Special Living Arrangements: A Model for Decision-Making MARY
ANN
Director Mendota Madison,
TEST,
PH.D.
of Research and Psychology Mental Health Institute Wisconsin
LEONARD Associate University
I. STEIN, M.D. Professor of Psychiatry of Wisconsin
Madison,
Wisconsin
Many chronically disabled patients need special support systems to help them meet material needs, personal-care needs, and psychosocial needs. The authors propose two guidelines that must be considered simultaneously when most appropriate
deciding what for a particular
special support system is client. The first is that
the system be adequate to meet the client’s unmet needs, and the second is that the system not meet needs the client can meet himself. The authors feel that one should look first to support systems other than special living arrangements, which can easily overprovide sewices to clients. If a special living arrangement is consid-
ered
f or
appropriate, those needs
the one selected the client cannot
should provide meet himself.
only
UThe issue of residential care for the mentally ill must appear a complex and confusing one to people witnessing the flurry of discussion and activity in the area in the past 15 years. Not long ago, forceful arguments by lawyers, mental health workers, consumers, and politicians claiming that institutional treatment was ineffective and overly restrictive contributed to a community mental health movement that resulted in a mass transfer of patients from the hospital to the community. Today the same groups can be heard clamoring with dissatisfaction over the current situation. With patients and ex-patients now in a variety of settings ranging from independent living to board-and-care and nursing homes, journalists are crying that patients have simply been moved from the back wards of hospitals to the back alleys of the community, lawyers are claiming that rights are still being denied, mental health workers are
Dr. Drive,
608
Test’s
address
Madison,
is the Wisconsin
Mendota
Mental
Health
Institute,
301
1
G.
Caplan,
Behavioral
53704.
HOSPITAL
Troy
viewing the movement as a failure, and patients are wondering where they belong. We are still a long way from implementing effective treatment programs for the more severely disturbed mentally ill persons in our communities. Regarding the specific issue of residential care, we continue to make inappropriate placements-placements that fail to meet the patient’s needs, unduly restrict his liberty, or deny him the opportunities for growth and dignity. While policy and economic factors contribute largely to such inappropriate placements, we feel they are also a result of the lack of a theoretical model for determining when, and what kind of, residential settings should be used. Rather than indiscriminately herding patients into or out of residential settings, we need to go back to the beginning and think through the question of which mental health clients need special living arrangements. For each individual who does, we must then decide what setting is most appropriate. There are several taxonomies in psychiatry traditionally used to make decisions about treatment planning; they include diagnosis, age, prior time in institutions, and etiology. After surveying these classification systems, we find none particularly useful in developing an over-all schema for determining which clients need special living arrangements. We suggest a taxonomy of persons based on their individual needs as the most useful aid in making such decisions. All human beings have similar basic needs that must be met in order to live healthy and satisfying lives. They include material needs such as shelter, food, clothing, and money; personal-care needs such as personal hygiene, personal safety, medical care, and mobility; and psychosocial needs such as interpersonal relationships, emotional support, meaningful daily activities, and recreational activities. While few of us can meet all those needs entirely by ourselves, most of us are fortunate enough to be able to meet them through some combination of our own efforts and our reliance on what Caplan has called our support systems.1 Usual support systems include mdi-
& COMMUNITY
PSYCHIATRY
Support
Publications,
Systems
and
New York City,
Community
1973.
