Across the United States, there are various support programs, for people with mental illness.  The key of course, is getting the mentally ill person motivated and accepting of those services.  With some of the most serious mental illnesses, such as schizophrenia, lack of insight  may undermine a person’s ability to make good decisions or even recognize they have an illness and need support and redirection.

As well, some folks know they have an illness and may even admit on a good day that they could use professional help, but they still lack the ability to commit to programs which require that they do things they just don’t want to do.  One of the biggest challenges to the seriously mentally ill are the programs requiring sobriety or drug-testing.  That said, there are many government programs which do not absolutely require that kind of commitment.  The therapists and case managers will engage with “the client” even during active substance abuse.

In the case of California’s FSP and AOT programs, the social workers will even meet with people who are homeless if they know where they can reliably find them. These programs are voluntary, however, and often a person who needs these services the most will decline them. This is the state of our country right now and will probably remain so for a while longer. It’s been this way for decades, where the laws and  those claiming to defend the civil rights of the mentally ill have a “lack of insight” on their own part. They refuse to acknowledge that some people need involuntary treatment.

It’s been a few years since our family was at the mercy of the government-sponsored mental healthcare programs in Los Angeles County, but my memories are vivid, emblazoned into my consciousness forever: those who tried to help my son when he was in his most wretched state and those who turned their backs on him as well.

If someone has Medicaid or Medi-Cal, they can take advantage of the FSP or AOT programs, although they don’t exist in every community.  FSP stands for Full Service Partnership. It’s very possible FSP has or will change their policies and criteria for treatment, but at the time my son signed up for FSP, a mentally ill person just needed to convey that they were not doing well in the most obvious ways, deteriorating psychologically slowly or quickly, even if they were living at home with family.  In fact, a completely different topic is whether or not a mentally ill person should live at home with their family if they are not stable or getting better.

Typically, the FSP application is submitted by a concerned family member or caretaker, on behalf of the person with SMI (serious mental illness.) A social worker will come out to visit them to see how receptive the person is to weekly meetings with a therapist, a case manager, and a monthly session with a psychiatrist. The therapeutic team works with the client and creates a treatment plan that is hopefully appropriate for the person and their needs.  For some, there is an urgent need to find the SMI person housing or to get them stabilized on medication. For others, they may assist in transportation to important appointments, find the client work, or social outlets.  With my own son, he signed up with FSP only because I had run out of housing options for him, after so many evictions from the state licensed Board and Cares.  The FSP team thought my son might do better in an environment with higher functioning people. They placed him in a Sober Living House for ex-cons, but that only worked temporarily.  Another housing option the FSP team came up turned out to be even less therapeutic.

On the surface, it seemed at the time that a Dual Diagnosis residence would be a good fit, since my son also had secondary substance abuse issues exacerbating his schizophrenia.    Ironically, that was not a well-supervised program and the House Manager was a young man, court-ordered to do that kind of “volunteer” work, only sober himself for a couple of years. He was ill-equipped to handle my son’s serious mental illness. It was eviction from that program which spiraled him into homelessness.  To the point: there is just so much any FSP program can do for a person with SMI, based partly on whatever other support services are available in that “service region.”

At the time, there was a long wait list to get into the program and they were understaffed from the get-go.  One memorable moment came when my son’s FSP therapist was unavailable for my son when he was being forced into homelessness. She chose to prioritize a distraught pre-teen whose father had been killed that week.

One of the problems with the well-intentioned FSP program, is that when they do help a person achieve success and a higher level of functionality and stability, the team then tapers off the program, visiting the client less frequently, from weekly to monthly and then termination.  This might be as short-sighted as trying to reduce a diabetic’s insulin when they need to stay on it for life. This is not to say that every person with SMI needs this kind of support indefinitely, although many do.

The AOT program (stands for Assisted Outpatient Treatment) is similar to the FSP program in that the willing participant receives a therapist, a case manager, and a psychiatrist to work with.  However, the bar is set higher in order to qualify for AOT.  At the time we applied for AOT, they also had a tortuous waiting list. A person could literally die while waiting to get this form of semi-emergency care. In our case, I made some vital phone calls and literally got the ear and sympathy of the then-Director of the L.A. County Department of Mental Health.  He was known as a “hero” within the inner circle of mental health family advocates, able to cut through the red tape and make things happen much more quickly.

We were on a two-month waiting list with AOT, but Dr. Shaner made a phone call on my son’s behalf and outreach began three days later. I should clarify that Dr. Shaner was not just granting favors and access on a whim; once he heard my son’s whole decade-long mental health history, he actually thought that he should be hospitalized in an IMD.  However, again, laws being what they are: a person with SMI has to prove in some very dramatic ways that they are chronically a danger to self and others before they can get the higher level of care. The AOT staff are capable of authorizing the “5150” 72-hour psychiatric hold, if need be.

This initial 72-hour hold occasionally transfers the patient to an IMD (Institute of Mental Disease). In 2016, when my son was last hospitalized, the average “wait time” to get into an IMD was roughly one year!  This means the initial hospital where admitted just baby-sits the person waiting for the IMD to have an opening. This is why the vast majority of SMI people are discharged from hospitals after the 72-hour hold and before they are actually stable. There is no money to be made for the hospital, just keeping the person in a “holding tank” while waiting for a higher level of care.

A person with SMI who qualifies for AOT outreach has to be in worse shape than the typical FSP participant.  They have to have had recent hospitalization(s) and non-compliance to medication. There were other requirements, such as recent incarceration if not hospitalization, and an unwillingness to engage with FSP.  The AOT client is in more dire circumstances than even the FSP client.

One of the blessings of the AOT program is that they will follow up with and continue to meet with a person who is not immediately open to treatment.  Instead of just turning their backs on someone who declines treatment on the first meeting, they will re-visit the person several more times over a period of months to see if the person will change their mind.  In other words, they don’t give up on the person so easily.  The first few meetings may in fact just demonstrate their willingness to befriend the person with SMI and help them get things they urgently need or want, whether it is food, cigarettes, or clothing. With my son, they initially tried to garner trust and friendship by buying him a radio and some art supplies.

The AOT program has one other tool in their tool kit, which the FSP program does not. If the AOT team feels like they absolutely cannot abandon someone who most obviously needs care, they can obtain a judge’s court order for treatment, which is presented to the person with mental illness.  If the person with SMI is naïve enough, they may actually believe that they must comply. In reality, there are no legal repercussions for a person not submitting to the mental health court-order.  If a person with SMI thinks they may actually go to jail for “violating” the court order, it is a way to get them to comply and finally get the help they need.  Of course, there will be those individuals not afraid to deal with the consequences or they may even know that the court-order has no teeth.  Surprisingly, I was told by one judge that they get about a pretty good compliance rate when the court-order is delivered. They call this well-meaning scare tactic, “the Black Robe” effect.

Kartar Diamond is a mental health advocate and author of Noah’s Schizophrenia: A Mother’s Search for Truth.