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Institutionalisation, deinstitutionalisation what's the difference

What’s the difference between institutionalisation and deinstitutionalisation?

Deinstitutionalisation has been described as ... "the process of re-establishing people with intellectual disability in a community through community based services".
Another way to describe the process 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".

In the above descriptions, the person still uses the support systems that are provided by an organisation or service, or within the disability arena. Issues of funding, responsibility, accountability, staffing and personal care, transport and medical are the responsibility of the organisation or service. The values, behaviours and expectations (institutions) of the organisation or service provide the institutions of the support used in supporting the person. The goal is to facilitate the development of valued relationships and networks within a community, where a person is valued as a part of that community.

When moving to another setting, the particular institutions of the setting may become more important than the institutions of the organisation or service that provides the service. Any setting where people live, work or play has its own particular institutions. They can't be avoided.

Think of any activity you are involved with.
Think of the various institutions that may be involved with the activity.
What are the various outcomes that may be associated with the activity? 

To deinstitutionalise can then be then thought of as a process of consciously or unconsciously adapting or modifying a person or people, their values, behaviours, the social structure, and the environment in which they participate. What is actually happening is a process of reinstitutionalisation, where, the outcomes change from negatively valued to positively valued. While institutionalisation is often referred to the situation of people with disability (especially people with a mental condition), it is certainly not limited to this group.

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.

When moving from one community to another, we take on the values, behaviours, responsibilities and expectations (institutions) according to our particular role within the new community. A father in one community may be a teacher, or a student in another.

The armed forces are a good example, where the members are conditioned to behave according to a strict regime. A bikie gang epitomises the antisocial culture, where the establishment is seen as the enemy. Drugs, violence and antisocial behavior characterise the members. However, they have a code of values, ethics, conduct, as well as a strict hierarchy. Prisons, for example, are designed to provide positive outcomes for their members, but how often do we see these people learn the cultures and values of the others around them? This process of institutionalisation also happens within ethnic communities, hospitals, nursing homes, universities and other places of learning, religious communities, sporting communities, organisations etc. This does not mean that we should do away with these groups or services, or that they are bad, evil places (although some may be - a value judgment?), on the contrary, these groups and services have valued roles and are valued within the wider community (debatable).

The Australian Institute of Sport is an example of an accepted institution that people aspire to becoming a part of, yet the institute shares most of the characteristics that are ascribed to people that were placed in asylums etc.

The athletes:
... are separated from others in the wider community
... are poked, prodded and their every move is monitored and recorded
... are restricted in what they can eat and drink
... have to get up and go to bed at certain times
... training routine is rigorous
... are told what they can and cant do
... are confined to the facility
... whole life within the institute is structured around training to be the best

We also see this happening within the football community where the players lives are institutionalised by the formal/informal cultures, objectives, hierarchies, goals, policies, constitutions, unwritten laws or codes of behavior etc. of the Association.

The players:
... symbols of authority
... are professionals that are bound by the code of the club
... follow a strict regime of the club
... may have a high profile within the football community
... their every move is recorded, dissected, analysed and discussed
... they aspire to play in the national AFL comp, win player of the year etc.

The characteristics of a university (learning institution):
... authoritarian hierarchy
... symbols of authority
... restricted areas
... strict code of behaviour
... division of members into groups
... set roles, behaviours and expectations
... group activities

The same thing happens within extreme religious communities, and to a lesser extent in other communities that are organised around a particular agenda. Just because devalued people may spend their whole lives in institutionalised care does not mean that they are any more or less institutionalised than the athletes/players/students in the examples above. It does mean that the institutions of the athletes/players/students have positively valued outcomes, and the institutions of devalued people living in the asylum have negatively valued outcomes.

Quite often we see ex-members of a community are still institutionalised in the institutions of the community that they were a part of. Members of the armed forces, for example, can not adjust to living in a "civilian community". This also happens when people move from one ethnic community to another ethnic community. They may be so institutionalised in the old culture that they can not adjust to the institutions of the new culture. Students that are institutionalised within the education system may also find it hard to adjust to the "real world" and find security within the education community (perpetual students etc.). Anyone that moves from one community to another has to find all the local facilities, build new networks and relationships within the new community, understand the local language, the customs, values, behaviours, attitudes and expectations, the culture (institutions) of the community.

