The concept of De-institutionalisation as applied to today

                                           (Changing attitudes, empowering communities)

Footnotes
Notes and references




The concept of De-institutionalisation as applied to today

Generally, people with a mental illness, disability or condition, or have a severe physical, disability or condition (high support needs) are well looked after today. The times have changed mainly through the principles SRV. These people (as a social group) are probably better looked after than other groups such as the aged. the poor etc (this is speculation based on empirical observations). Although there are still some communities, groups etc that may treat people with disability as deviant etc, these attitudes are on longer reflected in the society in which we live. While the debate rages over the best policies and practices to use in providing the best outcomes, I think that we are all agreed that they are no longer "devalued" in our society today.

The goal of the human services is to make a positive difference in a person’s life. There are things we can change (values, attitudes, behaviours, cultures etc) and things we can't change (available resources etc). By enabling people to fulfil their needs, develop community networks, participate in activities and share experiences within their community, they have the opportunity to become valued members of their community. Conversely, by enabling the community to fulfil the needs of its members, to foster and develop personal networks within the community, to facilitate strategies, solutions and activities so that all members have the opportunity to participate in those activities, and connect with other members through shared experiences and valued relationships, the community has the opportunity to become valued by its members as well as other communities that it is a part of.

Institutions and institutionalisation has been used to describe the buildings, social structure, conditions, and expectations (The Origin and Nature of Our Institutional Models - Social Role Valorisation) that people who have an intellectual or physical disability lived in. Most of the literature describes their circumstance as dehumanising and devaluing. While it is true that conditions were miserable for people with a disability, conditions were also miserable for other groups of people such as the sick, aged, the poor and destitute, criminals etc. It is also true to say that people with an intellectual or physical disability have not been treated the same in all cultures and societies throughout history. There are some examples where this group has been well cared for by the society in which they live.

We may see these conditions as primitive and barbaric these days, but it is important to remember that they did the best they could with what they had. They had none of the conveniences that we take for granted these days. These days we have technology that they could only dream of one hundred years ago. Just as the horse and buggy, oil lamps for lighting and gas for heating was considered state-of-the-art in technology then is considered old fashoned, outdated and archaic now. Drugs and other technological advances and innovations that have improved their lives and enabled them to participate more in society were non existant then.

While conditions in the past may have been bad for people with a mental or physical disability, they were also bad for all members of society. Hygiene, shelter, and general living conditions were poor as compaired to today, and while we see the treatment of these disadvantged groups as uncivilised, we need to remember that they did the best with what they had. If fact, these groups were much better off  in the "institutional care" as described by Goffman, Narje, Wolfsnsberger and others, than they would have been on the streets without these institutions.

The problems were more to do with the setting (available resources), management, culture, and the expectations, that they lived in, rather than the fact that they were institutionalised. Institutions are a part of our everyday lives: in the family, cultural and ethnic groups, religion, sport and education etc.

What judjements and criticisms will society in a hundred years time have on the way we treat disadvanted people today ?
I suspect that the answer will be ... "very poorly".

People with high support needs will always need a highly structured, and to a certain extent supervised, environment that accommodates their special needs.
Imagine you were on a package holiday tour that you purchased through a travel agent (service provider), in a country that you do not speak the language (China, for example). You are in a strange community, you can not communicate with the members of the community, you do not know the customs or the laws and are dependent on your guide and the service provider for your needs. You are given an itinerary of the places you are going to visit, a list of the places you are going to stay and the times you are expected to be at each place. Your tour guide makes sure you are where you are supposed to be, and is responsible for your welfare. Your every move is recorded, you are restricted in what you can and can't do. You are dependent on the service provider for your accommodation, meals, recreation, transport etc. You are living with, and sharing the same experiences with the same people for the entire holiday. Your individual needs become less important than the needs of the group. You may meet some of the locals who treat you with dignity and respect, participate in local activities that are co-ordinated by the service provider, stay at the best hotels, eat the best food and travel in the best style, however the fact remains that your life is supervised and you have little choice in what you can and can't do. While the holiday may be an enjoyable break from your normal routine, you are fortunate in the knowledge that the holiday is for a short amount of time and that you have your own community to return to.

Unfortunately, people with high support needs have little choice about their situation. They need specialised support and structured environments (just as the packaged tour is a structured environment), and while we can make things more comfortable for them (good accommodation, food, specialised equipment, access to activities etc), they will always have these support structures as a part of their lives.

For example, a person who is restricted to a wheel chair for any reason, would need various modifications to his/her home to suit the person's needs, is restricted in what he/she can do and the places he/she can go. The person may need some assistance in transferring, washing or general home chores. The person may not be able to drive a vehicle and need specialised transport services. A person in this situation would be dependent to a greater or lesser extent (depending on the needs of the person) on a family member, hired help, a service provider or a volunteer. As in the above example, the person has to fit in with the people that provide the support or service, and any other service users.

A person with a severe intellectual or physical disability may be supported by a service provider, and is a part of that community. The person may be valued, and have valued roles within the service provider, and the other communities that he/she is a part of. The service provider may have a similar role as the tour guide above, where the clients are supported in the activities of the wider community, but the community that they are a part of is the community of the service provider. The amount of support that each community can provide for the person depends on the skills and resources available within each community that the person participates in.

By understanding the roles of Government, the community, institutions, organisations and service providers, the buildings and finally Social Role Valorisation (SRV), strategies and solutions can be found so the person has the opportunity to participate in activities and share experiences, develop permanent connections and relationships, and have valued roles within each community that he/she participates in.

When providing the most appropriate care for people with high support needs ...

Explanation of terms  (Top)

Culture, Society and the Institution  (Top)


The culture of the Society
The culture of the Community
The culture of the Institution






People with disability (inclusive definition)  (Top)

Disability is generally defined by some bureaucratic process as ...

"Disability is lack of ability relative to a personal or group standard or spectrum. Disability may involve physical impairment, sensory impairment, cognitive or intellectual impairment, mental disorder (also known as psychiatric disability), or various types of chronic disease. A disability may occur during a person's lifetime or may be present from birth." (Wikipedia: Disability)

The above definitions are based on a medical model, and while appropriate for medical and legal purposes, only highlights (reinforces community perceptions) the fact that people that have a physical or intellectual disability are different from others and therefore maybe treated as sick or deviant (The Origin and Nature of Our Institutional Models) (The Individual and Social Models of Disability) (Psychological and social impact of illness and disability). Deborah Kaplan (The Definition of Disability) has written an interesting paper on the vagaries and various ways disbility is used in society. The problem is that most definitions treat the group, rather than the individual.

The social definition refers to society and all things within society. The social definition also has problems in blaming society in not providing the infrastructure etc in supporting these groups.


The main purpose of a definition it to explain the meaning so that it can be understood within the context of the structure. An individual/medical definition therefore refers to the person and the science of medicine. A person, for example, may be disadvantaged in one situation, and not disadvantaged in another situation because of the different needs within each situation. One person may be disadvantaged, while another person with a similar disability may not be disadvantaged. It seems to me that there is enough evidence to suggest that both definitions do not work properly in the process of enabling these people to live more normal lives in society (Disability 10 facts or fallacies?), (Toward an Inclusive Definition of Disability).

There is much discussion about an individual identity, a social identity, a collective identity, a group identity, racial-cultural identity etc, etc, etc, that is seems that we have lost the plot. By defining people with disability as different, WE ARE TREATING THEM AS DIFFERENT. Have you ever asked a Canadian "What part of America do you come from" ? What has been the reply ? Chances are that it cannot be repeated here. What about the person ? Does it really matter if the person is Canadian, American, African, black, white or orange with blue dots ? What about the person's needs ? How is the person going to fulfil his/her needs ? How is the person disadvantaged in not being able to fulfil those needs ? What roles does the community have in fulfilling the needs of its members ?

Rather than looking at the disability, we should be looking at the needs of the person. The above definitions focus on the disability within the person or society, rather than the person's needs within each community that the person participates in. In most cases the disability may have a small impact on a person's life and the person may not be disadvantaged in other areas. The disability may also have huge implications in all areas of the person's life. If I say to you "This person has a disability", you will need to know what the disability is and how much support the person needs. Does the person have high or low support needs ? What can the person do ? What can't the person do ? You need to know more about the person than his disability so that you can support the person in fulfilling his/her needs. You also need to know about the community and the setting that you are supporting the person in. Are you supporting the person in a home by himself or with others, or in a school, work place or in a recreational setting ? What skill and resources does the person need ? What skills and resources does the community need ?

Disability is also a personal thing. How a person copes with the condition mostly depends on the support from family, friends, neighbours, at the shops, at school or any other community that they are a part of. Whatever Gov policies, laws etc are put in place, or the social obligations of the wider community has in accepting people with high support needs, this does not automatically mean that the person becomes a part of that community. In a shopping centre, for example, if I cannot communicate to the shop assistant, or I cannot read the shop signs, I then become dependent on others to fulfil my needs (to buy some food etc). If there is no one to help me, or maybe steals my money, or thinks that I am different, I become disadvantaged in not being able to fulfil this need. I may try to get someone to help me or try to get some attention to my situation, but the chances of being seen as a nuisance are great. My own experience in supporting a person with an intellectual disability is testimony to this outcome. He has a limited understanding of money and the value of things that we take for granted. He has no sense of time, and can be very friendly to strangers (and gets aggressive if they do not take time to talk to him). I think of him as being "Streetwise" in the sense of having the some basic skills (strategies) in surviving in the wider community, but lacks the knowledge behind those skills.

I propose to use a more inclusive (community) definition.

Any person that has a particular characteristic that disadvantages
their ability to fulfil their needs, actively partake in the normal activities
of their community, or devalues their identity within their community.

The above shows that the disability is not the problem. We all are disabled to some extent in our normal lives, for example, if the power suddenly went out in my home and I can not do anything to fix the problem, I am disadvantaged in that I do not have the skills or resources to fix the power. I may be able to call the neighbour or a service provider to fix the problem, which means that I am no longer disadvantaged. However, I still have that characteristic (that I do not have the skill to fix the power), but I am not disadvantaged by it. If there were no support available to fulfil this need, then I will be disadvantaged in that other needs, preparing meals, washing etc may not be fulfilled. This may lead to other needs not being met that may result in all sorts of other problems. Even a simple thing as not having a mobile phone is considered as a disability these days.

Alternatively, if I wanted to drive in my car to an appointment and can not because the car has broken down, then I am disadvantaged in that I can not get to the appointment, if there is no community service that supports this need. A person with challenging behaviours or restricted to a wheelchair is in the same situation.

How many times have you sat in front of a blank computer screen ? You are helpless. You need to get to your e-mail. You need to get to your bank account, or the latest stock prices. What do you do ? The computer and the internet are so much a part of the lives of young people these days, and anyone that does not know even how to turn one on is seen as different and misses out on those communities that seem to be a major part of their lives (becomes marginalised).

The implication is that people that do not have the skills or resources to fulfil a need, and can not get the support may be seen as different to others (devalued) because those needs are not being filled. A person with a severe intellectual or physical characteristic that disadvantages him/her in their normal activities will need more support in fulfilling those needs. If the person can not get any support to meet the particular need, then that person is disadvantaged in not being able to fulfil the need.

Any dialogue in the discourse of people with high support needs and the community, needs to be positioned in the context of the person and the community. What are the needs of the person ? What are the needs of the community ? How can the needs of the person be balanced with the needs of the community ?

By looking at disability as needs based, rather than located in the person or society,
we can find strategies to fulfil those needs within each community that the person participates in.

The above also suggests that it is possible for any person to be disadvantaged (devalued) for any reason in any community. Some studies were done with school children a few years ago where the class was divided into groups (Blue eyes Brown eyes). The results clearly showed that people become disadvantaged quite easily. Just as Muslims were targeted a few years ago because they may be terrorists, all Muslims became disadvantaged. The same thing happened to the Jews and any number of other groups of people. The same thing can happen in any community. If I wear my P.J's to work (which has happened in America) I am seen as someone who is different. In some communities a particular characteristic can be an advantage. While I was travelling around the Northern Territory I certainly felt like a second class person in the shops. I spent some time living in an Aboriginal community and it took a while to become accepted as a part of their community.

Within society we see all sorts of disadvantaged groups. They all have their own niche within government bureaucracy. The unemployed, elderly, children, drug rehabilitation, people with disability, just to name a few, all have their own policies, procedures, criteria for assistance etc etc etc. We need special services just to assess the person's eligibility for a service and to sort out the maze of paper work. It can be quite daunting for a person to even know where to begin.

Just because I may have a condition that is defined under the Disability Services Act does not automatically mean that I will receive support. I may be disadvantaged in that I do not fit into the criteria (age, weight, income, personal supports, gender, type of disability etc) of any suitable service, or that the service does not have room and I am put on a waiting list.

All groups are disadvantaged to some extent with regard to health care. Do I have private health insurance ? Is my condition classified as elective treatment ? How long do I have to wait for treatment. What are the legal implications if I am over weight or have a some other pre-existing condition or am allergic to some medications etc.

A person or group may also be disadvantaged in that there is no service (skills or resources) that supports their needs.

