Our community - changing attitudes,
concept of deinstitutionalisation as applied to today
A community is not "My
It is "Our Community
not just a
place that we live in. It's a place where we have valued relationships
and experiences with the others
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. 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
the social sense and there may be some sense of social
responsibility, we generally leave that responsibility to someone else.
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 characteristicts 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 socity 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.
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.
We see Disability being supported by the disability sectior, Aged care
being provided by Health Care and Ageing, Family support being provided
Health care and Community services being provided by Department of
Community Services. Each service has its own niche in government
bureaucracy. While each area of service has different objectives, they
are all designed to achieve the same outcomes; to enable members to be
able to participate in and become valued as a part of their respective
communities. While the focus of this writing is about people with
disability, it is certinally not limited to this group. These days,
people have such a multiple of conditions, situations and needs that do
not fit into the traditional service frameworks that there are probally
at least 2 or 3 government agencies, departments or services that are
involved. We see Social Security, Funding and various services that
become involved in providing support to a person.
Current policy within the disability services has been to draw
attention to the needs of various groups on a social level. SRV has
been a major contribution in providing a social awareness to the needs
of people with high support needs. This has
worked to some extent in that these groups have more opportunities to
live a better life in society. Existing service delivery has been
on the person. We look at the person and how
support can be provided that most suits the person's needs. The
policies, strategies and interventions used are structured within or
around the person. Services supporting the aged, people with a mental
illness, people with a disability etc., are about strengthening
networks and relationships as well as building new networks and
relationships. However, I feel that there has
been a lack of understanding of the roles of Government policy,
institutions, services and communities in this process. Where people
support needs have specialised needs are relocated into another setting
(location, building or suburb) there is an impression that the person
is automatically a part of a community. There is a great deal of
discussion about "community
these days, but what do we actually mean? Government policy is to
provide regulations that facilitate access to various activities that
are available to others in society. Various laws, rules and regulations
are put in place so that all government departments, business,
buildings, parks, events etc. are accessible to all members of society.
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 fit
people with disability into a community.
This strategy is effective in providing local community supports for
people with low to medium support needs.
... 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.
the the skills and resources of the community,
and the amount of support that can be provided
care Vrs Institutional care)
The above shows that people with high support needs have the
opportunity to participate in, develop relationships and share
experiences within each community that most suits their needs, as well
as the needs of other communities that they are a part of. New
technology, drugs and changing community values and behaviours
facilitate the inclusion of people with high support needs within the
wider community. New electric wheel chairs, for example, are smaller,
lighter and travel further, and allow people to access other
communities that were unavailable a few years ago. Wider
community awareness of the needs of people with high support needs
(SRV) is also increasing. Communities are also evolving. They are being
redefined by each new
generation. New technologies allow people to develop relationships and
share experiences in ways we could never imagine 100 years ago. Support
services are also evolving, that build relationships and networks, and,
the skills and resources within the various communities that a person
may wish to be a part of. New government
policy also provides regulations and codes within all services to
provide access for all members within society.
Community support is also dependent on a community having the skills
and resources in supporting a person or group. Just
because a person may wish to be a part of a community does not mean
that the person can be supported within that community. Disability
and organisations are designed to support people
with high support needs. They provide a valued social role in providing
for the needs of people that cannot be supported within the wider
community. However, the service or organisation can only function
according to government policy and practice, and in this respect, is
just like any other business that provides a service to
the wider community. There are expenses and budgets that allow the
business to operate. There also needs to be some form of income to
support the activities of the business. The business is also
by various government
departments, agencies, interest groups and institutions. They provide
the rules and regulations, the skills and resources, the values and
behaviours that allows a business to participate in wider community.
also a co-dependant relationship between the business,
the employment community, and the wider community that it is a part
of. The business needs a customer base to
support its own needs and the needs of the stake holders within the
business. The success or failure of the business is dependent on the
business having the skills and resources to provide for the needs of
members as well as the needs of the wider community that it is a part
of. In this respect, the disability sector is no different to any other
service sector. The education sector (for example) also has its own
institutions that define its
role in society. The value of each school, college or university within
the wider community is determined by the success or failure of each
school, college or university in providing for the needs of its members
as well as the needs of each community that it is a part of.
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.
As a result, we see groups of people that have an intellectual
disability, groups of people with cereberal palsy, groups of people
with a particular medical condition etc. Because each group has
specific needs, each service has evolved to meet those needs that are
not available within the wider community. New communities are created
that provide the networks and relationships between the services and
the service users. The institutitions of the service provider become
the institutions of the community that is a part of the service. This
is no different to any other community that is a part of a service
provider. Educational institutions, sporting institutions, business
institutions etc, all have communities that are built around the
agendas, cultures, values, behaviours and expectations of the service
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.
... 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.
people with a mental illness, or
have a severe physical, disability or condition (high support needs)
are well looked after today. The times have changed mainly through the
These people (as
a social group) are
probably better looked after
than other groups such as the aged. the poor etc. (this is speculation
based on empirical observations). Although there are still some
communities, groups etc. that
may treat people
with disability as deviant etc., these attitudes are on longer
in the society in which we live. While the debate rages over the best
policies and practices to use in providing the best outcomes, I think
that we are all agreed that they are no longer "devalued"
The goal of the human services
make a positive difference in a person's
life. There are things we can
change (values, attitudes, behaviours, cultures etc.) and things we
(available resources etc.). By enabling people to fulfill their needs,
develop community networks, participate in activities and share
within their community, they have the opportunity to become valued
members of their community. Conversely, by enabling each community to
fulfill the needs of its members, to foster and develop personal
within that community, to facilitate strategies, solutions and
so that all members have the opportunity to participate in those
and connect with other members through shared experiences and
the community has the opportunity to become valued by its members as
well as other communities that it is a part of.