We also see a merging of cultures and institutions within a community where different groups live together and share resources. Where these new cultures and institutions are not seen as threatening or divisive they are often used to the advantage of both groups. When these new cultures and institutions are seen as threatening or divisive, there may be some conflict, violence or discrimination between the groups. The members of one group may be devalued as a group, separated, marginalised or disenfranchised. There is usually some characteristic of the group that is used to justify there treatment (assigned devaluing labels etc.) that allows the community to treat the members of the devalued community as different. They may be attacked, discriminated against, or just ignored. Fundamental differences between cultures and communities has resulted in riots, civil conflicts and deaths, where members cannot resolve their differences. These differences may become so institutionalised into the culture of the society in which these communities live, that generations pass down these attitudes to new generations so they become a normal part of life. This can happen to any person or group, where they are seen as different, or are a threat to the community as a whole.

Think of a setting/activity, and the members of the community within the setting/activity. Think of the institutions of the setting/activity as the paint that covers the setting/activity. We can choose to paint the setting/activity black (outcomes are negatively valued) or white (outcomes are positively valued), or even grey, where the outcomes are a mix of negative and positive values that are specific to the needs of the setting/activity.

"Social Role Valorisation  is intended to address the social and psychological wounds that are inflicted on vulnerable people because they are devalued, that so often come to define their lives and that in some instances wreak life-long havoc on those who are close to them.
SRV does not in itself propose a 'goal'. However a person who has a goal of improving the lives of devalued people may choose to use insights gained from SRV to cause change. They may do so by attempting to create or support socially valued roles for people in their society, because if a person holds valued social roles, a person is highly likely to receive from society those good things in life that are available or at least the opportunities for obtaining them. In other words, all sorts of good things that other people are able to convey are almost automatically apt to be accorded to a person who holds societally valued roles, at least within the resources and norms of his/her society". (Wikipedia: Social role valorisation)

"The major goal of SRV is to create or support socially valued roles for people in their society, because if a person holds valued social roles, that person is highly likely to receive from society those good things in life that are available to that society, and that can be conveyed by it, or at least the opportunities for obtaining these. In other words, all sorts of good things that other people are able to convey are almost automatically apt to be accorded to a person who holds societally valued roles, at least within the resources and norms of his/her society." (P.1) ... "For example, while SRV brings out the high importance of valued social roles, whether one decides to actually provide positive roles to people, or even believes that a specific person or group deserves valued social roles, depends on one's personal value system, which (as noted above) has to come from somewhere other than SRV." (P.4) (Joe Osburn: An Overview of Social Role Valorization Theory)

It could then be argued that by applying the principles of SRV to the particular setting that is supporting people with disability, there is a conscious process of changing our values, behaviours, the social structure, and the environment in which we participate, and that all participants are being institutionalised, in behaving within a defined set of goals, values, roles and behaviours that promote valued roles for disadvantaged people.

Institutionalisation is all about "building in" these new participatory decision-making processes so that they become, for all stake holders, the normal "way of doing things". (Tools to Support Participatory Urban Decision Making Process)

From the above, it can be seen that deinstitutionalisation is the process of changing the outcomes of a setting from a negative value (black) to a positive value (white).

Negatively valued outcomes  :  low expectations, conform, structured around the needs of the staff etc.
Positively valued outcomes  :   high expectations, individual, structured around the needs of the residents etc.

It could then be argued that disability service providers today provide the same, or a similar model of care as the institutions of old, and the only difference is that the outcomes of the service provider today are positively valued (or at least by the supporters of the current model of care).

From the above it can be seen that institutions themselves are never good or bad. While they all contain the same or similar characteristics, it is the values of the outcomes that determine whether the institution is good or bad.
For the athletes who live in institutional care the goal is to represent Australia.
The players of the football club have a goal of playing in the finals.
Members of religious institutions have a goal of becoming closer to God.
Education institutions have a goal of providing skills and knowledge to its members.
Corrective services have a goal of rehabilitating its members.
The goals of nursing homes and other facilities that support people with high support needs is to provide the best care that is appropriate to the person.
The outcomes of these institutions are seen as positively valued.

The goal of nursing homes, Asylums (a safe place) Psychiatric hospitals etc. were originally intended to provide a better quality of life for the residents, however over time these communities became larger and larger. The outcome was that the residents of these communities lost a lot of their rights and normal living conditions. The wider community also contributed to the conditions that these people lived in by promoting them as deviant etc. (Bethlem Royal Hospital etc.). The outcomes of these institutions are now seen as negatively valued. By changing the outcomes of these institutions within these buildings from a negative value to a positive value, we change the conditions within the buildings, where the residents have a better quality of life.

