An Open Letter to Governor Taft and Director Hogan

May 24, 2004

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Dear Governor Taft and Director Hogan:

I felt I must write to tell you about the "Rights and Recovery Kick-Off Campaign" which took place in Columbus at the end of March. The event was a collaborative effort between the Ohio Legal Rights Service (OLRS) Protection and Advocacy for Individuals with Mental Illness (PAIMI) Advisory Council, which sponsored the event, and the Ohio Department of Mental Health (ODMH), which funded it. Over 130 people participated in the event, including people diagnosed with mental illness, their friends, family members and advocates, as well as artists, musicians, and public servants of the mental health community. The day opened with a presentation by Mike Hogan, Director of the ODMH.

The day long kick-off resulted in an exciting vision of advocacy for recovery. This vision provides a platform for mental health advocates to speak from in their promotion of rights as a support to recovery. The event provided an opportunity to demonstrate the necessary and natural relationship between Rights and Recovery and the role of Advocacy in achieving both. While the day provided a positive advocacy vision for people to focus upon, it also inspired a perspective of vigilance — of watchfulness. The words spoken during this extraordinary day reflect the realities of what it means to recover within Ohio's mental health system. These realities are what require the vigilance of the mental health community.

The day focused on the "practical" connection between rights and recovery. Facilitators, most of whom were members of the PAIMI Advisory Council, introduced informational and advocacy materials developed to promote how rights can support recovery.

In response, the invited participants shared their experiences and ideas, personalizing and validating the relationship among rights, recovery, and advocacy. The comments from consumers about the current mental health system were compelling and persuasive, and their comments are what made this day so extraordinary. Each issue raised came from a story of private humanity.

Although all the themes running through the discussions were compelling, two struck me as particularly powerful.

Ohio's Broken Mental Health Advocacy System

Consumers repeatedly told us that Ohio's advocacy system is broken. They believe it is broken because individuals with mental illness are afraid to voice concerns about the care and treatment they receive in the mental health system for fear of retaliation from service providers. This theme was pervasive, as seen by the following direct quotes.

"[There should be] ... no fear of speaking out; no punishment."

"Grievance [should] not be seen as a punishment but a means to improvement."

"CRO [should] take complaints/grievances/requests for help seriously — not see them as a threat."

"CRO to take the consumers concerns more seriously."

"I have for a long time needed some true advocacy...everything is attempted to keep consumers insul[a]ted and disempowered."

"[I want] ... to truly have advocacy."

"... to have someone who would listen."

"Being heard aids recovery."

"It appears to me that ... providers usually win (he said/she said)."

The feelings of fear, reprisal and retaliation were very real in the voices of those who spoke. Several people recounted their own negative experiences with provider retaliation after using the grievance procedure. Others said that after watching fellow consumers get punished for complaining, they made the decision to remain silent about their own situation. And yet others expressed how the mental health system added insult to their injury: not only had they suffered punishment for speaking up, but nothing happened to fix their situation. Consumers expressed that, because they were unable to present and resolve their problems with the service system, their opportunity for recovery was compromised. This basic flaw in Ohio's mental health advocacy system is disturbing.

On the other hand, people who had experienced retaliation within Ohio's mental health system were clearly able to express what could make the advocacy system work better to support their recovery, as the following comments show.

"The CRO [should] not be an employee of the provider."

"To have a separate entity (non partial) which would deal with rights among consumers and agencies."

"More independence of CROs."

"Promote hiring a CRO not employed by Mental Health Agency."

"Change the way CROs respond to consumers."

"Remove advocacy from political process."

"Make info on CROs more public for clients."

"[Require] state certified training."

"Groups of clients with same complaint are more effective."

"CROs ... should be something other than a deeply controlled serf of the CEO and other administrative personnel — some independence permitted — and permitted to find for the grieving client, if the client is right."

"The client rights officer should not be paid by organization you belong to. And the mental health board and organization should not be so friendly to each other (first name basis)."

