One last thing to think about...

Anderson (2010) states “Any person or group of people become institutionalised to a greater or lesser degree by the community, organisation, culture or ethnic group of which they are a part of”.

Even though a person may no longer be living in an institution, does the culture and community cause the person to be institutionalised into the communities’ values, beliefs, and roles?

Or is it that the ex-members of a community are still institutionalised in the institutions of the community that they were a part of? Are people who have had long-term stays in institutions/hospitals so institutionalised in the old culture that they cannot adjust to the institutions of the new culture when out in the community?

These points I believe are vital for people to ponder and take into account in order to provide inclusive communities for people who have an illness or disability to live a ‘normal’ life. Stigma free!

Although the deinstitutionalisation led to a decrease in the amount of large institutions and an increase in the number of people with illness and disability residing in the community (Cummins & Baxter, 1993), Emerson (1985) raised the issue that maybe the change from an institution to community settings has only replaced one form of restrictive living with another.

 What do you guys think?

References:

Anderson, P. (2010). Institutionalisation, deinstitutionalisation what's the difference? Retrieved from http://www.psawa.com/Institutionalisation_Deinstitutionalisation_whats_the_difference.html

Cummins, R. A., & Baxter, C. (1993). A case for the inclusion of subjective quality of life data in service delivery evaluation. Proceedings from the Australasian Evaluation Society International Conference.

 Emerson, E. B. (1985). Evaluation of the impact of deinstitutionalization on the lives of mentally retarded people. American Journal of Mental Deficiency, 90(3), 277–288.

So what is best?

So what to believe is a very hard question, however there is much research, evidence and personal statements/opinions that prove institutions provided poor treatment and negatively affected patients .I bet you are all thinking to yourself that thankfully institutional living has gone and been rid of! But has it really gone in NZ? I thought it honestly was until I went on placement to the lockdown unit. I would argue that institutions are places in which decisions are made on behalf of the inhabitants about any aspects of their lives, yet this is definitely still occurring in places. I saw firsthand the little choice, freedom and rights the people with intellectual disabilities had in the lockdown unit. Yes I understand these people are in there for the safety of themselves and others but how can it be ethically appropriate as soon as these individuals get a little restless and frustrated they have drugs thrown down their throats?

I feel there is many changes still needed in the way healthcare and treatment occurs with people who have an intellectual disability or mental illness. More focus is still needed in creating an inclusive society that allows equal choice to all individuals. I believe stigma still and will always need to be a major focus, as this is a major influence as to how people get treated and continue to be treated!

I hope you have enjoyed reading my blog and that I have stirred up some thoughts that you may continue to ponder over. Would love to hear your thoughts, feel free to comment!

Community Living

O’Brien, Thesing, Tuck and Capie (2001) state that people, irrespective of their degree of disability, are sure to do better in the community on most measures and do no worse when it comes to challenging behaviours. Improvement comes in areas of increasing independence, engaging in meaningful activities and creating social relationships. There is a high predominance of evi­dence that individuals moving from institutional to community settings consistently develop their daily living skills to a higher level than their matched peers who remain institutionalized or that they themselves had developed prior to leaving the institutional settings (Lakin, Larson & Kim, 2011). Although community living seems to afford increases in the quality of life for individuals, there is still much more room for improvement within community residential services. These improvements can be addressed through, according to Fujiura (2006) systematic  training approaches that teach staff and family members the attitudes and competencies required for people with intellectual or mental illnesses to be manage safely and as independent as possible in the community. As Fujiura (2006) suggests, “the community must do much better” (p. 374).

References:

Fujiura, G.T. (2006). Lessons drawn from the critique of the Hissom closure evaluation. Mental Retardation,44(5), 372-375.

Lakin, C., Larson, S., & Kim, S. (2011). The Effects of Community vs. Institutional Living on the Daily Living Skills of Persons with Developmental Disabilities. Evidence-based policy brief. Retrieved from http://www.evidence-basedpolicy.org/docs/evidence-based_policy.pdf

Lemay, R. (2009). Deinstitutionalisation of people with developmental disabilities: A review of the literature. Canadian journal of community mental health, 28(1), 181-194.

