A Baffled Look

The straight dope on mental health

Month: October, 2012

Consumer or Survivor?

The History and Fragmentation of the Mental Health Consumer and Psychiatric Survivor Movements

Part 2

An examination of the differences between the mental health consumer and psychiatric survivors’ movements would not be complete without an exploration of the history of U.S. mental health policy. Last week, I briefly covered the colonial era. This week I’ll go into the history of asylums.

In 1773 the first public hospital serving the mentally ill opened in Williamsburg, Virginia. According to the text written by Amanda Smith Barusch (2006), Foundations of Social Policy, the growth of cities brought on the establishment of facilities for the mentally ill. Those who could afford it went to hospitals. The indigent went to almshouses (p.217). During the second half of the eighteenth century, public hospitals for the insane abounded. An approach called moral treatment prevailed. It was based on a structured regimen and the physician had complete control (Barusch, 2006, p.218). It was high-quality care that the public institutions could not usually afford.

Another driving force in the opening of asylums throughout the U.S. was Dorothea Dix. Appalled at the treatment of the mentally ill in jails and almshouses, she crusaded for the protection of the mentally ill from certain “predatory” forces in society (Barusch, 2006, pp.218-219). After her death, the expansion of asylums continued until 1955. Barusch (2006) explains:

Ironically, this growth destroyed the very feature that inspired it: the promise of a cure for insanity. Moral therapy and similar approaches were costly and could not be sustained in over-populated, underfunded institutions. The gap between the reality of life in asylums and the promise of effective treatment widened, even as institutional populations grew. Cures were not unheard of, but over time, intractable cases of chronic mental illness came to dominate the asylum population (p. 219).

In 1909, the National Committee for Mental Hygiene was founded “to promote the prevention of mental disorders, arguing that prevention is both easier and less expensive than treatment” (Barusch, 2006, p.220). This is the beginning of community psychiatry. Unfortunately, this movement was not based on research, but came out of the public health movement of the same time (Barusch, 2006, pp.220-221).

By the end of World War Two, the public grew more aware of the problems of quality of care in asylums. The National Mental Health Act of 1946 shifted care for the mentally ill to communities. This act had three goals: “to support research on psychiatric disorders, to train mental health personnel through fellowships and grants, and to provide grants to states to establish clinics and demonstration programs” (Barusch, 2006, p.222). This eventually caused a discharge of thousands of patients from public psychiatric facilities and onto the streets. The development of antipsychotic agents and antidepressants also fueled the discharge of patients. In 1963, the Mental Retardation and Community Mental Health Center Construction Act provided a three year grant of $150 million towards the construction of community mental health centers (Barusch, 2006, p.223). This may sound like a good start, but in reality limited funding was available to build or maintain these community mental health centers. A lot of former asylum patients wound up on the streets and without care.

Next week I’ll go into the birth of the psychiatric survivor and mental health consumers’ movements.

Reference:

Barusch, A.S. (2006). Mental Illness. Foundations of Social Policy, 2nd Ed. (pp. 210-237). Belmont, CA: Thompson.

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Consumer or Survivor? Part 1

Consumer or Survivor? The History and Fragmentation of the Mental Health Consumer and Psychiatric Survivor Movements

Part 1

An examination of the last three and a half decades of the history of the United States’ social policy concerning mental illness would not be complete without considering the contributions of mental health consumers and psychiatric survivors. It’s important to know about the history about how mentally ill people were treated in the US to understand how they are treated now. Bear with me. It’s a long story.

I refer to both consumers and survivors because these labels reflect areas of disagreement and conflict among psychiatric activists. Indeed, these are two separate movements now because the consumers and the survivors disagree over the role of medication and involuntary treatment. In spite of these striking differences, there is a consensus that exists according to Nancy Tomes (2006) in her article, “The Patient As A Policy Factor: A Historical Case Study Of The Consumer/Survivor Movement In Mental Health.” Both movements agree that the most important principle of treatment is self-determination. This idea is essential for long term recovery (p.728). Perhaps the priorities that the movements have in common will eventually overcome the present fragmentation in approaches to mental health social policy, but I doubt that will happen, though, because of the fundamental shifts that occurred early in each of the movements.

I have to go into the history of US mental health policy in in order to make sense of why these two movements exist. The history of the social policies concerning mental illness reveal many well-intentioned interventions gone awry as well as institutionalized prejudice against the poor and the mentally ill. As the following posts will show, the newest treatments and most support often went to patients with economic resources.

During colonial times people with mental illness were the responsibility of their families (Grob, 1994, p.6). According to Gerald N. Grob (1994) in his book, The Mad Among Us, the number of mentally ill persons with resulting behavioral problems caused the 1676 legislature of Massachusetts to order the selectmen to care for the mentally ill (p.7). Grob (1994) states that a statute in 1694 made mentally ill persons without family the responsibility of the community. If the mentally ill individual was indigent the town assumed responsibility for them (p.7). Other colonies followed suit. Grob (1994) points out that none of these laws referred the mentally ill to medical treatment; these laws only emphasized social and economic consequences of mental illness (p.7). The right to treatment was not considered (Barusch, 2006, p.217).

Next week I’ll go into the history of asylums.

References

Tomes, N. (2006). The Patient As A Policy Factor: A Historical Case Study Of The Consumer/Survivor Movement In Mental Health. Health Affairs, 25, no.3, 720-729. Retrieved October 27, 2006, from Lexus Nexus Academic database.

Grob, G. N. (1994). The Mad Among Us: A History Of The Care Of America’s Mentally Ill. Cambridge, MA: Harvard University Press.

Barusch, A.S. (2006). Mental Illness. In Foundations of Social Policy, 2nd Ed. (pp. 210-237). Belmont, CA: Thompson.

