between the psychiatric survivor organizations and family groups. Psychiatric survivors have been highly skeptical of family involvement in the recovery movement. Often survivors have felt both the controlling and paternalistic (and often traumatizing) experience of both their own families as well as those of large family advocacy organizations.”
  • The key messages that families report taking away from the course are that: recovery is possible even without any professional intervention (for many families this is the first time they have heard this message); hope is the cornerstone to recovery – it is almost impossible to recover without hope and the family’s role is to “hold the hope”; to avoid creating learned helplessness by being overly-involved; to support risk-taking and giving the relative the dignity and freedom to fail like any other human being; to let go of controlling relative’s choices – this is their recovery journey; to stop viewing everything from a problem orientation and start building on strengths; to view madness as a human experience; don’t use coercion or forced treatment; explore alternatives and use advanced directives.
  • Families also have reflected back on the importance of the group process in learning about recovery and their own behavior. Families want a place that does not perpetuate their guilt or shame about their own role in wounding their relative but helps them to acknowledge their role and behavior and help them to make change in a safe environment. Many families acknowledge that they started this journey as either uninformed or misinformed and that often their natural intuition as to how to be helpful was actually counter-productive. Families also become aware of their own internalized discrimination or mentalism about people with mental health issues. Families learn to use language that does not hurt or hinder recovery.”

None of this is evidence based nor is it family friendly unless families admit that they have been controlling and paternalistic towards their ill loved ones. Point two from her paper is still the raison d’etre of the agency as it is prominently displayed on their website. An excellent critique of the absurdity of their “trauma-informed and anti-oppression perspective” compared to the medical model was recently provided in an excellent article in Clinical Psychiatry News entitled Unmasking Trauma-Informed Care. It makes for good reading.

And my tax dollars go to programs like this when the money could be used to provide more psychiatric beds that are desperately needed.

 

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14 thoughts on “When Will All Mental Health Professionals Learn to Respect Families?

  1. Who is this Ms Baker anyway,?? really…I am a mother of a son with schizophrenia and he would have more brain injury, to say the least, without his medication..He has a great family support system but he struggles immensely in his everyday life in so many aspects. Without medication his life would be unimaginably horrific to himself and society. I thank God for like thinkers such as Marvin Ross. Parents and family members are the ones that see our struggling loved one everyday and know what is really going on…we can be the best advocates with better involvement with all mental health professionals…we must not be shut out of the system when we can be of great value. .

