Behind closed doors : The role of the nursing home in the community

Behind closed doors : The role of the nursing home in the community
The role of the nursing home in the community

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

A disability service is a service or ogranisation that supports people with high support needs.
A nursing home is a place where people with high support needs are supported.

The nursing home fulfils an important role in society ,,.

... provides the skills and resources that are unavailable in the wider community.
... provides a place of security.
... provides for the physical and social needs of it's members.
... provides a knowledge base that is used to provide support.
... supports a service industry designed around the service (employment, goods and services etc).
... are economical in providing the service

The nursing home also ,,.

... has a set of service objectives and performance criteria.
... has formal/informal shared goals, beliefs, values, cultures (institutions) etc.
... is organised within a set of formal/informal beliefs, values, roles, expectations and behaviours
... is funded by private contributions, as well as various government funding programs.
... is responsible to various government departments in service provision.
... is seperated from the wider community by the various policies and processes designed to protect the members from the wider community.

There is a great deal of discussion on how people with high support needs can access and participate in the normal social activities that others take for granted. The move towards individual accomodiation for people with high support needs allows a person to be supported in a setting that designed around the persons needs, however, the person still needs to be supported within that setting.

Aged care nursing homes are generally isolated places within the wider community. The activities and facilities are generally provided for the residents of the nursing home. They are designed specifically for the needs of the residents, rather than open and inclusive places that allow access for all members of society.

The Institution (and institutionalised care) has been portrayed as a nasty evil place that has no place in society. Do we really need to pull down all nursing homes because of a few "bad apples"? Nursing homes are much better these days than 50 - 100 years ago. This is mainly due to the advances in medicne and technology, as well as a shift in the way the care is provided. The outcomes of the institutional care within the nursing home have become much better in providing for the needs of its residents. Nursing homes will always provide a role in society in supporting disadvantaged people. They provide the social support and community networks for people that have no other supports. Ultimatly, it is up to society to determine how this resource is used. Just as hospitals and schools were historically bad evil institutions, and are now seen as valued institutions in society, nursing homes also have the opportunity to become warm community places that provide a valued role in the wider community.

These days we see disability organisations and service providers providing the same services in smaller facilities that support 1 to 4 people. These facilities may be grouped together within a suburb or spread around a city or town. The motivation for this is to provide a more normal setting that allows for the emotional/social needs of the person, while still providing for the person's physical needs. The facility is still a part of the community of the organisations/service provider who provides the staff, infrastructure, policies and process, skills and resources, and institutions that determine service delivery. While the facility may be located in a suburb and the goal of the srevice provider is to include the cilents/service users in the normal ativities of the suburb, the amount of participation (through valued relationships and experiences) in other communities is dependent on the relationships the person has within those other communities. If the person has no personal supports, that support needs to come from somewhere else such as a service provider or organisation that specialises in that support. The reality is that only a small group has the opportunity to participate in these activities. Because there is a large group (and getting larger) that do not have the opportunity to live in a single residence, or participate in normal community activities, they spend their whole lives behind closed doors.

We are told by a doctor or public servant that the person can not look after him/her self and the only place that can provide the support is a nursing home. The doctor or public servant can only use this model of care because of a lack of personal skills and resources as well as a lack of community skills and resources (there is no other option). We have seen the results where nursing homes have been closed and the person has lost their own personal support structures as well as the communities that they were once a part of. Mostly, they get placed in other services that are less appropriate for their needs.

The amount of support that is provided within the community is directly related to the skills and resources available within that community. Social policy and process is as much to blame for this. Communities have become conditioned (where these activities are nornalised in the community) to aged care nursing homes being places of confinement where people that cannot contribute to society are placed behind closed doors so we can get on with our own lives. Even within group homes that are supported by an organisation or service provider, the amount of participation (through valued relationships and experiences) within the wider community is determined by the amount of skills and resources within the wider community.

Barriers to the wider community access to the community of the nursing home:
Government policy and practice (institutional care):

Government policy and prcatice is to provide the most appropriate setting that provides for the needs of the residents. Variuos rules and regulations provide the way the service is delivered within the facility. Issues such as funding, legal issues, privacy, confidentially, rights and responsibilities, staff issues and service delivery are all managed within the facility. As a result the facility is less likely to be a welcoming place to the wider community.