Mental
Health,
viduals such as family, friends, clergymen, and doctors, and structures such as work, religion, and values. If we cannot or choose not to meet a need on our own, most of us are capable of gathering together or calling on a support system to help. Many persons, as a result of mental illness, are unable to meet one or more of the basic needs. Many are also unable to call on society’s usual support systems for assistance. What does the taxonomy of needs have to do with special living arrangements? The most obvious answer, of course, is that persons with unmet needs, those who can neither meet certain needs on their own nor call on a usual support system, need some kind of special support system to help. There are a variety of special support systems apart from special living arrangements that have the potential of helping an individual meet his needs. The systems include day hospitals, aftercare programs, visiting nurse services, medication clinics, and the use of outreach workers and volunteers. How do we decide whether to choose a special living arrangement as opposed to, or in conjunction with, one of the other systems? If we do decide on a special living arrangement as a component of a special support system, we then have to choose from a range that varies widely in terms of length of stay and amount of structure and supervision. The possibilities include 24-hour inpatient care in a psychiatric hospital, nursing homes, foster care, board and care, halfway houses, cooperative apartments, independent living with financial help, and semi-independent living with support provided in the residential setting by workers or volunteers outside the setting. TWO
GUIDELINES
As an aid in making decisions about the appropriateness of one kind of special support system versus another for a particular client, we set forth two guidelines that we feel must be met to assure an appropriate placement. It is our thesis that a failure to attend to both of the guidelines simultaneously has led to inadequate placements, particularly in the area of residential care.
A special support system should sure that the person’s unmet needs
be adequate to asare met. Undoubt-
edly the most blatant criticisms of the community treatment movement have been directed at failures of community support systems to meet this guideline. The recent report of the U.S. Senate Subcommittee on Long-Term Care, for instance, is filled with examples of the failure of nursing homes and boarding homes to meet many basic needs of patients. The most frequently cited abuses were the failure to provide adequate food, satisfactory medical attention, a decent amount of space and privacy, and assurance of personal safety.2 2
Subcommittee
on
mittee
on Aging,
Public
Policy,
Homes
in
D.C.,
1976.
Nursing
Supporting Caring
for
Long-Term
Home Paper Discharged
Care
Care
of
the
in the
Number Mental
Senate
United 7,
“The Patients,”
Special
States: Role
Com-
Failure of
Nursing
Washington,
in
In addition to assuring that such needs adequate special support system should ments that help the individual to become sufficient in meeting his own needs.
A special
support
system
should
not
meet
are met, an contain elemore self-
needs
the
person is able to meet himself. This guideline receives less public attention than the first, but we feel that, when combined with the first, it is the key to making wise decisions about residential placement. Special support systems should not overprovide for clients; they should not do for clients what clients can do for themselves. The guideline is crucial for two reasons. First, it is congruent with a client’s legal right to the least restrictive alternative. A client has the right to have access to a support system that, while sufficiently meeting his unmet needs, results in the least amount of restriction possible. If a support system insists on providing things the person can already do for himself, it restricts his choices and his freedom. The second reason the guideline is important is a therapeutic one. It is a reasonable goal that while a special support system assures that unmet needs are met, it also assures that the healthy aspects of a person’s functioning not be allowed to atrophy. Atrophy occurs if the support system does for the person things he is able to do for himself. Two examples demonstrate the abuses to freedom and to mental health that may occur if the second guideline is not followed. A patient was moved from the state hospital to a nursing home; the home was clean and well staffed, and was generally considered to be a good one. While the patient could not shop or prepare meals, needed supervision in taking her medication, and required assistance in doing her laundry, she was able to function quite adequately in other areas of daily life. The regimen of the nursing home, however, included telling her what time to get up in the morning, bringing her meals to her room, doing laundry for her, and telling her what the recreational activity for the evening was going to be and what time someone would come to her room to take her to the auditorium. Clearly her choices were restricted far beyond what was required to meet her unmet needs, Furthermore, the healthy parts of her functioning began to atrophy until, finally, she needed to have meals brought to her, needed to have her laundry done, and needed to be told what to do in the evening. If she had been placed in a cooperative apartment where a worker came twice a week to supervise medication-taking and laundry upkeep, and to make sure that she was eating nutritious meals her unmet needs would have been met without undue restriction and without causing atrophy of existing skills. Murphy and others give an example of the overprovision of services to clients in a foster-care setting. In describing the deadly silence and apathy at mealtime, they said, One feature that seemed to contribute to the silence was that all that was to be, from soup to dessert, was often portioned out in advance. Hence, no ‘ ‘
