Introduction:
When a loved one is unexpectedly diagnosed with a severe mental illness, the event is likely to radically and permanently change the lives of family members and close friends. The quality of life for both the diagnosed individual and caregivers is profoundly affected by the ability or inability to receive quality care, assistance, educational resources, and training for empowerment. The significance of adequate mental health treatment across the United States is largely overlooked. People who suffer most are either those who live without adequate care in a rural area or who cannot afford out-of-pocket medication, prescription, psychiatric treatment, co-pay coverage, and other related expenses. In addition to mental healthcare disparities, there is stigma surrounding mental health treatments and disabilities. The dominant ethnographic approaches that encompass this research project will include emic and etic perspectives. The first objective is to develop a website with a wide range of available materials that reflect the overall goals of this entire project. As the project is established, there will first be a well-developed project funding proposal; A creation of tools, cultural knowledge, transfer of resources to the focus community will follow. If funding is granted for this project, the goal would be to eventually develop a grounded movement that can benefit a larger number of communities.
This research project has two overlapping focuses:
- This project aims at minimizing extreme disparities in access to mental health care and improving care options for those living in rural and low-income communities in the U.S. One way to improve care is to provide education through community programs with sustainable therapy alternatives that promote the agency of community members. This program more accurately reflects on medical inequities in the context and perceptions of rural and low-income schizophrenia/schizoaffective populations. This includes people diagnosed with schizophrenia and/or schizoaffective disorder, as well as individuals or relatives who are caregivers on a frequent basis. The empowerment approach is an essential framework for this project. Using an anthropological empowerment assessment approach, the target communities will develop a sense of autonomy and the capacity to direct the initiative and successfully achieve the desired outcome (class lecture). The tools for empowerment will come from training, education, and grassroots initiatives to draw attention to inequalities, and at the same time, break down the stigma surrounding mental disorders and mental healthcare. Several ethnographic studies have been conducted aiming to tackle the many challenges linking to mental health inequities in rural areas of the country. U.S. rural areas are failing to provide enough access to quality mental health care for people (Jameson, Blank; 2007). There are challenges with sufficiently identifying socioeconomic disparities for analysis and policy objectives reveal a deficit of qualified medical personnel, lack of communication between primary healthcare and specialized mental health services, and mental illness-related stigma have led to a crisis situation in rural settings (Jameson, Blank; 2007). The cost of treatment is often enormous, and simply not an option for many people. Among those who are not getting the mental health care they need, cost is the number one reason (Barriers to Care; 2017).
- Although much has been done to remove the stigma of mental illness and disability, in our society the negative stigma is still prevalent. The history of mental health policies, negative media portrayals of people with schizophrenia, and widespread social attitudes is largely harmful for mental health care and treatment-seekers (Jameson, Blank; 2007). Treatment is usually too costly for many people living in rural and impoverished areas and is often delivered with negative stigma and discrimination or outdated methods. The public sentiment towards those suffering from mental illness has been fed to the throughout history and in all forms of media and entertainment. One way to address the issue of stigma is to provide humanistic research and education on schizophrenia and other mental disorders to the public. Many young people are speaking out and raising awareness on a variety of social media outlets, including YouTube. These young people are speaking out about living with schizophrenia and schizoaffective disorder. This is exciting, because they are showing the public that they are humans just like all of us, and they have daily struggles just like all of us. The videos seem to be received in a positive light. There are also many researchers who are using ethnographic methods to shed light on the lives and daily struggles of people who either live with a diagnosis of schizophrenia and/or schizoaffective, or cares for someone who lives with the disorder(s).
Using a systems view approach: Looking at the history of U.S. mental health policy to obtain insights on the current state of U.S. Mental Health Policy:
Understanding a system involves investigating how unstable productivity results over time from interactions within the components of a system. This provides a way to analyze the possible unintended effects of planned interventions and to consider the importance of performance evaluations and feedback. It can also lead to the development of better methods and more impactful results than conventional ways of thinking (class lecture). In researching mental healthcare policies in the United States, I wanted to gain a better understanding of how and why our mental healthcare systems are so ineffective for most of the population. Historically, there are a couple of significant events that stand out as having helped shape the current mental healthcare system, and both of them involve deinstitutionalization.
