Barriers to participation and inclusion

What is community? (Top)

The origin of “community” is from the Latin word …

"The word "community" is derived from the Old French communité which is derived from the Latin communitas (cum, "with/together" + munus, "gift"), a broad term for fellowship or organized society." (http://en.wikipedia.org/wiki/Community)

"Community: The origin of the word "community" comes from the Latin munus, which means the gift, and cum, which means together, among each other. So community literally means to give among each other." (http://www.seek2know.net/word.html)

Generally, most people define themselves as a part of a community, in the most generalised form, within society, i.e. the group, team or club is a part of the community, or, the community is a part of the group, team or club. The expression "Community", like family, is also more personal in that there is a greater sense of permanency than a group, team or club. I'm sure you could list 4 or 5 communities that you are a part of: your family, where you work and socialise, you may go to school or be a part of a community group. Expressions such as "The world community", "The environmental community", "The economic community", "The European community" etc. are common in society today.

Communities are generally groups of people that have something in common. They may live in the same area, share common interests or characteristics,
work or play together or just enjoy each others company. They provide something worthwhile to the members in as much as there is a value in being a part of the community.

Communities are about sharing and caring. There is this sense of supporting each other as well being a part of something that is greater than ourselves.
We all have particular needs and look to the community to meet those needs. The community provides us with the skills and resources to meet those needs.

In a sporting community, for example, we learn the skills and contribute to the facilities that are associated with the sport, and support other members within the community. Within the sporting community we see clubs that are communities within the sporting community. Each club has teams and groups that have different functions or roles. These provide each club with a sense of direction and purpose. The management is responsible for the coordination of activities and behaviours that strengthen the community. The players are trained and supported in the providing the best outcomes for the club. The supporters are valued for their support etc.

Within society, we see all sorts of communities. There are ethnic communities, religious, living, sporting, educational, employment and even disability communities. These communities have all evolved to fulfill a social need and have valued roles within society. People generally belong to more than one community, and each is designed to fulfill a particular need. These communities are generally open to all members of society. However, some may have some sort of right of entry, or, are secret or exclusive. These are rare and are specific to a particular group. Communities built around services tend to have some sort of right of entry. Disability communities, educational communities, business communities etc, are all about some sort of characteristic, skill, induction, or a price to pay, that allows the person entry into that community.

Barriers to community participation and inclusion: (Top)

Community Barriers:

1) Communities can become conditioned to behave a certain way. There are numerous examples where the patterns of behaviour within a community have been influenced by a person, event or activity that involves the whole community. They can happen in a short time, or over a period of generations. The attack on the World Trade Centre is a good example where community attitudes and behaviours were changed in a day. The motor car, the telephone, internet and other forms of communication have also changed the way communities behave. We also see the creation of new communities and cultures built around cult figures, ideologies, music etc. Communities can change with each new generation where young people find their own identities, they develop their own language, cultures and customes that are unfamular to older generations. We see communities that have to adapt to the changing landscape. The RSL was formed to support solders returned from the great wars. With the numbers of solders getting smaller each year the RSL is having to find new ways of staying relevant to the community as a whole. Religous communities are also having to look new ways they can stay in touch with the changing needs of their members.
Communities can also change in a subtle way that is not recognised until the transformation has happened. These changes can affect whole communities or communities within communities where members grow up in families and environments, and learn particular ways of thinking, they learn the behaviours, values and roles of their peers. New generations live in communities that are consumer orientated (consumer societies). Why do it your self when you can purchase it? We loose the skills and knowledge to be self sufficent, we see the advertising and become conditioned to a belief that a product is better for us. While the motor car has opened new horizons, we have become dependant on it in almost every aspact of our lives. Governments have also contributed to the reconstruction of communities by becomming service providers or regulating service sectors. There is a great deal of debate about the role of governments in todays society. Just as communities of 2nd and 3rd generation unemployed in England and Europe have lost the skills to actively engage in a productive work culture (Their parents and others have not provided the necessary roles - getting up to go to work etc), and therefore depend (are dependant) on social welfare, so too, communities have lost the skills (or never had them) in providing for the needs of people that have a physical or intellectual disability. The current generation is growing up in a society where service providers provide direct intervention in the care of people with disability and the community supports these activities. They see the ads, read the literature. Their families and peers strengthen this culture and so it becomes the social norm.

