Half a Million Liberated from Institutions to Community Settings Without Provision for Long-Term Care
by Curtis Flory MBA and Rose Marie Friedrich RN, MA
Deinstitutionalization has progressed since the mid-1950’s. Although it has been successful for many individuals, it has been a failure for others. Evidence of system failure is apparent in the increase in homelessness (1), suicide (2), and acts of violence among those with severe mental illness (3). Those for whom deinstitutionalization has failed are increasingly re-admitted to hospitals. It is common to find persons who have been hospitalized 20 times over a 10 year period. Tragically, there are more persons with mental illness in jails and prisons than there are in state hospitals (4).
Beginning also in the 1950’s, new treatment philosophies were introduced which emphasized short-term and community based treatments. Unfortunately, the wide range of community supports which were necessary to maintain persons with severe mental illness in the community has not developed in many communities. In addition, the legal development of “least restrictive” environment has frequently been interpreted as independent living for all consumers, regardless of whether the setting is justifiable on clinical or humanitarian grounds.
A comment from one frustrated mother clearly describes the plight of some who do not find appropriate care in the community:
My son, who has schizophrenia, has been ill for 20 years. During his illness he has been moved in the system 62 times, with 23 hospitalizations. He has been arrested numerous times and has lived in shelters and on the street a minimum of 6 times. He has a substance abuse problem and has been diagnosed with hepatitis and acute infections. We don’t have much hope for the future. (MA)
A SPECIAL HIGH RISK POPULATION
There is general agreement that about 2.8% of the US adult population suffers from severe mental illness during any given year (5). Among this population, there is a subgroup who do not respond to traditional community treatment. It is estimated that this high risk population includes an estimated 1,000,000 individuals, or 1/5 of those with serious mental illness (6). Unfortunately, discussion and research of this most vulnerable group has been neglected, falling victim to the ideological war between pro-community integration and pro-hospital camps. The most severely disabled have been forgotten not only by society, but by most mental health advocates, policy experts and care providers.
As co-directors of the National Alliance for the Mentally Ill (NAMI) Long-term Care Network, we conducted a study of this special population to determine their demographics, treatment histories and quality of life. We developed a questionnaire that addressed several areas of concern including housing, a variety of health issues, social and family relationships, employment, finances and safety. Questionnaires were mailed to former members of the NAMI Hospital and Long Term Care Network and members of NAMI affiliates in Iowa and Massachusetts. Responses were received from 500 families in 23 states. Most respondents were parents. Issues related to housing and health are presented in this article. Commonly occurring themes are presented along with family comments in these areas.
The majority of the following responses were from families who had an ill member diagnosed with schizophrenia. In fact, 78% of the respondents reported that their ill family member had the diagnosis of schizophrenia.
Clients resided in a wide range of settings and showed high frequency of movement which is symptomatic of fragmented care. The average client changed places of residence at least 14 times.
Lack of adequate housing in the community was described by many. This lack of housing option impeded returning to the community and opportunities for rehabilitation:
My son has been ready for about a year to come out of the hospital — but there is a lack of 24 hour supervised housing — so he is still waiting for a placement. (MD)
He was in the state hospital for 6 1/2 years for his safety because he was a wanderer and was unsafe. They kept saying there was no place for him in the community. (AZ)
Lack of services resulted in total disability for clients and impacted every aspect of their lives. On the average they had been ill for 21 years.
A parent from Alaska summed it up well, ‘It has caused (my son) to be totally disabled. The combining of so many failures in treatment has left him with so many residual problems that his potential for success . . . is minimal.’
Medical Illness Was Pervasive
Medical illnesses frequently go undiagnosed and untreated among persons with severe mental illness (7,8). The degree to which medical problems interfere with treatment and rehabilitation efforts and the danger that the presence of mental illness creates in the management of medical disorders have also been ignored in service planning. Furthermore, clients are often unable to communicate their symptoms and give a coherent account because of the internal chaos associated with their psychiatric illness and therefore the illness may become severe before it is recognized and treated. Medical problems may also result as a consequence of the poor health habits of this population and/or the side effects of medications. For example, many persons with severe mental illness are overweight secondary to side effects of their medications, sedentary life style and poor eating habits. This combined with heavy smoking leads to additional cardiac risks. With proper monitoring and support services, these risks can be reduced.
48% of clients had medical problems.