VOLUME
28
NUMBER
8
AUGUST
1977
609
one needed to be there to serve and there was little necessity even to ask that things be passed.” Why was the food portioned out in advance? Probably because it was easier for the caretaker. That satisfaction of a need that clients were able to meet themselves, however, led to the subsequent atrophy of being able to serve oneself at mealtime. It also resulted in the loss of small conversation, such as Pass the potatoes, please,” that is a significant part of daily living. The provision of too many services by a support system, then, is a danger to guard against equally as carefully as the provision of too few. “
A
DECISION-MAKING
MODEL
The two guidelines must be combined with reality factors to arrive at a model to be used in making day-today decisions about special living arrangements. In deciding whether or not special living arrangements should be part of an individual’s special support system, and, if so, what kind, one must first make a thorough assessment of the individual’s abilities to meet the basic needs of everyday life. Both the needs the person is unable to meet on his own and the needs that he is able to meet on his own must be noted. Second, taking into account the existing community resources, and those that might be developed, one must devise, in conjunction with the client’s own preferences, a special support system that meets the client’s unmet needs but does not meet the needs he can meet himself. In general, one should look first to support systems other than special living arrangements. We make that suggestion because there is usually a greater chance of overly restricting or overproviding for the person within a special-living-arrangements support system. If a person can easily meet his needs within the confines of a living situation, the numerous small skills that “going out” into the community require may begin to atrophy from lack of use. Also, if the residential situation has a live-in caretaker, it is often easier for the caretaker to do things for residents than to encourage them to do things for themselves. Therefore, if unmet needs can be met through arrangements other than residential ones, such as through a client’s going to an aftercare center or medication clinic, they seem preferable to using special living arrangements. If a special living arrangement is decided on, the setting that is chosen should provide only for those needs the patient cannot meet himself. Ideally each catchment area should have a continuum of living arrangements that vary in the amount of services provided. For example, a cooperative apartment with minimal supervision would be appropriate for a person whose problem is difficulty in socialization, but who can
H. The
B.
New
ber-October
610
M.
Murphy,
Back
B.
Wards?”
Pennee,
Canada’s
1972, supplement
HOSPITAL
no.
and
Mental
D.
Luchins,
Health,
“Foster Vol.
20,
Homes: Septem-
71.
& COMMUNITY
PSYCHIATRY
cook and has self-care skills. Placing such a person in a halfway house where meals are provided and doors are locked at a certain hour would be a mistake. Likewise, if a person’s only unmet need is financial, it would be appropriate to provide him with funds for an independent living situation and a program to develop employment skills. It would not be appropriate to place him in a more restrictive or supervised residential setting. If a person is placed in a residential setting that provides more services than he needs because the ideal continuum of settings is unavailable in his community, he should receive only those services that he cannot provide on his own. Consider again the individual with difficulties in socialization. If a cooperative apartment setting were not available, or if he could not meet his socialization needs through an outside agency, placement in a more sheltered setting such as a halfway house might be appropriate if he had an individual care plan designed to ensure that only necessary services would be provided to him. Thus he might be expected to prepare his own meals at least some of the time, and he would be given free access to come and go as he pleased. The stay in a special living arrangement should be as long as necessary to ensure that the person’s unmet needs are met, but should include programming aimed at helping the person toward greater self-sufficiency in meeting his needs. Such increased self-sufficiency will open the door to more options for the client as to where he can live and how he can receive the necessary support.
This model for making decisions about residential care may seem unduly complicated. Some might argue that since nationally we are so deficient in meeting the unmet needs of mental patients, we should simply make available a number of special living arrangements that will meet their unmet needs and worry later about the details, such as the issue of not meeting needs that the client can meet himself. If we do that, however, we will be repeating the mistakes we made in the past, when we built large institutions that met unmet needs but that deprived people of their liberty. and led to atrophy of the healthy parts of their functioning. There is no need to repeat the mistakes of the past. We have another chance. Although the task may be more complex and initially more expensive, it behooves us to do better this time.
