This still happens today. For instance, racist diagnosing in an educational context feeds into a new cycle of institutionalization and entrapment in the industrial prison complex. These racial biases in diagnosing are pervasive despite the scientific evidence showing that Black and white children experience attention deficit disorders at nearly the same rates.
Instead, doctors force diagnoses upon Black children that are some of the most stigmatized in the United States, often conflated with violent criminality. In this way, Black children are routinely viewed as being defiant and out of control; rather than receiving adequate disability care and services in schools, school resource officers arrest and the courts incarcerate Black children in juvenile detention facilities.
We still live in a world that institutionalizes mentally ill people - but instead of in asylums, they are behind bars in prisons and jails and psychiatric hospitals.
Therefore, our fight against modern institutionalization is a protest movement that fights against all carceral responses to mental health crises and builds alternatives to incarceration. 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. There is general agreement that about 2.
Among this population, there is a subgroup who do not respond to traditional community treatment. 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. Responses were received from 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.
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. They kept saying there was no place for him in the community. 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. The combining of so many failures in treatment has left him with so many residual problems that his potential for success. 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.
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. Bad health habits and side effects of medications were commonly cited as contributing to poor physical health.
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. Families related the occurrence of substance abuse to a variety of factors, including lack of case management and social isolation. Seventy-four percent of neuroleptic-responsive outpatients become noncompliant within 2 years. 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.
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. Discharging the client prematurely from the hospital or removing the ill person from a highly structured setting resulted in noncompliance. Every time he has gone off medications he has never reached the level of capabilities he had previously.
Fifty years later, it is clear that Kennedy wrote a check that his successors could not cash. In the years following the CMHA there were many other factors that further hastened deinstitutionalization, including the advocacy of groups such as the National Alliance on Mental Illness, the landmark Supreme Court decision of Addington v.
These factors made institutionalization significantly more difficult and less popular, leading to more patients and physicians preferring to have mental healthcare treated in the community setting rather than inpatient. To this day, however, community-based mental healthcare resources are far too scarce, and the consequences have been tragic.
One of the most devastating consequences of deinstitutionalization has been homelessness. Furthermore, many homeless people are reliant on Medicaid for mental healthcare. Establishing care with a psychiatrist can take several months, especially for patients with Medicaid. Many homeless people, therefore, rely on primary care doctors, who are often reluctant to treat severe mental illnesses like schizophrenia and bipolar disorder. The history of institutionalization and deinstitutionalization is complex and filled with good intentions and poor results.
Deinstitutionalization freed many people from overcrowded, poorly managed, dirty, and neglectful facilities that were used to house the mentally ill for many decades. However, the unintended consequences and imperfect execution of American deinstitutionalization left tribulations that are still felt today, particularly homelessness. Yet despite the grim picture of mental illness in the homeless population, there are things that we in healthcare can do to improve the lives of the homeless mentally ill and get them the care that they need.
All healthcare workers can push for policies that increase resources for community-based mental health services, as the CMHA intended. Clinicians can volunteer at free clinics or contact local organizations that work directly with the homeless populations and inquire about how they can help. Telemedicine allows for easy communication between primary care doctors and specialists and can be implemented to help primary care physicians take care of homeless patients with complex mental diseases like schizophrenia.
Newer, long-acting injectable antipsychotics are available and are particularly useful for populations with limited capacity for compliance, including homeless people. The history of deinstitutionalization is still being written, and we all can still be a part of the solution that visionaries like Tuke and Kennedy believed in.
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