In remote areas where there are no services,
they have to rely on their own networks and support mechanisms or others in the community for support.

If the person or group does not have any support:

A lack of skills and resources in the community also means that the person may be seen as:

If fact some members of these groups are often placed in the same settings today (both literally and figuratively) that Goffman, Wolfensberger and others wrote about in the past.

Sometimes people are separated for their own good and in the best interests of their community ...

The above can happen in any place at any time where the community does not have the skills and resources to look after their needs.

Alternatively, having a disability does not necessarily mean that the person is disadvantaged, sick or even deviant. The Blind and Deaf are examples of communities do not see themselves as disadvantaged. There are also people that are amputees that have their own communities that support each other and are able to live independent and fulfilled lives.

It could be then argued that the concept of "disability" is fundamentally an objective value that is positioned within the social contexts of the social constructions that determine the policy and decision making processes that are a part of the society in which we live. Blindness, for example, in an objective definition based on a measurement determined by some bureaucratic process to assess a person's eligibility or access within that definition. We see people being grouped into various classifications that allow or disallow entry into a service. Barbara M, A, (in Gary L. Albrecht, Katherine D. Seelman, Michael Bury, 2003, Handbook of Disability Studies, P.97) describe the various contexts that the term is used. These may be useful within the various legal, medical, social, intellectual or health arenas within society, but unfortunately, these paradigms cannot measure how the person is disadvantaged in fulfilling his/her needs. For example, I ring an electrician to fix the power and am told that I am not eligible for a subsidy for the service because I do not have a disability, even though I cannot pay ? Whether I have a disability (as defined by a government department) or no disability, the fact is that I am disadvantaged in that I may not have enough to pay for the service.

The role of the community (Top)

Communities within Communities:  (Top)
Societies are more than a bunch of people stuck together in the same space and time. They are organised into groups that have various functions within society. These functions are organised into various roles that fit together like a clock or a play. These groups can be described in any number of ways according to the relationship of the group with other groups in society.

These groups provide a way to understand our relationships with each other and the others around us:
(These groups can be reorganised any way according to the perspective of the user)

Other generic or eclectic groups are

... Communities, Societies etc
... Organisations
... Families
... Personal
... Private
... Public
... Social
etc

More specific descriptions of these groups describe the particular function of the group within a group or society.

Generally, most people define themselves as a part of a community, in the most generalised form, within society, i.e. the group, team or club is a part of the community, or, the community is a part of the group, team or club. The expression "Community", like family, is also more personal in that there is a greater sense of permanency than a group, team or club. I'm sure you could list 4 or 5 communities that you are a part of: your family, where you work and socialise, you may go to school or be a part of a community group. Expressions such as "The world community", "The environmental community", "The economic community", "The European community" etc are common in society today.

Communities are generally groups of people that have something in common. They may live in the same area, share common interests or characteristics, work or play together or just enjoy each others company. They provide something worthwhile to the members in as much as there is a value in being a part of the community.

Communities are about sharing and caring. There is this sense of supporting each other as well being a part of something that is greater than ourselves. We all have particular needs and look to the community to meet those needs. The community provides us with the skills and resources to meet those needs. In a sporting community, for example, we learn the skills and contribute to the facilities that are associated with the sport, and support other members within the community.

Within the sporting community we see clubs that are communities within the sporting community. Each club has teams and groups that have different functions or roles. These provide each club with a sense of direction and purpose. The management is responsible for the coordination of activities and behaviours that strengthen the community. The players are trained and supported in the providing the best outcomes for the club. The supporters are valued for their support etc.

Characteristics of communities:  (Top)

While communities are as individual as their members, they are usually organised or built around a set of principles that allows the members to participate in the community:

Characteristics of a community:

Minority community groups:  (Top)
Within the community we see all sorts of factions, sub groups, splinter groups that do not share some of the characteristics of the wider community that they are a part of. These groups are at the extreme ends of the community that they are a part of. These members may have different values, a different agenda, a particular need, are of a particular age group or disability, or have some other characteristic that distinguishes themselves from the rest of the community.

In the Muslim community we see different groups that have different agendas that are not representative of the Muslim community. In the disability community we see different groups that have different needs. The same thing happens in any community where the members find that they have no real connections within the wider community (marginalised).


Community services and organisations sometimes unintentionally marginalise their members by:

... Providing facilities and services (buildings, transport, staff etc) that are separate from the community.
... Providing living, recreational, educational programs that are within the organisation.

The individual members within the minority group may be further marginalised by the community service or organisation in the fact that they need to fill a set of criteria or characteristics before they can receive support. Members that do not have a support group (or can not get to one) have no real way ot get out of their situation.

Characteristics of minority groups:  (Top)

Minority groups are about groups of people that see them selves, or are seen, as having a particular characteristic that is different from what is considered as the social norm. Minority groups are not about size, but more about the characteristic of the group being at the extreme ends of the social scale of the community in which they participate (marginalised).

Individuals that are at the ends of the social scale tend to be marginalised because:

Characteristics of a Minority Group : (Based on Richard T. Schaefer, Racial and Ethnic Groups 5 - 10 (1993))

Other characteristics of a Minority Group:

... Have a particular characteristic that is not shared with other members in the community.
... Located at the extreme ends of the social scale of the community in which they participate.
... There are generally a conflict of interests between the members of the minority group and others in the community.
... Are marginalised or even disenfranchised.

Community valued roles:  (Top)
The role of the community :
Communities are as varied and individual as its members. The role of the community provides the members with a sense of belonging and purpose. Community roles can be active in providing a service, supportive, where the members support the activities of another community, or a mixture where the members share experiences, resources, skills and knowledge with each other. Communities can be recreational, and provide a social role in enabling its members to participate in various activities, educational in providing its members with knowledge, skills and resources. A community could also be a service provider, an organisation, a local community group or any service that supports people with high support needs (Characteristics of the service provider), or fulfil any other role.

Valued roles provide a common cause or focus for the community. The members develop a sense of pride and purpose in being a part of the community that bond and strengthen the community. The role is valued in a sense that it brings something to the wider community that it is a part of, as well as the members of the community. Valued roles are also about community leadership that is intouch with the community and can create a feeling of importance within the members.

There are lots of other examples of communities and groups that have a valued role.
This can happen in any community where disadvantaged people can be included in activities through various strategies.
By providing a valued role for a community (living, recreation, education or employment) through some form of participation where a person is included in the community (active role), rather than the current model (supportive role), the community learns new values and skills in supporting people people with high support needs.

The value of those roles are influenced by a number of factors:

External:
... Government policy and Government roles within the community
... the function of the community within the community that it is a part of
... how the community sees itself
... how other communities see the community

Internal:
... cultural factors
... learned behaviours
... available skills and resources

By providing valued roles for the community,
Where the community has:
The community has the opportunity to grow and prosper.

The roles of the members of the community :
Valued roles:

Devalued roles:

Community needs Vrs Personal needs (Top)
Community needs:
Communities are just like families in the sense that just because we may want something does not necessarily mean that we are going to get it. Communities are a one size fits all approach where the needs of the community come before the needs of the person. There are rules of engagement, and behaviours and expectations, rights and responsibilities that require us to fit into the community that we participate in.

Rights are not something we should take for granted, they are not given to us on a platter. Throughout history we see that rights are fought for and the battle is ongoing to keep those rights. These so call rights can be taken away from us at any time (and often are) by the society/community in which we live. There is a Universal Declaration of Human Rights, for example, that is put in place to protect a person's basic needs. But how often do we see these rights ignored or circumnavigated when a particular agenda of a country, community or government is propagated. Australia is just as guilty as anyone else in this respect. This happens all the time with groups of people such as the "Boat People", some ethnic groups, people that have alcohol or drug dependency problems etc. These people are generally assigned a devalued label, role or status that serves as justification for their treatment. Only by fighting for their rights can a person achieve anything.

Even within hospitals, nursing homes, hostels, service organisations etc, we see these basic rights (needs) are not being met because of funding issues, staff issues, lack of skills and resources etc.

Minority groups:
These groups are at the extreme ends of the normal community and therefore will have different needs to the rest of the community that they are a part of.

Personal needs:
People with disability (intellectual, physical etc) are disadvantaged in that they often need professional support in fulfilling their personal needs that are not available in the wider community. This professional support can come in any number of forms, shapes and sizes.

The Disability Services Commission (Disability WA) is in the process of developing a Disability Access and Inclusion Plan that is designed to provide a standard of service delivery, where service users receive the most appropriate care in providing the best outcomes for the person. Schedule 1 (below) is a set of principles (rights of the service user) that guide service delivery


As mentioned earlier, these service providers are communities in their own right (Characteristics of the service provider), and have their own needs in providing for the needs of its members. How the needs of the members are met, depends on how the service meets it's own needs.

With any set of rights there is usually a set of associated responsibilities. Just because a person may have the right to decision making, for example, does not give them the right to take illegal drugs, abuse others or jump of a cliff. Just as any other member of any other community is restricted in what they can and can't do, people who live, work or participate in social activities in a community of a service provider are restricted in what they and and can't do.

Community participation and inclusion:  (Top)

A football club, for example, has a strong supporter base. The community of the football club is not only the facilities, players and members, but also the supporters. The football club has a valued role in the wider community and the players and members feel a strong sense of purpose and connection with each other, the club, as well as the wider community. Now imagine that a person with a severe disability was a part of that community, and was supported (through various strategies) by that community in the activities of the community. The person may live in a community of a service provider, or the wider community (a community home, facility, hostel, special home etc) with other disabled and able people. Through the development of a valued role as well as having the skills and resources, within the football club community, the person then has the opportunity to become connected with that community.

Alternatively, if I go to a football match with some valued friends, I am temporarily a part of the football community. I may know some of the others there and have conversations with them. The community that I feel a part of may be my friends and I have no real connection with the others participating in the activity (the players or the others watching the game). I could also be a strong supporter of one of the teams and feel a part of that community. The value I place on the others participating in the activity would depend on which side they supported (friend or foe) and their role in the activity (may be an umpire etc). Through the principles of SRV the person may be treated with respect and consideration and valued as a spectator or supporter at the game (his/her role), however, the community that he/she is a part of is determined by his/her connections (shared experiences and valued relationships), rather than the physical presence within the community.

By providing valued community roles (active role, ownership, SRV etc) at each level of participation, the person then has the opportunity to become a valued member of each respective community that the person participates in, i.e.: the community of the service provider, recreational community, educational community or employment community etc.

"Community Participation and Inclusion. Living in the community does not necessarily mean being included and automatically leading a participatory life. People can live very isolated and segregated lives, simply by having a presence in the community without involvement.
Special Services for people with a disability can further promote their isolation, exclusion and devalued status. The CLP believes that inclusion means to be part of, contribute to and be involved in all the same activities, at the same places, and right beside, all other community members."
(Community Living Project (CLP) - SA)

Think of any community that you may be a part of (shopping, your family, down at the pub, at work etc)

Building values and relationships:  (Top)
Values and relationships are more than the skills or resources that we have. They are about caring and sharing. They are about feelings and experiences with each other. They are about understanding each other and looking past any differences we may have.

Nigel Brooks (Building Strong Relationships - Four Stages of Development, Four Phases of Connection) suggests there are 4 stages in a business relationship:

However the relationship can migrate to back to the divergence phase at any time.

Building blocks towards building values and relationships

... Communication
... Respect for the other person
... Understanding the other person's point of view
... Sharing experiences
... Patience
... Acceptance
... Willingness
... Genuineness
... Assertive
... Diplomatic

Building networks and relationships:  (Top)
There is no magic formula, things do not mysteriously happen. Community participation and inclusion is about the person and the community and building networks and relationships, and supporting those networks and relationships, where the person participates in and is a part of that community.


Above all else

People who do not have the skills and resources to build and maintain their networks are disadvantaged in that they no not have the opportunity to become a part of any community.

SRV is an important strategy in developing networks and relationships.
Often the person needs some training in some skills (life skills etc) so the person can participate.
Community development. By encouraging the community through various strategies (ownership, providing the skills and resources, providing a valued role for the members in supporting the person etc)

A good place to start is with a Local Community Group that has connections with various local clubs and social groups. Strategies can be found where a person can be introduced into the particular activity that most suits his/her needs.

Building community support networks:  (Top)
A community service and a community network:
A community service could be described as:

A community service can be a government agency or department, a private organisation (NGO) or a business that provides a service to a community. The service can be professional or semi professional. Volunteer groups, church groups, service clubs, community groups are considered as semi professional because, 1) there is some sort of training, experience or criteria required to be a part of the group, 2) there is some sort of orginasitional structure involved in the group, and, 3) there is an agenda or purpose in the activities of the group. The primary role of the community service is to fulfill a need in a community. There may be other secondary roles that are specific to the service.

A community network could be described as:

The above shows that there is a vast difference in a community service and a community network.

The network:
Networks are lines of connections, associations or relationships that we use in our normal daily activities (Charles Kadushin, 2004). We develop these networks by talking to others, asking questions and building a list of contacts. Networks are also about finding solutions, administrating policies and procedures, or lines of command or authority. They can be loose, adaptable and informal, or highly structured and formal, or both.