    Liked by 1 person

  2. Families Matter 2016 — The Year Of The Family
    Our country is in the midst of numerous, emotionally battering crises; terrorist attacks and threats, gun violence, allegations of increased uprisings of racism, the tsunami of national debt, political polarization, alienation of citizens, increasing poverty and the gap between rich and poor, the perceived threats of migration and immigration. As our collective shock, grief, terror and mistrust grows and we suffer with anxiety, depression, distractedness, sleeplessness and fatigue we search in desperation for relief. Many individuals and families have nowhere to turn. Not surprisingly there is an “epidemic” of mental illness and the utter collapse of the mental health system has resulted in over flowing jails crowded medical emergency rooms and our most vulnerable untreated mentally ill loved ones sleeping in the streets. When they live at home, their families are under tremendous stress to care for, protect and encourage them to accept treatment. Most often the mental illness with resulting extreme paranoia, hallucinations and anosognosia ( denial of the illness) leads to dangerous behaviors when the broken system of care has been cut to the bare bones and no beds, no comprehensive treatment, no outreach is available.
    From a desperate, young, mentally ill untreated loved one “I’m gonna snap!” he yelled. “Mom,” he said. “Please take a gun and shoot me. “You can do it,” he said. “I just can’t take it anymore – living like this.”
    The Traumatized Family
    Traditionally the family system was our safe refuge; the network of caring people who protected us, explained situations for us, relieved our emotional pain and taught us how to manage our feelings. The attachments to family members were our lifelines, the umbilicus that connected us to the meaning of our existence when all seemed senseless and spurious and hopeless. In our Western individualistic society, our parents, grandparents, siblings gave us strength when the demands of our culture became overwhelming and, most importantly, they filled in the dangerous gaps when systems of care were too shattered to provide help and guidance. In a crisis, when a family member is in emotionally critical condition, family members came to the rescue when phone calls and emergency services abandoned us or led to more harm. Because of the ineffective and unresponsive mental health system, when the family cannot provide a rescue the streets and jails will house the untreated mentally ill, the police will act as crisis intervention specialists and the media and internet guide us in how to treat our emotional problems.
    A mother speaks “No one understands like other parents. No one.”
    A father speaks “There is a sense of helplessness, alarm and fear when the person does not respond to your outreach and your efforts are responded to with anger and suspicion. You know something is terribly wrong and at this stage, without information, all you can do is try to make contact and watch the frightening process unfold. He was no longer the boy he knew – the happy-go-lucky child with the black mop of hair who preferred to play with the family’s pots and pans than his own toys. He was someone else.”
    In the case above the parents of this usually gentle and caring 24 year old described years of trying to have him hospitalized only to have him released in 3 days, unstable and angry. They report numerous incarcerations for “trespassing” when he was confused and wandering, with long jail terms due to “delays”. The mother weeps when she explains how she is fearful of calling the police in case they confront him and scare him. The couple sleeps in separate rooms to give each other time to rest and there is rarely a calm meal or a happy family gathering because their son becomes paranoid and threatening. The couple are stressed and often argue about petty matters; they both are at a breaking point and the marriage bonds are now about protecting their son and making it through the next 24 hours without succumbing to their pain.
    If and when this once strong family is utterly shattered then, along with hundreds of other families society will lose its front line rescue team and their loved one will join the thousands of untreated mentally ill individuals who serve as terrible witnesses to our failed mental health system and our lack of compassion, understanding and moral values.
    We are, of course, profoundly social beings living not as isolated individuals but as integral members of interdependent social systems—our nuclear family system, and the broader social systems of extended family, peers, our community and the broader society.
    Decades of neglected care and the worsening condition of our most seriously mentally ill loved ones has created a traumatic situation for families. The strength of the family system is dependent not only upon the internal bonds of blood and love but also upon the social systems that provide support, treatment and resources such as bed space, skilled professionals, emergency services and long term programs.
    The family that is repeatedly traumatized by internal and external abuse cannot fulfill its natural and foundational tasks for all of its members, young and elderly who are also being abandoned, neglected and emotionally harmed.
    Let me introduce you to Lisa; she is the 10 year old sister of the young man whose voice you heard above begging to be shot. Lisa adores her big brother and is bonded to him through a shared love of sports and writing poetry. Before his first psychotic episode they went everywhere together and Lisa would only let her brother tuck her into bed at night. Now she stays awake and cries for the friend, the hero that she has lost and she mourns the loss as one would grieve a death. Her parents are preoccupied with her brother and she, although she hates to admit it is sometimes ashamed and frightened by his behavior. Lisa’s teachers have written notes to her parents about her being “distracted” in class and “looking sad and anxious” Still, she is such a quiet little girl that no steps have yet been taken to reach out to her. This is a very common situation in cases where a family is struggling to manage family life with the needs of an untreated mentally ill loved one and they are not to blame. As in Lisa’s situation the opportunities for the infants and children to form secure attachments with attentive adults is limited by the constant upheavals, the fractured lines of communication and the sheer unpredictability of the situation. All of this is terrifying for a child who keeps the secret of the loved one’s condition and learns not to voice their feelings and thoughts. This is not a parental choice it is the failure of the systems of care and treatment to support the family, to involve the family in the comprehensive treatment process and to relieve the family of some of their insurmountable burdens.
    The disempowerment of the family through repeated and unrepaired trauma removes them from their functional tasks within our social system and leaves a legacy of damage in its wake for future generations. The process of draining their strength, control and dignity has momentum and gathers victims as time goes on and little is done to change the conditions that fuel it. Repeated trauma, as research has demonstrated, has a destructive effect upon the brain that can be mediated due to the brain’s plasticity. If a caring person would take care of Lisa’s needs for a relationship that offers consistent attention, a receptive ear to listen to her fears and sadness, approval of her strengths and a path forward she could heal. Her brother’s journey will be a long one due to the years that he has been re traumatized in jail and by the terrors and physical harm that lack of sleep, poor diet, feelings of shame and depression have wrought. This young man desperately needs a comprehensive, intensive treatment plan that engages the family, supports the strengths that they know he does have as demonstrated by his childhood abilities, gives him a stress-free environment with people who share similar experiences and a thorough medication evaluation to determine if medication could be helpful. The family as a whole needs to be empowered respected and to able to rejoin society without the barriers that now impede them.
    “Other things may change us, but we begin and end as a family.”