2) They are generally outside the experiences of the other members of the community.
Anything that is different to what is expected will elicit a negative response; I dont know how to deal with the situation, or I dont want to deal with this situation, or someone else can deal with this situation, or a conditioned response that has been successful in the past, or learned from other members, or passed down from generation to generation and embedded into the culture.
Comunities can also be suspicious of anything new or different. The beliefs, values, cultures and behaviours (institutions) are valued as a part of the community and anything that comes along that challenges these institutions will be resisted. Muslems for example bring their traditions with them and expect everyone else to respect them. They live and participate in the community but find that they may become marganilised because their cultures, customes and behaviours are not accepted within the wider community.

3) Communities generally cater for the community as a whole, rather than meeting individual needs.
When designing facilities, services or activities for the community, it is impracticable to measure everyone in the community, so a standard is used that takes into account the averages of its members. Buildings are built to a standard, services are designed to meet certain criteria, education and recreational activities are designed around the average person. Any one outside these averages will be disadvantaged. My mother is fairly independent, but restricted to a wheel chair, and simple things like going to the movies etc become a logistical headache. I know that when I buy a pair of pants or a shirt my size it may take me a while to find the right size because one size in one brand is not the same fit in another brand (too big or small). I find the whole process frustrating, and can somewhat imagine what it would be like for someone with a severe physical disability to go throughout their whole life like that.

4) There is generally some form of harm, friction or conflict of interests between the members. A good example is where a person with a physical disability tries to do some shopping and cannot access the shop for various reasons, and complains to the management. The management does not see the need to make any modifications (too expensive etc) and sees the person as a trouble maker. The person becomes frustrated and angry with the manager or feels marginalised in not being able to participate in the activity. The members of the minority group (or others acting on their behalf) become aggressive in asserting their rights (and sometimes without regard to the rights of the others). We see various minority rights movements actively promoting their cause through community education, protests, demonstrations, riots and civil wars. The rights of people with disability that are enshrined in law (Disability Service Standards etc) only came about through advocacy and education, were people made a stand against the community. People can also be marginalised by their behaviour, the activities that they participate in (taking illegal drugs, stealing etc) or association to a particular ethnic, cultural or religious group (street gangs, crime gangs, extreme religious groups etc). There is a perception that the characteristic is harmfull or dangerous to other members of the community. Other people that have aids or a particular contagious disease etc are also marginalised (or even disenfranchised) to protect the other members of the community.

5) Its too hard. People that do not have the support networks necessary for participating in the activities of the community, or may not be able to cope with other members of the community become marginalised. Members that do not have the means (through a disability or a lack of resources - personal and social) find that it is better to just stay at home or mix with their own kind. People who share a characteristic that is rare in the community often become marginalised because of a lack of resources to support their needs. Safety and security also become more important than being a part of the community. A good example is where famous people are hounded by the paparazzi, they feel victimised and powerless to the point that their lives are at risk.

Service / organisational barriers: (Top)

Respect:

We need to respect the wishes of the community (school, person, family and relatives, and other members of the community) in their decision that the support or activity may not suitable, or that they want the support or activity provided in a certain way, even when it is against the principles of SRV. (as opposed to legal issues, human rights issues, moral issues, cultural issues, medical issues etc, which are beyond the scope of this paper). We can explain our reasons and the benefits for doing something a particular way, but we need to keep in mind that the customer is always right. We need to respect their institutions (values, customs and cultures etc). Only by gaining their trust and confidence can we make any difference in their lives. Having the opportunity to learn from experience and make informed decisions about their lives is the first step towards empowerment. Also, by understanding their perspective, there is the possibility that we may learn something new through the experience.

