Readers of Robert Whitaker’s Anatomy of an Epidemic may know me by a description in the book as a poster child for Risperdone; 60 lbs. overweight as a result of taking meds. (I’m not much more than 50 lbs. fat, according to MetLife charts.) I was hospitalized again this summer.
This article is about my testimony at the Massachusetts State House hearings on September 10, 2013 supporting legal reform of rights of patients in mental hospitals in Massachusetts. The state Legislature’s Committee on Mental Health & Substance Abuse heard testimony on a proposed bill, House Bill #1806, guaranteeing patients in mental hospitals the right to get outside for fresh air breaks every day, and in the same bill is a proposal to put “teeth” into a weak existing law by strengthening enforcement powers to protect rights already granted people in hospitals. At the hospital this summer I saw good reasons why this bill should become law. My testimony in favor of this bill, House Bill #1806, is at the end of this article, but first, let me put this matter into context.
The existing law is called Five Fundamental Rights Act and grants five major rights to patients in programs licensed by the Massachusetts department of mental health, and a few other additional rights. Exact language of the law can be found in the Mass Chapter Laws Chapter 123 Section 23.
Below is a paraphrase of the Five Fundament Rights Act indicating what civil rights it grants:
(1) Access to a confidential telephone.
(2) Send and receive uncensored mail with stamps, and assistance, available.
(3) Visitors everyday, in private and at reasonable times.
(4) Privacy while resting, sleeping, dressing, bathing, reading, writing and toileting.
(5) Being able to contact an attorney, outside treater or clergy.
We also have these additional civil rights:
The right to wear your own clothes
The right to keep personal possessions, including toilet articles
The right to keep reasonable sums of money for small purchases
The right to access to individual storage space for his private use
The right to refuse shock treatment and lobotomy
The law says these rights must be posted in a conspicuous place on all psych units and translated for non-English speakers, and the superintendent of the hospital may deny any of these rights with just a statement of the reasons entered in the patient’s treatment record.
These rights may be unique to Massachusetts. It was hard to get them. Originally, advocates tried to pass a bill with 30 rights. The psychiatric hospital lobby and the psychiatrists’ associations opposed granting rights to mental patients in hospitals. They said it would be too expensive, and patients were too dangerous, to make it feasible. These arguments are the same ones used today against increasing rights and protecting them. The rights bill languished for eight or nine years until 1997, when two unforeseen events caused enough momentum to finally get a rights bill passed. However, to ensure the Legislature passed the bill, it was nearly gutted first.
The first major event that broke the logjam was a Boston Globe article in May, 1997. The front-page series was written by the Globe Investigative Spotlight Team about abuses of the involuntary commitment laws. The Boston Globe said mental hospitals were using the infamous “Section 12” clause authorizing emergency involuntary commitments to keep their psychiatric units full of patients at all times. In those days psychiatric units were among the most profitable at the hospitals, and the hospitals were using the state’s police powers of emergency involuntary commitment to keep them full. The Globe investigators decried that mental hospitals abused the observation period of 24-days in order to get insurance payments from involuntary patients who then had to wait this 24-days before they could get a judicial hearing to review the necessity of their emergency involuntary commitment. Mostly these were Medicare and Medicaid patients. This was one of the longest observation periods in the country. This series caused a sensation, and the leadership of the legislature was driven to look critically at the mental health code with an eye to reforming it, and so the Five Fundamental Rights bill was saved from the usual political graveyard.
The second event that broke the logjam was a protest rally by consumer/survivors around the same time, in October 1997, as the Boston Globe Spotlight series. This protest rally dramatized a study showing consumers of mental health services died an average of 19 years younger than the general public. (A more recent study says we now die 25 years younger.) Consumers carried black coffins with flowers from Boston Common, near the State House, to the Offices of Medical Assistance, which is the Medicaid office – also called MassHealth. Sponsoring the rally was a consumer-run organization called M-POWER, an acronym for Massachusetts People/Patients Organizing for Wellness, Empowerment & Rights. M-POWER still exists, although without the funding from the mental health department it had then. Journalists from the Boston Globe Spotlight Team joined the consumers’ march of protest. This protest rally is remembered at M-POWER as “The Death’s Rally,” one of a series of protests that illuminate the history of the consumer/survivor movement in Massachusetts. Besides helping the rights bill pass into law, “The Death’s Rally” also got Medicaid to fund a Leadership Academy for M-POWER’s consumer/survivors.
These two events focused attention at the State House on patients’ rights and pushed the Five Fundamental Rights Act through the Legislature. In December 1997, a Republican acting-governor, Paul Cellucci, signed the Five Fundamental Rights Act into law. A photo in M-POWER’s archives shows consumers, who had worked for years for passage of a rights bill, at the signing ceremony standing behind the governor’s desk as he signed the bill. However, the Legislature had gutted the original proposal for thirty rights. Besides eliminating most of the rights, the main thing that was taken out was enforcement powers of the mental health department. Originally, the department of mental health was to appoint, and supervise, human rights officers at the hospitals to investigate complaints of the Five Fundamental Rights. However, in practice, today, hospitals hire their own human rights officers, and these hospital employees are primarily responsible to the hospital, rather than to the consumers making the complaints. Commonly, human rights officers double as the risk management officers at the hospitals, mainly to protect hospitals from being sued.
I want to write later about my hospitalization this summer, and how violating the Five Fundamental Rights was poor treatment. Good hospitals respect patients’ rights, which are intuitive and compassionate. Even the original 30 rights were intuitive, such as the right to access to current news media, i.e. newspapers. Good hospitals don’t need to be instructed that it is healthy for people locked up to read the morning newspaper. Bad hospitals try to hold patients incommunicado in order to keep them from spreading a bad reputation for the hospitals. This kind of abuse of power and secrecy is exactly what the Five Fundamental Rights Act is to protect us against.