    The Epidemic of Family Trauma: On the Frontline of a Global Emotional Battlefront Kindle Edition Amazon.com

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  3. Nobody has more respect for families than Karyn Baker. She developed the recovery-based programming at Family Outreach with her amazing team after listening to and working with hundreds of families over 8 years. This is why her recovery-oriented approach got the attention of so many professionals nationally and internationally, and the Mental Health Commission. What Karyn is saying is, FAMILIES CANNOT DO THIS ALONE. They need support and guidance in the daily struggle that living with a relative with serious mental/emotional challenges creates. There is so much misinformation out there, most families cannot find their way, especially when they are in crisis, without the encouragement of people who have been through the experience with many others. Karyn’s approach has been successful in achieving recovery for hundreds of families, and yes, that evidence is on the record. She would be the first to say that recovery is about fulfilling individual potential, not about one fixed way of being. Her approach is to encourage family members to learn to look after themselves so that they can continue to be an effective support to their loved one. Wearing oneself out to the point of exhaustion and negativity serves nobody. Frightened, exhausted people CAN inadvertently convey negative expectations. That’s just a fact. It was definitely a trap I fell into. Who would want to deny it?
    I love the words that are written above – non-judgemental, direct, and caring, they communicate the truth, which is that all of us, diagnosed or not, no matter what our emotional state, do best in a positive milieu where hope and encouragement are the norm. Diagnosed people need to be valued and included and treated with respect, just like their relatives. Most families are not magically able to achieve this balance alone.
    I am Chair of the Family Outreach Board, because I believe so strongly in their approach. Much of their funding comes from government, but a lot also comes from grateful families who are by no means wealthy. I think that anyone who has a problem with the words above should come listen to Karyn Baker and actually understand them before being so critical. It is the most family friendly organization I have ever seen. Julie Wood

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    1. Then Julie, if it is a family friendly organization, FOR’s annual budget of $500,000 budget of very scarce mental health dollars which comes from the tax payer (some of them families, who have used Karyn’s services, and not been happy, such as myself) could be spent educating the public about serious mental illness, rather than using terminology like “mental health extremes” which is a euphanism and actually defers to stigma.and serves to propogate ignorance. And believe me I and other family caregivers could speak volumes about ignorance. It is because of ignorance that the government funds your organization. There is not much knowledge about schizophrenia and other psychotic disorder about, unfortunately. Just think how many hospital beds could be opened with that $500,000 and how many of our loved ones could stay in hospital longer without being prematurely discharged and having to go back and forth like a ping pong ball.

      Just think of all the anguish that would save.

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      1. Kathleen clearly you had a bad experience and that is very unfortunate. I share your concern about health dollar allocation and I know that it is a very tough call where it is best to invest. In 2016, I do not know the answer to which organizations should get money and which should not, and I suspect that there are many bad decisions in our publicly funded system. However, FOR has diverted many young people who were headed to expensive hospitalization back to school and work. That is why FOR was picked to partner with a major hospital, so that they could take over clients who would have become hospital patients. The success rate has been so good that the LHIN added another person. So the LHIN seems to think that the $500K is a good investment.
        This DOES NOT MEAN THAT YOU ARE WRONG. Everyone has strong ideas about what is the most important, and I do not know your family’s story but I can see that you are a dedicated and caring mum, so obviously your priorities are shaped by what you have seen and experienced. You can and you should fight for what you think is the right approach. When good people all advocate for what they deem important, overall the system benefits.
        Like you, I want to stop anguish. My son died by suicide when he felt so abused and misunderstood by the system that he had lost all hope and all self esteem, and he was a wonderful, caring young man who always helped others. And when it came time that he needed help, the system only wanted to tell him what was wrong with him, and give him drugs. So the memory of his anguish shapes my perspective.

