People with disability (inclusive definition)
A question of values
Building values and relationships
How does the community care?
The role of Social Role Valorisation in the community
Community care Vs Institutional (social) care
The institutionalisation of community care
Disability and Community
Disability services role models
A local community group (LCG)
Social roles Vs Community roles Vs Identity
Social Role Valorisation and the community
Valued roles or Valued relationships
Labelling as a social phenomenon
Personal Fulfillment, Values and The Role of Supportive Communities
Normalisation, Social Role Valorisation, the Least Restrictive Principle and Person Centered Planning
Explanation of terms

An alternative model of support for disadvantaged people in each community that they are a part of.

Contents

Outlined below is meant to act as a guide only in offering an alternative model for service delivery for people with disability.



Summary:  Top

Is primarily concerned with people who have high support needs and limited personal support mechanisms.

The needs of people that have a severe physical or intellectual disability are generally met within the organisation/service (institutional) framework. Organisations and services such as Activ, Rocky Bay, TCCP, Brightwater, i.d.entity.wa etc provide services that support disadvantaged people in the community.

While conditions have improved for people with disability, generally, these organisations have fulfilled the same role in society as the buildings that used to house them. By providing valued roles for each community that they participate in, as well as using the principles of Social Role Valorisation (SRV) at the personal level, people with high support needs have a better opportunity to become a part of their community. By shifting the organisation to a supportive role, rather than direct intervention, the community can take an active role.

This will not be an easy task, there are a lot if issues to be addressed, but I believe that something needs to be done and the rewards are worth it.



Damage control:  Top

Generally, the human services are lurching from one crisis to the next.

All suffer from the same problem …

the growing population
the existing resources are being stretched to the max
a smaller work force to draw on
higher cost for goods and services
increasing population pressures on existing services

While the human services cannot change the above, I believe that we (collectively) can adapt to the new situation.

Disability services, aged care:
The current model of service delivery was appropriate for the circumstances at the time, where the conditions for disadvantaged people were terrible.
Today, people with disability generally have the same rights etc as others in the community, and conditions have improved.

I believe that it is now time to take the next step and evolve (so to speak) to meet the changing needs of the community within the current social framework. While there are things we cannot change, there are things that can, and I believe that we (collectively) need a new perspective on our role in supporting people with disability.
 
I believe something needs to be done, as things cannot continue as they are now.
Yes, there will be some pain along the way, but I think there will be a lot more pain the way things are going at the moment.

 

History:  Top

People with disability were housed in large buildings because it was convenient and economical.

1)     these people were seen as a threat to society etc
2)     the community generally did not have the skills/resources to look after their needs

These buildings were known as institutions.
 
In the late 1900’s a number of people wrote about the conditions of people with disability and tried to do something.
People like Narje and Wolfsnsberger advocated a set of principles and objectives, which were designed to integrate people with disability into the community.
The principles of normalisation, social integration, empowerment, SRV etc evolved to provide better conditions for disadvantaged people. SRV is designed to overcome the initial barriers that disadvantaged people have in developing relationships in different communities, so that they have an opportunity to participate in the activities and share experiences and be a part of those communities. The concept of De-institutionalisation was born.



Today:  Top

People with disability today:  Top

No longer seen as a threat to society.
People with disability have a much better quality of life than 100 years ago.
They have access to a number of resources that you and I take for granted that was not available to them, such as proper housing, medical care, education etc.

While the current model of service delivery has been effective in providing a better quality of life for people with disability, these people are generally in the same situation as before (in a sense that the organisation has replaced the building), through the very mechanisms put in place, that are designed to do the opposite. These organisations often provide accommodation, daily care, recreation, employment etc, or it is provided within the service framework. People with disability often live, work and socialise with the same staff and others, and are referred to as clients, by the organisation. People with disability who live in community facilities run by the organisation are subject to the various policies and procedures put in place to provide a safe environment for clients and staff etc. Client independence is often compromised by these various policies and procedures. There are people with disability who work in shops etc in the community that do have valued roles within their work place.

Yes, people with disability do live and work in the community, BUT, are they a part of their community ??????

Rather than building new communities around people with disability, we should be building existing communities (living, recreation, education and employment) that have the skills, resources and valued roles, where people with disability are a part of each community.