Kennedy Administration:
In the 1950’s, there were 560,000 people housed by half a million psychiatric institutes in the United States. In the 1950’s, there were 560,000 people housed by half a million psychiatric institutes in the United States (Capstone 2012). Kennedy’s administration passed the 1963 Community Health Centers Act over the next decade, providing new mental health service services with $150,000,000. The act’s passage ended Kennedy’s pursuit of the national mental health system overhaul, in which he had a personal stake. Kennedy’s sister was administered a prefrontal lobotomy at 23-years-old (Capstone 2012). Kennedy introduced the Mental Health Research Act in 1955, when he was a congressman, which appointed a bipartisan commission to produce comprehensive evaluations of mental health care and the effects mental illness had on American society. The research recommended a new role that would be much smaller in size for state hospitals as intensive treatment centers (Capstone 2012). Kennedy delivered a special message to Congress as president in 1963 outlining the need for new legislation regarding mental health. Kennedy stated that 600,000 people were affected on a daily basis by the harsh conditions of institutions and hospitals in private and public mental institutions at the time (Capstone 2012). Kennedy proposed that people with mental illness could live in more natural communities because of the benefits of new psychotropic medicines. Kennedy suggested that Congress allocate money to train more practitioners in mental health, create more programs, and carry on research. The goal was to slash the number of patients in state psychiatric hospitals by 50 percent in 10 to 20 years. Kennedy’s legislation led to a 62 percent decrease in patients in state mental hospitals in 1975. In 1977, the size of their total population had been reduced by US mental institutions to about 160,000 patients (Capstone 2012).
Reagan Administration:
The 1980s saw large budget cuts lead to a decrease in mental health services. President Ronald Reagan helped implement a series of cuts to social programs across the nation which impacted a number of groups (Capstone 2012). Over the course of the decade, his administration oversaw cuts that hampered support among other groups for the poor and mentally ill. The goal was to restore many community programs that had been cut back or reduced under Nixon’s administration during Kennedy years and President Lyndon B. Johnson’s Presidency (Capstone 2012). Reagan, however, repealed the act shortly after taking office in 1981, as Community Mental Health Centers’ federal support ran counter to its budget and social programs reduction goals. Reagan implemented the Alcohol, Drug Abuse and Mental Health Block Grant in its place, which in 1982 reduced funding by 30%, leading to major service cuts (Capstone 2012). Under this scheme, the federal government allocated funds to the states, but in smaller amounts, thus increasing the pressure on local and state governments. In 1985, the federal funds available to the ADMS block grant represented just 11% of the department expenditures, while the obligation for states rose to 42% (Capstone 2012).Even if the purpose of institutionalization was enhancing the mentally ill person’s health and quality of life is not divisive, the social outcomes of deinstitutionalization have created very polarizing views (Larson 2018). In many studies, positive outcomes are recorded in community-based mental health programs, but other studies have shown that individuals in the household or a community living were substantially lacking in essential aspects of health care, including vaccines, cancer screening, etc. Other reports also indicated that among mentally ill patients and their families, “single, poor living conditions and physical health are prevalent” (Larson 2018). Nonetheless, research suggest that community-based programs with adequate management and ample funding can deliver better patient outcomes than hospital treatment. Supporters of the deinstitutionalization campaign consider that many of the clinicians who are not often trained or prepared to adapt to the criteria for mentally ill have shifted from hospital to hospital (Larson 2018). In many ways, de-institutionalization has also shifted the treatment burden on mental illness communities, but there is often a lack of financial and health care services to ensure adequate care. While there is still a deinstitutionalization controversy, most medical providers, parents and supporters have advocated for a mix of better community rehabilitation systems (such as comprehensive case management) and greater availability of intermediate and long-term clinical psychological care for patients in need of a more organized healthcare climate (Larson 2018).
Reference:
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Published by the History Departments at The Ohio State University and Miami University; Online Article vol. 11, issue 7 – April 2018 http://origins.osu.edu/article/americas-long-suffering-mental-health-system
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Living with Schizophrenia & Schizoaffective Disorder 