Deinstitutionalization has become a crucial event for the entire mental health services system and consequently lives of all disabled people. In order to understand the process more clearly, one can distinguish between several of its aspects. Among such, it is important to understand that deinstitutionalization comprises separation of the assistance and the types of supporting institutions, providing the universal options of the facilities for all mentally ill and providing the disabled with the ability to control their lives. While it was commonly accepted to keep the disabled people separate from the society, the middle of the 20th century was marked by some changes. These shifts were predetermined by the world globalization, industrialization and humanitarian movements for the civil rights and against psychiatry. Moving the mentally ill from the hospitals, asylums and other institutions to the community was accompanied by appearance of the community services and legislation that supported the disabled people’s rights. Till nowadays, the effectiveness of the institutional care replacement is supported by different conventions and standards. Among such, one should regard European Parliament Resolution on the Rights of Disabled People of 1996, Charter of Fundamental Rights of the EU, UN Convention on the Rights of Persons with Disabilities accepted in 2008. Deinstitutionalization movement initially restricted only people with less serious disabilities, but later expanded for people with severe disabilities as well. However, till nowadays, the appropriateness of the changes for all mentally ill is still under dispute. The aim of this paper is to prove that the shift from the institutional care for the mentally ill to the community-based services should be a person-centered task with the disability type as the appropriateness determining factor.
Strengths and Benefits
Shifting to community-based care of the mentally ill was carefully planned and aimed to support the needs, rights and desires of individuals, who were previously treated unjust or even violently. The history of institutions for mentally ill was full of examples how people lived not only limited from family and the entire world, but also had to suffer from the doctors’ or other patients’ abuse. There were numerous cases of the patients’ death in such hospitals. Hence, the institutions obviously deprived people from living a normal life. Mainly this problem had to be fixed by the deinstitutionalization process.
Dating back to the period of World War II, such institutions were supporting Eugenics policy of the Nazi Germany. Providing help to the mentally ill was not the aim of the common organizations. Instead, making the society free from the feeble-minded or other disabled individuals was the social thinking that was central in the institutions for the disabled patients. “Mentally deficient” were not only isolated from the society, but even forcedly sterilized in the medical institutions. Consequently, deinstitutionalization has become the protest against the German violent policies and human segregation in general. Moreover, it can be estimated as struggle against the ethical norms and universal human rights while ethics, experience and evidences are defined as three major components of the proper medical treatment.
Supporting the disabled people and treating them as equal is closely interconnected with the issue of human rights. It is obvious that isolation and cruelty is the aspect of segregation in the society. Breaking the internationally accepted standards through poor treatment or unjustified rights limitation is inappropriate in the civilized society following the Universal Declaration of Human Rights. The legal aspects of the rights for the mentally or physically disabled to be included into the society was supported by several doctrines in the end of the 20th- beginning of the 21st centuries. Firstly, the US Community Mental Health Act was accepted in 1963 to prove that institutionalization problem was particularly significant in the civilized society. In 1973, the John Talbott’s attempts became considerable to show the psychiatric system and particularly patients’ readmission demands improvements. The failures in the patients’ treatment were also marked out in Talbott’s reports in 2003 as he focused on the necessity of careful planning in the sphere of the disabled patients’ treatment and defined the traditional psychiatric hospitals as the “outdated system of service”. The Resolution on the Rights of Disabled People is another document that supports deinstitutionalization as beneficial and protects people from violence and discrimination. The main idea of the resolution is to make disability right be considered as the general civil right. The next supportive act that prohibits discrimination predetermined by any disability is the Charter of Fundamental Rights of the EU. According to its articles, institutionalization can be regarded as disrespect towards the citizens and violation of their will. At the same time, local services and communities contribute to disabled citizens’ independence and affiliation to the community, which are the inherent rights of the disabled individuals according to the UN Convention on the Rights of Persons with disabilities.
An important advantage of the community living for the mentally ill patients is the possibility to improve the level of life. The care offered in either old or new institutions cannot be characterized as one that is oriented to make the life of the patients better. It can be characterized as equal for everyone regardless the diagnosis or peculiar needs. Hence, there are many studies that show how deinstitutionalization improved the lives of people with intellectual or developmental disabilities. It has allowed people to live with decent support level within their own communities. The family and the staff support have become extremely favorable for many disabled people.
