Family members are encouraged to share their stories of the challenges they face seeking help and support.
Good afternoon. It is my honor to join my partners today to share our story of change and healing. . . . My name is Teresa Pasquini. I am a Contra Costa County Mental Health Commissioner, a family representative to numerous Behavioral Health advisory bodies and the Chair of the Behavioral Healthcare Partnership of Contra Costa Regional Medical Center and Health Centers. Today I will be speaking as a family member only and I will draw on my 35 years of lived experience with the mental health system of care and tell you how I have evolved from an angry mom to a partner of change.
My first defining memory of mental illness came when my brother, jumped off the Richmond/ San Rafael Bridge. He had been having command hallucinations to kill himself in order to save his family from the Mafia. He drove his car over every bay area bridge and settled on the Richmond/ San Rafael Bridge because it was the least congested. He parked his car at the highest point, of the top deck, and climbed onto the railing. He carefully lowered himself to a hanging position and released his grip. His body hit the water perfectly, which saved his life. He describes seeing the colors of the water change as he crashed into the bay and knew immediately that he wanted to live. He was rescued by a local fisherman who pulled his body, with a broken back, into a small boat. He was taken to the closest emergency room and transferred to an intensive care unit. Once medically stable he went to a local psychiatric hospital.
Because my brother had been a high school sports star and Student Body President, his suicide attempt was reported in the local papers. Still my father urged us not to talk about what had happened. This was 30 years ago when stigma and shame was even more prominent. However, treatment was much more accessible, and so my brother recovered, after many months of inpatient care. With the outpatient services provided, medication and therapy, he was able to return to college and receive his Masters in Special Education. He went on to teach for many years. He is one of my heroes and a true recovery success story.
In contrast, my son, who was diagnosed at 16 with Bi-Polar Disorder, has been hospitalized over 25 times in several locked facilities. His first 5150 occurred at the age of 15. It was a suicide by cop type event. He was high or drunk and was running from a sheriff deputy and when caught, he begged to be killed. We received a call that he was being taken to the psychiatric hospital in Walnut Creek, CA, which like many psychiatric hospitals, has since closed. Although I had experienced the mental health system, with my brother, many years before, nothing would prepare me or my husband, for what was to come into our lives. The past 14 years have been a blur of suicide attempts, over 40 5150s, revolving hospitalizations, and a permanent conservatorship that has lasted for most of the past 11 years. Fortunately and miraculously, we have escaped the jail system.
I have been a soccer mom, a room mom and a stay at home mom but I didn’t know how to be a mom to a child with a serious psychiatric illness. There is absolutely no way to prepare for the chaos and crisis that this medical illness brings into a family home. The family is the secondary victim of mental illness. But, it was the mental health system, with all of its inequities, complexity and discrimination that became the monster in our family, not the serious and persistent mental illness our son was enduring. With an original diagnosis of Bipolar Disorder, we began to navigate a maze of services in one of the most integrated healthcare systems. It was a nightmare. Balancing a business, a marriage, a family, and a serious mental illness was overwhelming.
I had to take control and become my son’s case manager, a special education advocate and a mental health system expert to save his life. I had the resources and ability to do this although not all families are so lucky. We were told when our son was diagnosed at 16 that we would be lucky if he lived past the age of 25. However gratefully he is still alive today at the age of 29. My son’s mental illness and the mental health system have changed who I am and taught me that I needed support and partnerships to survive.
I joined the National Alliance on Mental Illness, NAMI, a non profit advocacy and education organization. For a couple of years I went to monthly meetings and shared my grief with other families experiencing the same nightmare. We were on the same team that nobody wanted to be picked for and we helped each other and our children cope.
I remember one point in time when I was taken to my knees in pain. It was following one of the numerous hospitalizations where I was ignored, my son was ignored and I felt defeated and broken. I knew that I could not control the current system and all of its injustice, but I realized that I could control how I spoke out and fought against the ignorance and discrimination toward clients and families. I had a Scarlet O’Hara moment. Just like Scarlet cursing the ravages of the Civil War, “As God was my witness…” I was going to change the mental health system.