The organisation today:  Top

Organisation: refers to any service that is provided by a service group or organisation that specialise in looking after the needs of people with disability. The organisation may specalise in a particular area of care (accommodation, recreation, education or employment), or provide services that include all aspects of a person's life. Organisations are generally funded by the Disability Services Commission (DSC) and contracted to provide the service within the policies of the DSC.

The organisation evolved according to a set of standards and principles designed to support people with disability.
The organisation’s role:

Typical structure of current service delivery (within the disability service framework) in providing for the needs of people with disability.

  

The organisation also has its own needs in fulfilling its role in providing for the needs of people with disability.

It can be seen that there are two broad functions that the organisation has:

1) Supporting and maintaining the needs of the clients
2) Supporting and maintaining the needs of the organisation

Sometimes the needs of the organisation become greater that the need of the clients supported by the organisation:

… income, The organisation cannot function with out donations, Gov funding, etc.
… qualified staff, Lack of competent staff means that the clients are not getting the proper support, etc.
… maintenance, The organisation needs to maintain the facilities, equipment to a standard that is required by the service uses (staff and clients) to maintain service delivery.
… management, the management hierarchy increases to cope with its own needs.
Etc.
 

Other factors also impact on the organisation’s ability to provide for the needs of its clients.

… current workforce: the organisation is limited to the available workforce to draw on.
… costs of goods and services (electricity, petrol, external labour costs etc) all impact on the organisation’s ability to function.
… reliance on the community to support the organisation through Gov funding, donations etc.
… increasing community demand for services also put a strain on the ability of the organisation to provide the proper support.

As the organisation grows, the demands of the organisation increase and put an increasing strain on existing internal and external resources to the point where the organisation cannot provide the care needed in supporting its client base.



The community today:  Top

Some organisations that provide for the needs of people with disability function as a community within the wider community.

Organisations also actively engage in supporting and promoting the needs of people with disability in the wider community. Generally, the community is approached by the organisation to support the activities of the organisation through:

… advertising their various development programs and promoting people with disability generally.
… volunteer programs.
… sponsorship programs through business and company support.
… community events organised by the organisation.

The community’s role is supportive in participating in the programs and activities provided by the organisation. As a consequence, there may be two or three organisations providing the same services (accommodation, work, recreation etc) within their own community, within the wider community. These organisations are also in a competitive market with other organisations for staff, donations, sponsorships, research etc, in the wider community.

Organisations that provide services for people with disability can be seen as communities within the broader community.

These organisations sometimes provide duplicate services etc.

The stakeholders today:  Top

 



The role of government policy and practice in the community:  Top
Government policy and practice (the institutions of government, and how these institutions determine the decision making process towards interventions in community practice).

The various programs or strategies designed to support disadvantaged people in society have evolved through a process that could be best describes as "trial and error" in response to various social issues within society. Government resopnds to an issue by creating a department to deal with the issue.

Universities and institutions use historical and evedance based research related to the issue within that arena.

Each Government, state, department or locality has a different approach to supporting disadvantaged people in society..
There are a number of reasons for this


GOVERNMENT INSTITUTION

Community disability services: an evidence-based approach to practice : 2006 : Ian James Dempsey, Karen Nankervis

Supporting the housing of people with complex needs : September 2007, AHURI Final Report No. 104

Future:  Top

People with disability in the future:  Top

People with disability (inclusive definition):
The current definition is based on a medical model, and while appropriate for medical and legal purposes, only highlights (reinforces community perceptions) the fact that people that have a physical or intellectual disability are different from others. I propose to use a more inclusive (social) definition.

Any person that has a particular characteristic that disadvantages
their ability to fulfil their needs, actively partake in the normal activities
of their community, or devalues their identity within their community.

Having a disability does not necessarly mean that the person is disadvantaged. The Blind and Deaf are examples of communities do not see themselves as disadvantaged. There are also people that are amputees that have their own communities and are able to live independent and fulfiled lives.

The above also sugests that it is possible for any person to be disadvantaged for any reason in any community. Some studies were done with school children a few years ago where the class was divided into groups (Blue eyes Brown eyes). The results clearly showed that people become disadvantaged quite easily. Just as Muslems were targeted a few years ago because they may be terrorists, all Muslems became disadvantaged. The same thing happened to the Jews and any number of other groups of people. The same thing can happen in any community. If I wear my P.J's to work (which has happened in America) I am seen as someone who is different. In some communities a particular characteristic can be an advantage. While I was travelling around the Northern Territory I certianily felt like a second class person in the shops. I spent some time living in an Aboriginal community and it took a while to become accepted as a part of their community.