The institutions that were commonly limiting the disabled people from the community did not distinguish between the peculiarities of the disabilities. To be more precise, there happened absolutely unjustified occasions, when a person with a physical disability like cerebral palsy was placed into the institution regardless of his or her possible intellectual competency. Such decision could limit not only the personal strengths to improve the quality of life, but also the ability to work and contribute to the general wealth of the country. The same unjustified isolation is related to children, who could develop slowly on the early stages of life, but can get a decent intelligence level in case of proper treatment. Nowadays, the community services can eliminate such mistakes and contribute to the development of the country due to the person-centered approach to the treatment of the disabled. Mainly discovering the capacities of the person, developing support, building the community, sharing the resources and creating vision are the steps that make the communal services particularly helpful for the mentally or physically disabled.
Another benefit of deinstitutionalization is based on its financial evaluation. Estimation of the expenditures shows that if community-based care of mentally ill people is not cheaper than keeping them in the institutions, it is definitely not more expensive. According to the report by Mansell & Meadle-Brown, community services are superior to isolating institutions. The main areas that represent the superiority of the community-based model comprise adaptive behavior improvement and challenging behavior decline. Nevertheless, the same areas showed some deviations predetermined by different complexity of the diagnoses. Severe mental illnesses were associated with worse results regarding the challenging behavior occasions of the patients, psychotropic medication usage and mortality rates. The additional areas that reported improvement by communal living instead of institutional isolation were personal growth, community participation, performing meaningful activity and developing contacts, interaction with family and clients’ satisfaction. The common investigations were provided by Kozma, Mansell and Beadle-Brown to show the improved behavior of the disabled people moved to the community. They reported that 7 out of 10 spheres including community participation, friendships, family communication, self-determination, living conditions, adaptive behavior, family and client’s satisfaction underwent considerable positive changes with the shift to community care services. One more research that focused on the difference of the adaptive behavior of the disabled people proved that living in the institution commonly evokes tension among the patients. Moreover, it can case such additional damaging influences for a person as the social pressure, isolation from the outer world, cognitive deficit and other. Such factors can lead to identity loss, overprotection or other complications of the diagnosis. Regarding clinical paternalism as an effective method to help patients, one can see that the same method as well as avoiding at least half of the above mentioned complications is the advantage of the community living for the disabled.
The employment rates can also be improved by hiring people with disabilities. Many things depend on the nature of the disease and its influence on people’s productivity. The intellectual competence accompanied by physical disabilities can let one work with the help of the assistant or new technological devices that are being rapidly developed. People with disabilities have a number of options to improve their lifestyle and contribute to the economy of the country. In the same way, they can improve the mental state and get a possibility to develop in some way. Some options include not only personal assistants, but also SSA incentives, self-employment, telecommuting or forming partnerships with some businesses. Hence, “supported unemployment” is a real benefit for the disabled that community living can provide.
Even though there exist some disputes regarding cost effectiveness, the majority of reports prove that it is not more expensive than institutional care. The main component of expenditures in the medical sphere is staff. Hence, the less medical workers are present, the less expenses for care would appear. Even though the presence of the numerous well-qualified staff may be not so obligatory for some patients with less severe illness, many people with more severe disabilities are not able to handle things without professional treatment. Moreover, congregate care always demands repairs due to long-standing and regular impacts. Taking into account comparable needs and quality of care, the person-centered approach brings benefits to both individuals and society. The main point is that proper treatment of the patients in the hospitals would include not only building refurbishing, salaries, medications and other expenses, but special trainings and complete reorientation of the hospitals that should provide more effective treatment to the patients. At the same time, this can become the involvement of the community services that would mean paying double price. Hence, the improvement of the institution quality would become more costly than providing staff and residential accommodation to the disabled. The above mentioned points prove that transition to the community-living model is better that institutionalization in many cases. However, the diversity of the accompanying circumstances as well as disabilities variety does not let one define it as the only appropriate model of treating the disabled.
Limitations and Challenges of Deinstitutionalization
Deinstitutionalization as any other process that ruins a well-established system also has a number of limitations. It cannot be regarded as a guarantee of better outcomes. Firstly, there is an alternative to implement the same good community-based services and principles in the special institution. Among such, the individuals’ needs can be met by implementation into use the person-centered treatment, communication with family and partial involvement into the community life. At the same time, such care would stay effective for the patient and would not make the individual a burden for the family. Moreover, ensuring such day-to-day principles is easier when they correspond to one common plan created by the professionals and possibly being altered according to some specific demands. In addition, day-to-day assistance to a great number of people is more effective if the individuals are gathered in the same building. These are the points that deinstitutionalization policies neglected.
