Cindy Pooler: State requirements not fair to those with mental illness

The tearful mom testified that her son chose to live under a bridge rather than be forced to live in an institutional setting where he would receive all the services that he needed.

The young man suffered from a very serious and persistent mental illness and had tried to commit suicide a number of times. He felt that he could not live in the only setting that would provide for his needs, so he lived out in the open while the weather was fair enough for him to do that.

I am a social worker who has worked with families with members who have severe and persistent mental illness and know first-hand the devastating effects that these illnesses have on the individual and their family.

I was, therefore, shocked when attending a recent legislative hearing and heard the testimony regarding the requirements of mentally ill citizens of Maine who want to receive services in their own home. That is not a possibility for all services.

In 2009, the state of Maine began to require that adults with severe and persistent mental illness live in a private, non-medical institute if they wish to receive the full spectrum of medically necessary, community-based rehabilitation services.

Let me be clear about that. That is a group home or other institution setting. Yes, sometimes that is the best place for someone in need of oversight and support, but it should not be a requirement in order to receive the services they need.

An individual should be able to live in their own home, where they can feel comfortable and, hopefully, make progress toward rehabilitation and wellness. Institutional settings should not be the only option available as a place of residence.

People with medical illnesses and disabilities live in their choice of settings and receive their services and treatments where they live. If I have multiple sclerosis, cancer or diabetes, I do not have to live in a medical setting to get my treatments. Why, then, is it acceptable for the state to force someone with a mental illness to live in a specified institution (and sometimes in a specific bed) in order to receive the services that will best serve their medical and rehabilitation needs?

Following the deinstitutionalization of the Augusta Mental Health Institute, a class action lawsuit resulted in the development of the AMHI Consent Decree. That consent decree was developed to protect the rights of those patients that came through the doors of the hospital.

The principles of the consent decree also inform the mental health services and practices provided to adult patients receiving mental health services in Maine. These principles state that independence is to be reinforced and that a service must be based on the needs of the individual patient in the least restrictive appropriate setting. The requirement of the state to have an individual live in an institutional setting flies in the face of those principles.

Sen. Margaret Craven is sponsoring LD 87. It is important for the Legislature to support that bill. It would send a message to the mother of the mentally ill son that the citizens of Maine do not want to force anyone to live in a setting that is not conducive to their best health and well-being.

Cindy Pooler of Chelsea is a social worker and a member of the National Association of Social Workers.

Cindy Pooler

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JOHN PAINTER's picture

There are several layers to

There are several layers to assuring Maine offers safe and effective psychiatric rehabilitation in ones home. In my opinion, Maine struggles to understand and operationalize this through public policy and practice.

Choice of where to live is a major concern, the state should not in any instance have the ability to tell a citizen, who has not been adjudicated to a specific facility for self or public safety, where they must reside in order to receive a medically necessary service. Yet this is what Maine does in any number of instances.

I was at the hearing for LD 87, and despite strong support for the Bill was surprised that the state maintained a paternalistic and authoritarian stance. I had imagined under our current Governor that control of individuals by a governmental entity, who have not committed a crime, would not have been a factor. On the contrary it seems that a label of mental illness, with no harm to society created by an individual, is enough to begin to remove individual liberty. Choice of where to live is best left to the individual and their support network; family, friends, care professionals, etc they include in decision making. This is also assured in Federal law, I am concerned Maine runs the risk of scrutiny by the Department of Justice on this matter.

There are also considerable cost factors Maine should be closely reviewing in this economy. While it is true people with a mental illness sometimes struggle to maintain their own homes and become homeless, removing responsibility and dignity does not help in the recovery process. It makes little fiscal sense to require people who have housing, to give up that housing, move to a group home environment for two or three years, often in a part of the state they are not from, then have to move out of that group home and try to find an apartment. Aside from troubling state control of an individuals choice, it is also caries a risk of a government induced iatrogenic effect - where a person begins to lose essential daily living skills (maintaining their own home) because the state takes those responsibilities over for a few years.

In the short run, bricks and mortar facilities are invaluable for acute care needs of people with a mental illness. In the medium and long term it is very clear the costs to Maine tax payers is substantially less when individuals pay through their own resources, usually a portion of some employment, SSDI or SSI benefit, and HUD Section 8 housing vouchers for their own housing. While I agree when a person identifies with their support network a group environment is needed, we should have them available. However when given the choice, many people will not choose a group home over their own.

There is also a cost for the actual rehabilitation services which study after study indicates is most effective when provided in the environment where people will use the skill. While many skills are generalizable, not all environments where they will be used are. A simple example is, if one relearns how to boil an egg on an electric range in a group home, that skill does not necessarily carry safely over to boiling an egg on a gas range in an apartment the person moves to after discharge from the group home. These types of at first glance seemingly insignificant issues are however the bulk of where good cost/benefit analysis shows it's most effective to provide a psychiatric rehabilitation service in the actual environments where people live.

ERNEST LABBE's picture

What you say is true

What you say is true and a terrible situation for the patients and families involved.
However the patients with multiple sclerosis, cancer or diabetes most unusally do do try to harm themselves or others. How many times do we hear that the suspect with mental did whatever they did because they didn't take their medications? Unfortunatly this is true all to often.

JOHN PAINTER's picture

Good points Mr. Labbe, I

Good points Mr. Labbe, I agree with your concerns. I would like to point out as well, that most people with a mental illness do not harm themselves or others, though some do and tragically so. When one looks at such research as the Vermont longitudinal studies some 15% of people with a severe and persistent mental illness commit suicide. The good news is, the vast majority do not. One of the issues behind LD 87 is when the government tells a person, who has a mental illness who has committed no crime, where they must live to receive a medically necessary service, their response is not unlike many peoples without a mental illness - you can't tell me what to do. What I often experience in my work in the behavioral health field is, if a person is offered a service in their own home/apartment/etc without being told where to go, they are typically quite accepting, and as a result, get the service and get better. Medication compliance, as you reference as a concern is a concern, in my opinion is the first line of defense in helping people. Ironically for something so important, the average psychiatrist visit for medication management is around 15 minutes every three months. With the side effects (a misnomer since these are co-occuring effects) of most psychotropic medications causing serious weight gain, lethargy, loss of libedo, blunted affect - virtually everything most people associate with mental illness, not to mention the very real risks of tardive dyskinesia, agranulocytosis, even suicide for some medications ironically, it's understandable (though not desirable) why people become resistant over time to taking medications especially when the professionals they look to for reassurance are not allowed the time to help due to government (not best practice) imposed timelines or prior approval.

Steve  Dosh's picture

Cindy Pooler: State requirements not fair to those with mental .

Cindy , Saturday night 19:30 hst ?
Well stated ?
You have the most difficult , often depressing , and thankless job we know of . i did the social worker thing at Togus VA in the psych ward in 1 9 7 5 . Those veterans are tough birds and, well , .i just won't get in to it too much. Most of the gentlemen were voluntary back then although we had two ( 2 ) WW I ( one ) vets who had been placed there by the State of Maine . You could still see the scars from their lobotomies . There are many more women vets. now , too . The VA does the best they can with what they have to work with
Ultimately we must do no harm . Luckily , the will to live is very strong and hope ( like love ) springs eternal in the hearts of all mankind
Do what she says , people • ? Steve


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