Our community ! Understanding communities ! Dysfunctional communities
Characteristics of a community ! Characteristics of an institution
Building better communitiesAn alternative model ! Cartoons

People with disability (inclusive definition)
Labelling as a social phenomenon
Removing the barriers to community participation and inclusion
Building better communities
The community of the building
Community care Vs Institutional care
A HOME OF MY OWN Right, Rhetoric or Reality?
Building values and relationships
Community valued roles and Social Role Valorisation (SRV)
Explanation of terms

The reality in supporting people with high support needs

How does the community care?

"Institutionalised care for people with disability is alive and well in Western Australia"

The discussion about the treatment of people with high support needs has been around for a long time. Throughout history different societies have had different attitudes towards different groups. These attitudes determine the policies that provide the models of care within that society. The policies that were used are considered as degrading and dehumanising by most societies today. Through a better understanding of human physiology, psychology and psychiatry each area or discipline within the human services has evolved into a science that looks for truths, rather than based in folklore or religious doctrine. These days, societies have become more accepting and provide a better standard of care. However, while we may accept a person in the social sense and there may be some sense of social responsibility, we generally leave that responsibility to someone else. In our own personal lives, we are more interested in our own needs, rather than the needs of others. Its only where a person has a personal interest or investment in the needs of others he/she may become more actively engaged in that person or group. While I may respect the person in a social sense, the way I treat the person in the personal sense may be quite different. The expressions "society", "social" and "community" have often been used to mean the same things. A social group describes the common characteristics of a group, but not the personal relationships within the group. A community group is the shared interests, networks and relationships we have with each other within society. While a person can move from one community to another easily according to his/her needs at a particular time, it is more difficult to move from one society to another. As a result we see lots of communities that are a part of the same social group. If someone wants to build a nuclear reactor in a suburb, I would be more inclined to protest if it was planned to be built in my suburb. If the nuclear reactor became a social issue, there would be a great deal of discussion about the project.

Any change in social attitudes or policy can only come about through some form of
action that draws attention to the circumstances of a particular group within society.

Medicine, techonology and standards of living have increased dramatically over the last 20 years.

People are getting older, living longer and generally healthier these days (whether our quality of life is any better these days is still debateble) and our social and moral standards and responsibilities are intended to protect the sanctity of human life (also debatable depending on a persons idology or rationalisition). The number of people with high support needs grows daily. The burden on existing resources is also growing. The poor are getting poorer, The divisions between different groups is increasing.

The trend in some societies is to provide a standard of life style to people with disability, where they are respected and treated the same as others in that society. This is evident in providing accomodation that is nornal for the majority of the population in the society in which they live, where, by providing individualised accommodation, the person is supported in the most appropriate way (Normalisation, Social Role Valorisation, Person Centered Planning, the Least Restrictive Principle, Transitional planning etc). Groups such as low income, pensioners and the unemployed are forced to compete with the aged and people with a mental illness or disability for limited resources. Housing is becomming more unaffordable for these groups each year. Where are they going to live? Do we really care? As long as people with an intellectual or physical disability have a place to live.

The goal of disability policy is to allow the person to be able to participate, as much as possible, within each community that most suits the person's needs. Expressions such as  "Community Living" and "Living in the Community" have become popularised as trendy slogans that legitimise and validate the various the roles of the organisations and services, that have replaced the buildings, in providing for the needs of people with high support needs in society. But what do we actually mean by these slogans? Communities are an essential part of the way we live, they provide the skills, networks and relationships we need in satisfying our other needs, and it could be argued that the more communities that a person is a part of, the richer and more diverse his/her life will be. Most people have at least three or four communities that they are a part of (family, social, recreation, employment, spiritual etc). These communities allow us to participate in activities, share experiences and have the opportunity to become valued as members of each community that we are a part of. The reality is that People with high support needs need specialised support structures that are able to provide for their needs. While these supports may be available in the scocial sense (the society that they live in), they are rarely available in each community that the person wishes to participate in. Technological developlements and innovations (drugs, equipment, social programs) allow the person to become more involved with these communities, however it is the community that ultimately decides if the person is a part of that community. While different communities may be able to draw on skills and resources in the wider community to provide for the needs of their members, people with high support needs may need more specalised skills and resources that may not be available in the community that the person wishes to participate in. As a result they may be placed in communities that are not appropriate for their needs, or, we see new communities being created that can accommodate the persons needs. We see this in aged care, brain injured, people with a rare or contagious diseases etc.

The more people with high support needs that are supported in individualised accommodation, the more resources are needed to suport this group. Unfortunatly, if there are other social needs or issues that are more important than supporting the individual needs of dependant people, those resources are diverted elswere. Other groups such as poor, elderlie, drug rehabilation, cancer. aids victims or asylum seekers may have a higher profile than people with an intellectual disability and those recources will be redirected. Even within the disability community we see diferent groups competing for the same resources. People with intellectual disability or CP may get preference to resources over other disability groups. Even within a particular disability there are different individuals and groups that compete for the same resources. "on Census night 2001, there were 99,900 homeless people in Australia and 11.7% (11,697) lived in Western Australia" . "Aged care in crisis" . "The Future of Aged Care in Australia".