.
ANN
Director Mendota Madison,
TEST,
PH.D.
of Research and Psychology Mental Health Institute Wisconsin
LEONARD Associate University
I. STEIN, M.D. Professor of Psychiatry of Wisconsin
Madison,
Wisconsin
Many chronically disabled patients need special support systems to help them meet material needs, personal-care needs, and psychosocial needs. The authors propose two guidelines that must be considered simultaneously when most appropriate
deciding what for a particular
special support system is client. The first is that
the system be adequate to meet the client’s unmet needs, and the second is that the system not meet needs the client can meet himself. The authors feel that one should look first to support systems other than special living arrangements, which can easily overprovide sewices to clients. If a special living arrangement is consid-
ered
f or
appropriate, those needs
the one selected the client cannot
should provide meet himself.
only
UThe issue of residential care for the mentally ill must appear a complex and confusing one to people witnessing the flurry of discussion and activity in the area in the past 15 years. Not long ago, forceful arguments by lawyers, mental health workers, consumers, and politicians claiming that institutional treatment was ineffective and overly restrictive contributed to a community mental health movement that resulted in a mass transfer of patients from the hospital to the community. Today the same groups can be heard clamoring with dissatisfaction over the current situation. With patients and ex-patients now in a variety of settings ranging from independent living to board-and-care and nursing homes, journalists are crying that patients have simply been moved from the back wards of hospitals to the back alleys of the community, lawyers are claiming that rights are still being denied, mental health workers are
Dr. Drive,
608
Test’s
address
Madison,
is the Wisconsin
Mendota
Mental
Health
Institute,
301
1
G.
Caplan,
Behavioral
53704.
HOSPITAL
Troy
viewing the movement as a failure, and patients are wondering where they belong. We are still a long way from implementing effective treatment programs for the more severely disturbed mentally ill persons in our communities. Regarding the specific issue of residential care, we continue to make inappropriate placements-placements that fail to meet the patient’s needs, unduly restrict his liberty, or deny him the opportunities for growth and dignity. While policy and economic factors contribute largely to such inappropriate placements, we feel they are also a result of the lack of a theoretical model for determining when, and what kind of, residential settings should be used. Rather than indiscriminately herding patients into or out of residential settings, we need to go back to the beginning and think through the question of which mental health clients need special living arrangements. For each individual who does, we must then decide what setting is most appropriate. There are several taxonomies in psychiatry traditionally used to make decisions about treatment planning; they include diagnosis, age, prior time in institutions, and etiology. After surveying these classification systems, we find none particularly useful in developing an over-all schema for determining which clients need special living arrangements. We suggest a taxonomy of persons based on their individual needs as the most useful aid in making such decisions. All human beings have similar basic needs that must be met in order to live healthy and satisfying lives. They include material needs such as shelter, food, clothing, and money; personal-care needs such as personal hygiene, personal safety, medical care, and mobility; and psychosocial needs such as interpersonal relationships, emotional support, meaningful daily activities, and recreational activities. While few of us can meet all those needs entirely by ourselves, most of us are fortunate enough to be able to meet them through some combination of our own efforts and our reliance on what Caplan has called our support systems.1 Usual support systems include mdi-
& COMMUNITY
PSYCHIATRY
Support
Publications,
Systems
and
New York City,
Community
1973.