The most commonly cited medical diagnoses were arthritis, hypertension, and diabetes.
Medical problems were frequently exacerbated by lack of a protective setting.
Bad health habits and side effects of medications were commonly cited as contributing to poor physical health.
Approximately 50% of people with a diagnosis of severe mental illness also have a diagnosis of substance abuse disorder (2). Clients may self medicate because symptoms of the illness are not under control or as a way to deal with their social isolation. Consequences include noncompliance with medications, frequent rehospitalization and homelessness.
21% of clients had a substance abuse problem.
Families related the occurrence of substance abuse to a variety of factors, including lack of case management and social isolation.
Noncompliance Was Common
Seventy-four percent of neuroleptic-responsive outpatients become noncompliant within 2 years. The consequences of noncompliance account for at least 40% of all episodes of schizophrenia relapse and for at least one-third of all in-patient costs (9). The reasons clients do not take their medication are varied and may include lack of insight, side-effects of medications and inadequate structure and support within the environment.
43% of clients had histories of noncompliance with medications which led to relapses in illness.
Lack of insight into the illness was often associated with noncompliance. According to one family member.
This is such a small space to describe 44 years of sheer hell. Most of my childhood she refused medications. . . . The adult children had to commit her four times. . . . She was delusional in New York City, Minneapolis, Tucson and she dug through garbage. It’s always up to the family to save her. (IA)
Discharging the client prematurely from the hospital or removing the ill person from a highly structured setting resulted in noncompliance.
Inadequate staff and lack of follow-up also increased noncompliance.
Noncompliance resulted in a progressively lower level of functioning.
Every time he has gone off medications he has never reached the level of capabilities he had previously. (SD)
The Revolving Door Syndrome
The duration of stays in hospitals has become shorter under managed care standards. Often clients are admitted and treated in hospitals before clients’ records can be transferred. Clients are often diverted from a familiar hospital to an available bed in another hospital where staff are unfamiliar to the client. Stability and consistency is a requirement of quality care for the severely mentally ill population.
75% of clients had been in the state psychiatric hospitals 1 – 50 times.
65% had been hospitalized in the acute care setting.
The average number of acute care hospitalizations was seven.
The impact of the revolving door syndrome was devastating.
Our son has cycled in and out of apartments and hospitals for 6 years getting progressively worse. . . . Lack of support services left him with his illness escalating beyond control. (NC)
High Incidence of Suicide
Recent studies of persons with schizophrenia point out that about one-third will attempt suicide, and about 1 in 10 will complete suicide. The suicide rate for those with mood disorders is 15%. This is in contrast to the suicide rate for the general population which is 1% (2).
42% of clients had attempted suicide.
Of those who attempted suicide, most had made 2 or more attempts.
Families lived in constant fear of suicide.
We have constant fear that she will kill/hurt herself, sadness that she is so unhappy, and have feelings of helplessness and guilt. (Has made 3 suicide attempts in the past). (MA)
Many of those in this subgroup are at high risk. They are primarily male, single, unemployed and often live alone. They also have chronic, relapsing illness which requires frequent hospitalization; have poor response to their medications and feel hopeless about their future.
Suicide and attempts were attributed to lack of adequate services and medication non-compliance.
Alarmingly High Death Rate
A fact that is seldom discussed but alarmingly true is that the death rate is significantly higher for those who are severely mentally ill than it is for the general population. It is clearly established that individuals with schizophrenia die at a younger age than do individuals who don’t have schizophrenia. The largest single contributor to this statistic is suicide which is 10-15% as compared with 1% in the general population. Also contributing to early death are poor health habits including heavy smoking, obesity and alcohol abuse. The presence of undiagnosed and untreated diseases, such as heart disease and diabetes, account for a significant number of those who die young. Homelessness also increases the mortality rate because of increased susceptibility to accidents and diseases (10).
Researchers and health professionals have long observed that psychiatric patients have reduced life expectancy. In a study of 43,274 adults served by the Massachusetts Department of Mental Health, Dembling et al. (11) found that this population lost 8.8 more years of potential life than persons in the general population – a mean of 14.1 years for men and 5.7 for women.
