Presentation to Decarcerate Alameda Coalition (December 9, 2021)
http://www.decarceratealameda.org
By Katy Polony
I have a son with schizophrenia who lives with me. Due to the commanding voices that he lives with, I seriously credit fairly long hospital stays with my son still being alive today. I'm on the board of directors of NAMI East Bay (National Alliance on Mental Illness) and am one of the organizers for FASMI (Families Advocating for the Severely Mentally Ill).
I'm the family advocate on one of the IHOT teams, of which there are four in Alameda County. IHOT is a small team who are tasked with getting folks with severe mental illness connected to services. Getting them help. We work with folks on the streets, in Santa Rita and living at home. All week I work with people mostly on the psychotic spectrum, and their families.
Addressing the issue of locked beds, let's start with where we are and how we got there:
When I refer to Hospital beds I'm referring to locked facilities. Our public psychiatric hospital beds are at John George, our acute facility, and three subacute facilities, the primary one being Villa Fairmont.
· Number of public hospital beds: 256
· Number of private hospital beds: 208, and occasionally people on Medi-Cal will use these beds.
The number of folks with Serious Mental Illness in a county the size of Alameda would be roughly 63,000, assuming 4% of the population is on the psychotic spectrum or has bipolar disorder.
The Treatment Advocacy Center estimates that a county like Alameda, with a population of 1.6 million, would need a minimum of 1000 beds. The California Hospital Association estimates our county needs a total of 824 beds, more than twice the 256 or so we have now. Since 1995 we have seen a drop by over 20% of our psychiatric beds in California. Again, from the California Hospital Association.
Current commitment criteria make it nearly impossible to be admitted involuntarily to a hospital for inpatient care. Families must watch loved ones who are non-violent decompensate to the point of being unable to care for themselves.
And, I'll add, often devolve into violence.
So how did we get here?
I'm going to start with WWII when conscientious objectors were sent to work in the huge mental institutions of the day. The conditions they saw and documented there, were horrid. I refer you to a Life Magazine expose titled "Bedlam - 1946".
The conditions were horrifying, but no more so than what we see on our streets today. And the conditions for our folks in prison are medieval. (“Crazy” by Pete Early)
Following these revelations a number of things happened in the 1950's and 60's.
We saw the introduction of the first antipsychotics with high hopes that those with SMI could now live successfully on their own.
Kennedy proposed emptying the hospitals and replacing them with what he called Community Mental Health Centers, which, as we know, were never funded properly and which concentrated on counseling and psychotherapy and NOT taking responsibility for those leaving the hospitals.
There developed a counter argument that doubted the existence of MI, an anti-psychiatry movement that exists today, and a patient's rights movement.
And, last but not least, when we got federal Medicare and Medicaid in the 60's, we also got the IMD Exclusion: THE Institute of Mental Disease exclusion. This means the federal government will not reimburse states for the costs of psychiatric hospitals with more than 16 beds, but WILL help with costs if they go instead, to a residential facility.
All of this has resulted in a decrease by 97% of locked hospital beds since 1955.
We do not want to return to the conditions of the ‘40s. We do not want patient rights to be eliminated. But, as we often hear said, the pendulum has swung too far in the other direction.
Hospitalization is sometimes in the best interest of the patient and we have nowhere near the beds necessary to meet the need.
I work in IHOT. I see this daily. We cannot even get help for those living incoherently on the streets with stinking, festering sores. If they will not voluntarily get on a stretcher, we must leave them. We, families, call this "the right to die on the streets with your rights on."
Why do we need locked psychiatric beds?
Let me start by addressing a confusion about JG (John George) that I think is out there, between PES (psych emergency services), and being in the hospital of JG. People are first brought to PES where they can wait for days for a bed to open up in the hospital or be discharged. Only 2 or 3 out of every 20 people 5150'd to JG actually go from PES into the hospital. A lot of the horror stories that we hear about JG stem from time spent in PES.
A basic definition of severe mental illness is “serious functional impairment” and commonly refers to psychotic disorders - schizophrenia, schizo-affective disorder, bipolar disorder and major depression with psychotic features. The vast majority of people in Villa Fairmont (one of our sub-acute facilities) are there with psychosis.