A lesson about antipsychiatry

I joined MindFreedom International for a short time years ago. MindFreedom has an antipsychiatry agenda.  I think most people who have a psychiatric diagnosis look into antipsychiatry. It’s natural. No one likes the thought of having a chronic, stigmatizing condition. But it’s silly to think that the brain doesn’t get sick & there isn’t “proof” that mental illness exists. There is no “proof” for Parkinson’s either. Do they deny that Parkinson’s exists? That doesn’t mean researchers won’t find “proof” in the future. Neuroscience is in its infancy.

MindFreedom calls mental illness a “creative maladjustment.” They seem to think that by changing the term from “mental illness” to “creative maladjustment” will change the reality of mental illness. Dr. E. Fuller Torrey pointed out that there is a giant, informal experiment going on that shows what happens to severely mentally ill people who don’t take psychotropic medications. They wind up homeless or in jail.

MindFreedom’s site features hand-picked research to further their cause. Recently their homepage cited a study that shows a correlation between antipsychotic medication & loss of brain volume. Correlation is NOT causation. There are other studies showing a loss of brain matter in untreated schizophrenia.

I was reading a site called Involuntary Transformation and the statements that came out of the Highlander Conference, which advocates abolishing the institution of psychiatry. It’s very contradictory. They want to abolish psychiatry, but say they support people who choose to take psychiatric medicines. Ending the institution of psychiatry will deprive me of my choice to seek professional help. They also want individuals who belong to their organization to claim disability so they can get help from the government. They can’t have it both ways. MindFreedom doesn’t come out and say on their website that they want to abolish psychiatry. I suppose this is because they want government grants. But guess who signed the Highlander statement? David Oaks, the executive director of MindFreedom.  His organization refuses to believe that psychiatric medicines help. They say that people having trouble after getting off psychiatric medication are experiencing withdrawal. But they don’t seem to think this can happen with other drugs. I don’t believe it. It’s not rational. If psychiatric drugs don’t help then why would withdrawal cause problems? Isn’t that saying that the drugs work? They state that we’re experiencing a crisis of psychiatric oppression. We’re not. Mental health services for poor people are dwindling because they don’t get enough funding. I think they will give politicians reason to deny poor people treatment. I noticed several therapists signed the Highlander statements because they probably resent the business that psychiatrists get.

Another person who signed the Highlander statement was Daniel Fisher, MD, a psychiatrist and executive director of the National Empowerment Center. In an interview he claims people who have recovered from mental illness who still have psychotic symptoms “are no longer symptoms of mental illness.” He also says mental illness is a temporary disruption in life. He claims that it’s more difficult to recover once someone is labeled mentally ill. This last statement is difficult to prove. How can you quantify this? All these websites have personal stories, but that’s anecdotal. I believe that some people do recover, but my bet is that they’re in the minority.

 

http://www.mindfreedom.org/

http://involuntarytransformation.blogspot.com/p/nothing-about-us-without-us-history.html

http://www.power2u.org/articles/recovery/expert_interview.html

http://www.schizophrenia.com/disease.htm

 

Affordable Treatment

It’s hard to separate advice on how to cope from political realities such as lack of access to affordable treatment.

My county mental health provider no longer treats people without insurance because of budget cuts. There is a clinic run by the local chapter of Mental Health America that treats people without insurance, but these people have to have another health condition like diabetes and even then the clinic can only treat 200 people. There’s a long waiting list. The current austerity measures will only make things worse.

Drug companies are making things worse for the uninsured. The uninsured have to pay higher costs because they don’t have an insurance company or the state to negotiate lower prices for them. I could go on and on about the drug companies, but that’s for another post.

That said, at least you can get free medicine through drug company patient assistance programs. It really helped me stay sane when I was getting my BA, but I still had to pay the doctor. You can get free samples from your doctor too. There are a few psychiatrists in my community who don’t take insurance and have a sliding scale for payment. They’re few and far between, but it’s worth looking into. Call your local NAMI chapter or your local Mental Health America to find one.

State & federal politicians are too busy cutting taxes that fund mental health treatment and the insurance companies lobby against better treatment because it costs them more. So, if there’s less money to fund community mental providers then we need more efficiency for the funds provided for treatment, right? Community mental health providers, however, have been so underfunded that they’re stretched to the max. Peer support groups help some, but it’s no substitute for getting professional help.

There are some possibilities to get free treatment for uninsured people. Back when I was in college I was hospitalized and had a huge bill. I looked into getting the bill forgiven. I asked the billing department for an application. The woman I talked to referred me to her manager because she knew nothing about it. The manager sent me a form. I filled it out, sent it in & my bill was forgiven. So if you have a huge hospital bill and you’re indigent, appeal to the hospital billing department & speak to a manager.

Another option for free or low cost hospital or health care facilities is Hill Burton facilities. Back in 1946 congress passed a law giving funds to health facilities and in return these facilities had to offer free or low cost treatment. I’ve left a link at the bottom that tells how to find one of these facilities near you. When you go there, go to the business office and ask for an Individual Notice. This will tell you about income requirements and where to go next. Ask for a Hill Burton form and be sure to bring pay stubs or some other kind of proof of income. If you are asked to apply for Medicaid or Medicare, do so. Ask for a Determination of Eligibility and how long it will be to be notified whether you qualify or not.

I wish I could offer more advice, but I can’t think of anything else right now.

Patient assistance programs:

http://www.pparx.org

Hill Burton Program:

http://www.hrsa.gov/gethealthcare/affordable/hillburton/

http://www.hrsa.gov/gethealthcare/affordable/hillburton/facilities.html