Currently, Jon Dosick, our comrade in the fight, is pushing to add a sixth fundamental right: the right to go outside everyday. His argument is fresh air and the outdoors are proven to make people feel better, improving their mood and self-esteem, and even prisoners in penitentiaries are granted one-hour in the yard every day for compassion for their health. Why should hospital patients be locked in all day, for weeks at a time, when it is healthier for them to be outside? For instance, I was hospitalized for 5 weeks in the height of summer. I never saw daylight for the first month because I opted for a commitment hearing instead of signing myself into the hospital as a voluntary patient. My strategy of involving a judge with a legal perspective to oversee the hospital’s psychiatrist helped me get discharged quicker. The psychiatrist misunderstood my fiery temper to be mania, and withheld privileges to go outside, which are a usual precursor to discharge. He could well have kept me much longer, and, eventually, sold me down the river to long-term care because I wasn’t given an opportunity to prove my ability to “tolerate increased privileges,” and, I think, feeling unhappy about being cooped up inside made me appear sicker. Without judicial oversight I would have had a hard time getting out of this mental hospital in just 5 weeks.
In addition to granting the right to fresh air Jon Dosick’s bill suggests the creation of a hearing board for grievances and complaints about violations of the Five Fundamental Rights. The language is not specific, but attorneys at the Mental Health Legal Advisors Committee say bills often suggests solutions, and then, leave the actual mechanics of how to accomplish them up to the Legislature. The proposed law at the State House hearings folds what is called the Fresh Air bill into the Five Fundamental Rights enforcement bill. The Fresh Air bill has been filed in every Legislative session since 2005, and the Five Rights enforcement bill has been filed, in some form, either singly or combined together with the Fresh Air bill, every session since 2007. Our colleague Jonathan Dosick is coordinator of the combined Five Rights/Fresh Air effort.
Mainly opposed to these reforms is the lobbyist for the psychiatric hospitals, a man we call “Mr. Matteodo.” He claims granting more rights, and protecting our existing rights, is too expensive and patients are too dangerous, to make it feasible. Furthermore, he says the average length of stay in mental hospitals is just 7-8 days, so what difference does it make?
Below is my testimony to the Massachusetts Legislature’s Committee on Mental Health & Substance Abuse in favor of the Five Rights/Fresh Air bill (House Bill #1806). It is cleaned up a bit for readability, removing the name of the hospital, correcting errors, and, hopefully, getting rid of any typos. Also, hopefully, it answers Mr. Matteodo’s question of the difference these reforms would make to a person’s hospital stay, however short.
I’m Cathy Levin, a psychiatric survivor and current user of mental health services. I was in the hospital for 5 weeks this summer and my rights, accorded by the Five Fundamental Rights Act, were violated. The hospital I was in doesn’t respect the law because nothing forces them to respect it. Their human rights officer claimed never to have heard of the Five Fundamental Rights Act.
I thought about the Fresh Air bill and the Five Fundamental Rights Act a lot this summer. The spirit of the Five Fundamental Rights Law, which is intended to prevent people from being held incommunicado in mental hospitals, that is, being held without the ability communicate with outside help, is violated at the hospital I was in and in several different ways. First of all, use of telephones is discouraged. Our cell phones were taken away and public phones are in well-trafficked hallways. All the chairs are removed, so people can’t sit down while talking on the phone. As a result, peoples’ outside relationships suffered.
This hospital violates the reasonable times for visitors provision in the law. Visiting hours are very limited to just 3-hour windows: 4-7pm during the week, and 1-4 pm on weekends and holidays. At one point, I needed a notary public to verify my signature for some business. He needed to come during business hours, but the hospital would not allow it.
This hospital presents information about our rights in densely printed messages, framed on the wall. Nothing would indicate that these are state legal and civil rights. Rather, our civil legal rights are presented as if they were policies originating from a considerate hospital administration.
Moreover, the only free lawyers available are from the Committee for Public Counsel Services (the public defenders office). So, you can only get a lawyer if you risk being committed for 6-8 months at a commitment hearing. Only after I got out of the hospital did I learn that the Disability Law Center is the Protection and Advocacy (P&A) in Massachusetts, and they have an inpatient team that would have been a good resource for me. No information about the P&A was provided by the hospital.
If there is one thing putting teeth into the Five Fundamental Rights Law would improve about treatment it’s that a reliable complaints process would provide a feedback loop for customer service, so complaints would be taken more seriously by the management, and so the management would disciplined their staff for abuses of power, resulting in better customer service on the patients’ end.
Finally, I want to say this in support the Fresh Air provision in the bill:
This hospital has a chain-link cage for smokers. By linking Fresh Air Rights to smoking privileges they tie the right to go outside with smoking, and this is bad policy. The smokers became a tight-knit clique, going off the unit three-times per day together, while non-smokers were left out. Separating a tight, in-group of smokers, from a few “uncool” people, who don’t smoke, encourages people to think smoking admits them into a “cool-crowd”—and will, clearly, make it much harder to convince them to quit smoking later.
Moreover, people often were admitted on a Friday and can’t even talk about getting privileges for three days until they see a doctor on Monday when doctors were on the unit again. What a big difference it would have made to the quality of their experience in the hospital, if they had been allowed get outside on their first day.
Thank you for the opportunity to testify on this important bill.
Cathy A. Levin
Sept. 10, 2013
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.