Danny and Teresa
(1-24-22) For more than 20 years, Teresa Pasquini has been fighting to get her son, Danny, the housing and treatment that he deserves. She has written extensively about the challenges that they have faced and openly about what worked and hasn’t worked in California. Recently, she and fellow advocate, Lauren Rettagliata, traveled together to inspect 22 different California housing facilities, and issued a white paper called Housing That Heals.
Crawling Through Glass in Search of Housing That Heals
By Teresa Pasquini
I am the proud mom of an adult son who lives heroically with a serious mental illness. He was diagnosed in his teens and has spent the majority of his adult life in locked psychiatric facilities. Until recently, there had been nothing civil or right about my son’s care.
The past 20 years have been a blur of suicide attempts, over 40 involuntary holds, revolving hospitalizations, homelessness and incarceration. Even though we had resources, insurance and my full-time ability to navigate a maze of services in one of the most integrated healthcare systems in our country.
It was still a nightmare.
At the age of 19, Danny was placed under a California LPS conservatorship (named for the Reagan-era Lanterman-Petris-Short Act) for 20 years. Families like mine use this type of conservatorship as a last resort, often after being forced to allow our loved ones to mentally deteriorate, become homeless and sometimes suicidal.
Under the law, people suffering from disabling mental illness must pose a threat to themselves or others in order to get through a psychiatric hospital door — only then can they be treated without their consent. Once the individual is committed to the hospital, the law appropriately imposes protections that can extend the stay and require medication. (You can read more about my views on LPS here.)
Danny’s multiple revolving hospitalizations began the same year the LPS conservatorship was put into place. He would spend months behind locked doors in faraway facilities in 9 different counties, but rarely in Contra Costa County, his home county where he was born, went to school and where his family lives.
Danny’s Dad and I would visit him every week no matter how far away. These out of county placements were often the only option available and he was prevented from healing near his family, in his own community. When he returned to live in our home or a community placement, the medically necessary continuity of care and recovery supports quickly failed.
There were discharges from acute settings to “least restrictive” Board and Care homes that were inadequately staffed and monitored leading to a return to a locked unit. There were discharges from IMDs (institutions for mental disease) to transitional housing where the provider forgot to administer his monthly anti psychotic medication resulting in a return to emergency, acute and back to an IMD/MHRC (mental health rehabilitation centers) locked units far away from family.
Attempts at Independent Living
There were also attempts to set up independent living situations with friends that quickly ended in involuntary holds. We even allowed a girlfriend, JJ (a friend from high school who he became reacquainted with in a locked facility) to move into our home. This provided them both the ability to live together in a stable, family environment.
JJ had been living on the street or couch surfing since her discharge from the psych facility. While living with us, I fell in love with her and helped get her into a Full Service Partnership (FSP) program that in California provides intensive “whatever it takes” wrap around services. This was a program only offered to those in the public system and paid for through California’s Mental Health Services Act (commonly called the millionaires’ tax) funding. Since we had maintained our son’s private insurance, he was not eligible for this program. (You can learn here about our decision to ultimately drop our private insurance so I our son could get access to all available facilities.)
Living with us worked for awhile but then stopped working. Danny and JJ moved back on the streets.
After 6 weeks slipping between sidewalks and shelters, Danny went before a Superior Court Judge for a hearing on the renewal of his LPS conservatorship. The judge agreed to maintain the conservatorship and decided that Danny and J.J. should move into a “Housing First” facility.
It was grossly inadequate for their level of need. I was so discouraged that I wrote about it. Here’s a key paragraph.
“The judge agreed to allow Danny to live in a duplex with his girlfriend who was in an FSP. It was not a safe neighborhood. The “whatever it takes” services were inadequate for their level of need. Within 3 weeks my son was off his meds and suicidal. His girlfriend called the Full Service Partnership 24/7 phone line for help but nobody answered. So she called me and told me that my son was carving on his own throat. I called 911. By the time I arrived, the ambulance was pulling away and I was assured he was okay. I went inside to speak to his girlfriend and introduced myself to the Police Officer. The officer told me that when they arrived, Danny tried to run out of the house and was cornered in the back of house. He wrestled with an officer and had to be tasered. I apologized to the officer and explained the efforts we had made to support our son and the placement. I knew we were lucky that he was on his way to a hospital instead of jail or the morgue. So, this “Housing First” experiment resulted in a system failing for my son again. He was sent to live in a locked facility for several months.”
Coming Home To Live With Us: Parents As Watchdogs
After this traumatic experience, my husband and I offered to bring our son home again to live with us while still on his LPS Conservatorship. We felt that we were able to offer him the best supports and chance for stability. For the first month, we never left him alone because he was at risk. After a month, we decided it was safe to go to the movies for two hours one Sunday. When we returned we found our son vomiting from an over dose of medications he had obtained from his girlfriend. We took him to the hospital and he was released back to our home.
But, that was the day that I decided that I couldn’t let him die on my watch without knowing that I did everything to help him live.
After several more years of being failed and jailed and falling off every carved out cliff of the California continuum of care, Danny was placed in a locked IMD/MHRC facility called California Psychiatric Transitions(CPT) in Merced County. This was a unique diversion from the California state hospital system where Danny had been sent on a civil commitment and was then arrested and criminalized as a patient. NAPA State Hospital’s unwillingness to communicate with his county treatment team about the medications that had previously been effective led to horrific outcomes for Danny. Hospital officials refused to listen to me, his mom, who knew him best. After five consecutive seclusion and restraint interventions, Danny lashed out and was charged with felony assault. This put him in the “incompetent to stand trial” human log jam in California.
I went into warrior mom mode and fought to prevent him from a state prison sentence.