The needs of people with disability are as varied as the people themselves. Some are mostly independent, have their own community networks and only need a small amount of support. Others are highly dependant and need full time support. Just as a group of school children are associated with a particular school, or a group nurses people are associated with a particular hospital etc, people with a particular disability become associated with a particular organisation that promotes and support their needs, Eg: Activ support people who have an intellectual disability, TCCP support people who have cerebral palsy etc. I know that when I see a person with an intellectual disability, the first thing I think of is the disability. I may also think about the organisation that actively supports and promotes them, as well as the slogan and the logo of the organisation, and the glossy brochures and advertising remind me that this person is just like me. I also know that the organisation is looking after their needs.

Most of us only spend a short amount of time in institutional care (school, or hospital etc), and we have our own families and lives to return to. However, there is a percentage of people that spend their whole lives in institutional care, and that is all they have. Some have even been abandoned by their families and have no personal support mechanisms. There will always be people with disability that need part / full time care, respite, specialised services etc.

Institutionalisation generally referred to the conditions that people with disability lived in, within the facility. Historically, institutions were established to look after disadvantaged people. While conditions have changed, today, we see organisations fulfilling the same role. I believe that we should move away from the paradigm (that people with disability are institutionalised, and our goal is to De institutionalise them) that underpins disability services. (The concept of De-institutionalisation as applied to today) (Beyond De-institutionalisation)

An institution could be describes as: (Institutions) (What Are Institutions)

Any club, facility, organisation or gactivity that:

... has more than one member that actively participates in the club, facility, organisation or community activity.
... is organised within a defined set of formal and informal beliefs, values, roles and behaviours,
... may be highly structured within these formal and informal beliefs, values, roles and behaviours,
... shares a set of objectives.

Institutionalisation:

Institutions are a fundamental part of our culture and society.
They are a necessary part of our everyday life.
Every culture has its individual customs and institutions.
We are all institutionalised from birth to death.

So, to try to De institutionalise someone seems a bit silly (unrealistic).

The problem is not the institution, but the way in which it is used.

What we (Disability services) should be doing is acknowledging the role of institutions in our society, focusing on their strengths, not weaknesses, and developing a different approach to service delivery within an institutional framework. In other services (Health care, Justice system, even the education system) the institutional model provides the foundation for service delivery. There are some excellent examples of aged care, where nursing homes, retirement villages etc provide the specialised care, recreation, community participation etc.

If anything ….
what we should be doing is not to De-institutionalise, but to Re-institutionalise !!!!

It could be argued that by applying the principles of Social Role Valorisation (SRV) to the particular setting that is supporting people with disability, there is a conscious process of changing our values, behaviours, the social structure, and the environment in which we participate, and that all participants are being institutionalised, in behaving within a defined set of goals, beliefs, values, roles and behaviours that promote valued roles for devalued people. By providing valued roles for each community that they participate in, as well as using the principles of Social Role Valorisation (SRV) in developing personal relationships, within the institutional setting of the respective community, people with high support needs have a better opportunity to become a part of their community.



The organisation in the future:  Top

The role of organisations in raising community awareness into the plight of people with disability has been significant, and they (people with disability) would still be in the same situation if it were not for their (the organisation’s) intervention.

As mentioned earlier, I see the current role of organisations as one of providing direct intervention in the care of people with disability.

I believe …
The organisation should focus more on providing the necessary skills to the community through a decentralised management hierarchy (Local community support group, LCG), with a greater focus on local community management, rather than direct intervention. By acting as a peak body, the organisation (still retains the specialised services unique to the organisation and still functions as an institution) supports the LCG in providing the necessary resources needed to support people with disability within the community setting.

The other advantage is that the LCG has a more ready access to other peak organisations that specialise in other areas of care. Rather than two or three organisations providing the same services, The LCG can optimise (and provide a more holistic approach to) service delivery by matching the needs of its members with the particular organisation that specialises in a particular need. People that have a rare disability or disease that are supported by small organisations are able to join a LCG and still receive the support from that speciality.