Mental
Health,
viduals such as family, friends, clergymen, and doctors, and structures such as work, religion, and values. If we cannot or choose not to meet a need on our own, most of us are capable of gathering together or calling on a support system to help. Many persons, as a result of mental illness, are unable to meet one or more of the basic needs. Many are also unable to call on society’s usual support systems for assistance. What does the taxonomy of needs have to do with special living arrangements? The most obvious answer, of course, is that persons with unmet needs, those who can neither meet certain needs on their own nor call on a usual support system, need some kind of special support system to help. There are a variety of special support systems apart from special living arrangements that have the potential of helping an individual meet his needs. The systems include day hospitals, aftercare programs, visiting nurse services, medication clinics, and the use of outreach workers and volunteers. How do we decide whether to choose a special living arrangement as opposed to, or in conjunction with, one of the other systems? If we do decide on a special living arrangement as a component of a special support system, we then have to choose from a range that varies widely in terms of length of stay and amount of structure and supervision. The possibilities include 24-hour inpatient care in a psychiatric hospital, nursing homes, foster care, board and care, halfway houses, cooperative apartments, independent living with financial help, and semi-independent living with support provided in the residential setting by workers or volunteers outside the setting. TWO
GUIDELINES
As an aid in making decisions about the appropriateness of one kind of special support system versus another for a particular client, we set forth two guidelines that we feel must be met to assure an appropriate placement. It is our thesis that a failure to attend to both of the guidelines simultaneously has led to inadequate placements, particularly in the area of residential care.
A special support system should sure that the person’s unmet needs
be adequate to asare met. Undoubt-
edly the most blatant criticisms of the community treatment movement have been directed at failures of community support systems to meet this guideline. The recent report of the U.S. Senate Subcommittee on Long-Term Care, for instance, is filled with examples of the failure of nursing homes and boarding homes to meet many basic needs of patients. The most frequently cited abuses were the failure to provide adequate food, satisfactory medical attention, a decent amount of space and privacy, and assurance of personal safety.2 2
Subcommittee
on
mittee
on Aging,
Public
Policy,
Homes
in
D.C.,
1976.
Nursing
Supporting Caring
for
Long-Term
Home Paper Discharged
Care
Care
of
the
in the
Number Mental
Senate
United 7,
“The Patients,”
Special
States: Role
Com-
Failure of
Nursing
Washington,
in
In addition to assuring that such needs adequate special support system should ments that help the individual to become sufficient in meeting his own needs.
A special
support
system
should
not
meet
are met, an contain elemore self-
needs
the
person is able to meet himself. This guideline receives less public attention than the first, but we feel that, when combined with the first, it is the key to making wise decisions about residential placement. Special support systems should not overprovide for clients; they should not do for clients what clients can do for themselves. The guideline is crucial for two reasons. First, it is congruent with a client’s legal right to the least restrictive alternative. A client has the right to have access to a support system that, while sufficiently meeting his unmet needs, results in the least amount of restriction possible. If a support system insists on providing things the person can already do for himself, it restricts his choices and his freedom. The second reason the guideline is important is a therapeutic one. It is a reasonable goal that while a special support system assures that unmet needs are met, it also assures that the healthy aspects of a person’s functioning not be allowed to atrophy. Atrophy occurs if the support system does for the person things he is able to do for himself. Two examples demonstrate the abuses to freedom and to mental health that may occur if the second guideline is not followed. A patient was moved from the state hospital to a nursing home; the home was clean and well staffed, and was generally considered to be a good one. While the patient could not shop or prepare meals, needed supervision in taking her medication, and required assistance in doing her laundry, she was able to function quite adequately in other areas of daily life. The regimen of the nursing home, however, included telling her what time to get up in the morning, bringing her meals to her room, doing laundry for her, and telling her what the recreational activity for the evening was going to be and what time someone would come to her room to take her to the auditorium. Clearly her choices were restricted far beyond what was required to meet her unmet needs, Furthermore, the healthy parts of her functioning began to atrophy until, finally, she needed to have meals brought to her, needed to have her laundry done, and needed to be told what to do in the evening. If she had been placed in a cooperative apartment where a worker came twice a week to supervise medication-taking and laundry upkeep, and to make sure that she was eating nutritious meals her unmet needs would have been met without undue restriction and without causing atrophy of existing skills. Murphy and others give an example of the overprovision of services to clients in a foster-care setting. In describing the deadly silence and apathy at mealtime, they said, One feature that seemed to contribute to the silence was that all that was to be, from soup to dessert, was often portioned out in advance. Hence, no ‘ ‘