Just as calculators and computers and mobile phones were introduced into the classrooms and communities, and acclaimed as technological advancments and achievments. Everybody got caught up in the moment and these tools became a normal part of everyday living (institutionalised into the culture of the community). We are finding out now that the new generation has lost the basic skills of maths and english, just as 3rd and 4th generations of unemployed had lost the basic skills in productive employment. I believe that the same thing has happened with this wave of deinstitutionalision. In the rush to jump on the band wagon (so to speak) we may have lost the real reason of what we are trying to achieve. The goal of deinstitutionalision is to regain personal identity within society (to treat the person as an individual and as a part of society and the community in which the person participates). In some circumstances, providing indivualised support can be more damaging to the person than helpful, where the person looses the community networks and relationships (the social connections) within that community that the person has left. I remember an expression "Dont throw the baby out with the bath water". Institutions and institutionalised care are seen as the dirty bath water that some want to throw out. But there is a real danger (and this does happen), that when a person or group of people (the baby) lose that support (the bath water) they create all sorts of problems within the community that they end up in. As a result we see these people often end up in a worse situation that the one that they left. Even now, where people with high support needs are supported in a residental setting, they need a specalised and structured environment that accommodiates their special needs that is provided by an organisation or a community service group. Without the institutionalised support that provides for their needs, they would not have the quality of life that they now enjoy.

Over the last few years the trend has been to close the buldings that supported large numbers of people with high support needs for very good reasons. The conditions for the staff and residents have been very bad in these buildings as compaired to living standards elsewhere in the community. Because of a lack of resources (staff, technology, funding etc) the basic needs of the residents were met with no consideration of other needs. The culture of this institutional care was to treat this group as a group rather than individuals. There has been a great deal written about the living conditions of the residents that lived in these buildings, the expectations of the staff that looked after them, and the resources that were used in providing for the needs of the residents as well as the staff that looked after them. Just like anyone else, a person with high support needs, needs the social connections, networks and valued relationships to live a fulfilled and productive life. Just because we change the settings that the support is provided in does not automatically mean that we change the culture and practices within the wider community in which they are placed. Communities are as varied and individual as its members. All communities have formal/informal objectivities, hierarchies, goals, policies, constitutions, unwritten laws or codes of behaviour etc. Communities are generally very protective of their beliefs, values, cultures, institutions etc. People that do not fit into what is perceived as the social norm (socially acceptable) by the community are disenfranchised. While people with high support needs may participate in a community, whether they are a part of the community is determined by their social networks and valued relationships within that community. In the rush to provide a better standard of life for people with high support needs I feel that there has really been no thought into the alternative accommodation and support for this group. I am not advocating returning to the past, but I am offering an alternative that is active in the wider community and is a part of the wider community.

I'm sure you have visited a hotel at least once. The hotel supports a small to large number of people, the residents are treated with respect and dignity, the hotel provides a secure environment for the residents, the hotel provides the skills and resources in providing for the needs of the residents, the hotel is open to the wider community and provides various services and activities which support the wider community. In esence, the hotel is a part of the wider community, and in small communities the hotel is the life of the community. The hotel is a warm and welcoming environment where all members of the wider community have the opportunity to participate in and become involved in the activities of the hotel. Now imagine that some of the residents (maybe four or five) of the hotel had high support needs. Their individual needs would be attended to within the hotel, they would have the socialisation and community networks within the hotel, they would be treated with value respect. Others in the community of the hotel would also have the opportunity to become more familiar with the needs of the residents which helps to break down the personal and social barriers that there may be. Although there may be a number of people with different needs being supported within the hotel, the institutions and culture of the hotel are designed to provide positive outcomes for all stakeholders within the community of the hotel and in the wider community that the hotel is a part of. Just as "nornal" people are able to access a particular service to fulfil a need, a person with a particular disability would have access to each service that is most suitable for the person. A person with a particular need may have access to two or three organisations that specalise in a particular area. A person (for example) may have an intellectual disability as well as spina bifida or cerebral palsy, and needs specalised support for each condition. Having access to each discipline within the community of the hotel allows the person to participate within that community. Other services such as transport, recreation, employment, education, spirutial etc would be provided by each company, service provider or institution that specalises in that support, and is available to all members of the community of the hotel. The hotel may also have a hairdresser, post office, deli, various restarunts, coffee shops and a function center that provides social activites for the residents of the hotel and the community that the hotel is a part of. Other communities (recreation, edication, employment etc) that the person is a part of has the support and resources to support the person within that community. By including the wider community in the activities of the residents of the hotel, there is a greater opportunity for the residents to be included in the normal activies of others in the wider community through association and familiarity. This behaviour eventually becomes normalised and embedded into the community (institutionalised) where it becomes a normal part of community life.

