Two quick updates, and I'm putting these at the top because they are important.
I wrote a line below that inadvertently denigrates those with learning disabilities. I apologize. Rather than edit the line, I'm issuing a mea culpa. It was poorly stated and offensive. I mistakenly attempted to draw a contrast between those who are mentally capable of making decisions for themselves and a class of people who cannot. I do not have enough experience or information to make that distinction in relation to those with learning disabilities. I apologize.
Secondly, I am aware that what I have written about below, while attempting to implement an ideal, is not either implemented in an ideal way or even all that common. Too many community-based systems come nowhere near this due to many factors. I still believe that empowerment and comprehensive treatment and rehabilitation is far superior to institutionalization. There are better ways, and patient-directed and oriented ways, that I try to present below as generally successful where they are implemented.
Thank you for reading.
Mental illness effects 1 in 4 of every adult across every demographic divide. Race, gender, age, economic status, none of that matters. Like many other indiscriminate diseases, mental illness doesn't care if you are rich, poor, white, black, male or female. The illnesses in question range from anxiety and depression to bipolar and schizophrenia, with a smattering of more complicated disorders.
There has been some recent interest in how to treat the mentally ill in this country. Some of that has focused on hospitalization, and how the paradigm for treatment of mental illness has moved away from warehousing people in institutions. For some reason, a lot of people feel that this is a bad thing. It is not.
Mentally ill persons are human beings. They are not mentally retarded. Like all other factors mental illness ignores, it can strike anyone of any level of intelligence. Mentally ill persons have every right and ability to decide for themselves how to live a normal, productive life, but like any given physical disability, severe mental illness limits those choices and often needs outside support.
Please journey with be below to learn more about the mentally ill community, what it is, what it does, and what it needs. Here's a foreshadowing of what is to come: they don't need any of you to tell them what is best for them.
My own journey with mental illness started long ago. I clearly remember the moment, when I was 14 years old: I was taking a shower, and inexplicably and suddenly, I started to think about ways to kill myself. Being the introspective sort, I was more than curious about the meta: its a weird sort of thinking to think about something, but think even more about the why of the thoughts than the thoughts themselves. Anyway, I realized then my depression. The details aren't important, but over the years I ended up dropping out of school, getting my GED instead and failing miserably at college. My life was screwed up to the point where I was no longer functional. I survived thanks entirely to the help of my father who had fought his own battles with depression during and after divorcing my mother.
My father got me into counselling. The psychiatrist I met with reached out to his contacts in the psychiatric rehabilitation field. That is where I became involved with this invisible community of the severely mentally ill who were, by all accounts, living normal well-adjusted lives.
De-institutionalization of the mentally ill started in the 60s and 70s, driven by three primary factors: a movement for community-based mental health services, availability of psychotropic medication, and financial pressures related to maintaining long-term institutions. To be fair, the result has been a bit of a mixed bag. While of a general benefit to mainstreaming and integrating the mentally ill into society, many have been left homeless and without care.
The benefit not obviously stated, however, is that the mentally ill themselves, now functioning members of society when well-treated, are able to advocate on their own behalf. Not much is mentioned about this in the linked Wikipedia article, but if you want to know more, check out NAMI - National Alliance on Mental Illness.
Due to de-institutionalization and the Community Mental Health Act signed by President John F. Kennedy, the medical and psychiatric community were, essentially, forced to find new solutions to treating the mentally ill. Beyond basic medical treatment and conventional psychotherapy, new models of psycho-social treatment have been developed and improved upon over the last few decades.
The basic concept of Psychiatric Rehabilitation is that by helping mentally ill patients reintegrate socially into their communities, a patient can "recover" from mental illness. Psychiatric rehabilitation rejects the idea that the mentally ill are permanently disabled and encourages the idea that mentally ill persons can function as productive members of society with the proper support. Along these lines, Boston University's Rehabilitation Research and Training Center on Psychiatric Rehabilitation has been the leading institution on changing the models of psychiatric practice from reactionary symptomatic treatment to proactive rehabilitation.
Why Not Institutionalization?
Forcibly committing mentally ill persons into a hospital environment is no longer necessary. Short-term hospitalization has its uses in the same way short-term hospitalization of medical problems does: to stabilize the life-threatening condition. That condition can then be treated post-discharge with proper support and medication.
Hospitalization is expensive. One of the drivers of de-institutionalization was the cost which was, at the time, absorbed almost entirely by state in the U.S. Reasonably, when those costs began to shift to the federal government, the federal government responded by finding ways to decrease those costs. Community mental heath services was the solution.