The closure of the psychiatric institutions has also produced social resistance. It is important to understand that psychiatry was and is not the last economic sector that provides employment to a great number of people. In the remote areas, as it was common for asylums’ location, hospitals often were the main source of employment. Deinstitutionalization obviously had a deeply negative impact on thousands of worker, who lost their jobs with no offer of the alternative employment. With the loss of the balance in health sphere it became necessary to create the new working places or reeducate the professionals. A new balance of care model was offered only in the 21st century due to a broader view on the psychiatric system. Person-centered approaches and considering the long-term perspectives became the key issues. As a result, the balance in the system with community care prevalence was compensated by means of providing more professional services to the mentally and physically disabled.
However, a great number of literature focused on the lack of the skilled professionals in the area of the community services for mentally ill. Even though treatment of some less severe diseases is on the appropriate level and can demand care on the level of household assistance and providing medicines, some disabled people may have more complex needs. Primarily profound intellectual disabilities and challenging behavior are the main aspects that are not treated properly. As a result, orientation to provide disabled people better life in the community is not always successful.
Though community living helps, there are some exceptions that are mostly predetermined by the complicacy of the disability. Unsuccessful attempts to support the disabled are mostly associated with severe mental illnesses that make people absolutely unable to lead the normal life and be even partially independent. Moreover, good quality of life is related to a great number of services. Adjustment of such services can be not only complicate, but sometimes demanding considerable sums of money. Among such, Mansell & Beadle-Brown emphasized the failures of generic services, necessity to change the training of staff, disability discrimination legislation and some other services.
To some extent, deinstitutionalization has also become unfavorable for the economic situation. The evidences related to disability factor and its relation to the employment and income level in the US were offered by She & Livermore. Comparing the short and long-term poverty among the Americans of the working age, the authors showed that the disability was an influential feature for the poverty group. The rates of poverty among the mentally or physically disabled people appeared to be 2-5 times higher than among those without disabilities. The annual indicators for the disabled showed 47% of poverty in 1997 and the long term measure appeared to be 65% the same year. Such statistics shows that the welfare of the disabled people in the society is not always as good as it should be. Moreover, it is also possible that the stereotypes regarding people’s disabilities and ability to work can also become influential when dealing with such people’s employment.
In fact, deinstitutionalization is a positive phenomenon due to the changes it has brought to the life of the disabled and the tasks it has put for the society. On one side, it has become an obvious improvement in the health care system but from the other perspective, it has created new challenges. Nevertheless, even the challenges and limitations bring something positive into human society as they present the proper direction of the system development. For each representative of the heath care as well as community service emphasis on the competence level, crucial role of the person-centered approach, deeper analysis of the personal peculiarities and understanding of the failures should become the best way to provide local improvements that would gradually contribute to the decent qualified treatment of the mentally and physically disabled in the entire world. As the most appropriate directions to spend the money wisely always create a real dilemma, the above mentioned researches have proved that the local circumstances contribute much to its solvation. At the same time, the health care managers have to understand that the changes should not be too sharp and rapid. Gradual and deeply planned but not too slow integration is the cornerstone of success when it goes about mentally or physically disabled people. Considering the steps that should be taken to change the care system for a more community oriented one, special training of the staff regarding individual orientation and proper selective assistance is necessary. Following the ethical norms, setting priorities and choosing the proper therapeutic approach are the most effective policies for the administration dealing with the disabled.
The nature and peculiar features of the disabilities obviously contribute to the results of any treatment. People with higher needs to be supported cannot live independently and need constant care that can be available in a special institution. However, even in the performance of a person cannot be improved in the community and need not only regular, but constant presence of someone, who would help, it is necessary to organize the hospitals according to some obligatory principles. These principles include person-centered treatment, family and friends’ support, provide all necessary help and ensure qualified professionals.
To sum it up, one can see that wisely planned transition to the community-based care for the disabled provides better outcomes for all citizens. Deinstitutionalization is doubtlessly advantageous for the disabled people, especially for those, who could have been placed to psychiatric institutions only due to their physical disabilities and regardless their intellectual abilities. With the emphasis on human rights and ethical inappropriateness of the psychiatric clinics as they were, community-based services for the disabled allow them get a better quality of life, communicate with relatives and even work. The reaches prove that such changes in the atmosphere are doubtlessly good for the patients and contribute to the positive changes in their lives. Some challenges of deinstitutionalization are based on the diseases’ complexity and people’s inability to lead independent life. Moreover, the staff should also be trained appropriately to be able to trace the individual demand and provide the necessary help. Consequently, there should exist some special criteria regarding the treatment of the disabled and the decisions concerning the benefits this or that person can get form community living. Even though living in the society is the inherent right or each citizen, sometimes treatment in the hospital is not discrimination, but better alternative.