The LCG would be made up of a committee of local community members with a social worker that supports people with high support needs and their families in developing valued relationships within their community. The community has the opportunity to become more actively engaged in supporting people with high support needs and their families through the various activities of the LCG. Having a local support network can be the first step towards independence.

Structure of LCG shows community stakeholders that support direct intervention in the care of people with high support needs.

Various activities are coordiated through the LCG with the support of the various organisations that provide specialist services.
The LCG is accountable to the various government policies and regulations in respect to performance and service delivery.

Single / shared accommodation that supports a person with a disability.

There will always be a need for highly structured (institutionalised) care for people with high care needs, respite etc. By providing a facility (group home, group of units, boarding house, hostel, nursing home or village) that supports a small group of people with mixed or the same characteristics (max 10 to15), the residents have an opportunity to develop relationships, participate in recreational activities within the facility and engage in other activities in the wider community. Yes, they are in an institutional setting, but:

The facility that looks after people with high support needs is run by the LCG, rather than the organisation.

The advantages …

… shifts the focus of the service from the organisation to the community,
… the person with a disability has more control over their own lifestyle,
… the person with a disability is a part of their community, rather than a part of a service provider,
… family and significent others have valued roles in supporting the person,
… each community (accommodation, recreation, education and employment) has a greater input in providing for people who have high support needs,
… a more rationalised and effective use of existing community resources (available skills, professional staff etc),
… community resources are tapped into more effectively, thereby reducing the strain on more conventional methods of raising support (Gov funding, donations, sponsorship, fundraising events etc),
… direct care is more open and transparent,
… by being a part of a LCG, members are less likely to slip through the system besause they are a part of the systam. Where there are no rescources available to support their needs, members still feel conected through established networks within their own communities.
etc.

The disadvantages …

… the organisation looses its control over stakeholders as it shifts from an active to supportive role.
… issues of funding, accountability, guardianship, direct care providers (nursing etc)
… locating services in appropriate areas.
… co-ordinating services from different organisations.
… The LCG in more dependant on the resources of the community.
… distributing limited resources between the LCG’s
etc.

The community in the future:  Top

By fulfilling an active role above, the organisation also takes on a certain amount of ownership (in providing for the needs of people with disability), and as a consequence, the community sees its role as a passive and supportive. The higher the profile of the organisation, the higher the expectations of the community in the organisation in fulfilling its role. The community has not had an opportunity to develop the necessary skills for an active role, and as a result a co-dependent relationship is unintentionally created between the people with disability <> organisation <> community.

So far the focus has been on providing the skills to people with disability, families and significant others. Often the people with disability, families and significant others do not have the skills or resources, or incentive to develop the social networks within their own communities. It can be a daunting task to develop the confidence to reach out (especially with a disability). By shifting the focus from the organisation, to the community (and providing the skills and the tools), the co-dependent relationship is broken.

An example of this is where Mr "A" has son "B" who has a severe intellectual and physical disability. Mr "A" currently has the choice of:

… Keeping his son at home and support him himself, ie; learning new skills, hiring appropriate services such as medical, recreation etc,

 "B"'s home is now with the organisation and he is now a part of that community. Mr "A" no longer has any direct input into his son's care and becomes dependent on the organisation in providing for "B"'s needs.

In the future, I see an alternative option for Mr "A" as contacting a LCG that can develop the social networks (living, medical, education, employment, recreation) that are most appropriate for "B" within each community, The LCG would be comprised of a social worker and members from the local school, boarding home, recreation club etc in the community and have trained volunteers. Mr "A" would have the opportunity to develop the support networks (valued friendships etc) for his son within each community that his son is a part of.

Rather than building new communities around people with disability, we should be building existing communities that have the skills and resources and valued roles, where people with disability are a part of their respective community. Through the development of valued roles for the school, employment and recreational communities, they would be a part of the process in finding the most appropriate solution for "B"'s needs. For example, the local school could have its own program where "B" is included in the activities of the school that are most appropriate for "B" and the other members of the school community. Transport for example could be provided by the school, or volunteers, or even other members of the school community, or a mix, depending on the rescources of the school. There is already a transport service industry (Swan Taxis etc) that provides transport for wheelchails etc. Solutions to medical issues could also be found using existing sevices in the community (similar to Silver Chain, HACC etc). Most schools have (or should have) a first aid post where medical needs for "B" could be coordinated through the Dep of Health etc.