We generally have lists of

Relationships with another person may be in one or more of these networks. These are generally used for a mutual advantage where there is something to share or gain from the relationship. One sided relationships usually do not last very long. Information that does not pass backward and forward in a network is not much good to anyone. When we move or get older, we lose some relationships and gain new ones. They are dynamic, always in a state of flux. These relationships can also be described as Primary (direct links) and Secondary, intermediate or Weak Ties (as described in Charles Kadushin, 2004 P.32), depending on our particular need and the needs of others at the time, within the network. These secondary relationships are just as important as the primary relationships. They define the arena (or playing field) in which a system of networks operate. This arena can include any number of communities that we participate in. At work, for example, we have the immediate community of people we associate with and the other communities that are a part of our work. There may be other offices in other suburbs or states that we have no associations with, however these secondary relationships define the arena of the network. The arena of the FIFA (International Football Association) includes all football clubs in all countries.

The role of the network:
Just as our communities can be Personal, Social and Public, these lists can also be Personal, Social and Public. We have our work communities and the networks within that community, we have our recreation networks within the recreation community etc. If I wanted to have a game of golf, for example, I would most likely ring my golfing mate, unless I was after a promotion at work, or was making a deal with a client. If I were having trouble with my TV I would probably call a TV repair man rather than my golfing mate, unless he fixes TV's for a living. These lists are usually built up over a period of time. They change according to our experiences with the members on the list, or our needs.

The expression "Social network" or "Social networking" is used in the business world in describing a list of contacts of clients that is used to generate new business. There is a great deal of literature on this subject. The term "Social networks" is also used with regard to the new generations of communities that have evolved on the internet (Schuler, D., 1996,). Social networks within the disability arena are mostly concerned with creating professional / semi professional networks between services and consumers. This method is not useful in the context of this literature, as it implies an institutional approach to the relationships within the network (Antti Teittinen). These networks are mostly lists of contacts of government departments (Disability Services, Social Security etc) service providers, professionals or volunteers that can be contacted when in need. These government services have their own networks, and rarely is there any overlap in these networks. These networks could be described as communities of speciality, where the Disability Services has a speciality, and the Secial Security has another speciality etc. Other professionals may be a social worker, doctor, physio, social trainer, community support worker or any other that is a part of the disability service arena.

A service provider may have primary networks with Disability Services, Social Security etc, as well as its clients and families. Clients and families often become dependent on these networks in finding support for the person. People with high support needs often socialise with others within the service, or within the service setting. What interconnections exist between these primary and secondary networks probably determines the effectiveness of the service in providing for the needs of its clients. These primary networks are the mechanisms and relationships that provide direct intervention in the care. Secondary networks may be others that a person associates with within the service, the service setting or the wider community.

Because of the nature of the disability, they (people with high support needs) often have no choice in these networks, that are mostly of a professional / semi professional nature. The service setting may be a part of the service provider, another disability service for recreation, employment or education, or a setting within a business or company, within the wider community. A person that is supported in a work environment, for example, may have the primary relationship as a social trainer/aid, and the others who the person works with may be secondary relationship. Any other relationships may be of a secondary nature or intermediate. A volunteer that supports a person in a recreation service community may have no connection with the doctor who treats the person, however this does not mean that both are not in the arena of the disability service. Both settings may quite sperate and distinct from each other, however there is a secondary (or intermediate) relationship between the volunteer and the doctor.

The role of the network in the club, group or organisation:
The role of the club, group or organisation is to provide a setting that accommodates the members. Its no good joining a football group if we want to play golf, although we may meet someone else at the football group that wants to play golf. In this case the person may become a part of our golfing network instead of the football network, or maybe both. The primary role of a network is to provide us with a group of people that can be called upon when needed. There may be other secondary roles of the network that are specific the type of network. A social network will have different secondary roles to a professional network.

Networking is about meeting others that we share interests with or have some professional relationship with. The networks can be described as communities of interest, communities of practice etc, where there is some benefit from being a part of the network. It can then be seen that the principles and characteristics of a network are similar to the characteristics of a community: Network theory looks at the nodes and links that are created between the members, however, while these networks share the same principles and characteristics, they behave differently within different communities.

Principles of a network:

Characteristics of a network:

Networking is also about breaking the rules and finding shortcuts within the system (Gilchrist, A., 2004, P.55), and creating new lines of communication and relationships within the current structure. When one line does not work in solving an issue, the network needs to adapt and find other links to achieve the desired outcome. Networking is also about strengthening old links.

The community support network:
The best description of a community support network could probably be described as a "Community of Support", that includes all stakeholders that have an interest in supporting a person with high support needs. A person with high support needs may have a number of groups, services or organisations that provide for the persons needs in different arenas of the persons life:


The above would constitute the community support network for the person. From the above, it can be seen that this community support network contains a number of arenas that contains a number of networks. This develops naturally in our lives, and is taken for granted in our normal day to day activities. We often develop these communities of support without thinking about what we are doing.

Building the community support network:
As mentioned earlier, people with high support needs do not have the opportunity to build these networks. A community support network could be described as:

Gilchrist, A., 2004 provides a useful theoretical reference point in building a community support network.


Lee J. C., 1983, is a useful background reference in theory and construction of communities.

Schuler, D., 1996, has written a paper on building communication networks within an internet community. I feel that the theory is particularly relevant to building a support network for the person within the community.

The Queensland Government has an excellent resource on community engagement, which can be applied to the project.

CLAN WA is a community support group that provides skills, recources and networks to disadvantaged people in the community so they have the opportunity to develop valued relationships and shared experiences (see Diagram 00 for details).

Management committee: comprising of professional, and non-professional (family, volunteers and other community) members.
Social worker: manages and coordinates day-to-day tasks.

Roles

A community support network, then, is a support service that helps people help themselves.

Barriers to participation and inclusion:  (Top)
Sometimes this is easy, where the community is responsive and there are no major issues to be resolved. Sometimes this is hard, where there is more than one community that is involved, or there are government bureaucracy issues, legal issues, funding issues, medical issues, available skills and resources etc. Sometimes the community has issues, hidden agendas that need to be resolved before we can look at including the person. Sometimes it is just to hard.

Community sensitivity

Skills and resources in the community

Where do I start ?

The best place to start is at the beginning.
Introduce the person to the community leader, coordinator or the organiser.
Arrange for the community leader, coordinator or the organiser to introduce the person to others at a function or a social gathering that has been prearranged.
Plan the process with the community members where they take control.

Its to hard

It did not work

The culture and institutions of the community

Community leadership

... Are motivated.

... Have a clear, positive outcome: outcomes that are clear, attainable, and worthwhile to all members.
... Have committed members: all members feel a part of the process.
... Have effective communication: all members communicate to, and respect each other.
... Have coordination of activity: all members have clear valued roles.

The way in which the process was managed

Minority group

The role of the gatekeeper in the community  (Top)
The gatekeeper: (http://www.answers.com/topic/gatekeeper)

In all communities there is some form of leadership, hierarchical structure or mechanism that:

The local police are invested by an act of government to protect the members of the community. A bouncer or security guard is invested by a social group or organisation to protect the social group or organisation. A community may have some sort of mechanism (a leader or group decision making process) that decides who is entitled to gain admittance and who is not eligible. The police, bouncer or security guard, or any other mechanism is also responsible for the welfare of the members of the group (the community). Anybody that does not behave according to the rules of the group may get removed.

The gate-crasher:
Gate-crasher: (http://www.yourdictionary.com/gate-crasher)
"Informal: a person who attends a social affair without an invitation or attends a performance, etc. without paying admission"

Any person or group that tries to gain admittance without an invitation, approval or sanction risks being removed. Communities are no different in this respect. Any person that tries to force their presence in a community risks eviction.

The definition also states that there is a price to pay:

Where a person does not have any skills or resources to bring to the community:

A group of cyclists, for example may be riding along a road in a park. Along comes a person on a motorcycle and wants to going the group. The group may allow the person entry if known to others or there is some value in the motorcyclist being a part of the group, or may call (mobile phone) the police or security to have the person removed.

Communities are no different. If a person is known to others, has something of value for the members, or is able to negotiate entry, the person will be accepted into the community and become a part of the community. If the person is not accepted, he/she will be asked to leave, ignored or forcefully removed.

Is it Social Role Valorisation ?  (Top)
At primary school, for example, you are a teacher, and are introducing a new person into the class.
You may say to the class "Class, This is Johnny, he is new here and looking for some friends. He likes to play footy, etc, etc. Who wants to show him around the school and help him meet some friends ?". "Who wants to help him with his homework ?" etc, etc ,,,,

In doing this, you are creating a positive environment where the class has a valued role in supporting Johnny as a group, as well as providing valued roles for the members in the class.

This does not mean that Johnny has a valued social role yet. That is determined by his relationships with the other members. If Johnny connects with the other members through shared experiences and valued relationships, then Johnny has a valued social role. If Johnny is in the class with another person (introducing another role), the others in the class may resent his inclusion. If it is not done properly Johnny may not develop any meaningful relationships.

Johnny may also have the opportunity to connect with the other members of the school (rather than the class) that he is a part of, through shared experiences and valued relationships.

The implications of this are:

This can happen in any group at any level. At church or a sports or social club, new members are introduced to other remembers in formal or informal ceremonies as way to welcome the new person.

The role of the buildings in the community (Top)

A building is not just a building. It is a community.

People with intellectual disabilities were historically (and to some extent still are today), housed in hospitals, refuges, nursing homes (and in some cases prisons) etc that were referred to as institutions. These buildings were horrible places, many were crowded, unsanitary places that were highly ordered and structured along military lines. To cope with the large numbers of people, a culture (1) evolved that allowed a small number of staff look after the residents basic needs. There was no room for other needs such as privacy and dignity that we take for granted these days.

Today, we see that hospitals, refuges, nursing homes and prisons etc are generally different places (although there are still some examples of nursing homes and prisons that are not desirable places) and they fulfil an important role in our community. Even today these buildings share the some of the characteristics as described by Wolfensberger in his paper "The Origin and Nature of Our Institutional Models". This does not mean that we have to pull down these buildings for the sake of progress. It does mean that institutions and the buildings are an important part of our community. We see refuges for the poor and destitute, hospitals for the sick and injured, schools for education, large boarding houses for students, nursing homes and retirement villages for the frail and aged, even churches for worship, factories for workers, and prisons for criminals etc. These buildings are designed to support large numbers of people in the most efficient and cost effective way, and therefore by their very nature will involve some sort of process of institutionalisation.

Within the community (cities, towns, suburbs etc) we see a variety of types of buildings and settings that are used for accommodation. We see large high-rises, apartment blocks, villages, estates, units etc that are mini communities within the wider community. These are all designed for specific purposes and fulfil specific needs within the wider community. To a certain degree people choose the setting that most suits their life style, and sometimes there is no choice in the matter. Each style of living has its own advantages and disadvantages.

Most of us only spend a short amount of time in institutional care (school, or hospital etc), and we have our own families and lives to return to. The needs of  people that have a physical or intellectual disability are as varied as the people themselves. There will always be people with disability that need part / full time care, respite, specialised services etc. Some need only a small amount of care, and others need full time support, and spend their whole lives in institutionalised care. Lets be realistic in providing the most appropriate care, in supporting people that have a physical or intellectual disability. Of course there will always be facilities that support groups of people (group homes, nursing homes, respite centres, boarding houses etc), but that does not mean that these facilities are not a part of a community.

"As the discussion developed, interesting questions emerged, for example:
… Are community facilities valued locally?
… Do they serve a broader community benefit?
… Do multi-purpose facilities or the co-location of services contribute to positive community outcomes more so than individual facilities?
… Is the building of community facilities the only or best way to promote stronger communities?
… Is it possible to identify an approach to the building, design and management of community facilities such that community outcomes are not only delivered but become self-sustaining?
(COMMUNITY, PLACE AND BUILDINGS - The Role of Community Facilities in Developing Community Spirit - Introduction)

The building and the institution:  (Top)
An institution is generally referred to as a large building where people lived in groups (50 or more). These were divided into large areas where all members of the group participated in the same activities, were dressed the same, were expected to behave the same and were all treated the same. There was no room for individual needs as staff ratios were 1/20 or more.

People with low support needs were grouped with high support needs and were all treated the same. They were treated in terms of dollars and cents, rather than individuals. There was very little contact with the outside world. They lived most of their lives in isolation. Government policy contributed to this, where people to be deemed as not able to look after themselves where placed in these facilities, they were institutionalised.

While institutions (the buildings) are often thought of as horrible, evil places that disadvantaged people are locked up in, these buildings had particular roles:

Through the influence of normalisation and SRV we see that the buildings are generally different places and the members have different roles within these buildings. However these buildings essentially fulfil the same roles within society. People with high support needs will always need more support than people with low support needs.

While the wider community and the institution (the building) may be separate from each other, this does not invalidate the fact that the members of the institution communicate with each other, participate in activities within the institution, and generally share the same characteristics as a community. In fact, these institutions that Goffman and others wrote about are communities in there own right, just as any other community, in that the members are inter-dependent on each other, have a hierarchical structure, are organised within a set of formal/informal beliefs, values, roles, expectations and behaviours etc.