O’Brien, P., Thesing, A., Tuck, B., & Capie, A. (2001). Perceptions of change, advantage and quality of life for people with intellectual disability who left a long stay institution to live in the community. Journal of Intellectual & Developmental Disability, 26(1), 67-82.

Deinstitutionalization

Anderson (2010) describes deinstitutionalisation as ... “the process of re-establishing people with intellectual disability in a community through community based services". Another way to describe it is the relocation of people that are supported by an organisation or service into another setting, where they have a greater opportunity to experience the same activities as others within that setting.

The deinstitutionalisation movement within New Zealand began in the late 1980s following the government policy to support the closure of long stay hospitals with the development of community services/resources and the understanding that disabled and ill people have equal rights (The shifting currents, 1986). Patients were encouraged to take part in their own treatment and recovery approach. The community at this time become more accepting of those people with an illness or disability and manageable patients were discharged into communities. These patients were treated under the umbrella term ‘community care’ in which organisations developed and provided alternatives to institutional care, they helped in changing the public’s attitudes and built international links (Brunton, 2011).

Deinstitutionalisation came about through individuals grasping an understanding of the negative effects institutional living was having on people. Blatt and Kaplan (1960) were influential in laying the foundations for deinstitutionalisation, as they pointed out that residents living in asylums lacked opportunities for the development of appropriate daily living and self-care skills. They also exposed the degradation people with mental retardation experienced within institutions. Society became more accepting an understanding that these people do belong within the community and have just as much right and choice as everyone else.

 Through these individuals transferring and living in the community there has been many reviews and literature towards supporting the positive outcomes this has created for them.  Emerson and Hatton (1996) reported the move into the community was associated with an increase in engagement in everyday and community-based activities, personal development and a reduction in “challenging behaviour”. It provided clients with social engagement, meaningful occupations to participate in and allowed them equality and choice. O’Brien et al. (2001) when reviewing the quality of life of individuals from New Zealand in the community stated “it to be significantly higher, on average, at the time of the interview than when in the institution” (p. 76).

 References

Blatt, B., & Kaplan, I. (1960). Christmas in purgatory. Boston: Allyn & Bacon.

Brunton, W. (2011). Mental health services - Lunatic asylums, 1840s to 1900s'. Te Ara - the Encyclopedia of New Zealand. Retrieved from http://www.TeAra.govt.nz/en/mental-health-services/2

Emerson, E. B., & Hatton, C. (1996a). Impact of deinstitutionalisation on service users in Britain. In J. Mansell & K. Ericsson (Eds.), Deinstitutionalization and community living: intellectual disability services in Britain, Scandinavia and the USA (pp. 169–184). London: Chapman.

 O’Brien, P., Thesing, A., Tuck, B., & Capie, A. (2001). Perceptions of change, advantage and quality of life for people with intellectual disability who left a long stay institution to live in the community. Journal of Intellectual & Developmental Disability, 26(1), 67-82.

 The shifting currents: a commentary on current issues (1986). Mental Handicap in New Zealand, 11(1), 5–13.

Benefits and Barriers of Institutions

As previously described in my other posts, there were and are still many barriers and negative outcomes for people who lived in institutions. Collins 1993 describes institutional characteristics that are negatively valued as:

... denial of humanity and individuality
... no personal space
... no privacy
... little choice
... little comfort
... little personal safety
... few possessions
... no dignity
... pauperized
... dependent                                                                                                                                 

 ... Are treated as objects (numbers, interns, defectives ect)
... Settings and activities are structured around staff  not residents
... All residents are all treated and dressed the same

Although there are many negative outcomes of institutional living, there are people who also see the positives of people living in this way. Ramon (2011) explains that there are positive and benefits of residing in an institutional environment:

Positive Outcomes

... people first
... respect for the person's
... right to self-determination
... right to be independent
... empowerment
... High expectations
... Settings and activities are structured around residents
... Residents are treated as individuals
... Less structured daily patterns of communal living

References

Collins, P. (1993). Supporting residents in long-stay settings. In I. Norman & S. Redfern (Eds.), Mental health care for elderly people (pp. 501-526). London: Churchhill Livingstone.