STRUCTURE IS THE KEY INGREDIENT IN IDEAL COMMUNITY BASED RESIDENCES
There is a need for both a structured and long-term care environment for this high risk population. According to H. Richard Lamb, structure is considered a “bad word” in the treatment and rehabilitation of persons with severe mental illness compared to the “good words” of independence and freedom. He states that although structure is often considered a bad word, it represents a good and useful concept. Research indicates that many persons with schizophrenia lack the ability to create their own internal structure. If placed in the community in a living arrangement without sufficient structure they may quickly decompensate and return to the hospital or to the streets (12).
In order to identify the important characteristics of structure, we surveyed NAMI family members. Our questionnaire was published in many NAMI newsletters in Spring, 1997. Responses from 300 family members indicated that long-term care residences were unavailable, in a majority of communities.
Even if long-term care was unavailable, family members described the staff and services that should be included in long-term care settings. Specifically, families identified that on-site professional staff were very important. Approximately two-thirds of the respondents considered it important that nurses and social workers be on-site. About one-fifth wanted physicians on-site. Although on-site professional staff were identified as very important, many felt it was not necessary for them to be in the setting full-time.
Medication supervision was identified as the most important on-site service. Most (92%) said it was very important. On-site recreational/social activities and meals were also cited as very important by over three-fourths of the respondents. Learning job and community living skills, while very important, may best be accommodated outside the living situation according to family members (13).
THE IMD EXCLUSION IS A MAJOR BARRIER TO THE AVAILABILITY OF LONG TERM CARE
Size of the ideal setting is a critical factor, since onsite services tend to make smaller group settings less economical. The typical cost per day for facilities in Massachusetts and Iowa were $114 (9.7 beds mean) vs. $56 (31.7 beds mean) respectively. The smaller facilities, in Massachusetts, did not have onsite professional services and programs which were characteristic of the larger Iowa facilities.(14). The federal Medicaid exclusion of institutions of mental diseases (IMD exclusion) is a major barrier to the development of long term care facilities with adequate structure and support services for individuals suffering from severe mental illnesses. The IMD exclusion prohibits Medicaid reimbursement for institutions with more than 16 beds, that are primarily engaged in providing diagnosis, treatment or care of persons with mental diseases (15). This law has become a major barrier to the availability of economical long-term settings which can provide structure and professional supervision and should be eliminated.
- E.F. Torrey, Nowhere to go: The Tragic Odyssey of the Homeless Mentally Ill (1988).
- N.C. Andreasen, D.W. Black, Introductory Textbook of Psychiatry (1995).
- L.B. Dixon, J.M. Deveau, Dual diagnosis; the double challenge, NAMI Advocate 20 (NAMI, Arlington, VA), April/May 1999, at 16-17.
- E.F. Torrey, J. Stieber, J. Ezekial, Criminalizing the Seriously Mentally Ill: The Abuse of Jails as Mental Hospitals (1992).
- Health care reform for Americans with severe mental illness: Report of the National Advisory Mental Health Council, American Journal of Psychiatry 150, 1993, at 1447-1465.
- R.M. Friedrich, C.B. Flory, Hope for those who require long-term care? NAMI Advocate 17: (NAMI, Arlington, VA), 1997, at 13-14.
- National Institute of Mental Health, Caring for People with Severe Mental Disorders: A National Plan of Research to Improve Services. DDHS Pub. No. (ADM) 91-1762, 1991, at 1762.
- B. Felker, J.J. Yazel, D. Short, Mortality and medical comorbidity among psychiatric patients: a review, Psychiatric Services 47, 1996, at 1356-1363.
- P. Weiden, Medication noncompliance in schizophrenia: A public health problem, The Decade of the Brain 4, 1993, at 5-8.
- E.F. Torrey, Surviving Schizophrenia: A Manual for Families, Consumers and Providers (1995).
- B.P. Dembling, D.T. Chen, L. Vachon, Life expectancy and causes of death in a population treated for serious mental illness, Psychiatric Services 50, 1991, at 1036-1048.
- H.R. Lamb, Structure: the unspoken word in community treatment, Psychiatric Services 46, 1995, at 647.
- R.M. Friedrich, C.B. Flory, Structure is the key ingredient in ideal community based services, AMI of Iowa Newsletter, Fall 1997, at 14-15.
- R.M. Friedrich, C.B. Flory, H.B. Friedrich, C.G. Hudson, A survey of community residences for persons with severe mental illnesses (manuscript in progress).
- 42 U.S.C. § 1396d(I).
Copyright 1999, The Treatment Advocacy Center Originally appeared in Catalyst Vol. 1, No. 2, Nov./Dec.1999.