The building and the community:  (Top)
Just as a carpenter may blame the tools for the poor workmanship, societies may blame the tools that are used in supporting disadvantaged members in the community. The building is an inanimate object, what we do with it is up to us. Just because a building is designed a certain way, and there are all sorts of support mechanisms in place, does it mean that the building is any better than some other form of reasonable accommodation (The reference is to normal living spaces that accommodate groups of people, large dormitories of 20 people or more are rare these days but may exist - probably a youth hostel), or that members of the community of the building are automatically members of, and supported within, the wider community ?

I think not ! In some circumstances a person may be worse off, where the person has lost the connections, networks and valued relationships within the community of the facility that he/she was once a part of.

A person that is living in a single person dwelling, for example, would need some basic skills in maintaining the dwelling as well as personal living skills. The person would also need to be able to access various facilities (shopping, work, recreational, education etc) in the local community in which he/she in living. Any assistance would need to be provided by family, volunteer or professional help. Either way, the person has to arrange the assistance (depending on the person's needs) with others that are providing the service. If the service is provided by a service provider, the person also has to fit into the service provider. The staff of the service provider provide the service, which means that the various formal / informal cultures, objectives, hierarchies, goals, policies, constitutions, unwritten laws or codes of behaviour etc, become a part of the normal routine of the dwelling. There are reports, care plans, medical charts, drug sheets, time sheets etc. Staff may provide 24 hour support which means that there may not be a consistency of care. Alternatively, the person may be only supported a few hours a day which means that the person may be left by him/her self with no company for the rest of the day (which does happen).

People with high support needs (aged, severe disability, drug rehabilitation etc) will need more intensive care and more structured settings. They are restricted in what they can and cant do and are dependent on others. Whatever the building is that they live in, because of their condition, they will never be able to live independently.

Rather than build better individual housing, supported accommodation etc, maybe we need to build better communities that are more able to fulfil the needs and provide valued roles to its members. By promoting institutions as an important part of the community, we can develop a more appropriate (and holistic) approach to balancing the needs of people that have a physical or intellectual disability with the needs of the community that they live in, i.e. people are placed in accommodation that is most appropriate for their needs, as well as the needs of the community in which they live.


Think of the facility you are living in:
Is it a single dwelling, shared accommodation, a town house, a boarding house, an apartment or in a block of flats ?
Where is the facility located ?
Do you enjoy living in the facility ?
What networks and valued relationships do you have within the facility ?
What networks and valued relationships do you have in the wider community ?



The building, the culture and the institution:  (Top)






The role of institutions in society  (Top)







The role of institutions in the community  (Top)
Institutionalisation and deinstitutionalisation are used to describe the situation that people with high support needs live in, and the process of enabling these people to live more normal lives in society.

Institutionalisation could be described as a loss of identity within the system.

Deinstitutionalisation could be described as a gaining of identity within the system.

However, some people with high support needs may not be able to access these activities for various reasons (age, disability, lack of skills and resources etc) and may need specialised support that is not available within the wider community.

Each community has its particular institutions that bond the members of the community. They serve as a foundation for the formal/informal cultures, values, expectations, objectives, hierarchies, goals, policies, constitutions, unwritten laws or codes of behaviour etc ("social construction"). Whether the community is a family, a school, sporting or social group, a cultural or religious group, a community home, hostel or nursing home they all need a structure that defines the group.

An institution could be describes as:  (Top)

An institution therefore refers to:

With regard to people with intellectual disabilities, the aged etc, the terms institution and institutionalisation has been used to describe:

The problem is not the institution, but the way in which it is used.

It can then be seen that the institution (the building) and the institution (the "social construction") are three different things.

Goffman acknowledges that the concept of a "Total institution" is a concept only, that institutions can never be total, but can be positioned on a continuum from open to closed (Total Institutions: K. Joans & A.J. Fowles - In Understanding health and social care By Margaret Allott, Martin Robb, 1998, Open University P.70). (An interesting observation about the concept of a "Total institution" is that, the assumption is that the staff of the institution are just as institutionalised as the residents, This may be the case, however, the term "institutionalised" refers to the residents of the institution and not the staff, visitors or any outside contact that staff may have with the outside world, therefore, any institution, where the members (residents) have no contact with others, (family, friends etc) or the outside world, can be considered as a total institution in the truest sense of the word.)




Goffman describes four main characteristics of institutions as:

Rather than describing a characteristic of institutional (the building and the "social construction") life, Goffman is actually describing a set of outcomes that are characterised by the "social construction" of the institution. These outcomes are described as negatively valued outcomes. When used in the context of the corrective services or similar institutions, or in another culture, these outcomes may be seen as positive outcomes.

Batch living, for example, describes the conditions of living, the activities and the attitudes of the management and staff towards the residents.

Batch living is used to describe negatively valued outcomes:

Within the wider community, we see these same outcomes, and although they may be less extreme, they are still there in all forms. Sometimes these outcomes, described as batch living, are a necessary part of the activity and the setting and are positively valued in providing positive outcomes for its members. A package tour, for example, the members are all living together and participating in the same activities. They are restricted in what they can and can't do, they have a set timetable that has to be followed, the service provider is responsible for their welfare etc. The value that is placed on the packaged tour is determined by the experiences of the members of the tour. I'm sure you have read or heard about a tour where the members were poorly treated, were placed in lousy accommodation, left on a ship or in a hotel for the whole time (these things have happened) etc. Boarding schools, the army, a prison are other examples of batch living.

We also see these outcomes (in varying degrees) in living, recreation, employment and education services that support disadvantaged people in the community. Does this mean that we need to remove all organisations, community groups or services that support disadvantaged people ?

NO! There will always be a need for institutions and institutionalised care in the community.

At school, for example, the students may negatively value school; they have to study, do homework, are not allowed to do what they want, are expected to be at a certain place at a certain time, are put on report if they don't do what they are told, can not go out at night during the week, have to wear a uniform, respect the teachers, have to participate in activities that they don't like (they may also be bullied and victimised) etc etc etc, while the parents and the wider community positively values the school in that the students develop knowledge, learn life skills, social skills etc towards being productive members of the community.

In a religious convent, for example, the institutions may be positively valued and provide positive outcomes in one community, while the same institutions may be negatively valued and have negative outcomes in another community. Prisons may have a positive outcome for some, and have a negative outcome for others. Nursing homes can also have a positive outcome where the institutions of the nursing home provide positive outcomes for the residents (SRV).

From the above it can be seen that the values (high order, middle order or low order) of the community and the person determine whether the values of the institution are positive or negative. Do we, as a community, value liberty or security as a high order value ? Do we value order and structure, or freedom and individuality, as a high order value ? Do we value the sanctity of human life as a high order or a low order value ? Do we value a physical life, or a spiritual life as a high order value ? Do we value individual wealth, or shared wealth, as a high order value ? Do we believe that all people should be treated equally, but some more than others ?

Institutions and institutionalisation can then be seen to have two definitions within society.


Types of institutions:

The local museum (The Museum's Community Role) is an example of an institution in the community, and how the institution relates to the community.
While museum's are not disability service providers, they share some characteristics:

... Provide a service to the community

Hospitals, schools etc are also examples of institutions and institutionalised care that provide a service to their respective communities. They are valued and have valued roles in their community. However, while these institutions are communities in themselves, they are also temporary places where the members have their own communities to return to. Just because a person is in a hospital or a school does not mean that they are any less institutionalised than a person in a prison, nursing home etc. Goffman makes the distinction between long term and short term stay. My argument is that however long the person's stay, the person is still subject to the institutions of the facility in which the person is placed. When the stay is short time and the outcomes are positively valued, the person may be able to adjust to their normal living patterns quickly. If the outcomes from short term stay are negatively valued (at school for example where a person is bullied, victimised etc, or where a person is mistreated in a hospital) the person may be emotionally scared for life (which does happen). Often this strategy is used to show young offenders what life is like on the inside. They may spend a few days in a prison to show them the reality of life behind bars. People with high support needs often have no choice in the matter. They need 24 hr care. It is the value of the outcomes (positive or negative) that determine whether the institutionalised care is positively valued or negatively valued.

The institution, the asylum and the nursing home:  (Top)
Asylum may refer to: (http://en.wikipedia.org/wiki/Asylum)

• Right of asylum or political asylum
• Insane asylum or psychiatric hospital, a hospital specializing in the treatment of person's with mental illness- such as insanity
• Orphan asylum or orphanage, an institution dedicated to caring for orphans
• Benevolent Asylum, 19th-century Australian institution for housing the destitute
• Asylum seeker or refugee, a person seeking a safe place for protection and security
  

An asylum can also be defined as a place of refuge, support or protection. Originally these places provided a safe place where disadvantaged people were looked after. They often had a better life that they would have had in the wider community. Over a period ot time these places became larger and larger, and of course the particular institutions of the asylum changed to accommodate more and more people.

There are lots of historical examples where disadvantaged people had been well looked after, and while these people were institutionalised by the system, they were generally better off in the asylum rather than in the wider community. With the development of new technology, etc as well as changing attitudes, these people have the opportunity to become included in normal community activities (the good things and the bad things) that we all take for granted today.

Just as there are lots of examples of good nursing homes for the aged, does it mean that we have to pull down all nursing homes because of the bad examples ? Are the institutions of the nursing homes any different to the institutions of the asylums ? While some conditions are not the best for the aged (although there is some progress in improving these conditions) and facilities are old and out of date, there has been no real overall concerted effort to change, as we have seen with regard to the conditions of people with an intellectual disability.

Characteristics of institutions:  (Top)
While the characteristics of different institutions may be similar, the value that is placed on the institution is mostly determined by the society or community in which it is used. The Institutions of one community may be acceptable in providing a valued outcome, but be unacceptable in another community because the outcomes may be seen to disadvantage the members (devalued outcome).

NOTE: ALL institutions do not share ALL characteristics (Goffman in Total Institutions: K. Joans & A.J. Fowles - In Understanding health and social care By Margaret Allott, Martin Robb, 1998, Open University P.70).

Charmaine Spencer (Chapter 4 The Institutional Environment (Characteristics of Institutions)) describes 11 characteristics of institutional care as:

Other characteristics:

Think of the internet (WWW).

Negative outcomes (devalued):  (Top)
Collins 1993 (from Mental health care for elderly people By Ian J. Norman, Sally J. Redfern, P 501) describes institutional characteristics that are negatively valued as:

Other negative outcomes:

Positive outcomes (valued):  (Top)
Ramon, 1991 (from Mental health care for elderly people By Ian J. Norman, Sally J. Redfern, P 503) describes institutional characteristics that are positively valued as:

Other positive outcomes:

De-institutionalisation:  (Top)
De-institutionalisation has been used to describe the process of re-establishing people with intellectual disability in the community through community based services.

Any setting where people live, work or play has its 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 ?

"The term institutionalisation is widely used in social theory to denote the process of making something (for example a concept, a social role, particular values and norms, or modes of behaviour) become embedded within an organization, social system, or society as an established custom or norm within that system. See the entries on structure and agency and social construction  for theoretical perspectives on the process of institutionalisation and the associated construction of institutions.
The term 'institutionalisation' may also be used to refer to the committing by a society of an individual to a particular institution such as a mental institution. The term institutionalisation is therefore sometimes used as a term to describe both the treatment of, and damage caused to, vulnerable human beings by the oppressive or corrupt application of inflexible systems of social, medical, or legal controls by publicly owned, private or not-for-profit organisations or to describe the process of becoming accustomed to life in an institution so that it is difficult to resume normal life after leaving."
(Wikipedia: Institutionalisation)

To institutionalise 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. 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.

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 behaviour 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).

You may say that community institutions are not the same as the institutions that devalued people where placed in. I would disagree with you on this point. In society we see all sorts of activities and settings that share the same characteristics. While most institutions are not "Total" in the sense that Goffman describes they can be positioned on the continuum from open to closed.

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:

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 behaviour etc of the Association.

The players:

The characteristics of a university (learning institution):

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.

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.


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


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.


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 (de-institutionalise). 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 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 ?









Historical perspectives of institutionalisation and de-institutionalisation:  (Top)
The literature on the origins of what we refer to as the process of institutionalisation and de-institutionalisation seem to be both limited and biased. Throughout history there are references to the conditions that disadvantaged people (the sick, the poor, people with intellectual disabilities, criminals etc) lived in, however, it was only recently that the development of drugs and other technologies allowed certain groups of people to live a more normal life.


What were the forces behind deinstitutionalisation?