Access:

Just as a church or a university is designed around the needs of its members, nursing homes are not places that invite acces to the wider community. Generally there is some form of "right of entry", "rite of passage" or invitation. The institutions of the facility are built around a particular model of care which is not representative of the institutions within the wider community.

Facilities:

Just as a church or a university is designed to support a small to large number of people, a nursing home is also designed a particular way that provides for the needs of its members. Any building that supports a number of members or supports one or two people still needs the services, skills and resources, policies, behaviours and expectations of the service provider to provide the care that is not available within the wider community. While the design of these facilities have changed over the last 50 years, they still fulfill the same roles in society. The amount of participation within any other community a person would like to participate in really depends on his/her personal resources and relationships within each of those communities.

Social attitudes (them and us), Social roles, Community roles, Members roles:

Nursing homes are generally dreary places that no one really wants to visit. We have a picture of a bunch of old folks sitting/wandering around or in wheel chairs waiting for the next excitment of the day ... the next meal. Personal needs have to wait until a staff member is bothered or has time to attend to the person. While there may be some sort of sense of social responsibility, this is probally just a passing thought. We have our one lives to get on with. A person may think "Ill probally end up in a place like this", but this is just a passing thought, we have our own life to get on with.

The problem is, that providing individual accommodation for people with high support needs is dependent on services being available to support this group. There are a number of groups (people with disability, poor and destitute, pensioners, people on welfare, just to name a few) competing for available land, services, funding and donations and adequate staff. Are elderly people really better off living in single or shared accommodation? What happens to the other groups that are also desperate for accommodation? Do we really care?

Within the human service arena the nursing home has to compete with other organisations and service providers for funding, donations, nurses and other staff, equipment and other resources. The amount of support the nursing home gets is directly related to it's profile within the human service arena as well as the wider community. The quality of the service of the nursing home and it's ability to provide for the needs of it's members is directly related to the amount of support the nursing home receives within the human service arena as well as the wider community. The nursing home has to compete for the physical resources within the setting of thre facility. Issues such as location, transport, parking, noise etc all impact on the way the nursing home fulfills it's role in society. What happens when the needs of the wider community become greater that the needs of the community of the nursing home? A shopping Ctr, office tower or football stadium may be more important or valuable to the wider community than the nursing home (this does happen).

Community engagement is about developing networks and relationships within the wider community.
How can the community of the nursing home become more active in the wider community?
How can the wider community become more active in the community of the nursing home?

Just as a hotel is a part of the wider community, there is no real reason that a facility that provides accomodation to the wider community, and also supports maybe four or five residents that have high support needs, can not be a part of the wider community by providing activities and facilities such as shops, hairdressers, function centre, restaurants etc that are available within the wider community.

The facility supports a small to large number of people. The residents are treated with respect and dignity. The facility provides a secure environment for the residents. The facility provides the skills and resources in providing for the needs of the residents. The facility is open to the wider community and provides various services and activities which support the wider community. In esence, the facility is a part of the wider community, and in small communities the facility is the life of the community. The facility 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 facility. Some of the residents of the facility have high support needs. Their individual needs would be attended to within the facility, they would have the socialisation and community networks within the facility, they would be treated with value respect. Significant others in the persons life would be able to book a room in the facility and spend some time with the person. Others in the community of the facility 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 facility, the institutions and culture of the facility are designed to provide positive outcomes for all stakeholders within the community of the facility and in the wider community that the facility 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 facility 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 facility. The facility 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 facility and the community that the facility 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 facility, 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. Through this process the acivities of the facility become nornalised (institutionalised) in the normal activities of the community, where the residents have the opportunity to become valued as members of their community and other communities that it is a part of.

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.

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.

Regards
"anonymous"
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.

Nursing homes for elderly people: questions of quality and policy, Helen C. Bartlett - 1993, Harwood Academic Publishers

Peter Anderson
http://www.psawa.com