Mentally ill people aren't "insane," they are disabled. When you break a leg, you are disabled. A lot of broken legs require rehabilitation once the leg heals to get the leg back to full function. It is now recognized that mental health disabilities aren't all that different. Rehabilitation can build up skills that people need just as physical rehabilitation can build up the muscles that have atrophied.
There is no justification for forcibly institutionalizing mentally ill people. Mental health law generally specifies three conditions for forced hospitalization: suicidal ideation, homicidal ideation, and attempt at self-harm. Medically, the only condition that can force hospitalization is altered mental status - a person who is fully alert and aware of who they are, where they are and when they are cannot be forced to do anything against their will. There are times those conditions for forced hospitalization are met for the mentally ill, but once those conditions are stabilized, there is no longer an ethical, medical or legal reason to hold them against their will. It is simply unethical and immoral to do so.
What happens after discharge?
The answer to that depends, unfortunately, on a state-by-state basis. My experiences are with New York State which has a number of really good, really progressive policies and grassroots organizations such as NYAPRS.
At the very bottom, where a person is entirely disabled by their mental illness, that person will collect SSI - disability insurance provided by social security. They will also be eligible for Section 8, subsidized housing, medicaid, and SNAP. Some classes of the disabled will also be eligible for medicare. This meets some of the criteria that Boston University has identified as crucial supports for the mentally ill, but by no means not all.
A smaller class of the mentally ill disabled population are not eligible for all of those benefits. The most important of those benefits is medicaid coverage which is restricted to income levels. One of the advocacy objectives of mental health organizations has been a push at the state level to allow a medicaid buy in, where a person could pay a premium for medicaid on a sliding scale based on their income. This, to my knowledge, has never happened. Currently, medicaid is based on a spend down: the entirety of one's assets are considered in determining eligibility. That means if, for example, you own land, the value of that land is considered in your application. You are forced to sell that land, then exhaust the money from that sale, then you may be eligible for medicaid.
For all you progressives out there, this is a great point of alliance you can have with the mental health community: states are well within their rights in medicaid law to enact buy in legislation for medicaid. That is the closest you are going to get to a public option under current law: yeah, you'll have to pay a premium based on your income level, but if the law excludes assets, it would be cheap compared to any private insurer on your state's ACA exchange. Forget medicare for all, push for medicaid buy-in.
So what does that health insurance pay for? It pays for rehabilitation. It pays to help mentally ill people recover from their illness. It helps to define what recovery really means, and that depends a lot on what illness a person has and the severity of it.
The dominant paradigms that drive mental healthcare are: single point of entry, and continuity of care.
Single point of entry is a pretty simple concept. It simply means when one is experiencing a psychiatric emergency or crisis, there is a standard place to go. One admits herself or is committed to a Comprehensive Psychiatric Emergency Program, or CPEP. This is essentially an emergency room for psychiatric patients that usually holds patients for 24 hours to three days. Depending on the specific circumstances, a person may be discharged once stabilized, or transferred to a longer-term ward or facility for further care.
Its important to note CPEP is a regional program. Your mileage will vary depending on where you live and what psychiatric services are available and whether single point of entry is even a part of the comprehensive psychiatric care system in your area.
The much more important part is continuity of care, specifically what happens post-discharge. Again, it depends on one's individual diagnosis and prognosis what happens then, but I'll describe the overall arc of how the severely mentally ill move from hospitalized to independent. Note that nothing that follows guarantees that an individual won't relapse and require further hospitalization but, with persistence and support, there is no reason a mentally ill person cannot fully recover to the point they can reintegrate into society.
Immediate post-discharge most often will move a person into a halfway house or group home for the mentally ill. These include professional staff to ensure one follows their treatment plan and takes their medications. Think of this like intensive rehabilitation in a nursing home - they are not permanent residents here, but still need the close attention and support medically trained persons. Actual rehabilitative efforts do begin here as residents are generally responsible for their own living area and, in group homes, given responsibilities to maintain the home such as cooking and cleaning.
After moving on from here, there are programs of supported living where persons are placed into independent homes (individually or with a roommate living in an apartment). There are then regular visits by mental health professionals to the home. The goal is increased independence. Medication is no longer given out, for example, but held by and taken by the individual as prescribed. Much of the focus at this point is simple living skills: maintaining a living space, maintaining physical and mental health, and doing so independently but with support.
Eventually, an individual will be encouraged to move into a completely independent living situation.
During this entire time, intensive psychiatric rehabilitation would ideally be underway in order to give the mentally ill person every chance to succeed and thrive.
What is mental illness rehabilitation?
Quite simply, it means a person who is mentally ill can function in free society.