Social perspectives of institutionalisation and de-institutionalisation:
Professional perspectives of institutionalisation and de-institutionalisation:

Technological perspectives of institutionalisation and de-institutionalisation:




Deinstitutionalisation and the European experience:  (Top)


Deinstitutionalisation and community living – outcomes and costs
20 Feb 2008 ... Deinstitutionalisation and community living – outcomes and costs: report of a European Study. Volume 1: executive summary
http://eprints.lse.ac.uk/3459/

Deinstitutionalisation in Europe_2008.pdf
http://kehitysvammaliitto.fi/fileadmin/tiedostot/muut/pdf/tutkimusjulkaisut/kehitysvammaliiton_selvityksia_2_2008.pdf

HOW DOES THE COMMUNITY CARE? PUBLIC ATTITUDES TO COMMUNITY CARE IN SCOTLAND, 2002 > December
http://www.scotland.gov.uk/Publications/2002/12/15880/14507



Deinstitutionalisation and the American experience:  (Top)






Deinstitutionalisation and the Australian experience:  (Top)






The role of the service provider in the community (Top)

The service provider:  (Top)
Any service that is provided by an agency, service group or organisation that specialises in looking after the needs of people with disability. The service provider may specialise in a particular area of care (accommodation, recreation, education or employment), or provide services that include all aspects of a person's life. They are generally funded by the Disability Services Commission (DSC) and contracted to provide the service within the policies of the DSC.

Characteristics of the service provider:  (Top)

You may say that these are the same characteristics as a community, and I agree. Service providers are communities that are organised around more formalised structures that are accountable to a governing body.

Other characteristics:

The role of the service provider:  (Top)
Within the current social structure, service providers (disability service agencies) take on an active role (provide direct intervention) in providing for the needs of people with high support needs. These service providers often become communities in their own right by providing a service to a specific group, providing whole of life approach to service delivery (take ownership of their members). The wider community's role is to support the service provider, any community engagement and participation has generally been from the perspective of the person with the disability <> service provider, rather than the person with the disability <> community.

The service provider has five other broad roles:

Service providers are generally designed (and funded) to target a particular group (community role):

... a particular age group

... a particular income group

... a particular activity

... a whole of life approach

This process can be described as 'Profiling', where, there is a set of criteria that service users must fulfil in order to receive the service. Profiling disadvantages people that have a rare condition or disability, do not fit the funding criteria of the organisation or there is no service in their area.

The value that is placed on the service provider by its members, as well as the community that is is a part of, is determined by its success in fulfilling its role.
The amount of success is determined by:

While the primary role of the service provider is to support people with disability, there may be other secondary roles that are associated with that role.

Other less obvious or hidden roles may be:

In theory, applying the principles of SRV to people with high support needs may provide a more positive social role and lead to valued relationships within a community. However, the reality is that the skills and resources needed to support the person may not be available within each community that the person wishes to be a part of, and there is a risk that the person does not connect with any community in any permanent or "participatory" sense.

Shows the relationship between the needs and the support required in providing for those needs.

When providing support for people with an intellectual or physical disability, the environment in which the support is provided is directly related to the needs of the person. The higher the support needs of the person, the higher the intervention, which means that the environment will be more structured and institutionalised. The service provider may have a valued role and is valued within the community that it is a part of. The problem is that while the goal of most service providers is to promote their members within each community that they participate in (community options, access and employment) through the principles of SRV, the result may be that these communities may become a part of the service provider because of the nature of the disability and a lack of skills and resources in the community.

This is not a bad thing in as much as the members of the community of the service provider still have the opportunity to develop shared experiences and valued relationships within that community, as well as the other communities that the service provider is a part of, as long as the principles (formal and informal beliefs, values, roles, expectations and behaviours) of the service provider are consistent with the principles of SRV (PASS, PASSING). It does not mean that the support is devaluing or dehumanising. It does mean that the support provided is most appropriate to the needs of the person as well as the needs of each community (living, recreational, educational or employment).

This is not to say that people with high support needs will always be in a more structured and institutionalised environment. With the development of medical knowledge, practice, treatments, drugs, technological innovations, as well as informed social policy and decision making, and community involvement at all levels, people with high support needs will have the opportunity to move from one community to another according to their own needs as well as the needs of their community.

Just as people sometimes need the specialised care of a nursing home or hospital (they get old or have a debilitating disease or condition), people with disability should be accorded the same right as any other member in the community in being able to access the appropriate care if it is not available within their own community. The Royal Perth Rehabilitation Hospital and Graylands Hospital Mount Claremont are examples of institutions in the community that provide institutionalised care in the community. While there is considerable debate about the desirability (value) of these types of facilities, my response is that the problem is not because of the institution and the building, but rather to do with the design, location, culture and organisation of the institution and the building.

Models of service delivery:  (Top)

What is the service that we are providing ?

What skills and resources does the service need to provide the service ?

How are we going to provide the service ?


The way the service is provided depends on the person's needs:


The service provider may actively support, through direct intervention, disadvantaged people in the community.
Any service that supports people with high needs will require:

When people that have a physical or intellectual disability are relocated to individual housing, supported accommodation etc, the service provider usually provides the support, or it is provided within the service setting.

Other activities such as recreation education and employment are generally provided in the service setting. Any community activity is usually co-ordinated by the service provider.

The service setting:  (Top)
Refers to the environment that the support is provided in. Can be accommodation, recreation, education or employment. The setting is usually adapted or modified to enhance social image and personal competence, e.g., allows the person to participate in the activity in the least restrictive way (as normal as possible for the person). How the environment is adapted will depend on it's particular construct to suit the needs of the person (low support needs vrs high support needs), the amount of adaptation that is needed to suite all members and how the members are advantaged or disadvantaged through the adaptation.

Types of settings :

The activities are removed from the society and have no interaction with other communities.

Enclaves (separated)

Partial integration

Full integration

These are activities that are held in the same venue at the same time by groups/teams that have mixed characteristics (age, gender, height, ability etc). These are social activities where people of any ability can mix or form teams (Able/Disabled vrs Able/Disabled etc).

And finally : Fund raising / supporting activities

Just because the service setting may be in a school, the work place, recreation centre, special needs centre or nursing home, does not mean that the activity is not a part of a community. There are many examples of activities today that are separated into able and disabled communities. To a large extent these are accepted as the social norm. The most prominent example is the Olympic games, where able athletes compete in one competition and the disabled athletes compete in another.

Ten pin bowling is another activity where we see examples of separated (competitions etc), partial integration (school activities, bowling classes, special needs groups etc) and full integration (social etc). Education communities (schools, universities etc) are other examples where these types of activities occur.

The Riding for the Disabled Association of Australia is an example of a community activity that is specialised (separated) in providing for people with high support needs. The association is a part of a world wide community that is not a part of any service provider and includes both able (as volunteers) and disabled members (and may include people with high support needs that are supported by a service provider or organisation). Whether the person with a disability feels a part of the Riding community would depend on his/her associations (connectedness) with the other members of the community.

The Riding community:

The role of the service setting:  (Top)

Each of the types of settings described above is designed to fulfil a particular need of a group at a particular time. Participants have the opportunity to move from one type of setting to another (isolated, separated, partial integration and full integration etc) according to their particular need at the time as well as the needs of the group or community that they are a part of.

At a school, for example, we see all the above settings for different activities. We see different classes for different subjects, special classes for students that need help in maths or writing a thesis, one on one tutors that provide specialise support for a need etc. We see various recreational groups designed around an activity that requires a specific setting. Can you imagine trying to play squash on a footy oval, or a game of footy in a squash court ? The members of the school community have the opportunity to move from one activity and setting to another according to their own needs as well as the needs of the school. Within the school we also have different communities, the photographic community, the chess community, the pub community etc. Members often participate in one or more communities, and have the opportunity to move from one to another according to their own needs, as well as the needs of others within the school community. Within the school we look for something that interests us or we are good at, as a way to meet others and share experiences and develop valued relationships. People with high support needs may have some difficulty in developing these relationships, but by finding the most appropriate community for the person, and introducing the person to others in the community is a start.

Think of any activity, can be shopping, going to the pictures, riding a bicycle, a game of chess, attending a lecture in nuclear physics etc

Communities within Communities revisited:  (Top)
Just as communities have different power groups, a service provider may have different groups that jostle with each other in asserting their own agenda within the organisation. There may be "Turf wars" where one department may be seen to encroach on another's territory, or important information or a resource is not distributed to a department because of some internal dispute or power struggle. Personal conflicts can also contribute to a lack of coordination in service provision where there is more effort used in counterproductive behaviour than proving for the needs of the clients.

Where a service provider supports groups of people in different settings (nursing home, hostel, group home, recreation, employment or education), these groups are communities in their own right i.e., they share the same facilities, the members interact with each other etc.

While they share the institutions (the "social construction") of the service provider, they have their own "social constructions" that are particular to the group or facility and the activity. This is most noticeable in group homes that are supported by a service provider. Each home has its own unique characteristics that require different policies, routines etc, that are designed around the needs of the members of the group. Staff also play an important role in promoting or supporting particular institutions within the community that sometimes take precedence over the institutions of the service provider that the home is a part of.

The role of the stakeholders

The role of the activity:

The role of the service provider:

The service setting:

Models of service delivery:



Service role models:  (Top)
Service role models are services that:

Services that look after people with high support needs are often modelled around service models that are successful in providing for the needs of its members.

Types of service models:
Four broad types of service models that support people with high support needs could be described as:

Full integration:

Partial integration:

Enclaves (separated):

Segregated (isolated):

In all of the above, the person has the opportunity to develop relationships with family, friends, volunteers and others that are not a part of their community, and therefore has a greater opportunity to become accepted as valued members of each community that he/she participate in. People with high support needs may have more difficulty in being able to access the wider community, or a particular community that they wish to be a part of. Through the development of skills and resources within each community, as well as technological innovations, the person may have a greater opportunity in the future to become a part of each community.

Whether a person is in a integrated, partially integrated, an enclave or segregated community, he/she still has the opportunity to move from one to another according to their own needs as well as the needs of the wider community that he/she is a part of.

Services can also be a mixture of integrated, partially integrated, an enclave or segregated. A service may support people in their own community, as well as providing full time support in it's own facility (nursing home, respite or a group home etc). The members also have the opportunity to move from one community to another within the service according to their own needs as well as the needs of the service.

Full circle  (Top)

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


Any organisation that grows above a certain size (saturation point : that the organisation can no longer function as an organisation, but rather as a collection of mini organisations) is dependent on it's departments in fulfilling the role of the organisation. These departments become specialised in providing a specific function within the organisation. Just as a person becomes specialised in a specific task, and the person looses the skills in other related tasks, the departments within the organisation may become so specialised within a role, that other skills that are important to the needs (overall health) of the organisation, become less important than the needs of the department. Each department may have budgets, performance criteria, targets, assessment programs etc that determine the efficiency of the department, which means that the department becomes more concerned with it's own performance rather than the overall health of the organisation. Communication, cooperation etc between departments becomes slow, uncoordinated and sometimes nonexistent (have you ever experienced the frustration of trying to deal with the government, a large bank, internet service provider or any large multi national organisation).

The above diagram also shows that as a service provider that provides direct intervention in the needs of people with high support needs becomes greater and greater to accommodate an increasing number of clients, the needs of the service provider becomes greater and greater in supporting those clients. 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.

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.

The Community Living Project (CLP) - SA for example has approx 40 staff employed to support more than 20 and up to 30 clients, of which approx 20% need 24 hr support. Suppose this group was supporting 100 clients. It is not unreasonable to suppose that the group would need a minimum of 80 to 150 staff to provide the same quality of service. Imagine what the service would look like if it was supporting 200 or more clients. What would the service look like if it was supporting 600 clients, which could easily happen in the future.

Activ:

Would the service become the Asylum that Goffman, Wolfensberger and others wrote about in the past (both literally and figuratively) if the community did not have the skills and resources to look after their needs  ?

Lennox Castle Hospital  (Top)
Lennox Castle Hospital was designed as a twentieth century institution to provide the needs for 1200+ men and women.

The life of institutional living is described through the experiences of a former resident (Howard Mitchell) as well as others that were living there.
In order to support 1200+ men and women today the facility would need:
Which means that the facility would need to support 1600-1800 people minimum, which is a lot of people.
Assuming a total staff/client ratio of 1/1.83, there would need to be app 660 total staff + 1200 residents = app 1860 staff & clients.


If you feel inclined to watch the videos that are at the site (highly recommended) some other interesting questions may come to mind:

The role of Social Role Valorisation in the community  (Top)

SRV is probably the most influential social paradigm used to provide a better life for people with disability.

Some may say that by providing a valued social role for the person (to Enhance Social Images and Personal Competencies), we are actually changing the values of a community and by this process the community is more accepting of the person, and the person will be included in the activities of the community. I feel that while this may be true within a social context, it is an over generalisation in that members bring more to a community than their roles (Social Images and Personal Competencies).

Social:  (Top)

Role:  (Top)

Valorisation:  (Top)

The role of Social Role Valorisation in the community:  (Top)
It can then be seen that the role of Social Role Valorisation is to - recognise, legitimise or add value to a person by recognising, legitimising or adding value to the person's role within the society in which the person lives.

Yes the person may have a valued role in society, however, whether the person participates in their community is another thing altogether. Does the person have the skills and resources ? Does the community have the skills and resources etc ? Does the community value the person - as a person (and not the label or role of the person) ? For instance a person may have a valued role as a policeman etc, but how the person is valued by others in the community is determined by the relationships and how the person relates to others in the community.