By actively participating in activities that support "B", the other members learn valued roles (SRV), behaviours, and skills. These learned values, roles, behaviours, and skills will be reflected in the culture (goals, beliefs, values, cultures, institutions etc) of the community. By becomming a valued member of each community (accommodation, recreation, education or employment), "B" has the opportunity to participate and share experiences with the other members of each community.

<-------> Direct support provided by family, friends (volunteers, co-workers etc) and community
 networks within each community (home, recreation, education and employment).

The various activities of each community (education, living/recreational and employment) would be coordinated through the LCG,
which is supported by the organisations that specalise in a particular area of care.

The stakeholders in the future:  Top

Needs based models of service delivery:  Top

While SRV and PASSING are designed to provide valued roles, social image and compentancy enhancement respectively to devalued people, the particular model of support depends on the needs of the person as well as the needs of their community. People with low support needs only need a small amount of support, and are able to fulfil their needs, actively partake in the normal activities of their community. People with high support needs will require a different model that is more structured and specalised in providing for their needs.

Service delivery has five main finctions:

Different models will reflect a particular aspect of the service delivery, these include, but are not limited to:

Communities are generally a mixture of the three types (Social, Professional and Scientific). Social groups need to have the freedom to socialise, but also need some order and structure to coordinate activities and work within budgets etc. Work places etc need formal structures and environments to achieve the desired goals, but, there also needs to be some flexibility to allow for individual needs. Scientific communities study, measure and analyse the behaviour, performance and the environment of the individual and the group, but, they also need to have some flexibility to allow for individual needs.



The service setting:  Top

Refers to the environment that the support is provided in. Can be accommodation, recreation, education or employment. The setting is usually adapted or modifyed to enhance social image and personal competence, eg, allows the person to participate in the activity in the least restrictive way.

There will always be a need for professional staff that are qualified to provide specalised support (nursing etc). The advantage is that a LCG has the scope to access the appropriate skills from the appropriate organisation. Just as a person would go to a doctor for medical problems and a physiotherapist for other problems etc, the LCG would be able to contact an organisation that specaliases in a particular area of care.

The least restrictive environment often refers to adapting the environment to suit all members, so that they have an opportunity to participate in activities, share experiences and be a part of their community. How the environment is adapted will depend on it's particular construct (social, professional or scientific), the amount of adaptation that is needed to suite all members and how the members are advantaged or disadvantaged through the adaption.

Staff are provided by the service provider, or are employed, to provide specialist care, skills development etc. A person may live in a home that is run by a service provider, and community recreation, education or employment are supported by another service provider. An example of this is in a classroom environment, where a person has a intellectual or physical disability. The adaption is the inclusion of an aide to assist the person has a intellectual or physical disability. How the adaption advantages or disadvantages the others depends on the overall type and the quality of the activities, the opportunity to participate in the activities, share experiences and be a part of their community.



When providing support for prople with an intellectual or physical disability, the environment in which the support is provided is directly related to the needs of the person. The higher the support needs of the person, the higher the intervention, which means that the environment will be more structured and insitiutionalised. This does not mean that the support is dehumanising. It does mean that the support provided is most appropriate to the needs of the person.



The role of the service setting: (See Disability services role models)  Top

Each of the types of settings described above is designed to fulfill a particular need of a group at a particular time. Participants have the opportunity to move from one type of setting to another (isolated, separated, partial integration and full integration etc.) according to their particular need at the time as well as the needs of the group or community that they are a part of.

At a school, for example, we see all the above settings for different activities. We see different classes for different subjects, special classes for students that need help in maths or writing a thesis, one on one tutors that provide specialise support for a need etc. We see various recreational groups designed around an activity that requires a specific setting. Can you imagine trying to play squash on a footy oval, or a game of footy in a squash court? The members of the school community have the opportunity to move from one activity and setting to another according to their own needs as well as the needs of the school. Within the school we also have different communities, the photographic community, the chess community, the pub community etc. Members often participate in one or more communities, and have the opportunity to move from one to another according to their own needs, as well as the needs of others within the school community. Within the school we look for something that interests us or we are good at, as a way to meet others and share experiences and develop valued relationships. People with high support needs may have some difficulty in developing these relationships, but by finding the most appropriate community for the person, and introducing the person to others in the community is a start.