Patronising:

It is too easy to patronise people that have high support needs. We may unconsciously behave in a way that may do more harm than good. An example is where a person has a painting or pottery that has the persons name on it, and it is obvious that the person could not have created the work him/her self. By rewarding the person for the work (e.g.: that's a great painting you did, and you got a prize for it, you are very creative) can be demeaning to the person. We need to focus on what the person can do and the positive aspects of the person. In doing this we are less likely to set the person up for ridicule or failure.

Communication:

Effective communication between members is vital to organisational planing. Communication is not a one way exchange. The community needs to be able to communicate with its members in order to achieve its goals. The members communicate with each other to share thoughts, feelings, experiences, skills and knowledge. Clear thinking and expression of thoughts is essential to effective communication. The community also needs to communicate with others outside the community. To function effectively as a community, the community needs to be able to respond to events that are outside the community and have an impact on the community. Communication allows the members to understand their role and the roles of others in the community.
Effective communication ..

all members feel a part of the process
all members are valued for their input
the community runs smoothly, efficiently and effectively

Over protective:

In the goal to provide "the good things in life" to disadvantaged people, there is a risk that we may shelter them from the perceived bad things. We may deny the person the experience of something we feel that may or may not be in the best interests of the person. We place our own values and experiences on the activity and make decisions, based on those values and experiences, on what the person can or can not participate in. The person is denied the opportunity to learn from the experience and make an informed decision about the experience. Instead of encouraging people to do things themselves, we may do it for them because it is easier that taking the time to assist them. In time the person looses the skills that they once had because those things are done for them.

Placed in unrealistic settings:

People are sometimes put into settings that are often counter productive to the person and the others that are participating in the activity. While the intention is to provide a person with the experiences of everyday life, we may forget that others in the setting are also participating in the activity. We have a responsibility to the person and the others that the person fits into the setting as much as possible. In a train, for example, a person with an intellectual disability is walking up and down the aisle with the aide. The aide is familiar with the persons behaviour and assumes that the behaviour is acceptable. The behaviour is unsettling to the other passengers who are not familiar with the person and only reinforces their negative perceptions and expectations of people that have an intellectual disability in general. When travelling in a train the accepted behaviour (custom) is to sit down or stand stationary. Anyone (white, black, green or has a disability) that walks up and down a train will be seen as strange.

Place unrealistic expectations on others participating in the activity:

By including a person with high support needs (with an aide) in a classroom with other "normal" people, the person may be a distraction to the class, and the others are disadvantaged. If not done properly, it is possible that the others in the classroom may feel some resentment towards the person with high support needs being included in the activity.

Conflict of interests / policies:

Often, a person with high support needs has a number of characteristics that need specialist care. The person may have a medical condition that requires regular attention. Do we allow the person to participate in the activity with appropriate medical care, or do we deny the person the opportunity to participate in the activity because of the particular condition? Or do we deny the person the opportunity to participate because of a particular policy or rule of the service provider? Do we refer to the residents by their name (respect) or as a room number (confidentiality - this does actually happen).

Conflict in models of care:

Conflict between the values of the medical approach vrs the values of the social approach towards service delivery in providing the most appropriate care (providing medical care vrs providing a home like environment). People with high support needs often need special attention to their personal needs (feeding, medications at special times, toileting etc). Do we take them out of their setting to give them their lunch in another more private setting? Do we wake them up three or four times at night to give their medications or check their pads, when the medications can be given and the pads can be checked, at other times. Do we insist that a person goes out for an activity when the person is sick, has a runny nose or a cold.

Balancing the needs of the person, with the needs of the others in the setting, with the needs of the staff, with the needs of the service provider:
In any setting there is always going to be a conflict in meeting the needs of all members. Staff can not be at two places at once, equipment etc can only be used by one person at a time. Residents in an accommodation setting often have their independence taken away from them because staff have other things to do and can not spend time with the resident, or there is a lack of communication between staff and the resident, or the activity or behaviour of a resident does not fit into the routine of the residence. Staff are also often undervalued and taken for granted in providing support. Staff also need to be respected and valued in their role in supporting people with disability.