Alternatively we can place people with high support needs (severe disability, aged etc.) in other community based services that are designed to provide a better quality of life (deinstitutionalise). People with high support needs may find it difficult to develop these new networks and relationships and become isolated. The aged may lose the support networks that they had (their families have moved, their friends have passed away etc.). Depending on the person's needs, the person may be dependent on one or more services (transport, home help, personal help, financial help, medical needs, skills development, special equipment etc.) that are not available in the wider community. The person then has to rely on an organisation or service provided that has the resources to support the person, The organisation or service provider has its own formal/informal cultures, values, expectations, objectives, hierarchies, goals, policies, constitutions, unwritten laws or codes of behaviour etc. (institutions) that the person has to fit into. Whether the person is advantaged or disadvantaged by these institutions depends on whether these institutions have positively or negatively valued outcomes.

Think of any activity you are involved in:
what are the objectives of the activity?
what is the structure of the activity?
what are your relationships within the activity?
what are the formal and informal beliefs, values, roles, expectations and behaviours within the activity?
are the institutions of the setting and the activity positively, negatively valued or a mixture?

Full circle
Is this the future of services that support people with high support needs (aged, severe disability etc.) ????

While asyulms were origionally a place of safety or retreat from society, they became places of hardship, deprivation and depravation. What started as small hospital facilities soon became large buildings that supported hundreds of people. Built around a medical model of care, a culture evolved that enabled a small number of people to support a large number of people. Social policy was to hide these groups behind walls, where society was protected from the activities that happened within those walls. There has been a great deal written about the values, behaviours and attitudes of the system that supported the residents of these buildings within society. Because they were in long term institutional care, the term "Institution" referred to the building, the culture and the outcomes of the building and the culture. While the charasteristicts of this institutional care was similar to other institutions, the outcomes were different. Today, we see small services evolve into organisations that support different groups within society. Organisations are getting larger to cope with increased demand for services. As an organisation gets larger, more resources are needed to support the organisation. Things wear out and need replacing. New equipment and technology replaces old and outdated equipment and technology. Direct care staff need to be increased to meet the needs of its clients, which means more support staff are needed to meet the needs of the direct care staff.

The organisation also has its own needs in fulfilling its role in providing for the needs of people with disability.

If the service provider can not provide for its own needs or the needs of its clients, the culture and institutions of the service provider change,
so that the basic needs of its clients can be met, and other needs that are considered as not important are not met.

For example the normal staff ratio may be 1 staff to 4 clients. As the service grows, and the service can not get the extra staff because of a lack of funding, skills or available workforce, then the service has to prioritise needs as well as ration resources. Because the service provides direct intervention in supporting its clients there may be no other service that can provide support. The result is that the service may become the Asylum that Goffman, Wolfensberger and others wrote about in the past.

This is most noticeable in nursing homes where costs increase and suitable staff are scarce. The nursing home tries to cut costs and ration resources and as a result the clients are not getting all their needs met. Hospitals are also suffering from a lack of skills and resources. People are not getting the proper care, patients are left in corridors because of a lack of space, etc. etc. This also happens within disability service organisations where the needs of the organisation become more important than the needs of the clients. Administration, OHS, payroll, maintain, staff training, policy development, volunteer coordination, area coordination, medical staff, transport, recreational, employment, direct support staff, relief management, relief staff - just to name a few roles that the organisation may have - may mean that there are 200+ people supporting 100 clients.

When providing the most appropriate care for people with high support needs ...
1) The community is not where the person is living, but where the person participates, shares experiences and has valued relationships with others.
2) People with high support needs (severe disability, aged etc.) will always need support structures as a part of their lives.
3) The amount of participation in a community (living, education, employment or recreation) is directly related to the skills and resources of the person, and, the skills and resources of the community that the person wishes to participate in.
4) Institutions are going to be around in one form or another whether we like it or not, It is the way that they are used that is the problem.
5) The institutions of a society towards a particular group determine the way the group participates in society.
6) The institutions of a particular government department, organisation, profession or service define the way the person is supported within that society.
7) Facilities that support people with high support needs do not need to be the nursing homes or prisons in the sense that they are today, but can become warm inviting community places that offer a range of services to the community, as well as be a part of the wider community within that society.
8) People with high support needs are a minority group in our society, and will have the same problems as other minority groups in being a part of society.

Peter Anderson