Valued community roles:  Top

Each community has a particular role that fulfils a particular need.
Valued community roles provide a common cause or focus for the community, as well as other communities that are a part of it.
Valued communities provide valued roles for their members.
Social role valorisation provides valued roles for ALL members of the community.

Communities that have valued roles in society …
The values of community start in the home where children have valued roles in supporting others at school, sport or any other community that they participate in.

Communities that have de-valued roles in society …

By providing valued roles to the respective communities (living, recreation, education and employment), where they become more actively engaged in the process of supporting people with disability, they feel that they are a part of the process. Whichever model is used to support people with disability, they all need to meet the same criteria:



By actively participating in activities that support "B", the other members learn valued roles, behaviours, and skills. By engaging the respective community in an active role, the learned values, roles, behaviours, and skills will be reflected in the culture (goals, beliefs, values, cultures, institutions etc) of the community.





Valued roles or valued relationships:  Top

The value of a persons role is purely subjective when applied to different settings and activities in different communities. We all have different roles depending on what we are doing, where we are doing it and who we are doing it with, and therefore the person's role takes on different meanings within each community that the person is participating in. Roles are like the clothes we wear. Each activity requires a different outfit (both literally and figuratively). The example of actors in a play also shows us that roles are learned behaviours. We all are conditioned to behave a certain way (we learn our lines from the moment of birth) according to the activity, setting and the expectations of others within the activity and setting i.e.: we don't wear our bathers to a formal dinner etc. It could also be argued that communities have become conditioned in behaving a certain way when looking after devalued people (in the historical sense, as well as in society today) (Removing the barriers to community participation and inclusion). All members are expected to behave according to their role within the setting. If a person’s role is to be submissive, then, when the person takes on a more active role, the person may be punished.

When we change the perspective from Society to Community we have a better idea of what we are trying to achieve. Community is all about valued relationships, about careing and shareing, about being with others we love (Understanding communities). SRV is all about providing those valued relationships and support networks to disadvantaged people who have been disenfranchised by society for various reasons. Valued relationships transcend roles. Without others to share our feelings with, life becomes meaningless. It does not matter how much money or possessions we have, if we have no one to share it with, life becomes meaningless. SRV is all about building values and relationships in communities. These communities may be a part of an organisation or service provider, a family or club, or work, or school. By providing valued roles for ALL members of each community that the person wishes to participate in and is most appropriate for the person (Disability services role models), the person is more likely to have valued relationships within those communities.



Living in the community:  Top

We see a variety of types of buildings and settings that are used for accommodation within the community (cities, towns, suburbs etc) . We see large highrises, appartment blocks, vilages, estates, units, single dwellings etc that are mini communities within the wider community. These are all designed for specific purposes and fulfill specific needs within the wider community. To a certain degree people choose the setting that most suits their life style. Each style of living has its own advantages and disadvantages.

A one size fits all approach will not work. Accommodation (single, group, clusters, village, nursing home etc) would need to be tailored to the needs of the person (social, medical, specalised support etc) as well as the needs of the community (economic, location, size etc). The needs of  people that have a physical or intellectual disability are as varied as the people themselves. Some need only a small amount of care, and others need full time support, and spend their whole lives in highly structured (institutionalised) care. Lets be realistic in providing for the most appropriate care in supporting people that have a physical or intellectual disability. Of course there will always be facilities that support groups of people (units or "Co-Housing"  or “Small Cluster”, shared accommodation, boarding houses, respite centres, nursing homes etc), but that does not mean that these facilities are not a part of the community.

Rather than build better individual housing, supported accommodation etc, we need to build better communities that are more able to fulfill the needs of its members. By promoting institutions as an important part of the community, we can develop a more appropriate (and holistic) approach to balancing the needs of people that have a physical or intellectual disability with the needs of the community that they live in, i.e. people are placed in accodomation that is most appropriate for their needs, as well as the needs of the community in which they live.

Being a part of a community is also about sharing experiences and participating in other community activities. Community living is more than our accomodation. We also work, and play. We may be employed, go to school or be involved in a local club or community group. There are any number of communities that we may be involved in. People with high support needs may live in accommodation that is supported by an organisation or service provider that is structured to their needs, and have a network of friends within the accommodation. By having the opportinity to develop networks and relationships within other communities, with the support of the respective community,  people with high support needs become valued members of each community.