Institutions/Asylums- What were they like?

Imagine being labelled an idiot, lunatic or an insane person? Well this was the case for individuals who lived with any form of intellectual disability or mental illness in the 1900’s. These so called ‘Insane or idiotic people’ were removed from society and put into large prison like long-stay institutions, in order to provide care and medical treatment to get rid of the illnesses these people were living with. Can you imagine being put into one of these large institutes, locked away because you were different, had depression, anxiety, were struggling to cope? I mean doesn’t everyone experience this?

By living in institutional care, individuals were cut off from the community; their rights, choices and freedom were stricken from them and they were made to feel worthless. During this time patients were admitted with poor reason; patients experienced unsanitary and overcrowded conditions; there was lack of communication; physical violence and sexual misconduct and abuse occurred; there was inadequate mechanisms for dealing with complaints; pressures and difficulties for staff, within an authoritarian hierarchy based on containment; patients lived in fear and humiliation in the misuse of seclusion; over-use and abuse of Electroconvulsive therapy, psychiatric medications, and other treatments as punishments, including group therapy, with continued adverse effects; lack of support on discharge; interrupted lives and lost potential; and continued stigma, prejudice, and emotional distress and trauma. Even though this occurred within these institutions, they were still seen as the most efficient way to deal with these ‘abnormal people’ at the time.

New Zealand’s first institution was built in  Wellington- Karori (1854), followed by Dunedin and Sunnyside, Christchurch (1863), the Whau, Auckland (1867), Seaview, Hokitika (1872), and Nelson (1876). The next generation of buildings were in more remote areas and were much larger, for example Seacliff, near Dunedin (1879), and Porirua, near Wellington (1887), with Cherry Farm, near Dunedin opening in 1954 (Brunton, 2011). These large buildings were surrounded by their own farms and gardens. Patients were expected to work both inside and outdoors to the extent they were able, helping with domestic chores, farming and gardening. For some individuals these places were home, as they had no connections with family, it was a familiar environment to them and for some, they had grown up-living their whole lives inside their, not knowing any different. For others, they report not protesting or resisting treatment as they wanted to protect others around them, not wanting to inflict guilt onto their family who had put them there. 

This is a great documentary from the BBC which provides an in depth analysis into asylums and institutions and provides interviews from the individuals who experienced firsthand living in these places. I recommend you all find time to watch this as it clearly articulates how it was for individuals who did reside in these institutions.

Did this documentary blow all of you away? It certainly did for me; I can’t believe and am still astound at the treatments used on patients, especially removing and the burning of parts of the brain. Shocking! Did this move and overwhelm you the way it did me???

Reference
Brunton, W. (2011). Mental health services - Lunatic asylums, 1840s to 1900s'. Te Ara - the Encyclopedia of New Zealand. Retrieved from http://www.TeAra.govt.nz/en/mental-health-services/2

WELCOME!

I am a 3^rd year Occupational Therapy student at Otago Polytechnic. This blog has been created for assessment purposes in order to explore institutions and community housing, understanding the reality of the way people who have an intellectual disability or mental illness now live or have lived previously.

The idea of this topic came about after a recent placement in which I was in a lock down unit for people with intellectual disabilities. Through experiencing and being a part of that unique environment, I was taken aback as I wasn’t aware that places like it existed. It got me thinking of how little knowledge I have on the way individuals with disabilities and mental illness previously lived and how it compares to now. I’m sure this curiosity I have is shared with others wondering the same thing, especially the younger generation as these days I hardly hear little mentioned about what things used to be like. I hope you all enjoy reading my blog as I work to answer the questions I have on this topic, at the same time hopefully answering all of yours!

Happy reading :)