I applied for a Family Member position on our local Mental Health Commission. I had no clue what I was getting into or that my life would change profoundly as the result of this volunteer position. After a couple of meetings, I recognized that there was very little public recognition of the harm being perpetuated on families and their loved ones in a very broken system of care. There was mostly talk of the “positive” things being done. I began speaking of the negative things that my family had experienced. The negative versus positive dynamic created a tension that challenged my advocacy work early on as a Commissioner. In order to encourage the benefit of direct action, I wrote an open letter to the Commission in 2008 on the differences of positive and negative tension.
In my letter I quoted Martin Luther King Jr’s, famous April 16th, 1963, “Letter from a Birmingham Jail.” It is a brilliant piece. The theme is the difference between positive and negative confrontation and their purpose in solving crisis. King shared his disappointment in the response from the white moderates to his direct-action program. He stated that “…the white moderate, who is more devoted to order than to justice; who prefers a negative peace, which is the absence of tension, to a positive peace, which is the presence of justice…” King further wrote, “Actually, we who engage in nonviolent direct action are not the creators of tension. We merely bring to the surface the hidden tension that is already alive. We bring it out in the open, where it can be seen and dealt with. Like a boil that can never be cured so long as it is covered up but must be opened with all its ugliness to the natural medicines of air and light, injustice must be exposed, with all the tension its exposure creates, to the light of human conscience and the air of national opinion before it can be cured.”
In my letter I shared that like Dr. King, I am not afraid of tension. My deep moral concern, for those with mental illnesses and their families, cause me to challenge the power structure and systems that prevent their health, wellness and integrated care. I don’t believe that tension prevents people from working together productively. I don’t believe that tension prevents progress and change.
After writing my letter, the pull of the status quo was mighty and I was encouraged to be more collaborative and not use my personal story so much. I took that advice to heart and rejected it in part. This was personal. I would not be silenced about the harm caused to my family, but I sought to find a more respectful way to challenge the status quo and consider the bigger picture. That led me to the July 2009 rapid improvement event at Contra Costa Regional Medical Center.
I was one of two family members invited to participate in a one week rapid improvement event for congestive heart failure. The team wanted to explore the risk factors of CHF for behavioral health/psychiatric patients. Prior to this event, there was concern about me whispered around the tables and behind closed doors. Cautious warnings were shared about my outspoken, even radical, direct action approach. Fortunately, the Administration of CCRMC took a risk and opened their doors and minds and even encouraged me to push them forward. The first event was the beginning of a partnership that ignited our shared vision of hope.
Our partnership started off strong and excited creating our mission statement to “transform healthcare to be accessible and welcoming for all” Meeting weekly with the CEO, Chief Psychiatrist, Psychiatric Program Chief and other key leaders of the hospital administration we ventured into discussions that were previously reserved for internal staff meetings. We spoke freely of access, safety, errors, and improvement. We were teaching and learning together and laying down the tools that had been failing. We were challenging the system and embracing the tension that comes from change. And there was tension.
The tension was often whispered offline or subtly felt in meetings. The staff was not trained to be open with “outsiders” in the room. The patients and families were not familiar with “medical speak.” But, through determination, courage, and leadership, the comfort level increased and lessons were learned.
The main lesson learned is to respect each others lived experience and assume good intentions. Remove blame and shame and establish a just culture mentality based on equity of ideas balanced with regulatory demands. If there are tensions, embrace them and fight through them in order to find the benefits for the patients, the families, and the staff who serve them both.
With the creation of our mission statement we realized that a previous hospital policy was considered to be non accessible and non welcoming for approximately 600 psychiatric patients each month. The consumer and family voice was strong and challenged the hospital administration to consider re-opening the door to the Psychiatric Emergency Service that had been closed five years earlier in order to re-direct psychiatric patients through the regular ER. By working as a team of change agents, the Behavioral Healthcare Partnership helped push this idea forward by electing two of its members to attend the weekly Executive Operational team.
