Disability
Services, disability and community
Institutionalisation and deinstitutionalisation are used to
describe the situation that people with high support needs live in, and
the
process of enabling these people to live more normal lives in society.
Institutionalisation could be described as a loss of
identity within society.
Deinstitutionalisation could be described as a gaining of
identity within society.
Scheerenberger
(1), Goffman (2, 3), Narje (4), Wolfsnsberger (5) and others have
written about
the plight of people with intellectual disabilities. Social Role
Valorisation
was intended as a vehicle for social change (6). We are shown that
these people
have the same feelings and needs as ourselves, and therefore have the
same
rights in participating in valued relationships and activities i.e.:
that they
are just like you and I (7, 8, 9, 10, 11).
The
problem:
There is a growing amount of literature available
on the
internet that suggests that deinstitutionaslisation is not working as
well as
it was intended. The trend in some countries is the
reinstitutionaslisation of
people with intellectual disability or mental illness because of a lack
of
community
skills and resources. (12, 13, 15, 16,
17, 18, 19, 20, 21, 22, 23)
“There is
overwhelming evidence
that people in the criminal justice system
have considerably increased mental health needs and that these needs are
extensively neglected in terms of developed and unified mental health
service strategies. Comparisons with the general community reveal that a
disproportionately small amount of our existing mental health resources,
already inadequate to meet community needs, are directed at meeting the
needs of offenders and those placed on remand in the jail system.” (22)
Research question:
How can a community become
empowered in providing
for
the needs of people with high support needs?
The
Project:
The project is designed to explore the various ways a
community
can
become
more actively engaged (empowered) in providing for people that have
high
support needs in their
community (providing valued
roles for
the
community)
(24, 25, 26, 27, 28).
Observations
and assumptions:
The traditional methods of service delivery of social work and
disability
services seem to be opposed to each other:
…
Social work looks at
the
community and the social barriers that people have in participating in
the
community.
… On the other hand, disability services looks at the personal barriers
that
people have in participating in the community (27).
The concept of
de-institutionalisation and
inclusion has achieved very little
in regard to people with high support needs becoming valued as a part
of their
own community.
Yes, some of these people
do live and work in
the community,
and have valued roles within the community,
but are they a part
of their
community,
and more importantly … Do they
feel that they are a
part of
their community and are they valued as a part of
their community?
Does the community
have the skills and
resources to fulfil
their needs?
The growing economy. Growing
population, getting
older. New
technology means people are living longer (29).
Lack of
community
resources
A smaller work force to
draw on
Higher cost for goods and services
Increasing population pressures on existing services
The existing resources are being
stretched to the max
The
community
Participates in the
activities of
the organisation
Becomes dependent on the organisation in providing for the needs of
people that
have a severe physical or intellectual disability.
Learned helplessness etc
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.
The research has been done in information
available on the
internet, as well as my own experiences. There is also an assumption
that
community
attitudes are determined by the type and severity of the disability of
the
person, and the impact of the person in the lives of the individuals
within
each
community
(17). There is also
the assumption that there
are no
current
studies available that support or contradict this view.
Any dialogue in the discourse of people with high support needs and the
community, needs to be positioned in the context of the person and the
community. What are the needs of the person ? What are the needs of the
community?
How can the
needs of the person be balanced with the needs
of the
community
?
By looking at disability as needs based, rather
than
located in the person or society, we can find strategies to fulfil
those needs
within each community that the person participates
in.
“The rise of
the social model of
disability has de-emphasised intervention to help
people gain skills and independence. Staff training emphasises
anti-discriminatory
practice and the promotion of choice and opportunity for people who can
express
clear intentions – not the skilled professional support required to
enable people with
significant intellectual disabilities to continue to grow and develop
throughout their
lives.
The implications of these broad changes in context are important.
Deinstitutionalisation and community living has very largely been
sustained, in the
policy arena, through the promotion of a particular philosophy. Great
changes have
been carried through on the assumption that community-based services
are better
than the institutions. This is unlikely to be enough in a harsher, more
sceptical policy
climate. The pursuit of more staff, smaller services, tenancy status
rather than group
homes, in the absence of unequivocal evidence that these things make a
difference, is
unlikely to carry sway. If community services continue to provide very
variable results,
and overall if they are seen to be not much better than sanitised
institutions, then they
will lose out in the policy marketplace.” (26, P.13)