It is likely that Ohio's current "complaint system" also serves to re-traumatize people who don't need to be traumatized any more. How? Fear to speak out about something that one feels is not right perpetuates some of the same issues that give shape to mental illness — isolation, hopelessness, and rejection. Re-traumatization stops the recovery process. It also can undermine and thwart the recovery that a person is experiencing. The current complaint system may, in some situations, be doing more harm than good.

Finally, we may need to consider what the reality that people cannot complain in comfort says about our mental health system. Does it reflect a still existing underlying stigma associated with mental illness? Does our system discourage people from speaking out because it does not value their thoughts or opinions enough? Are we unaware of insidious stigma, and does it still pervade our system? And why? Do public policies and regulatory practices still permit the existence of stigma? Have we taken the actions that are necessary to eradicate stigma from our mental health system?

In reflecting upon the state of the mental health system in Ohio today, we should look critically at the nature of the advocacy system. How can it be restructured so that consumers and their families can have a renewed sense of confidence in the advocacy system? Clearly, in order for consumers to use the advocacy system in a meaningful manner it must be valued to a far greater degree than it is today.

The Very Real Fear of State Mental Health Hospitals

A second theme that sounded loudly throughout the day was that state mental health hospitals scare people. Expressed fears stemmed from maltreatment, mistreatment, isolation, retaliation, loss of self, loss of family contact and support, medication issues, and a general upset of personal decision-making and autonomy.

Several speakers shared stories of their fear of re-hospitalization: that the single greatest fear in a person's life was that she or he would be forced to return to a state mental health hospital.

Consider these honest comments from two participants:

"Consumers ... [should] not be required to enter [a] state institution."

"Are we changing the hospitals, really changing them?"

When words such as these were spoken, you could feel the fear and distrust about state hospitals resonating throughout the room. At first a silent uneasiness permeated the air as the faces of consumers reflected their past experiences. Then, as more stories were told, the entire audience expressed its collective agreement about Ohio's state mental health hospitals.

What lesson do we take away from these sentiments? At the very least, we should question why fear and dread of state mental health hospitals exists of such magnitude — especially by those who know, those who have been there. We should also ask whether Ohio's state mental health hospitals proactively foster the partnership of hospital staff with consumers in the consumer's recovery process. Hospital staff and other mental health service providers are integral partners in a consumer's recovery. Both consumers and the staff/providers should know that they share in the journey of the consumer's recovery. ODMH's hospital, Twin Valley Psychiatric System (TVPS), recently developed a "Recovery Management Journal," which is an excellent tool for getting this message out, and which should be used on a widespread basis at Ohio's mental health hospitals.

Adopting a Perspective of Vigilance

This letter has given me the opportunity to share both rewarding and thought-provoking information with you. I hope you felt the impact, as I did, of the very personal expressions included here.

Further, I hope that this letter has brought into focus the need to adopt a perspective of vigilance on the issues surrounding complaint resolution and advocacy within our system. And we must adopt that same vigilant perspective as we consider the efficacy of our state mental health hospitals. After all our years of progress in the mental health field, some issues seem to have lived on, quietly and unfortunately, insidiously. From a perspective of vigilance, we can then take the actions needed to address these issues. Only with action can we stop these issues from impairing the recovery process for many people.

Recovery, a Journey of Hope

Lastly, please also take away with you another lesson we learned from our day on the "campaign." And that is this: although many stories spoke of concern and disappointment with the current mental health system, other stories reverberated the exuberance of triumph — personal triumph in recovery, collective triumph in advocacy, shared triumph of uniting on this day and being empowered to speak out. Be pleased to know that participants reinforced each others strengths and skills and many pledged to return to their communities as both self advocates and advocates for others.

In considering recovery on March 24th, we, the participants of the "Rights and Recovery Kick-Off Campaign" shared and collaborated. We enriched the journey of recovery with information, unity, perspective, and with what we all need — hope. Join us now, come along, let us together improve that path upon which this journey of recovery and hope passes.

Thank you and sincerely,
Carolyn S. Knight, Executive Director
Ohio Legal Rights Service

Cc: Greg Moody, Executive Assistant for Human Services

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