Brenda Crawford and I, representing consumer and family voices, joined the inner circle of the hospital leadership to further opportunities to unite in innovative, strategic, operational change. The first outcome of this effort was the decision to convene a Lean Value Stream Mapping Event for Behavioral Health. The Executive Team supported and teamed with its community partners to explore this idea through science. The first of six Lean Behavioral Health Improvement events resulted in the re opening of the Psychiatric Emergency entrance in May of 2010 for direct access to medical and psychiatric care. This has been acknowledged by the Joint Commission as an example of excellent patient care.
Opening doors and opening minds to the possibility of systemic improvement through the use of patient and family member advisors has been a primary aim of the Contra Costa County Healthcare Partnership. We have learned that it is not possible to transform, improve, or integrate our system if we continue with hospital/clinic centric, hierarchical or territorial thinking. We discovered that we must look behind the doors of our homes, homeless shelters, hospital floors, clinics, ERs, Board rooms, other health divisions, and the CEO’s office in order to prepare ourselves for the cultural shift. We have been doing that in Contra Costa.
It was following one of the rapid improvement events that Anna Roth said, “This is Teresa Pasquini. She is the Mom of a consumer who our system has harmed and she has also been harmed.” This is not a typical introduction from the CEO. It means everything to a family member to have their pain acknowledged. It is that kind of transparent and humane communication that has committed me to join all layers of our community in partnership to wrap the safety net around our most vulnerable. .
I have referred to myself as a recovering angry mom but I have been advised by healthcare leaders not to recover too much because they say that a little anger is good for driving change. One thing that I will never do is keep my mouth shut about the need to improve the way we provide treatment to those with serious mental illnesses. I have been working to make systemic improvements in Contra Costa County for the past 6 years. The first 4 years were spent blaming, shaming, and plotting to catch the system in an error and then report it. I was righteous in my zeal for holding the system’s feet to the fire. But it was ineffective and divisive. A series of events took me on a journey that would take down my anger wall. The journey taught me that nobody comes to work to harm. It is the system with its defects that hurts patients and families. By laying down the adversarial tools, using data and science combined with our personal stories we have restored hope and moved our system of care to a more patient and family focus in support of one of the most vulnerable populations which includes my son.
I have exposed my life and story to the community to teach and to challenge the health system to not forget families like mine. I offer my story to help save my son’s life and others with mental illnesses who suffer needlessly in silent shame. I am sometimes judged for sharing so much detail in a public setting. But I wonder why I should have to wait until my son is dead before I can have the “mental health” system’s permission to speak of his suffering? My son is the strongest person I know and he deserves a system of care that is healing and protective.
I reflected on our family experience during a recent visit to our son while my husband and I drove a total of 5 hours round trip. Psychiatric patients are often not treated near their home, but in out of county placements. When we arrived, our 29 year old son came running with such happiness at the sight of our car and stopped at a high wire fence, waving to us. It reminded me of when he was in kindergarten and he used to run to the school yard fence to greet me. The fence reminded my husband of a prison and it took him a while to get out of the car and head into the visit with our son in this locked psychiatric facility. My husband still struggles with his inability to rescue his son from his symptoms and the system. They have stolen his son’s freedom, dignity, and often the will to live. How do we hold on to hope when our son continues to suffer by a broken, fragmented, under funded mental health system? I choose to seek partnerships with other change agents who believe that all deserve the right care at the right time.
My family has had the misfortune of being exposed to every level of care provided on the continuum of mental health services. I have been to the dark corners of the system. Some were in my own home. Some services were private based care, others were public. I have challenged the hierarchical cultures of both systems, not to be rude or disrespectful, or radical, but to shine a light. I have seen too much and know too much to ignore the realities that cause consumers and families to destruct and die. As JFK said, “We are not here to curse the darkness, but to light a candle that can guide us through that darkness to a safe and sane future. For the world is changing. The old era is ending. The old ways will not do.”
Contra Costa Health Services has shown bold courage by offering our community a trusting, authentic, shared learning experience and partnership that goes beyond the traditional advisory role. This is a team that I am glad that I was picked for because we have learned to speak the truth, hear the truth and go and see the truth. With constancy of purpose and focused direct action we will create a system where the consumers, families, community organizations, clinicians and staff work in a true partnership. No politics, no discrimination, no special interests, no egos, just pure ethical healthcare based on the needs of the patient. I have seen it happen. It is possible.
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