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.