Luck, heroics, and an amazing public defender helped get him diverted to CPT after 4 years of revolving court room doors, shuffling between two state hospitals and solitary. CPT was finally the right place at the right time and he finally received the right care. He was prescribed Clozapine and Lithium which gave him the ability to clear the voices long enough to be able to hear how to manage his symptoms and his life.
I will never forget him calling one day and saying, “Mom, I have a mental illness.” I smiled through my tears and replied, “I know honey.”
After all of the prior years of suffering, the right medication and supports at CPT helped lift the anosognosia that had previously blinded him from seeing a way out of his darkness. The outcomes from this placement were miraculous. He worked through all levels of the program. He learned about his illness and symptom management and was able to gain insight for the first time since he was diagnosed 20 years earlier.
He made friends with both the staff and his peers. He had no violent outburst towards himself or others. And, in 2018, Danny worked his way home for a weekend pass and had his first Christmas at home with his family in over 6 years. This was the first time sleeping in his own bed behind an unlocked door in years.
It was also the first time he was reunited with J.J, who after years of living on the streets, had finally been conserved with my advocacy help, and had also found sobriety and stability in the community. For the first time, they had both been given the right amount of time to stabilize and move through the appropriate levels of care.
It was sweet and bittersweet to see them together, smiling. They had both suffered so much for so long.
Danny graduated from CPT and transitioned successfully to Psynergy, an Adult Residential Facility in a residential community setting. You can read about the program in this article that I wrote. Danny has continued his recovery process at Psynergy for two years with the help of their on-site clinical, medical, and recovery supports. This is prevention, intervention, person/ family centered, and value-based care.
Housing That Heals: Moms On A Mission
I don’t believe that Danny would have survived solitary confinement in jail if he had not been provided the tiered levels of care provided at both CPT and Psynergy. I consider CPT to be the gold standard for IMDs in California. CPT was the least restrictive care Danny needed at that time. A locked IMD is less restrictive and more therapeutic than a solitary jail cell. Psynergy is one of the few gold standard ARFs in California. CPT is locked. Psynergy is unlocked. Both are what I call “Housing That Heals.”
Because of the trauma of our family experience and my fear about what would happen to Danny when we are no longer here, I joined another mom, Lauren Rettagliata, in 2019 on a journey across the state of California to visit over 22 facilities. We traveled in search of a place like home where our sons could live in safety, community and dignity.
Teresa Pasquini and Laura Rettagliata on the road
We wrote the white paper called Housing That Heals about our journey that combined our “data of the soul” with policy recommendations. It was released on Mother’s Day in May 2020 and we have spent the passed 18 months presenting our journey to multiple NAMI affiliates, local, state, national mental health and community organizations. The response has been overwhelmingly positive and was captured in this blog post by NAMI Santa Clara.
No one should be forced into solitary confinement and criminalized for their illness when there are models of less restrictive care that must be accessible, funded, and replicated. This was the purpose of the “Moms On a Mission” Housing That Heals journey. We wanted to show that there are alternatives to jails, state hospitals, and poorly run board and care homes or unlicensed SROs. We wanted to show that some people need more than a room key to live free and find recovery. We also wanted to shatter the myth that moms like us just want to lock our loved ones up and throw away the key. We wanted this for our families and all families like ours who are afraid of dying and leaving our loved ones without adequate clinical and housing supports. And, we want this for those who have no family. We wanted to prevent a loss of dignity and freedom for all who live heroically with severe mental illnesses and/or substance abuse issue.
One of the cruelest things we do is take away someone’s rights, put them behind locked doors faraway from their family and community and then step them down to an inadequate continuum of care without appropriate supports, inevitably resulting in a locked placement again.
This is the status quo that I refuse to accept.
My personal tagline is, “I am a recovering angry mom who will partner with anyone willing to shatter the status quo.”
In today’s political environment that is not always easy for me or anyone. But, building common ground to unite on solutions to incentivize a full continuum of psychiatric care and a tiered system of Housing That Heals is the only way forward. There is no one size fits all answer to stop the circle of suffering that so many families like mine are experiencing.
I recently testified at a California Assembly Joint Hearing on LPS Reform. I publicly shared many of our family’s darkest hours in an effort to teach and touch the policy makers and law makers of California. I wanted to bring the voices of families like mine into the room and explain that even when you have an early diagnosis, private insurance, family support, and resources, your loved one can still fall into the “black hole” of the California mental health system. And, families fall off too.
We all need a system ladder that will catch us before we fall and give all the ability to step up and down as needed.
In a call to action, I begged for unity and urged us all to lay down our ideological weaponry that is harming our loved ones, our families, our communities and the providers who serve all. And, I wanted to show that families like mine are providers too. We are nurses, social workers, therapists, teachers and system navigators for our loved ones. We give up our careers or lose them taking care of our loved ones. We would do anything to keep them safe and help them thrive if we had the ability to do it on our own. But, we don’t. We can’t. We try. It’s impossible.
We need a fully funded continuum of care and a tiered system of Housing That Heals to save money, lives and our state and national soul. So, I urge a different policy mindset on the local, state, and federal level for the SMI population. This is a moral moment when all stakeholders must unite to stop the deliberate discrimination that incentivizes the current human log jam in our jails, prisons, hospitals and streets.
Nobody can defend the status quo. It’s time we shatter it together!
About the Author: Teresa writes: “I have been a mom on a mission for my family and families like mine for over 20 years. That mission is grounded in my determination to stop the suffering that I have witnessed in my community, my state, my country and in my own home. The suffering is unnecessary and can be prevented if we would all be willing to lay down the ideological weaponry that is only protecting the status quo. My journey to shatter the status quo is anchored in my strong social justice upbringing and the trauma of watching my beloved son fall off every jagged edge of every broken piece of the public and private mental health systems of California.
(The views expressed by guest bloggers are their own.)
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