Organisations and service providers (active roles) indirectly provide these valued community roles through advertising, donations, volunteers, community activities etc. Media events such as Telethon and Appealathon, fund raising / supporting activities are designed to raise public awareness into the plight of disadvantaged people, raise the profile of the organisation or service and raise donations, volunteers etc in supporting these groups (supportive roles).

This has the advantage of:


They also act as a link between the person and the community. Employment services, for example, support disadvantaged people in the workplace. Other members of the workplace community become familiar with the person and this may lead to valued relationships within the workplace. The same thing can happen within a social, recreational or educational community, where the members become conditioned to the characteristics of the person.

Often an organisation or service provider may try to relocate a number of people into the same community. History has shown that this is not a good idea. When trying to introduce to many disadvantaged people into the same community, they may be seen as a threat to the community, and the outcomes of this have been well documented.

labelling as a social phenomenon:  (Top)

What is a label, what is a status and what is a role ?

The relationship between social labels, community labels and personal labels.

The relationship between labels and roles.

The relationship between the person's label, the status, the role and the behaviour.


Discrimination, Prejudice and Social Role Valorisation:  (Top)

Society, Roles, Values and Social Role Valorisation:  (Top)
Society :

Roles :

Values :

Disability service organisations (in fact all organisations) have a set of principles, charter, purpose, mission or vision (high order values) that are a part of their constitution/objectives. These provide the ogranisation with a focus or direction for the members of the organisation and the community of which it is a part of. How often do we see these high order values being modified or compromised because of a lack of skills, resources or internal politics.

Social roles vrs Community roles vrs identity:  (Top)
SRV says (loose interpretation), that by arranging (changing or adapting) physical and social conditions of society at any level, so that devalued people are included, in such a way that their role is positively valued by all members of society, devalued people have a greater opportunity to receive the good things in life. (Joe Osburn: An Overview of Social Role Valorization Theory, P.1- 4)

The implications of the above has meant that:

Another way to think of the above is: "By arranging (changing or adapting) physical and social conditions of all groups, clubs, organisations and communities within society, so that devalued people are included, in such a way that their role is positively valued by all members of the groups, clubs, organisations and communities within society, devalued people have a greater opportunity to receive the good things in life.

While the term Role is useful in describing our relationships with each other, I feel that there has been some confusion in the practical application of the term in service delivery and outcomes. Are we applying an Implicit role to a specific activity and setting ? Are we applying an Explicit role to a social setting ?

Our role in a particular activity is often predetermined by the type of activity, the setting and the other members of the activity. In a classroom, for example, (1): the type of activity is structured towards learning and the gaining of skills and knowledge in applying the learning, (2): the setting is separated (restricted to members that fulfil a set of criteria etc) and (3): the roles of the members are Teacher (imparts the knowledge) - Students (learns the knowledge). In order for a person to have a valued role within the activity and setting, the person must be able to satisfy the criteria associated with the activity and setting. Introducing other roles into the classroom (social system) may create some problems.

The value of a person's role is purely subjective when applied to different settings and activities in different communities. We all have different roles depending on what we are doing, where we are doing it and who we are doing it with, and therefore the person's role takes on different meanings within each community that the person is participating in. Roles are like the clothes we wear. Each activity requires a different outfit (both literally and figuratively) The example of actors in a play also shows us that roles are learned behaviours. We all are conditioned to behave a certain way (we learn our lines from the moment of birth) according to the activity, setting and the expectations of others within the activity and setting i.e.: we don't wear our bathers to a formal dinner etc. It could also be argued that communities have become conditioned in behaving a certain way when looking after devalued people (in the historical sense, as well as in society today). All members are expected to behave according to their role within the setting. If a person's role is to be submissive, then, when the person takes on a more active role, the person may be punished.

Using the term "Identity" enables us to understand the person, as well as the various roles the person has within each community that he/she is participating in. It is immediately obvious what we are referring to i.e.: the person and not the role of the person. The concept of identity (as apposed to social identity or role identity - MASK, ROLE, AND IDENTITY; THE SEARCH FOR THE INNER PERSON) describes who they are, their feelings, their hopes and desires, their interests, the essence of the person as well as the characteristics of the person. By looking at a person in terms of his/her identity, we can see that the person's role is only a part of the person. If a person's identity is positively valued (by the mother, brother, school mates etc) then sometimes, the role of the person is of little importance.

I remember a saying "You cant judge a book by it's cover. You have to read it.". We all have preconceptions about others and often we never really know the person, no matter how often we read the book. These preconceptions come from others, a characteristic that the person may have, our own feelings at the time, first impressions or any number of other reasons. Sometimes there is a negative chemistry that means that we may never feel comfortable in the others company. But at least, by looking past the person's role or particular characteristic we have a better chance of understanding the person for who he/she is.

Institutionalisation, De-Institutionalisation and Re-Institutionalisation  (Top)
SRV uses the concept of roles in the Implicit sense in that roles are used to generalise the values, behaviours and expectations (the institutions) that define the person or people within a particular group, the activity and the setting, as a normal part of society. While this generalisation is true in the most part, I think that it is unwise to assume that the institutions of all activities and settings share the same roles.

For example, Wolfensberger describes in his paper "The Origin and Nature of Our Institutional Models" the buildings that devalued people (intellectually or physically disadvantaged, sick, poor and destitute, criminals etc) were institutionalised in. They are characterised by the values, behaviours and expectations within the building. Rather than being institutionalised in these buildings, they were placed in these buildings because of a lack of skills and resources (community, medical, technological etc), or that they were a nuisance or different, or could not look after themselves. A culture evolved that allowed a small number of people to look after a large number of people. Once this transition happened, it became a normal part of community life (normalised in the community). The outcome was that people who were seen as different, can not look after themselves and need a structured life, were placed in large buildings that could provide their basic needs i.e.: they were institutionalised.

In our community, we see all sorts of activities that are carried out in buildings of a similar design that have similar institutions (universities, hospitals, hotels, office buildings, factories etc). We also see examples of people being assigned a devalued status outside these buildings in communities.

Wolfensberger uses imagery (Semiotics- Signs and Symbols, Image Juxtaposition, Image Transference etc) with great effect so that the reader has an idea of what it may have been like to live in one of those facilities as well as society in general, and how he/she can avoid the same thing in the future. Maybe he has done his work to well, in as much as the points that he is trying to make and concepts he is trying to explain have been absorbed into almost every corner of our culture with gay abandon.

Just because a person has a valued role and is living in a home by himself or with others does not mean that his life is any less institutionalised (in the context of SRV) than he would be when living with 20 or 200 others.

Whether the person with a disability is institutionalised (in the context of SRV) would depend on the:

When moving from one community (living, recreation, employment or education) to another, for example, we take on the policies and practices, cultures, behaviours, rules and regulations - the normal rhythms - of the community. We have to fit into the particular institutions of the community that we are joining.
Sometimes when the goal is the de-institutionalise a person, all we end up doing is re-institutionalising the person.

By changing the cultures, values, policies, practices and, the behaviours and expectations of the community, where people with high support needs have a better quality of life, we change the institutions of the community.

To Re-institutionalise then, is to bring about, or normalise, a behaviour, activity or policy that supports disadvantaged people within a setting, where that behaviour, activity or policy becomes a part of the setting (institutionalised).

Social Role Valorisation:  (Top)
SRV states that it is harder to change things at the top, and that by changing the person's roles (at a personal level, the immediate social system around that person (family, friends, colleagues, workers in institutions etc.), the intermediate social system that the person interacts with (people in shops, banks, organisations etc. plus those institutions themselves.) and the larger society- the socio-political-economic structures of society) may be just as effective (Diligio: Social Role Valorization - Understanding SRV (April 2004). P.79-80).

While people with high support needs are not locked up any more (in the context of SRV), there is still the separation of these groups in communities (and there will probably always be this separation). We also see organisations fulfil the same roles as the buildings that used to house them.

Rather that adapting an existing community setting to the needs of disadvantaged people, service providers often create new settings that fit into the needs of their clients. As a result, we see some service providers creating communities within the wider community. We often see the principles of SRV (integration and participation) being applied within the service setting (active role) where the wider community has a supportive role. Group homes are a good example of this where people are supported by a service provider. The clients are living in residences that are staffed by the service provider and often picked up by staff and taken to activities run by the service provider and socialise with others that are supported by the service provider. Yes they are living in the wider community and may have valued roles in society, but they are still a part of the community of the service provider. Just as in the opening example, people with disability may interact with other communities that the service provider is a part of, but are they a part of those communities ? By using a Top Down as well as a Bottom Up approach, where each community (living, recreation, employment and education) has valued roles, and actively participate (take ownership), disadvantaged people are more likely to be valued as a part of their community.


I am not saying that SRV is a bad thing, on the contrary, people with disability would still be in the same situation as they were 100 years ago if it was not for SRV. What I am saying is that SRV needs to be put into the context of the community (rather than the community being put into the context of SRV), where the community has the skills, resources and valued roles in providing for the needs of its members (takes ownership). There are no perfect solutions, and communities will make mistakes, but hopefully they can learn from those mistakes and work towards building better communities for all their members, where the needs of people with disability are balanced with the needs of their community (takes ownership), rather than the current model, where the needs of people with disability are balanced with the needs of the service provider. By providing a supportive role, service providers can promote a more active engagement of the community in supporting the needs of disadvantaged people in the community.

There will always be a need for a service model that supports disadvantaged people, but, by involving normal community services and activities such as transport, medical support, recreation, employment and education etc that are community based rather than service based as much as possible, the wider community learns new skills in providing for their needs.

The community learns new values, roles, behaviours, and skills, that eventually become embedded (institutionalised) into the culture.


Social Role Valorisation, Normalisation and the Least restrictive principle:  (Top)
Social Role Valorisation (SRV) :

Normalisation (N) :

The Least Restrictive Principle (LRP) :

While SRV looks at the social values that these people were assigned by society (enhancing social images and personal competencies) and N looks at the activities and social settings that these people lived in, both paradigms contain elements of LRP, and are an attempt to normalise (or institutionalise) a particular behaviour, activity, expectation and policy within society that provides a better lifestyle for people with high support needs. Unfortunately, people with high support needs need various support mechanisms as a part of their life, and will always need a structured environment to meet their needs.

When using the SRV, N or the LRP in relocating a person to another environment, we need to ask:

The goals of SRV and N are designed to improve the lives of people with high support needs. Relocating a person may disadvantage the person in any number of ways.

If the community (education, health, employment or recreation) that the person is being placed in does not have the proper skills or resources to provide for the person's needs that person will be disadvantaged.

Social Role Valorisation and learned behaviours:  (Top)

Social Role Valorisation and empowerment:  (Top)
Wolfensberger states that SRV has to come from somewhere else (Joe Osburn: An Overview of Social Role Valorization Theory, P.4) in providing valued roles for people with disability. Empowerment comes from the social structure (knowledge, skills, facilities, resources etc) of the community and the social organisation (Policy process, hierarchy, roles, goals, beliefs, values, cultures etc) of its members. While the two concepts may seem related, they are actually quite different.

The goal of SRV is to provide meaningful relationships and experiences (the good things) in a person's life through valued roles (Social Images and Personal Competencies) within their community.

Empowerment could be described as the process of enabling a person or group of people through

knowledge and skills
resources
experience
opportunity
self determination
SRV

Empowerment, has two perspectives which need to be understood within the context of living in the community:

While empowerment means different things to different people, there is usually a set of rights and responsibilities attached. Empowerment gives us the right to the goal, but there is usually something that we give up in the process (usually independence).

You may say that empowerment is the ability to have control over our own lives. Yes, that is true in the subjective sense, a person may feel empowered in one aspect of his/her life. The argument is an over generalisation in that no one really has total control over their own life.

Just like the fisherman who gave some fish to a friend in need. The fisherman values the person's friendship, and the person has a valued role in the community. After several days of the friend asking for fish, the fisherman had had enough and gave him a fishing rod and showed him how to catch fish. The person became empowered through knowledge and resources (gaining the skill and the tool to catch fish).

People with high support needs may have valued roles within the community and be valued by the community, however, because of the nature of the disability they may be dependent on others for their whole lives. The reality is that they may never be able to catch fish them selves. This does not mean that they are any less valued. They still have the opportunity to participate in the activity and share the experience of catching the fish, even though someone else caught it.

Alternatively, just because the person is empowered does not mean that the person is valued, or has a valued role in the community. Values come from our relationships and shared experiences with others in the activity within the community.

Community empowerment also means that there are rights and responsibilities attached. Communities can not always get what they want (there are lots of examples where they have not).

The role of Social Role Valorisation:  (Top)
When used properly, SRV is an effective strategy in proving disadvantaged people a better quality of life. However, the above shows that needs to be some caution in applying it's principles in any situation. Are we trying to empower a person through SRV ? Are we trying to provide a valued role through empowerment ? What is the person's role in the process ? Does the person have the necessary skills and resources ? What is the community's role in the process ? Does the community have the necessary skills and resources ?

What happens when the nature of a person's disability means that a positively valued role cannot be created for the person ? People with severe CP etc are not able to fulfil a role means that the value must come from somewhere else, rather than the role. We need to provide the community with a valued role (through various strategies) in supporting the person. A person with a severe disability that cannot have a role assigned to them, or be placed in an existing role, still has the opportunity to be treated and valued the same as you or me.