About 50% of those on the psychotic spectrum also suffer from anosognosia. This is where the illness itself deprives the person of the insight to know they have an illness. It's what makes these brain illnesses so evil, so hard to treat. That and the side effects of antipsychotic medications, make it very difficult for folks to stay on medication. Medication does not cure, but it can significantly reduce the symptoms making possible a life more to the person's choosing.
Those of us who are providers are frustrated and dismayed by our inability to anywhere near adequately address the pain that our clients and their families are in. We just don't have the beds. The wait time in JG for a bed at Villa Fairmont is at least 8 weeks now, and given the pressure on JG to treat those showing up in PES, it just ain't gonna happen. This is where cycling through the system is born. The revolving door. This and lack of truly supportive housing and services when they leave.
I find this particularly tragic when it comes to young people facing these brain illnesses. Each inadequately treated psychotic episode is likely to deepen the illness.
We give a lot of lip service to early intervention but without locked beds, when necessary, we're not providing it. Our system runs as a "fail up". Fail again and again until you become such a burden to the system that you may be given more attention. If it's available.
And what about the danger to the families? I believe it's safe to say that around 50% of those with SMI live at home, cared for by untrained, unpaid and bewildered, terrified families. One of the first questions I ask families I work with is "do you lock your bedroom door at night?" an indication of how frightened they are. In the last year I have assisted several families in getting restraining orders for their loved ones who live with them. This is what the police say to do. They can't/won't 5150 them and therefore force families to criminalize their sons and daughters. Just imagine the underlying desperation that would drive a parent to do this.
I have a dear friend whose son, diagnosed with schizo-affective, slit her throat and stabbed her 26 times. She knows now the unspeakable delusion he was experiencing. She hopes that after his years now spent in Santa Rita he may finally go to Napa for treatment. But there are no beds for him at Napa.
Within the stories I'd like to tell, but don't have the time for, are embedded the intersection of race and the treatment of SMI. And poverty and SMI. The inability to pay for private care. The threat to housing security for the families posed by the psychotic behavior of their loved ones. (I work with many folks on section 8 and they feel so vulnerable.) The stress in the communities that folks are returned to. The drugs, the HOMELESSNESS when families are no longer able to cope or have no homes themselves. The restraining orders when what they need is treatment. All of this contributes to the cycle of incarceration.
How does our support for more locked beds further the goals of DAC?
By adequately treating folks, truly stabilizing them on medication, taking the time to find the medication that suits them the best, the group/peer therapy they should receive, cognitive behavioral therapy, whatever therapies will best help folks, we can reduce the number of hospitalizations and incarcerations. By far most of the folks we work with will not make use of the voluntary services the county has been focusing on. They leave the two week voluntary step down facilities, often not even entering the front door. They need Villa Fairmont - they get the street.
We agree with what DAC calls for. We need more full service partnerships and wrap around services. We need more Wellness Centers, more therapists (the wait time now is LONG if you can even get a call back). We need more re-entry programs. We need more crisis response teams with first responders NOT being the police. We need these teams to work at night and on the weekend. And we need more supported housing and licensed board and cares!! But without sufficient involuntary treatment beds we'd be building a two legged stool. We need community services, housing AND locked beds.
They need Villa Fairmont - they get the street.
I'd like to end with two stories:
A young black man living with his mother in east Oakland on section 8 housing has become dangerous to her and threatens their housing. We try, unsuccessfully, to get him 5150'd. We either can't or he's released too soon. Finally, he is sent to Villa Fairmont for 9 months. Now, for the last two and a half years he has been living successfully at home, enjoying time with his mother and usually able to get himself to his medical and psychiatric appointments.
A man in his sixties has been living on the streets for decades and rejecting offers of services. He's lost touch with all family and is living in a delusionary world. Finally he's hospitalized long enough to be stabilized on medication and we can work with him. When I introduce him to a case manager, this CM asks him, “What can I do for you, what would you like?" And he replies, "I want my life back. I want my lifeback!"
As of today he's housed and calls me periodically.
