Mental Health Patient Rights: Survivors Gather to Show Support

Amanda Morley

About 100 supporters gathered in room A-2 of the State House on September 23, 2009 to demonstrate in favor of the mental heath bills being heard there. The aura in the room was outstanding, brimming with a sense of companionship and force of will, both of which were strong. The network for participants was so comprehensive that peer support persons set up outside the hearing room for those who might be triggered by the day’s events or testimonies.
For almost five hours, more than 30 people shared personal stories to the Joint Committee of Substance Abuse and Mental Health as testimony and asked that bills # 1945, #3584 and #3585 would be favorably passed. These bills would represent the following: House Bill # 1945/ Senate Bill # 743, which calls for patients on inpatient psychiatric units to have daily access to fresh air and the outdoors, and which would also provide a means of appeal for violations of the Five Fundamental Rights (see sidebar). House Bill # 3585, which calls for the Department of Public Health (DPH) to collect data on the use of restraint and seclusion in emergency rooms, and House Bill #3584, which is an act directing the Department of Mental Health (DMH) to study peer run respite services.
The stories were mostly from mental health survivors who had been through the horrors of the system and lived to tell the tale. The sole dissenter was overwhelmingly outnumbered. As Executive Director of the Massachusetts Behavioral Health Systems, David Matteodo was the only person in room A-2 that opposed House Bill #1945.
On the matter of fresh air: “It’s a safety issue,” Matteodo said. “They don’t have outdoor areas in urban hospitals. We are in support of fresh air. We want to do whatever we can to support our patients.” He went on to say that the average length of stay in the 47 in-patient hospitals that he oversees is nine days. He said that nine days is an insignificant amount of time, and therefore the fresh air act should not be accounted for. The next point that he made was that there was a significant cost presented if the bill was to be passed. The hospitals would need to build, as he mentioned earlier, outdoor areas for patients. “You think you are being punished for not going outside? That is not true.”  In a non-chalant voice, he added that if anyone suspects abuses, “apply to DMH.” A few people laughed and rolled their eyes at this comment, muttering under their breath at how absurd this sounded, knowing how rough the complaint process can be. Throughout the course of the hearing, many people responded to Matteodo’s statements, canceling them out with comments and rebuttals of passion and concern. “We are more likely to be victims of crime than perpetrators of crime,” one man said. Later on and during his testimony, Walter Noons, Senior Attorney at the Disability Law Center in Boston put in his two cents, saying, “[The] DMH complaint process is ineffective. It is a burden of proof, [and it] is extremely difficult.” He also commented, “DMH’s heart is in the right place. If there’s a will, there’s a way to get people outdoors.”
Jonathan Dosick, coordinator of the Five Fundamental Rights/Fresh Air Effort and a representative of the Coalition for the Legal Rights of Persons with Disabilities (CLRPD), stated, “Because no means of enforcement or appeal of the law were clearly defined, the Five Fundamental Rights law is violated at a truly astonishing rate. Violations occur thousands of times, each and every day. I have never seen a unit in full compliance of the law. Most patients are unaware they have these rights, and appealing violations is nearly impossible. This is a major scandal and must be addressed.” Allowing for inevitable variations within the system he added, “ I don’t wish to imply that ALL staff members are guilty of rights violations. Many hospital staffers are decent people dedicated to quality care, but are often overworked and underpaid.”
On the issue of fresh air Dosick said, “Currently, about 30 hospitals in Massachusetts deny fresh air. Going outside is a major part of anyone’s quality of life…. It provides a refreshing distraction from the cramped units, interrupts cycles of negative thoughts, and illustrates that there’s a life worth returning to on the outside…. Prison inmates and even farm animals are granted fresh air under law. This speaks volumes about how our population is seen by society.” Mr. Dosick closed his testimony by stating clearly “The conditions this bill addresses represent a civil rights issue of paramount importance…. When fundamental rights are violated, so, too, are the basic values of a free society.”
Cathy Levin, coordinator of the National Empowerment Center’s project to create Peer Run Crisis Services in Massachusetts, and also chairwoman of the Emergency Room Rights Campaign at MPOWER, said that fresh air is “good for your self esteem.” Regarding the Fundamental Rights and associated complaints she added, “You don’t get satisfaction. They’re not posted. You don’t know where to go.” The question was asked by members of the committee if there was any resolution to the complaints, and Ms. Levin responded, “the vast number are disregarded.”
According to Mr. Noons, staff have coerced patients into doing things that that they had the right to refuse, such as going to groups and taking their medications, by taking away their rights.
Many others testified about how in inspections of facilities, signs with rights are posted for the inspection, only to be taken down a few days later. When signs are continuously posted, they are often illegible and hard to find.
Human rights and fresh air weren’t the only issues discussed at the hearing, however. The topics of ER rights and peer run respites were also talked about.
“Coercion is not a therapeutic alliance,” Naomi Pinson said. “It is a privilege system.”
“The use of restraints is not treatment, it’s treatment failure,” said Howard Trachtman, director of the Boston Recovery Learning Community, and whose best friend died in restraints.
One woman’s anonymous testimony proved quite powerful when she stated through a reader that after leaving the ER on her own she was followed by police, taken back to the ER, and offered Ativan (an anti-anxiety medication). When she refused it she was injected (chemically restrained) and then transported to another hospital while in four-point restraints. She chose to remain anonymous due to fear of retribution.
This author also testified at the hearing. “I was threatened with arrest while being restrained in the ER,” she said. “It would have meant a CORI report and would have threatened my housing and everything I had going for me at that time.”
Many people expressed the sentiment that they wished there were places to go for mental healthcare that were friendlier and more welcoming. This is exactly what peer run respites are. They are voluntary options to ERs, run for peers, by peers (people with lived experience of mental illness), to provide a comfortable environment in a crisis situation. People who called to testify stated that peer run respites would save the state a considerable amount of money, as these crisis centers operate on a very low cost system. It was claimed for example, that 2-3 peer run respite beds would save the state $1 million per year. All of those who gathered spoke highly of peer services, and a representative of M-POWER, Gail Shannon, mentioned that peers “treat people like people, and not like chronically ill invalids who will never get better.”
One woman, Emily Russell, recounted her story of how she became homeless but eventually found her way off the streets and out of ERs with the help of doctors and peer support.
Mr. Dosick quoted the words of the artist/songwriter Patrick Smith: “Those who have suffered understand suffering, thereby extending their hand.”
You too can extend your hand by calling upon your representative to show your favor of these bills. To find your local representative, visit www.wheredoivotema.com.

5 Fundamental Rights
1. Right to access to a telephone in private
2. Right to send and receive uncensored mail
3. Right to a humane physical and psychological environment
4. Right to visitors of one’s own choosing, in private
5. Right to receive or refuse visits from one’s own attorney, physician, psychologist, social worker or clergy member at any reasonable time.

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