By using SRV in a supportive role that provides the foundation for the model of service delivery, rather than the model itself, we can see that values are more than a person's role (person centred), they are the way we share our experiences and relationships with others within an activity, within a setting (person <-> community).

Respect:

We need to respect the wishes of the community (school, person, family and relatives, and other members of the community) in their decision that the support or activity may not suitable, or that they want the support or activity provided in a certain way, even when it is against the principles of SRV. (as opposed to legal issues, human rights issues, moral issues, cultural issues, medical issues etc, which are beyond the scope of this paper). We can explain our reasons and the benefits for doing something a particular way, but we need to keep in mind that the customer is always right. We need to respect their institutions (values, customs and cultures etc). Only by gaining their trust and confidence can we make any difference in their lives. Having the opportunity to learn from experience and make informed decisions about their lives is the first step towards empowerment. Also, by understanding their perspective, there is the possibility that we may learn something new through the experience.

Patronising:

It is too easy to patronise people that have high support needs. We may unconsciously behave in a way that may do more harm than good. An example is where a person has a painting or pottery that has the person's name on it, and it is obvious that the person could not have created the work him/her self. By rewarding the person for the work (e.g.: that's a great painting you did, and you got a prize for it, you are very creative) can be demeaning to the person. We need to focus on what the person can do and the positive aspects of the person. In doing this we are less likely to set the person up for ridicule or failure.

Communication:

Effective communication between members is vital to organisational planing. Communication is not a one way exchange. The community needs to be able to communicate with its members in order to achieve its goals. The members communicate with each other to share thoughts, feelings, experiences, skills and knowledge. Clear thinking and expression of thoughts is essential to effective communication. The community also needs to communicate with others outside the community. To function effectively as a community, the community needs to be able to respond to events that are outside the community and have an impact on the community. Communication allows the members to understand their role and the roles of others in the community.
Effective communication ..

Over protective:

Placed in unrealistic settings:

People are sometimes put into settings that are often counter productive to the person and the others that are participating in the activity. While the intention is to provide a person with the experiences of everyday life, we may forget that others in the setting are also participating in the activity. We have a responsibility to the person and the others that the person fits into the setting as much as possible. In a train, for example, a person with an intellectual disability is walking up and down the aisle with the aide. The aide is familiar with the person's behaviour and assumes that the behaviour is acceptable. The behaviour is unsettling to the other passengers who are not familiar with the person and only reinforces their negative perceptions and expectations of people that have an intellectual disability in general. When travelling in a train the accepted behaviour (custom) is to sit down or stand stationary. Anyone (white, black, green or has a disability) that walks up and down a train will be seen as strange.

Place unrealistic expectations on others participating in the activity:

By including a person with high support needs (with an aide) in a classroom with other "normal" people, the person may be a distraction to the class, and the others are disadvantaged. If not done properly, it is possible that the others in the classroom may feel some resentment towards the person with high support needs being included in the activity.

Conflict of interests / policies:

Conflict in models of care:

Balancing the needs of the person, with the needs of the others in the setting, with the needs of the staff, with the needs of the service provider:

May be seen as a nuisance or a troublemaker:

Symbols of authority:

Residents are often referred to as clients, patients or even room numbers.

Staff office.
Staff name tags.
Report books and charts.
Ownership of individuals through direct intervention in the provision of care.

Association to a service provider:

Profiling:

Normalisation of practice

Leadership:

The above examples show that SRV is like anything else that we use, it can be used for good or bad. Whatever the intentions are of the user it is important to understand it's limitations. Hopefully, common sense would prevail in a situation where there is a conflict between SRV and what seems the best for the person. Communities are not perfect places either. There will always be some sort of restriction on what we can and can't do within a community, and there will always be a conflict between possible choices and outcomes (what I would do and what someone else would do in the same situation). The most important thing is to learn from our experience and maybe have a better understanding of why we act in a given way in a given situation.

Think of your roles (1) within society, (2) within your community (Where you work etc)

Social Role Valorisation and the community:  (Top)

SRV is designed to enhance Social Images and Personal Competencies where disadvantaged people are more likely to be included in society (at a personal level, the immediate social system around that person (family, friends, colleagues, workers in institutions etc.), the intermediate social system that the person interacts with (people in shops, banks, organisations etc. plus those institutions themselves.) and the larger society- the socio-political-economic structures of society. (Diligio: Social Role Valorization - Understanding SRV (April 2004). P.79-80).

The paradigm focuses on creating valued roles for the person within the community. There is nothing about creating a valued role for the community, or the roles of the members of the community in supporting people with high support needs.

I feel that the SRV needs to be reformulated to include:

All members of all communities, clubs and groups within society.
Where they are all valued, and have a valued role in participating in each community (club, group or organisation) within society,
that is most appropriate to their own needs, as well as the needs of each community in which they participate,
where the outcomes are positively valued by the members of the community, as well as other communities that it is a part of.

The above has more relevance in today's society. Generally, the conditions that people with disability live in today have changed. They are more likely to have a valued role in society. Whether they are any better of today, as compared to the conditions that they lived in and the conditions of the society that they lived in, is open to conjecture and is being debated by the various stakeholders in society. We see that the current formulation of SRV can not deal with the changing needs of the communities that people with high support needs are placed in.

A community approach to SRV, on the other hand, is more inclusive and more descriptive (explicit) in the sense that the term "community" can be used to describe our roles, relationships, behaviours and expectations with each other. A school community, for example, is different to a living community, which is different to a recreational community. While each community is different and has different outcomes, they share similar characteristics and institutions.

The above also means that the community (living, recreational, education or employment) is more directly involved in the process. By understanding the roles of communities, and how they relate to their members, and the role of the various institutions (their "social construction") of these communities, all members are valued and have a valued role within the community that is most appropriate for their needs.

We (that do not have a disability) have the choice to participate in the community that most suits our needs. We have the choice to go to a hospital when we are sick. We find the recreation community that most suits our interests. We have, or find, something of value that we can bring to the community. Even in a school or university, we bring some skills and experiences and use those as steps in a ladder to gain more skills and experiences. We develop relationships, acquaintances and friendships, and form groups (mini communities) where we support each other. Each community is valued by it's members as well as the communities that it a part of.

Of course this is only in theoretical realm. In reality things do not happen this way. Communities are not perfect places and the members are not perfect. In all communities there are good things and bad things and we can never get everything we may want. We may never always get the community we want, and have to compromise our values or ideals or expectations in being a part of a community. We see this all the time where people find the security of the community more important than the way they are treated or that the institutions of the community are against their own principles. We also see hidden agendas, internal politics, power plays, where members try to change the community for any number of reasons.

Communities are the very essence of how we see ourselves; see others, our roles, behaviours and expectations of others and ourselves. They are the means by which we fulfil all other needs. Without a purpose or reason for living, other needs such as food or shelter may become meaningless. Sometimes the needs of food and shelter come before our choice of community that we want to be a part of. To some extent communities are determined by our own deeds. We may choose one community over another to satisfy those needs, however, it is the community that we have committed to that ultimately fulfils the particular need.

A successful actor/singer may choose the community of his/her profession (the glitz and glamour, the fans etc) in order to fulfil his/her needs of food and shelter rather that the community of a family. Alternatively, we may want to work as a lawyer, for example, to feed and shelter our self and our family, but can only find work as a gardener or something else that we would prefer not to do. In this case it is the community of the family that keeps us going. Community provides the motivation, the support, the strength to carry on. It is this internal bond with others that we love and care about that bring a sense of reality to our lives. Where a person has lost the will to live because of a severe injury, illness or disability. They may become disillusioned, isolated, may be angry or have some hatred for the system that put them there. They need the care and support (valued) just as the other members of the community need the care and support (valued) in looking after the person. Even people with severe mental illnesses need the care and support within their own community where they are valued as a part of their community.

Whether the community is a part of another community, an organisation or service provider, a nursing home or an asylum, a home or a group home, a company or sheltered workshop, a community recreation group or a disability recreation group, the principles are all the same. The members need to have valued roles and be valued within their community, where the community is valued by its members as well as the other communities that it is a part of.

Even a prison, we see communities within communities. We see various groups that support each other and the members are valued within each group. There are rival groups that compete with each other for power within the prison. There are particular cultures (institutions) within these groups within the culture (institution) of the prison. The prison is also a community within the wider community where the members of the wider community are protected (valued role) from the members of the prison. The prison also has a valued role in re-institutionalising (corrective services) its members where they are able to participate in and contribute to the wider community in a positive way.

Within a disability service provider we also see various groups that compete with each other for power. We see the members of each group support each other and the members are valued within each group. These groups have various cultures (institutions) within the culture (institution) of the disability service provider. The value of the disability service provider is determined by the value of it's outcomes for the members of the disability service provider, as well as the members of the wider community that it is a part of.


Social Role Valorisation and Marxian Valorisation theory :  (Top)
The value of something is determined by the society, community or group and the members of the society, community or group.
Each of the above is valid.

The value of each is determined by the setting, expectations and values of the members of the society, community or group. A person may be positively valued for their skills and resources, but negatively valued for their relationships and shared experiences. Alternatively a person may be negatively valued for their skills and resources, but positively valued for their relationships and shared experiences.

SRV  loosely says or implies that the value of the person is determined by the value of his/her characteristics (roles), rather than the person.
Marxian valorisation theory loosely says or implies that the value of the person is determined by the value of his/her productivity.

I remember watching a video about a study done in the Hawthorne Works of the General Electric Company in Chicago (The Hawthorne Effect). In one test, the workers were asked for their input in how things could be made better to improve their working conditions. The response was that the lighting could be brighter. So the management made the lighting a bit brighter and the work improved in quality and quantity. The management then asked if workers how they felt about the lighting and asked them if they would like it brighter and the response was: yes. The management then did nothing, but gave the impression that they were interested in the welfare of the workers. The outcome was that the quality and quantity improved even though nothing had happened.

There has been much debate over the outcomes and value of the study, however whatever the criticisms are, the fact that the output improved through having more participation in the decision making process (real or imagined) is still valid. The project also showed that while the conditions may not have improved, the fact that an observer was present and interested in their performance may have been enough to improve productivity.


The focus of SRV is Social Image Enhancement and Competency Enhancement, where disadvantaged people are able to be accepted as valued members of society and live a more normal life. The focus of the Hawthorne Effect was to engage the workers (real or imaginary) in the decision making process.

It could be argued that SRV contains elements of the Hawthorne Effect:

Whether the outcomes of these approaches are positively valued really depends on the values of the stakeholders. In a factory, for example, the outcomes may be positively valued by the management, where productivity has increased, and the workers, where they believe that they have a more valued role in the factory. In a facility that supports people with high support needs, outcomes are measured by a tool (PASSING, Wolfensberger, W. & Thomas, S. (1983)) to gauge the effectiveness (value) of SRV. Whether the value of the outcomes of PASSING are consistent with the goals of the service and SRV is dependent on a number of factors (2).

As far as I am aware there has been no study on using the principles of SRV and the PASSING instruments in a normal setting, where the principles of SRV are applied to workers in a factory or students in a classroom. You may say "Whats the point of that ?" and my reply would be "If the principles of SRV are effective strategies in providing Social Image Enhancement and Competency Enhancement for people with disability, why can't they be effective strategies in the work place, the classroom or any setting where people may be devalued or their self image is poor. By enhancing Social Images and Personal Competencies of the members of a community (accommodation, workplace, school etc) I would assume that the members would benefit. However this is all theory until someone decides it is a worthwhile project.

Any way, the point I am trying to make is that it could be argued that: the goal of SRV is to enhance Social Images and Personal Competencies, where devalued people are able to lead a more meaningful and productive life (receive the good things) where they have the skills and resources and valued roles in being a part of society. The implication is that the person is valued as a friend, worker, painter, writer etc, and through this process the person may by valued as a person. A person with a severe disability that cannot have a role assigned to them, or be placed in an existing role, still has the opportunity to be treated and valued the same as you or me.

In both paradigms, it is the outcomes of the approach within the accommodation, workplace, school etc that are either positively or negatively valued. Marxian valorisation has criticised the values of the management in their treatment of the workers in a factory, and SRV criticises the treatment of devalued people within the institution. However, is it possible to change the outcomes through various strategies (negotiation, valued roles etc) where the workers / devalued people are positively valued in the workplace, facility or the community

SRV: Looks at the person and the ways the person can be more included (Social Image Enhancement and Competency Enhancement) in the normal activities of everyday living. Marxian valorisation : looks at the value of the person and how the person can be valued as a person and not a commodity.

So, it could be argued that SRV is consistent with the Marxian valorisation theory in that both paradigms place an important value on what the person contributes to the community (workplace, school etc). Marxian valorisation theory has a top down approach and SRV has a bottom up approach. SRV and Marxian valorisation try to change the institutions, (values, roles, behaviours, expectations and settings etc) where the person has a valued role within the setting.


