- a personal experience
Unfortunately, in the process of
supporting the person, the particular government department,
organisation, profession or service may become more important than the
community that the person is a part of or would like to be a part of.
We see aged care, mental care, health care, disability and other
sectors all treating different groups of society within a particular
paradigm or policy that is unique to that sector. Because each sector
has evolved a set of specialties, cultures, and treatments that is
unique to that sector, it can be difficult to find the best solutions
in providing the best support for the person. A doctor,
for example, has a goal of treating an ailment or disease or condition
that impacts on a person's health. What the doctor is trying to achieve
is to enable the person to live as much as possible a life where the
person is able to fulfill his/her needs and participate as much as
possible in the life style that most suits the person. There is the
assumption that the person already has the community networks and
relationships, and the doctor is not skilled in developing those skills
within the person. The person may be referred to other services if
there are problems in other areas of the person's life. We
aged care sector supporting the aged, people with a
mental illness or condition treated within the health sector, people
with an intellectual or physical disability treated within the
disability sector, people with cancer, aids being treated within the
medical sector. Each sector is a separate identity and generally
within its own arena. A person that is admitted into a particular
sector often becomes a part of that system. The cultures, practices,
behaviours and expectations of that sector often define the way the
person participates in society. This is evident within the disability
sector, where support is provided within that sector rather than each
social sector that provides the various
social functions and roles within society. Issues such as
ownership, accountability, funding, and, legal issues, human rights
issues, moral issues, cultural issues and medical issues etc., all play
part in the way people with a disability are supported within society.
These issues are managed by government policy and practice which
determines service delivery.
While this philosophy is effective in
treating and supporting each group, some problems appear when a person
group of people present with conditions within more than one sector.
Or, what do we do where a person, or group of people do not fit into a
service? How do we deal with the person. Funding for services and
equipment is a good example of a bureaucratic management in providing
for the person's needs. Just because a person may be entitled to a
service or equipment does not mean that the person will get the
support. There is a maze of paperwork, and each funding application has
to fulfill certain criteria that are laid out by each government
department, organisation, profession or service. There may be 2 or 3
different services involved with a particular issue, which requires 2
or 3 different bureaucracies and 2 or 3 different funding applications.
Often there are wider issues in a person's life that are out of the
control of the service and the service can not deal with. Sometimes
this is unavoidable where a person or group of people need to be
protected from the community, or the community needs protection from
the person or group of people. People with an incurable disease or are
a danger to to themselves or others obviously need to be isolated until
their condition changes.
The above is based on my own experience. A person I know ("A") was
his own unit in a retiremnent village,where that he has a lifetime
lease. In 2009, he had a stroke and was lucky that there was a friend
provide assistance. "A" had his friends next door, as well as other
ferinds that used to visit him. There were facilities there that he
could use. He was a part of that community. When he had the stroke the
doctor said he needed full time meical care. Instead of providing
fulltime medical care within the unit he was living in, "A" was placed
in a nursing home in a restricted section where the outside doors are
"A" was presenting multiple conditions ...
... has a lifetime lease
... has engaged a person with Power Of Atterney to manage his
... he is elderliy
>80 years old.
... he has the beginnings of deminta.
... his wife had passed away a few years ago.
... he had a stroke.
... needs 24 hr care.
The nursing home ...
... "A" became a part of
institution of the nursing home.
... he had to comply with the routine of the nursing home.
... he was locked up.
The outcomes ,,,
... a lack of informed
in the process.
When providing the most
care for people with high support
... because "A" has a lifetime lease
at the retirement village, "A" has to pay expenses at the village, as
well as the nursing home where he is now living.
... is using skills and resources that could be more productively used
by someone with greater needs.
... "A" has lost the networks, skills and the resources he had in the
... has lost control over his own life.
... is seen as a sick person.
... can not make his own decisions.
... treated as an idiot.
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.