Frustrated with the mental health care system's failure to involve families of those with serious mental illness, a Richmond Hill Ontario mother filed a discrimination complaint with the Ontario Human Rights Commission against two local health authorities. And while she did not win her argument, she feels that she did win a moral victory.
Kathleen Mochnacki is the family caregiver for her 31-year-old son who has schizoaffective disorder and her complaint was lodged against the Central and Toronto Central Local Health Integration Networks (LHINs) who are funded to finance, plan and integrate the health care system in their geographic areas. These two organizations collaborated on the development of a Mental Health and Addictions Service Access model for their area. To do so, they first sought volunteers to sit on their steering committee with a deadline to apply of October 31, 2011.
One criterion for consideration was experience in family initiatives or networks, which Ms. Mochnacki possesses. She told me that she is on the board of a family organization called Home on the Hill in Richmond Hill and on the family email list for the Krasman Centre. Home on the Hill was started by families in order to "individually and collectively aid our loved ones to achieve a better quality of life and thereby enhance our own". The Krasman Centre serves as a physical hub and resource for the community of Psychiatric Survivors and their Families and Friends.
Ms. Mochnacki claimed that no family members were ever informed to the best of her knowledge about this opportunity to sit on the Steering Committee and the first that family members heard of the Access Model was when the LHINs held focus groups in the community. Home on the Hill was not informed nor was any notice sent out to family members through the Krasman Centre e-mail list.
The Human Rights Tribunal stated in its review of her case that Ms. Mochnacki "believes that caregivers of family members with psychiatric illnesses have been excluded from participating in the development of mental health services. She states that although families are financially responsible for the care of their family members, they are not considered equal partners in the mental health system."
In fact, this failure to involve families with the care of their adult children even when those adult children live with their families and are dependent on them has been previously identified in various jurisdictions. The All Party Select Committee on Mental Health and Addictions in Ontario heard considerable frustration from family caregivers about their inability to be involved. That committee, whose recommendations from 2009 have been largely ignored by the Ontario government, commented that:
"Many people told the Select Committee (P.17) of their frustration at being emotionally and financially responsible for their loved ones while not being considered a partner in care by the health care system."
The Mental Health Commission of Canada in its report on Family Caregivers, suggests (recommendation 31) that family caregivers participate in reviewing existing mental health services, identifying gaps, and designing plans to address these gaps with policy designers and mental health service administrators.
In the U.S., the recently introduced legislation by Rep Tim Murphy called the Helping Families in Mental Health Crisis Act makes similar comments about families being cut off and needing empowerment. That is one of the many recommendations for improvement in that bill.
While the Human Rights Tribunal adjudicator did not feel that Ms. Mochnacki was discriminated against under the terms of existing legislation, she did agree with her concerns. Jennifer Scott, the adjudicator, wrote that:
The applicant may well be right that family caregivers of children with mental health issues have not participated in the development of mental health services to the extent that they should. She may also be right that the development of mental health services might be better if their voices are heard. The fact that the work of the Steering Committee may have been enhanced by the participation of family caregivers does not mean their exclusion of the Steering Committee is discriminatory. The Steering Committee consulted with family members in three consultations in April 2012. The applicant participated in one of these consultation sessions.
The report produced by the steering committee is called Recommendations for a Mental Health and
Addictions Multi-service Access Model with a date for the final report of July 20, 2012. I do have an electronic copy of the report, but it is not on the LHIN website. Those who were chosen to sit on the steering committee turn out to be almost all directors, executive directors and senior consultants of existing agencies that provide those very same mental health service. No independent family members who care for the seriously mentally ill are on the steering committee. No psychiatrists are on the steering committee either, and they are the ones who diagnose and treat.
The Toronto Central LHIN responded to my questions by stating that they were pleased to see that the Human Rights Tribunal did not find that they discriminated. Megan Primeau, the media spokesperson, added that they "would like to emphasize that local decision making is the model that the LHINs are built on, and one that values the input of community members, health care professionals, and stakeholders to inform our planning and decision making processes. She added "and we make our best efforts to consider all voices when we undertake community engagement."
The Central LHIN also stated that they were pleased to see that the complaint was dismissed and that "We value transparency and engagement with our communities to support our local planning and decision-making processes as this is fundamental to the LHIN model. Input from clinicians, health care professionals, patients/clients and family caregivers in our LHIN provides us with valuable insights that ultimately leads to system level improvements that are responsive to the needs of our communities."
Crystal Moss, the LHIN spokesperson further stated that in "October 2013, family members participated in a two-day process mapping session. There were specific opportunities built into the two days to share their valuable perspectives as users of the system." and referred me to that report which lists grievances with the system.
She also added that they are familiar with the Mental Health Commission of Canada Family Caregiver Report and have already implemented one of its recommendations to have a one call number for people in need of mental health services. Further, their mandate is that "each health service provider shall engage the community of diverse persons and entities in the area where it provides health services when developing plans and setting priorities for the delivery of health services."
The Toronto Central LHIN did not respond to my question asking if they were aware of the Mental Health Commission of Canada report on family caregivers and if they intended to implement them. They did point me to a 2010 paper they did that involved families. But this paper was simply a report of focus group meetings held with families in which families again listed their many grievances. Families did not seem to be involved in any decision making and committees nor does it seem that the situation has improved. The grievances listed by families were the same as have been made to the Select Committee and the Mental Health Commission.
There are grievances that include lack of knowledge and training about serious mental illness by those in the system, unrealistic privacy legislation that can put people in danger, and lack of recognition that serious mental illnesses are often life long disabilities that cannot be successfully addressed by time limited case management, and, as Ms Mochnacki said of her area, approximately 39,000 to 56,000 individuals who require mental health services were not receiving community mental health services (Section 2.4). But, regardless of how many times you get people to list these grievances in focus groups, they remain unresolved until some action is taken. No wonder so many of us, like Ms Mochnacki, are frustrated. And Ms Mochnacki made the point to me that much of the stress that family members experience is the result of what is perceived as an unresponsive system.