That means no institutionalization. Depending on the illness and its severity, it can mean complete re-integration including employment, but it could also mean the more severely ill are supported by disability programs. In no case is the possibility for improvement abandoned. In no case is putting persons with mental illness into forced hospitalization a goal. That is a situation to be prevented and avoided. We can do better and de-institutionalization and community care were implemented in recognition of the fact that we can to better.
The clubhouse model of rehabilitation of mental illness is one fairly popular program. These are member-directed day programs, but different from day programs in that the staff are not psychiatrists or therapists. It is a physical place and a social place to which the members (and they are members, not patients) belong and contribute to. The staff exist simply to provide a structured environment in which the members operate. Every function necessary to maintaining the club are done by the members themselves.
One of the functions of the clubhouse you may not guess at is political advocacy. Mentally ill people are just as involved in politics as any of us here at Daily Kos, though their interests are of course very specific. Primarily the focus is on parity, which aims to get legislation that treats mental illness in an equivalent way to physical illness in insurance and disability matters. Another important matter, as noted before, is the Medicaid buy-in option, which would allow one to be employed without risking losing their medical coverage. For the mentally ill, the underlying issue is most likely to be chronic, so continued support of psychiatry, medication and counselling is paramount in order for that person to be successfully employed.
Members of the clubhouse are encouraged and indeed do participate in the direction of their own care. I was a member of a clubhouse in 2001, and one of a number of our members selected to travel to the catskills on September 11th for a NYAPRS conference. As you can imagine, the news on the van's radio that day was extremely traumatic. The other members attending had their moments, especially during an improvised prayer session at the conference that offended some, but what struck me most was how everyone was able to focus on the reason they were there: mentally ill people themselves attending workshops on psychiatric rehabilitation that were intended for professionals, but giving their own input on the programs presented, and learning from the presentations to assist their friends who could not attend.
Psychiatric rehabilitation generally defined is a psycho-social (as opposed to medical) form of treatment. A portion of that of course includes medical and professional treatment of the underlying conditions, but rehabilitation focuses on social, economic and living issues. It is generally directed not by psychiatric or medical professionals.
There are eight specific areas of focus in psychiatric rehabilitation. IPRT, or Intensive Psychiatric Rehabilitation Treatment, is one such program that attempts to implement the overall goals of mental illness rehabilitation. Sorry I do not have a link, all the information I could find is behind paywalls, but I will describe what I know from my experience with it.
IPRT is "consumer-driven." I'll say right away I hate that term, but it is meant to indicate that the program is tailored to the wants and needs of the people that use it. IPRT provides small-group focused education on specific areas of need. The main areas IPRT focuses on are psychiatric, vocational, social, and living.
The eight generalized areas psychiatric rehabilitation means to provide for, with detail as necessary, are as follows:
Psychiatric: Focuses on symptom management and coping mechanisms. Teaches individuals how to recognize their symptoms as they are happening and what to do to ameliorate the psychological, social and somatic effects.
Social: Assists in creating or maintaining healthy relationships with family, friends. Trains persons in recognition and respect for boundaries. Improves communication skills with others. Helps involvement with community, as desired.
Vocational/Educational: Tracking individuals into vocational or educational programs. This may include advocacy necessary for the individual for accommodations within those programs.
Basic living skills: personal hygiene, providing one's self with appropriate nutrition, ensuring safety (including feeling safe), and identifying chores with a normal routine.
Financial: managing a budget (often a fixed budget with SSI and SNAP)
Community/Legal: Provision and access to resources to help secure necessary accommodations for the individual's disability.
Health/Medical: Secure the continuity of care necessary for full rehabilitation.
Housing: Safe and secure living accommodations, preventing most of all homelessness, but also giving individuals a safe "home base," a place that they own and feel secure within.
Putting all that into bullet-point list of eight items might seem a bit weird to a normally functioning person, so many of them are just a given. Who thinks about hygiene, for example? That's just something you do... unless you are mentally ill. How many of us need a Social Security lawyer? I know some of the physically disabled about here know the answer to that.
Psychiatric rehabilitation aims to identify the specific needs of the mentally ill and provide for those needs, and to do so with the knowledge and support of the mentally ill themselves. Psychiatric care does not exist to meet the needs of society as a whole, it does not seek to bury the problem in the sand as advocates of institutionalization would have us do. Psychiatry is about health of the person, and that person is just as capable of deciding their own fate as you are at deciding your own.
I would urge progressives to try, in any way they can, to make allies with the mental health community. So many of our and their (our mine and your) issues align. Mental health issues and progressive issues share a lot of the same ideas, yet some of the solutions are unique and incredibly progressive in character. Don't discount this potential ally and don't dismiss them because of their disability. They aren't stupid.
They can decide for themselves. Don't you forget it.