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    2. I do not agree. She is a hindrance and dangerous in that she is preaching against those who do appreciate the nature of these diseases. She should not be given one iota of public funds from our tax dollars. Patricia Forsdyke.

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  4. Julie: I am truly very sorry for your loss. My heart goes out to you.

    Your reply, unfortunately, did not answer the concerning statements by Karyn Baker that were noted in Marvin Ross’ blog. The beliefs that Karyn has expressed have caused me further anguish, and also anguish to other mums who are up against so much appalling ignorance and such a shortage of hospital beds.

    You mentioned my concern about “health dollar allocation” and concerns about “bad decisions” that have been made. I have seen some awful expenditures of mental health dollars in the area where I live, and I am horrified.

    I do not believe that there is proper evaluation of mental health services, and this belief is supported by a report called “Taking Stock” which is a report on the quality of mental health and addiction services in Ontario.

    This report is the work of a joint multidisciplinary
    team from Health Quality Ontario and the Institute for Clinical Evaluative Sciences and other groups.

    Here is a statement about the need for evaluation of mental health services from the Executive Summary of this report:

    “It is important that we monitor the quality of the mental health and addictions care that so many Ontarians depend on for their well-being. We need systematic measurement in order to achieve a high-performing system”.

    I am not sure how Karyn Baker’s views which were described in her article, and which you did not address, would fair if such monitoring were in place. Here is the link to that report:
    http://www.hqontario.ca/Portals/0/Documents/pr/theme-report-taking-stock-en.pdf

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      1. Ms Wood – thank you for your comments. I would like to point out that I am not attacking Ms Baker who, as you say, is a very committed and compassionate person. I do not doubt that but what I am criticizing are her views on mental illness as expressed in her article that I quoted. Madness as she calls it is not a human experience but a pathology and families did not cause it by wounding their children.

        You mentioned your program at a hospital and say you have taken over clients to prevent them from becoming patients. According to your website and unless I am wrong, your program is to support families at that hospital and to help them navigate the system. It may not be a good idea to prevent people from becoming patients under the care of doctors if that is, in fact, what they need.

        On your website, you describe your work on first episode psychosis and refer to psychosis as “spiritual emergencies” or “existential crises.”. That may be the case for some but psychiatrists and others really need to determine if these first psychotic episodes are the beginning of schizophrenia or other conditions that are best treated by them and not social workers.

        I have no doubt that there are many families who are dedicated to your program and who do donate their hard earned dollars but in the past two years, according to your own filing with the government, less than 7% of your revenue came from them. The bulk of your funding came from government.

        I am truly sorry for the loss of your son and can’t imagine your pain but I am confused by your comment that “the system only wanted to tell him what was wrong with him, and give him drugs.” Providing a correct diagnosis for someone is the first step followed by appropriate treatment which may involve drugs and much more. I do not wish to sound insensitive and I don’t know all the facts but there are times when nothing helps despite all the best efforts.

        Marvin

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  5. Hi Marvin,

    Good job. Again. Love “Sisters of Perpetual Determination”.

    We have another meeting with 4 people from the MOHLTC (including an Assistant Deputy Minister) and the MCYS. Feb. 4th. Wish us luck!

    Angie

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  6. To Mr. Ross – Familial abuse and neglect that Mad people endure from their families is reflected in and resisted against in our extreme states. Mad people’s family members’ are phobicly opposed to trauma informed care for their Mad family members because the success of this care is SCIENTIFIC PROOF that their Mad family members’ extreme states aren’t “symptoms” of “biologically based illnesses”, but are instead meaningful and intelligent adaptations to sick and, in some cases, evil family systems which were created by the unpathologized members of these families who are the bona fide whack-jobs.

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