Institutions and institutionalisation has been used to describe
buildings, social structure, conditions, and expectations (The
Origin and Nature of Our Institutional Models
- SRV) that
an intellectual or physical disability lived in. Most of the literature
describes their circumstance as dehumanising and devaluing. While it is
true that conditions were miserable for people with a disability,
conditions were also miserable for other groups of people such as the
sick, aged, the poor and destitute, criminals etc. Even educational
institutions were also fairly brutal places those days. It is also true
say that people with an intellectual or physical disability have not
been treated the same in all cultures and societies throughout history.
There are some examples where this group has been well cared for by
the society in which they live. (See 1856.org:
History of the State Hospital System in Massachusetts
THE DEINSTITUTIONALIZATION MOVEMENT IN THE MENTAL
CARE SYSTEM IN THE UNITED SATES
We may see these conditions as
primitive and barbaric these days, but it is important to remember that
they did the best they could with what they had.
They had none of the conveniences that we take for granted these days.
These days we have
technology that they could only dream of one hundred years ago. Just as
the horse and buggy, oil lamps for lighting and gas for heating was
considered state-of-the-art in technology then is considered old
fashioned, outdated and archaic now. Drugs and other technological
advances and innovations that have improved their lives and enabled
to participate more in society were non existent then. While conditions
in the past may have been bad for people with a
physical disability, they were also bad for all members of society.
Hygiene, shelter, and general living conditions were poor as compared
to today, and while we see the treatment of these disadvantaged groups
as uncivilised, we need to remember that they did the best with what
they had. If fact, these groups were much better off in the "institutional care"
by Goffman, Narje,
Wolfsnsberger and others, than
would have been on the streets without these building and institutions.
problems were more to do with the setting (available resources),
management, culture, and the expectations, that they lived in, rather
the fact that they were institutionalised. Institutions are a part of
our everyday lives: in the family, cultural and
ethnic groups, religion, sport and education etc.
with high support
needs will always need a highly structured, and to a certain extent
supervised, environment that accommodates their special needs.
Imagine you were on a package holiday tour that
purchased through a
travel agent (service provider), in a country that you do not speak the
for example). You are in a strange community, you can not communicate
with the members of the community, you do not know the customs or the
laws and are dependent on your guide and the service provider for your
needs. You are given an itinerary of the places you are
visit, a list of the places you are going to stay and the
times you are expected to be at each place. Your tour guide makes sure
you are where you are supposed to be, and is responsible for
your welfare. Your every move is recorded, you are restricted in what
you can and can't do. You are dependent on the service provider for
your accommodation, meals, recreation, transport etc. You are living
with, and sharing the same experiences with the same people for the
entire holiday. Your individual needs become less important than the
needs of the group. You stay at the best hotels, eat the
best food, travel in the best style and participate in local activities
co-ordinated by the service provider. You may meet some of the locals
who treat you with
dignity and respect. You may develop some valued networks and
relationships, however the fact remains that your life
is supervised and you have little choice in what you can and can't do.
While the holiday may be an enjoyable break from your normal routine,
you are fortunate in the knowledge that the holiday is for a short
amount of time and that you have your own community to return to.
Unfortunately, people with high support needs have little choice
their situation. They need specialised support and structured
environments (just as the packaged tour is a structured environment),
and while we can make things more comfortable for them (good
accommodation, food, specialised equipment, access to activities etc.),
always have these support structures as a part of their lives. For
example, a person who is restricted to a wheel chair for any
reason, would need various modifications to his/her home to suit the
person's needs, is restricted in what he/she can do and the places
he/she can go. The person may need some assistance in transferring,
washing or general home chores. The person may not be able to drive a
vehicle and need specialised transport services. A person in this
situation would be dependent to a greater or lesser extent (depending
on the needs of the person) on a family member, hired help, a service
provider or a
volunteer. As in the above example, the person has to fit in with
the people that provide the support or service, and any other service
users. A person with a severe intellectual or physical disability may
supported by a service provider, and is a part of
that community. The person may be valued, and have valued roles within
the service provider, and the other communities that he/she is
a part of. The service provider may
have a similar role
as the tour guide
above, where the clients are supported in the activities of the wider
community, but the community that they are a part of is the community
of the service provider. The amount of support that each community can
the person depends on the skills and resources available within each
community that the person participates in.
Institutional care has always been thought of as an asylum that
supports large numbers of people. This is certainly not the case.
Institutions are just as much a part of society as communities. We see
religious institutions, educational institutions, business
institutions, sporting institutions, and the list goes on and on. These
institutions define the way we participate within society as well as
each community that we are a part of.
By understanding the roles of
Government, the community, institutions,
organisations and service
providers, the buildings and finally SRV,
strategies and solutions can be found so the person has the opportunity
to participate in activities and share experiences, develop permanent
connections and relationships, and
have valued roles
within each community that he/she participates in.
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.