VOLUME
28
NUMBER
8
AUGUST
1977
609
one needed to be there to serve and there was little necessity even to ask that things be passed.” Why was the food portioned out in advance? Probably because it was easier for the caretaker. That satisfaction of a need that clients were able to meet themselves, however, led to the subsequent atrophy of being able to serve oneself at mealtime. It also resulted in the loss of small conversation, such as Pass the potatoes, please,” that is a significant part of daily living. The provision of too many services by a support system, then, is a danger to guard against equally as carefully as the provision of too few. “
A
DECISION-MAKING
MODEL
The two guidelines must be combined with reality factors to arrive at a model to be used in making day-today decisions about special living arrangements. In deciding whether or not special living arrangements should be part of an individual’s special support system, and, if so, what kind, one must first make a thorough assessment of the individual’s abilities to meet the basic needs of everyday life. Both the needs the person is unable to meet on his own and the needs that he is able to meet on his own must be noted. Second, taking into account the existing community resources, and those that might be developed, one must devise, in conjunction with the client’s own preferences, a special support system that meets the client’s unmet needs but does not meet the needs he can meet himself. In general, one should look first to support systems other than special living arrangements. We make that suggestion because there is usually a greater chance of overly restricting or overproviding for the person within a special-living-arrangements support system. If a person can easily meet his needs within the confines of a living situation, the numerous small skills that “going out” into the community require may begin to atrophy from lack of use. Also, if the residential situation has a live-in caretaker, it is often easier for the caretaker to do things for residents than to encourage them to do things for themselves. Therefore, if unmet needs can be met through arrangements other than residential ones, such as through a client’s going to an aftercare center or medication clinic, they seem preferable to using special living arrangements. If a special living arrangement is decided on, the setting that is chosen should provide only for those needs the patient cannot meet himself. Ideally each catchment area should have a continuum of living arrangements that vary in the amount of services provided. For example, a cooperative apartment with minimal supervision would be appropriate for a person whose problem is difficulty in socialization, but who can
H. The
B.
New
ber-October
610
M.
Murphy,
Back
B.
Wards?”
Pennee,
Canada’s
1972, supplement
HOSPITAL
no.
and
Mental
D.
Luchins,
Health,
“Foster Vol.
20,
Homes: Septem-
71.
& COMMUNITY
PSYCHIATRY
cook and has self-care skills. Placing such a person in a halfway house where meals are provided and doors are locked at a certain hour would be a mistake. Likewise, if a person’s only unmet need is financial, it would be appropriate to provide him with funds for an independent living situation and a program to develop employment skills. It would not be appropriate to place him in a more restrictive or supervised residential setting. If a person is placed in a residential setting that provides more services than he needs because the ideal continuum of settings is unavailable in his community, he should receive only those services that he cannot provide on his own. Consider again the individual with difficulties in socialization. If a cooperative apartment setting were not available, or if he could not meet his socialization needs through an outside agency, placement in a more sheltered setting such as a halfway house might be appropriate if he had an individual care plan designed to ensure that only necessary services would be provided to him. Thus he might be expected to prepare his own meals at least some of the time, and he would be given free access to come and go as he pleased. The stay in a special living arrangement should be as long as necessary to ensure that the person’s unmet needs are met, but should include programming aimed at helping the person toward greater self-sufficiency in meeting his needs. Such increased self-sufficiency will open the door to more options for the client as to where he can live and how he can receive the necessary support.
This model for making decisions about residential care may seem unduly complicated. Some might argue that since nationally we are so deficient in meeting the unmet needs of mental patients, we should simply make available a number of special living arrangements that will meet their unmet needs and worry later about the details, such as the issue of not meeting needs that the client can meet himself. If we do that, however, we will be repeating the mistakes we made in the past, when we built large institutions that met unmet needs but that deprived people of their liberty. and led to atrophy of the healthy parts of their functioning. There is no need to repeat the mistakes of the past. We have another chance. Although the task may be more complex and initially more expensive, it behooves us to do better this time.
.