The role of the family in the community  (Top)

Families are groups of people that have strong bonds with each other.
They are connected with each other through bloodlines (brothers, sisters, nephews, cousins etc) or some rite of passage or ritual that recognises the person as a part of the family (marriage, adoption, initiation into a family etc).

Have a defined set of roles, values, cultures, behaviours, expectations etc

The traditional idea of a family unit, where the members spend time together, where the elderly are respected and looked after as a part of the family, where a person with high support needs would be looked after by the family, where the members are dependent on there own (or friends) resources are almost gone. When a family could not cope, they could ask for help from their friends or a local community group such as a church, school or community service group (Rotary, YMCA, Lions, Salvos etc) or the local hospital. The community managed to support itself. There were no government agencies as we know them today around then.

Marginalised groups (aged, people with disability, poor and destitute, ethnic groups etc) were devalued and still are today, and will probably always be. However while some practices were seen as cruel, these families and communities did the best they could with the knowledge, skills and resources that were available at the time. The aboriginal culture for example was also regarded as primitive, barbaric and uncivilised, but we are just beginning to appreciate their way of life. If you have an honest look at our own society today and what we do to each other, the aboriginal culture may seem tame in comparison.

Crisis point:  (Top)
Today communities are not the same as 20 or 30 years ago. Advances in medicine, technology, health and knowledge in various conditions has meant that people with high support needs are living longer and healthier today. This group is becoming larger each year.

Of course these people should have the same opportunities and rights as anyone else in the community. I am not advocating that we should lock them up or anything like that, however we should provide the most appropriate care for the person as well as the community that the person is a part of, where the community has the knowledge, skills and resources to look after their needs.

Families have changed. The telephone, radio, TV, motorcar, and now the Internet has changed our world forever. We talk about the new generation and what they may do with their inherence. What will families be like in the future? How will they look after the needs of you and me in 30 or 40 years time?
Will communities have the knowledge, skills and resources to look after our needs? What will be the role of the community in supporting people with high support needs? What will the current service organisations (ACTIV, TCCP etc) be like in 50 or 100 years time? Will we depend on these organisations in the future?

Families have lost their knowledge, skills and resources in providing for the elderly. The socially accepted thing these days is to place them in a nursing home while we carry on with more important things. Communities also have lost the knowledge, skills and resources to look after the needs of disadvantaged people and rely on organisations instead.

Today we see a rising population, which is getting older, resources are being stretched, pressure in existing services is increasing etc etc. I would not be surprised to see these current service organisations (ACTIV, TCCP etc) become the institutions that Wolfensberger wrote about in the past (full circle). In fact I really think that it is already happening today and it's to late.

Maybe it's the society that we live in, that we need to deinstitutionalise, rather that the disadvantaged people that we are trying to deinstitutionalise !!

We need to provide valued roles to families and communities in looking after the elderly, people with disability and other disadvantaged (poor and destitute, and other medical conditions) so they have a future.


The role of the living community  (Top)

The right to accommodation that most suits the person's needs, and access to community activities and facilities.

Just because the person with high support needs is living in a single dwelling, a group home, an enclave or an estate etc that is managed by a local community group (LCG), does not mean that that the person does not have the opportunity to develop valued relationships and shared experiences within the facility and the wider community. The person also has the opportunity to meet with others in the community (neighbours, at the shops etc).

By the inclusion of representatives of other community groups in the LCG (LAC - Local Area Co-ordinator -, local club, local school, church etc), strategies and solutions can be found where people with high support needs are valued and have valued roles within that community.

Through the development of community links and networks, solutions can be found to issues such as:
within the community

The person still has the opportunity to access an organisation or service (LAC and other Gov. dept's, TCCP, Activ, Swan taxies, IDEntity, HACC etc) that specialise in a particular area of care for the person, within the facility that is co-ordinated by the LCG.

The living community gains the skills, knowledge and resources to provide for the needs of its members.


The role of the recreation community  (Top)

The right to participate in those activities that are most appropriate for the person towards developing valued relationships and shared experiences within that community and the wider community.

The club, group or organisation's role is to provide activities designed to fulfil the needs of its members.
With the help of the LCG solutions can be found where people with high support needs are a part of that community.

Depending on the person's needs, the recreation can be within a community facility, the wider community or a mixture.
People with high support needs still have the opportunity to develop valued relationships and shared experiences in a non participatory sense:

Each recreation community that the person is involved with gains the skills, knowledge and resources to provide valued relationships and shared experiences.


The role of the education community  (Top)

The right to the development of skills and knowledge towards a more active and productive engagement with others within the wider community (valued roles).

The role of education is to provide of skills and knowledge to it's members.
In a classroom, for example, (1): the type of activity is structured towards learning and the gaining of skills and knowledge in applying the learning, (2): the setting is separated (restricted to members that fulfil a set of criteria etc) and (3): the roles of the members are Teacher (imparts the knowledge)- Students (learn the knowledge). Introducing other roles into this community (social system) may create some problems.

This does not mean that people with high support needs are disadvantaged. On the contrary these people will be advantaged in that (1): the education is designed to suit their needs and, (2): may encourage the development of valued roles within the community if done properly.

Through the co-ordination of the LCG, solutions can be found to issues such as:
within education community

Just because the person is in another class, does not mean that the person does not gave the opportunity to develop valued relationships and shared experiences within the facility.


The role of the employment community  (Top)

The right to a more meaningful and productive life.

Gainful employment means: being able to fulfil our needs, provides us with a sense of value and worth in ourselves and others, as well as an achievement an satisfaction in what we do.

By being a part of a LCG representatives of the employment community can be more actively involved in developing strategies that support people with high needs. Through the co-ordination of the LCG, solutions can be found to issues such as:
within the employment community

Local community services are a start to people becoming a valued resource in the community.

The employment community would have the support of the LCG in providing the skills and knowledge in providing for people with high support needs.
The facility may be a home, work place, office or factory. The setting may be separated, partially integrated or fully integrated. The most important thing is that the person has the opportunity to participate in a gainful activity, and be valued as a part of that community.


The role of the health community  (Top)





The role of technology in the community  (Top)





The role of government policy and practice in the community  (Top)

Government policy and practice (the institutions of government, and how these institutions determine the decision making process towards interventions in community practice).



The role of the Local Community Group in the community  (Top)

What is a local community group ?

What is a local support group ?

What is a local community service ?



The good life  (Top)

"The good life" means different things to different people. Only by developing the necessary skills, networks and valued relationships within each community (living, recreation, education or employment) can a person participate in, and become valued as a part of that community. The needs of the person also needs to be balanced with the needs of the community in providing the most appropriate outcome for the person (people with high support needs will need a more structured setting than people with low support needs).

"The good life" could be described as having the opportunity to participate in activities and share experiences etc, in a positive way, where all the participants have valued roles and relationships. Although the activities and settings are more structured and therefore more restrictive, it is possible for people with high support needs to have as good a life as possible that is most appropriate to their needs.

By providing each community with the skills and resources and valued roles that include people with high support needs, these people have an opportunity to participate in activities, share experiences with others and become valued members of each community.

Communities also become conditioned (institutionalised) in living and behaving a certain way. When the motorcar was first introduced, it was banned in a lot of places, and in other communities, a person had to walk in front with a flag, bell or some warning device. There was little need for locks on doors or windows.
People lived in a different place. Places that we live, work and play that were state of the art a few years ago are seen as old and out of date today. In Japan, for example, people sleep in small cubicles that are big enough for a mattress and nothing else, that are piled on top of one another. Does this mean that people with high support needs will end up in a similar sort of accommodation ?

Personal reflections  (Top)

Scheerenberger, Goffman, Narje, Wolfsnsberger and others have written about the plight of people with intellectual disabilities. SRV was intended as a vehicle for social change, not the social change itself (Joe Osburn: An Overview of Social Role Valorization Theory). We are shown that these people have the same feelings and needs as ourselves, and therefore have the same rights in participating in valued relationships and activities i.e.: that they are just like you and me. While theory has been effective in providing a better quality of life for people with disability, institutions and institutionalisation is still here today in all parts of society (and will always be). Whether these are used for good or bad depends on the values of the culture of the society in which they are being used.

People with high support needs are also a minority group, and as a consequence, will have the same problems as other minority groups in respect to being assigned a devalued status. We actually see exactly the same thing has happened today where a group of people (Muslims) are devalued as a group because of the behaviours of some extremists within the group. The same thing happened with the Germans, the Chinese, the Japanese, people that smoke, are over weight  etc etc etc. The same thing can happen to any group at any time.

While the intentions are good in as much as people with disability have the opportunity for a better life, there has also been some damage along the way. in as much as it has created a split within the human service profession as to the best approach to service delivery. While theory was appropriate for the 60's - 90's, I feel that there needs to be some reassessment in the policy making process towards service delivery and outcomes (especially in the current economic climate).

The traditional methods of service delivery of social work and disability services seem to be opposed to each other:

There is a great deal written about normalisation, social integration, empowerment, SRV etc from the perspective of people that have a physical or intellectual disability (how the community should do this and that) and very little (if any) about providing a valued role for communities towards becoming empowered in providing for the needs of people that have a physical or intellectual disability. There is a huge resource out there about empowering communities, but for some reason best known to themselves, this resource has generally been ignored.

My feeling is that the current theory can not cope within the current social climate, A new approach is needed to meet the changing needs of communities within the current social framework. New technology means that the members are healthier and live longer today. The members are also getting older which means that pressures on existing services are increasing from year to year. Communities are also being redefined as each new technological innovation redefines our relationships with each other. I think we need a new perspective on our role in supporting people with disability in today's society. I also believe that the future of the human services lies in a balanced approach, where both paradigms complement and support each other in service delivery.

We should use the past as a reminder and a guide in the future towards building better communities. By redefining its role as a service to humanity, the service provider has a different perspective on its own role in promoting and supporting people that have a physical or intellectual disability and the role of communities in being a part of the process.

Just as communities of 2nd and 3rd generation unemployed in England and Europe have lost the skills to actively engage in a productive work culture (Their parents and others have not provided the necessary roles - getting up to go to work etc), and therefore depend (are dependent) on social welfare, so too, communities have lost the skills (or never had them) in providing for the needs of people that have a physical or intellectual disability.

Originally families of people that have a physical or intellectual disability got together to support each other and develop social networks. Even though this was a small start, the parents still had ownership. Over a period of time the group evolved into a service provider. The parents lost ownership (so to speak) in providing for their needs. The current generation is growing up in a society where service providers provide direct intervention in the care of people with disability and the community supports these activities. They see the ads, read the literature. Their families and peers strengthen this culture and so it becomes the social norm.

We as a human service need to build better communities, within the wider community, that actively support people that have a physical or intellectual disability, within the current social structure and government hierarchy (Law, policies etc).

… Communities that have shared goals, beliefs, values, cultures, institutions etc
… Communities that have ownership of their members
… Communities that provide valued roles for their members
… Communities that communicate effectively with their members
… Communities that can depend on their own resources
… Communities that balance their own needs
… Communities that can share and draw on skills / resources where needed

A community that supports itself is an empowered community.

There are issues such as who is going to pay for wages and services, how are the resources going to be distributed, medical issues, legal issues etc.
This will not happen next year, or the year after, but it is something we need to work towards.


Review of literature:  (Top)

The literature that was reviewed was mainly that which was available on the internet.
While there is a huge resource, most of the material I was interested in was published in various journals that I was unable to access.

Topics of interest were:

The literature was reviewed within a set of criteria:

I used Google as the search tool to find the relevant literature.
Of the material that I was able to access I found that the literature covered three broad categories:

1) Information about a particular service provided by a service provider:

2) Information on research and findings that have been carried out:

3) Theory

Most of the literature was Information about a particular service provided by a service provider (1): there was some information on research and findings, but this was out of date. There was some information on theory, but this was very little and mostly out of date.

The conclusions below are based on literature accessed on the internet as well as my own experiences and does not take into account any material that is unpublished or more up to date.


1) Very little has been written about the role of the community in SRV

2) There has been very little written about the role of service organisations in SRV

3) I feel that there is a lack of understanding in the concept of roles, institutions and community, and how they relate to providing a better quality of life for people with high support needs and being a part of their community. Yes, the situation has improved dramatically in the last 20 years or so where people with high support needs have valued roles in their community, but I feel that this is more accidental than by design - that most successes are due to the person's own resources. There is very little literature available about the problems and failures when applying SRV or placing a person in a community setting. There may be literature available regarding this, but I was not able to find it.

4) There is little or no literature describing societies and communities that looked after people with high support needs.

5) The literature describing people with an intellectual disability historically has been biased in describing their situation as different to other groups in the community. When seen in the context of the available resources, skills and knowledge at the time, these people were treated the same as other groups (poor and destitute, sick, elderly, criminals etc).

6) When developing strategies and programs towards inclusion in community activities for people with high support needs, the focus has been from the person with the disability and there seems to be very little community involvement in the process.

7) I feel that there is very little written about people with disability and significant others that manage to develop community networks and relationships through their own resources.

8) While there has been a great deal written about the institutions, buildings etc within the context of people with disability, there is little written within the context of the community.

Footnotes:


Notes and references


(Peter Anderson 01 July 2008)

(Top)