The facility provides valued community services, and is more accessable to the wider community.

There are inherent problems in this form of support. There are local and state government policies and practices to work through, issues of accountability and funding etc. Communities are not perfect places either. Politics, different agendas and groups that jostle and compete for the same resources with each other can disrupt the strongest community. Communities can be resistant to change, they can also be dynamic places that can sometimes be a hostile place for someone without a strong voice. There will be lots of barriers along the way and will probally not happen in all communities, but, if there is a genuine desire to include people with high support needs in mormal community activities, develop community networks, build relationships, and participate as valued members in their community, solutions can be found to problems along the way. This will not be an easy journey. However, it is a start, where future generations grow up in a different society and have the opportinity to build on the foundations that are put in place today. Just as you or I have the opportunity to move from one setting to another according to our particular needs at a particular time as well as the needs of each community in which we live work and play, people with high support needs should also have the opportunity to move from setting to another according to their particular needs as well as the needs of their community. New technology or changing personal circumstances means that the person has the opportunity to find the best setting and support that is appropriate to the persons needs as well as the community that the person is a part of.

The responsible use of existing resources is important in any community in effectively managing the needs of the community as well as its members. The community needs to identify and assess which resources are important and fundamental to its role (living, recreation, education or employment), and, outside the scope of the community and available within the wider community. Hospitals (for example) provide treatmants to various ailments and conditions that prevent people from living a normal healthy lifestyle. The hospital is specialised in providing a particular service in society and draws on other speciality services, disciplines and resources in the wider community, in order to fulfil its social role. The institutions and cultures of the hostipal are based on a medical model of care, and depending on the needs of the person, this care can be short term or long term. While the hospital can be considered as a community in its own right, it is also a part of (and supports) the wider community in which it is placed.  A football club has a role in providing a recreation activity for the community that it is a part of. There are particular cultures, values and codes of behaviour that are particular to the sport and the club. The institutions of the club are based on a social/professional model of care. The club provides core services and, skills and resources for its members, and other services not within the scope of the club are sourced within the wider community that the club is a part of. This is the same for any other community (a university, church or even a business).

Institutionalised care for people with disability is alive and well in Western Australia. We see organisations and services that are considered "Icons" in the wider community. These organisations or services represent a particular disability, they provide the knowledge base (the skills and resources etc) designed to provide the best outcomes for its clients. They may provide accomodation, recreation and employement (whole of life support) for their clients. We see communities of people with an intellectual disability, communities of people with CP, communities of blind and deaf etc. There is nothing inherently wrong with these organisations or services (institutions) providing active support and interventions, in fact, for some, the only commuity that they have is the community of the organisation or service that they are a part of (whether the outcomes of each model of support are positive or negative depends on the expectations of the stakeholders), however there is a strong premise that the organisation or service can get the funding, staff and other resources in providing for its own needs as well as the needs of its clients. We see services and resources being duplicated within each organisation or service that are available within the wider community. The organisation or service is dependent on government policy, community attitudes, and support through donations and other activities within the wider community. The wider community becomes dependent on the organisation or service in fulfilling its role within the wider community, in providing for the needs of people with high support needs.

What happens if there are no available recources, or there are more people that need support than the organisation or service can manage?

I was really interested in your article and wholeheartedly agree with
what you are saying. My only reservation is comparing a "nursing home" to a
'hotel' because I spend my days reminding residents families that this
isn't a hotel!  With such a comparison comes certain expectations which
are often unrealistic due to the financial and resource constraints
imposed on aged care organisations. For example, expectations of menu
selections, extra services, 5* ratings and extra services for those
paying a large bond etc. You will be surprised what some people expect
for their dollar.

I had a vision of "nursing home" having a community centre with a coffee
shop, a GP room, even a chemist perhaps. However, now I am getting to
know the neighbours who are definitely not community minded, I could see
that this wouldn't happen without a fight. The local residents don't
want our cars coming and going, they don't want people parking on verges
and killing the grass and ruining the aesthetics of the street; I
believe they think we are a blight in their otherwise prestigious
neighbourhood which is a sad inditement of our society. One day it will
be them looking for a nursing home for their parents or themselves and
perhaps then their attitudes will change.

It is also really hard to get volunteers too which is another indication
of the lack of community interest. Add to this the expectation that the
"nursing home" becomes responsible for everything once the resident is in the
door. This includes their families rush to relinquish responsibility to
take their resident out of the building on an outing or to a medical
appointment. All of a sudden it is our job to organise transport,
escorts, buses and staff and outings. Yet sadly 107 of our 110 residents
all have families and/or loved ones that would be more than capable of
taking them out for a few hours. We get pestered all the time about when
are we going to arrange an outing for them. The logistics are incredible
yet it would be far easier for each family to take out their resident
once per month or even every couple of months.

These are just a few of the problems we face. Sorry if it sounds like a
gripe but they are sad realities.

Manager nursing home

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

Peter Anderson