Service system lacks insight into ill person's lack of insight

By Jim Reiser

Anosognosia (“anasugNOHZeeah”) or lack of awareness of one’s mental illness is another biologically based symptom like hallucinations or delusions.  Once we acknowledge this, a realistic strategy for coping becomes apparent.  Implications for family members are favorable.

Sadly, the mental health service system has not demonstrated an understanding of this symptom in most of its programs.  Individuals suffering from anosognosia are frequently homeless, incarcerated, noncompliant, violent, refuse treatment, and they are often caught in the revolving door of a fragmented mental health system and become candidates for Kendra’s Law.

How are programs meeting the needs of those who have no awareness they are ill?  Apparently they are not.  In fact, Kendra’s Law can be seen as the frustrated public reaction to the failure of the system to meet these needs.  We end up in court because the mental health service system has proven unable to help these people.

Ill person not engaged

Newer “progressive” programs frequently fail to meaningfully help individuals suffering from anogsognosia.  For example, peer programs, which present a wonderful development in the field, do not meet the needs of the “unaware” because these programs do not engage them.  The programs assume in their design that the peer candidate has an understanding of their illness.  Otherwise the person would not meet the criteria of peer.  The philosophy of this service orientation is based on engaging the “motivated consumer.”  The success of this program is linked to the voluntary and active involvement of the consumer.  But what about those “consumers” who are not motivated because they are unaware they are consumers?  The 40-50% of the chronically mentally ill suffering from anosognosia are by definition not part of the peer movement and therefore not served by peer-directed programming.

While these more progressive programs fail the unaware, the other end of the spectrum is also flawed.  The Treatment Advocacy Center’s approach promotes the medical model to such a degree that it gets in the way of engaging the unaware individual.  During TAC director Dr. E. Fuller Torrey’s Q&A at NAME’s September general meeting he said, “there are only patients and not clients.”  This frame of reference eliminates the common ground for engaging the unaware into a productive relationship.

Collaborate, don’t lecture

I know from a long history of coping with my brother’s illness that if I were still thinking of him only in this medical frame, he would not be doing as well as he is right now.  Only after I acknowledged that I need to collaborate with him rather than lecture him about treatment did I “get” him to receive treatment.  It was only after I started practicing the “LEAP” strategy outlined in Dr. Xavier Amador’s book, I’m Not Sick, I Don’t Need Help: Helping the Severely Mentally Ill Accept Treatment, that we moved ahead.  If we still conceive of our loved ones only as patients, I contend we can’t even start to “Listen & Empathize,” or be anywhere near on our way to “Agreeing” on anything.

While most community programs fail those with anosognosia, there are signs of hope.  One of these is Pathways to Housing, an eight-year-old program in the city that intentionally separates housing from treatment.  Sam Tsemberis, Ph.D., Executive Director, explained that separating the clinical from housing was the key to not only engaging the homeless mentally ill but also keeping them in the program.  Most other community housing programs require candidates to be “housing ready,” i.e. already compliant regarding chemical dependencies on the one hand and medical treatment on the other.  Pathways does not require this.  The program is succeeding with those who are unaware because it offers something up front that is perhaps most meaningful to them: personal housing.  The only requirements are that the individuals must visit with a coordinator at least twice a month, and work with the coordinator in managing the individual’s money.  There are no other requirements, no MICA or medical treatment requirements, nothing.

Listening and empathizing

This program has, in effect, adopted the LEAP strategy because it starts by listening and empathizing with the client.  Pathways partners with the client after getting the client to agree with some fairly easy and straightforward requirements.  Eventually most clients engage the coordinators so that the number of visits increases.  This active relationship works to encourage and engage the client and encourages treatment.

As we all know in working with mental illness, this program still faces the realities of psychotic breaks and “non-compliant” behavior, but Pathways holds the apartment for the individuals while he is in hospital treatment.  The one statistic that jumps out here is that Pathways to Housing has a retention rate of 85%!  This is incredible given the treatment-resistant homeless population it serves.