The LCG could work with existing recreation groups to develop social networks, strategies for inclusion etc for people with disability. A LCG also has the opportunity to build new recreational clubs or groups (probally along the lines of YMCA, Rotary, or Lions, church groups etc) through established community networks, where people with high support needs have the opportunity to develop relationships, share experiences and become valued as a part of that community. The particular type of club would need to meet the needs of the community as well as the needs of individual members.

Education or employment could also be coordinated by the LCG. By involving the whole community (education or employment) in the process, solutions can be found to issues such as transport, participation, medical needs etc, that are most appropriate to the community, by the stakeholders, where people with high support needs can be a part of the respective commuity. The members of the respective communities develop new relationships and skills, and the most appropriate support is provided for the person with high support needs.

A community group or a community service:  Top

A community group is where a number of people get together for a common purpose of interest. The group may provide support for each other, or support others that need some help in providing for their own needs. They share skills and resources to achive the goals of the group. There is a sense of purpose and achievement in the project, All members benifit in participating in the activity. There is a value in being a part of the group. While the group may provide a valued role, it is limited by the skills and resources that can be shared within the group. As a result the members may look to a business or service to provide a skill or resource that is not available within the group. A service is a business or organisation that provides specalised skills and resources to a community that are are not available within that community. The service is structured or organised around a need. This need can be transportation, home maintenance or anything that is not available to a person or a group of people. Services such as electricty, water, gas, telephone etc were originally (and still are in some areas) the responsibility of the person (they were not provided as a community service). The trend today is to encourage individuals (through subsidies or bonuses) to provide for their own needs as much as possible rather that relying on the service. This strategy reduces excessive demand on existing services that are unable, through various reasons, to keep up with population growths.

Originally human services were the providence of a family or group. They managed as best as they could. Over a period of time human services became so specialised within each area of care that they have become service industries within their own right. These services now provide important roles within society. They have the specialised skills and resources that are not available within the wider community. These days the trend is to shift the support mechanisims from congreate care to indivualised care. While the settings may have changed, these mechanisams are still there, where the support is provided by a service that is specialised within a particular area of care. As a result we see a multitude of services that support people in a vartety of settings that most suits the persons needs, as well as the needs of the wider communities that these services are a part of. People with high support needs that can not be supported within their community are still supported by a service that specialises in a paticular area of care.

I feel that a time where people with high support needs are are supported within their own communities will never return. We can change the settings and provide more appropriate supports where these groups have more opportunity to be more involved in local community activities, however, these groups will always have the support structures and mechanisms as a part of their lives. The way the support is provided is determined by the society in wich we live, as well as government policy and practice. This does not mean that a community can not be a part of the process. Who knows what will happen in the future. Will societies be the same as they are now in 100 years time? Will communities as we know them today still exist? Somehow I feel that the answers to both questions will be NO.

Whatever the future is, the reality is that we are living in the present and it is up to us to determine the future. Communities are changing in the sense that they are no longer bound by geographical locations. However, the idea of community is probally more important than at any other time. Communities provide the way we socialise with each other. They provide a way to share experiences, and relationships.

Having a local community support network can be the first step towards independence.

Rather than building new communities around people with disability, we should be building existing communities that have the skills, resources and valued roles, where people with disability are a part of their community.

A better description of a group of stake holders that get together would probably be "local area group" or "a community network of support".
Representatives of the local businesses, recreational groups, youth groups, educational institutions and government departments get together to find the best solutions to enable people with high support needs to participate within each community that they wish to participate in. The community may be a local community or a part of a service provider who specialises in a particular area of care. The idea is to involve other local community services as much as possible in the support.

This has the advantages of ...

An example of a community service providing direct community care:  Top

CLAN Mirrabooka (Community Link and Network) (CLAN)


CLAN is community focused, and provides the skills and networks for families to become empowered.
CLAN is about helping people help themselves.

People with high support needs:  Top

Where people with high support needs can not be supported within a community (family, living, recreational etc), new communities are created that can provide for their needs. We see nursing homes, hostels, group homes and villages designed around groups that have similar characteristics.

Rather than being separated from other communities, we need to involve other communities within the community of the nursing home, hostel, group home or village. I am not suggesting that these facilities become hotels, however, there is a simularity between the role of the hotel and the role of the nursing home, hostel, group home or village in society. A hotel provides services to the wider community that it is a part of. There are function rooms, restaurants, shops, post office, gift shops as well as providing a venue for small community groups. In essence, the hotel is a community that is a part of the wider community, and in some places, the hotel is the community.

