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.