The role of accommodation for people with disability in the community


Contents


The problem in providing individualised accommodation for people with high support needs is that the resources (funding, available land, building infrastructure etc) are diverted from other areas.

The housing crisis in Australia is getting worse, and the dream of everyone living in their own house is looking more like a nightmare. Interest rates are increasing, land is getting more scarce, skilled builders are leaving the industry to look for work in other areas.

As the demand for individualised housing increases the resources available to meet those needs will become less and less.

Who is going to miss out?
How will we meet the needs of an aging population in the future?

The trend in most urbanised societies is for group living, where people live in communities in apartment towers, blocks of flats or units that have all the necessary facilities to support those communities.

Why should people with high support needs (aged, physical / intellectual disability etc) be segregated from the normal social activities of the society in which they live?




The role of the building in the community: (Top)
Within society we see all sorts of communities that provide for our needs. We see the community of the family, where the members share a home with each other. They interact and socialise with each other within the home. There are various customs, rules and regulations that allow the members of the family function as a community. There is a hierarchy that provides leadership, order and stability within the family.

A hotel provides accomodation for a group of people that need a place to stay. A community center provides a ficility that can be used by various community groups within the wider community for different activities. A sports facility is used by various groups within a sporting community. A school or university provides knowledge, skills and resources to various groups within the wider community. A factory is a place with a number of groups that work towards the production of goods. While each building or facility has a distinct role within society, they also heve a role within each community that makes use of the building or facility. Community groups make use of a community centre, The recreational community makes use of the recreational facilities, the educational community makes use of  schools and universities.


The community of the building: (Top)
A building is not just a building (unless it is empty). It is a community.
Each building is a community in its own right. At a shopping centre for example we see a group of people that interact with each other. They have a purpose. They act within a set of conventions and cultures that allow the shopping centre to fulfil its role within society. While the members of the community of the shopping centre have no other relationships with each other, they still need to organise themselves so that their individual needs can be fulfilled.

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 evolved that allowed a small number of staff look after the resident’s 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 fulfill 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 a 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. Let’s 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.



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 persons 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 can’t 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 fulfill 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.

"On the one hand, some critics have argued that deinstitutionalisation has resulted in at best reformist housing models and at worst exclusionary housing processes that have ‘transposed the same structures, routines and cultures of institutions out into community settings’ (Chenoweth 2000: 85). By contrast, other groups feel that deinstitutionalisation has been too transformative. In particular, some relative/advocate associations have sought to counter community care debates with an alternative construction of ‘reform’ that centres on the ‘re-creation, not closure, of institutions through systematic improvements to infrastructure and services’ (Gleeson & Kearns 2001: 66). As we have noted, such countercurrents have successfully (re)conditioned the course of human service reform and, in some states, reopened a policy-political ‘space’ for congregate care.

In summary, Australia’s future phases of deinstitutionalisation are certain to be contested by different socio-political interests. As a consequence, the housing futures of current institutional residents are likely to be contested and – for some service users – may not involve significant change to the place and form of their care. Moreover, the rehousing of some institutional residents may be delayed by the multiplicity of interests and support claims that will confront policy makers and service agencies in the future. Whilst we do not support the continuation of orthodox forms of institutional care, the contest over housing futures that is increasingly apparent in Australian policy realms may not in itself be a bad thing for service users.

Indeed, promoting participation by all stakeholders in decision-making is a cornerstone of social inclusion and essential to ensure that everyone can gain access to the housing and support services they need to achieve their own potential in life. This means that a contested rehousing process will be constructive if it produces reflective rather than conflictual service reform. Much will depend on how service agencies manage discussions and consultations about policy development (see Gleeson & Kearns 2001 on this). A more reflective mode of reform is, in our opinion, more likely to produce heterogeneous not formulaic housing and support options for people in care. A diverse and flexible community care housing landscape will be better equipped to meet the individual accommodation needs and desires of service users and thereby enhance social inclusion." (Contested Housing Landscapes? Social Inclusion, Deinstitutionalisation and Housing Policy in Australia)

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?



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


Peter Anderson
http://www.psawa.com