By making these communities (nursing homes, hostels, group homes and villages) more accessable to other communities, people with high support needs have the opportunity to become more actively engaged within these other communities. Also, there is no reason why a hotel can not have the ficilities, skills and resources to support maybe 1 or 2 people with high support needs within that community.

The facility provides valued community services, and is more accessable to the wider community.

The good life:  Top

Today disabled people generally have more opportunities to access social activities (shopping, movies, functions etc) that most of us take fore granted. Various government policies are designed to allow entrance to buildings, parks and other venues so that disabled people could participate in and share the same experiences as others in society.

The goal of the human services is to make a positive difference in a person's life. There are things we can change (values, attitudes, behaviours, cultures etc.) and things we can't change (available resources etc.). By enabling people to fulfill their needs, develop community networks, participate in activities and share experiences 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 networks within that community, to facilitate strategies, solutions and activities so that all members have the opportunity to participate in those activities, and connect with other members through shared experiences and valued relationships, the community has the opportunity to become valued by its members as well as other communities that it is a part of. By providing each community with the skills and resources and valued roles that include people with high support needs, these people have an opportunity to participate in activities, share experiences with others and become valued members of each community.

"The good life" means different things to different people. Only by developing the necessary skills, networks and valued relationships within his/her community (living, recreation, education or employment) can a person participate in, and become a valued part of their community. The needs of the person also needs to be balanced with the needs of the community in providing the most appropriate outcome for the person (people with high support needs will need a more structured setting than people with low support needs).

"The good life" could be described as: having the opportunity to participate in activities and share experiences etc (whatever the setting, structured or unstructured), in a positive way, where all the participants have valued roles. Although the settings are more structured and therefore more restrictive, it is possible for people with high support needs to have as good a life as possible that is most appropriate to their needs. (See also Disability services role models).

In conclusion:  Top

I believe that as a human service, we (collectively) (unconsciously) place more emphasis on our own role as a service provider rather than as a service to humanity, and under value the community’s role in a patronising way (that they are not capable, or that I know what is best). Of course they (the community) won’t be capable if they do not have an opportunity to actively participate. The focus, so far in service provision, has been on empowering and enabling people with disability, as well as community education. Problem as far as I can see, is that the community has had a passive role, kind of like a student at school.

I believe that there is a huge resource out there that is not being fully utilised … the community. By using a mix of community valued roles and SRV, the community can take a more active part in supporting people with disability.

The above is intended to provide a more holistic (and realistic) approach to service delivery, where the needs of people with disability are balanced with the needs of their community, rather than the current model, where the needs of people with disability are balanced with the needs of the organisation. I am not saying that SRV is a bad thing, on the contrary, people with disability would still be in the same situation as they were 100 years ago if it was not for SRV. What I am saying is that SRV needs to be put into the context of the community (rather than the community being put into the context of SRV), where the community has the skills, resources and valued roles in providing for the needs of its members (takes ownership). There are no perfect solutions, and communities will make mistakes, but hopefully they can learn from those mistakes and work towards building better communities for all their members.

Just like the fisherman who gave fish to someone in need. After several days of the person asking for fish, the fisherman had had enough and showed him how to catch fish. The person became empowered through knowledge (gaining the skill and the tool to catch fish). So to, the community can become empowered (and develop a sense of ownership) in providing direct intervention in the care of people with disability. Only then can we say that people with disability are valued as a part of their community.

Time line (approx only)

People with disability

 

1800’s
Housed in large buildings etc
 
1900’s
Normalisation, social integration, empowerment, de institutionalisation etc.
Focus is on people with disability and families.
Organisations take on the role of asylums in providing institutional care.
Community (living, Health, Education, Recreation, Emploument etc) takes on a supportive role.

2000
Engaging the community in a more pro-active role.
Focus is on people with disability and families.
(People with disability <> organisation <> community)

Beyond 2000
Providing the communities with the tools for direct intervention.
Shifting from an active role to supporting the community in direct intervention.
Focus is on people with disability <> community <> organisation.
Co-ordinating the various human services (Disability, Health, Education, Aged etc) in providing a more holistic approach to service delivery.
Co-ordinating the various communities with the appropriate services in providing a more holistic approach to service delivery.

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