institutionalisation of deinstitutionalisation
care for people with disability is alive and well in
Various disability groups and organisations promote themselves as
" or "community
what do they actually mean?
The goal of the current paradigm in the disability services is to
include people with disability within a community.
This strategy is effective in providing local community supports for
people with low to medium support needs.
People with low to medium support needs
------> education community
------> employment community
------> recreation/social community
What generally happens is that if the person does not have the skills
and resources, or each community does not have the skills and resources
... The person keeps the
communities that he/she was a part of.
... The existing communities that the person is a part
of are relocated with the person into the new setting.
... New communities are created that have the skills and
resources to provide for the person's needs. These new communities may
be a part of a service or organisation within the wider community, or
within the wider disability community.
People with high support needs <------
<------ education community
<------ employment community
<------ recreation/social community
A person or group may also
disadvantaged in that there
is no service (skills or resources) that supports their needs.
In remote areas where there are no services,
or where they do not fit
of a service,
or where a service does not have the skills and resources,
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:
may become isolated
may become a burden on their own community
may be placed in other services that are not appropriate to their
may be grouped together
may be labeled
with the same characteristics
may have their rights taken away from them
may be seen as a minority group and therefore may be treated as a
may be denied the good things in life that are available to others in
A lack of skills and resources in the community also means that the
person may be seen as:
a sick person : the person
differently to others
: takes up resources that are needed elsewhere
troublemaker : is always trying to standup for their basic rights
object of pity : the person can not look after themselves
subhuman or retarded : is not capable of making their own decisions
If fact some members of these groups are often placed in the same
today (both literally and figuratively) that Goffman, Wolfensberger and
others wrote about in the past.
People with drug and alcohol problems
People with mental illnesses
People with high support needs
Sometimes people are separated
their own good and in the best
interests of their community ...
they are a harm to
they are a harm to others in their community
The above can happen in any place at any time where a community does
not have the skills and resources to look after the needs of its
Institutional (or social)
Institutional (or social) care is
inportant in, and integral to, the way a community functions. These
institutions (Organisations and services) complement communities in
allowing communities to better
manage their own needs, Hospitals, schools and universities, nursing
homes, churches etc all provide valued roles in society, However these
institutions are used is determined by the values, cultures etc
(institutions) of the society in which they are used.
the the skills and resources of the community,
and the amount of support that can be provided
care Vrs Institutional care)
Is this the future of services that support people with high support
(aged, severe disability etc.) ????
While asyulms were origionally a place of safety or retreat from
became places of hardship, deprivation and depravation. What started as
small hospital facilities soon became large buildings that supported
hundreds of people. Built around a medical model of care, a culture
evolved that enabled a small number of people to support a large number
of people. Social policy
was to hide these groups behind walls, where society was protected from
the activities that happened within those walls. There has been a great
deal written about the values, behaviours and attitudes of the system
that supported the residents of these buildings within society. Because
they were in long term institutional care, the term "Institution"
referred to the building, the culture and the outcomes of the building
and the culture. While the charasteristicts of this institutional care
was similar to other institutions, the outcomes were different. Today,
we see small services evolve into organisations that
support different groups within society. Organisations are getting
larger to cope with increased demand for
services. As an organisation gets larger, more resources are needed to
support the organisation. 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.
organisation also has its own needs in fulfilling its
role in providing for the needs of people with disability.
service provider can not provide for its own needs or the needs
of its clients, the culture and institutions of the service provider
so that the basic needs of its clients can be met, and other
needs that are considered as not important are not met.
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
medical staff, transport, recreational, employment, direct support
staff, relief management, relief staff - just to name a few roles
may have - may mean that there are 200+ people supporting 100 clients.
When providing the most
care for people with high support
1) The community is not
person is living, but where the
person participates, shares experiences and has valued relationships
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
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,
profession or service define the way the person is supported within
7) Facilities that support people with high support needs do not
need to be the nursing homes or prisons in the
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.