May be seen as a nuisance or a troublemaker:

Where a person with a disability is trying to standup for his/her basic rights, they may be punished for upsetting the normal routine of the facility. If a resident wants to stay up late, for example, they may be disciplined in some way or just ignored because the resident has always gone to bed at a certain time.
The immediate family of a people with high support needs may see something that they feel in not in the best interests of the person. They may try to step in to a work place and start telling the staff how to do their job.
They are seen as:
Interfering in the workplace
Snooping into other peoples business
Interrupting the normal rhythm and routine of the workplace

Symbols of authority:

Within the service setting, we see symbols of authority:
Residents are often referred to as clients, patients or even room numbers.
Staff office.
Staff name tags.
Report books and charts.
Ownership of individuals through direct intervention in the provision of care.

Association to a service provider:

The service provider may promote itself in the wider community as supporting a particular group to raise awareness and support through advertising, signs, labels, brochures and various community activities The individual may be seen as an object of charity. Just as a group of school children become associated with a particular school, or people that wear leather jackets and chains are associated with bike groups, people with an intellectual or physical disability may become associated with a particular service provider.

Profiling:

Profiling is the practice of targeting a specific group according to a set of criteria (disability, age, income or activity). This practice may disadvantage some groups is as much as they may not be eligible, or the service may not be available in a certain area, or they are grouped together with others of the same characteristics.

Normalisation of practice

Over a period of time, a particular activity or behaviour may become embedded into the culture of the community (institutionalised). What may be appropriate at a particular time in a particular situation may become generalised (as a learned behaviour) and accepted a part of the normal routine of the community. Societies also absorb cultures and institutions from other societies where members of both live together. Sometimes members try to revive the cultures and institutions that have been lost. A resident used to stay up late, for example, and dance to music. The person always had a good sleep and was happy. With the change of staff, the person no longer stays up. The normal practice now is for the person to go to bed early. The person becomes cranky and difficult because 1) the activity has been removed, and 2) the resident spends an excessive amount of time in bed. All of a sudden the resident has a behavioural problem and as a result has a management plan as well as medications to control the bevaviour.

Leadership:

Any formal/informal cultures, policies, values, behaviours, expectations within a community or workplace are generally determined by the community leaders, managers, or influential people within the community or work place. Strong leadership influences the behaviours of the members by the "style" of leadership. This is most noticable in the workplace where the manager has a medical background as apposed to a public service background. While the values of the organisation are supported by both styles, the way in which they are carried out may be quite different. We also see the same thing in politics, where each party upholds the Australian constitution, they all have different policies, objectives and agendas. Weak leadership also means that the community can become unfocused on the goals of the community. Different power groups struggle for control, or the community tries to do to much, or not enough (uncoordinated).

Bureaucracy:

Lack of understanding of service policies and proceedures leads to frustration and confusion in finding the right information or service.
Unable to meet a set of criteria to gain entry to the service.
Treated like a round peg in a square hole: dehumanising.
Lack of staff/resources in meeting the needs of service users.

Removing the barriers to community participation and inclusion: (Top)

Sometimes this is easy, where a community is responsive and there are no major issues to be resolved. Sometimes this is hard, where there is more than one community that is involved, or there are government bureaucracy issues, legal issues, funding issues, medical issues, available skills and resources etc. Sometimes the community has issues, hidden agendas that need to be resolved before we can look at including the person. Sometimes it is just to hard.

Community sensitivity

A community may be unfamiliar with a particular characteristic of a person or a group. There may me some doubt or caution in accepting the person as a part of their community. Placing a group home with 3 or 4 residents in a suburb, gives the neighbors, others at the shops etc. an opportunity to become familiar with this group. Yes, they are still supported by a service, however they have a greater opportunity to participate in the normal activities of the living community.

Over a period of time the community that they live in may become desensitised to their particular characteristics and they may become more accepted in the community.

Skills and resources in the community

The main reason that disadvantaged people end up back in institutional care (See: Community care Vs Institutional (social) care) is a lack of support and services in the community.
This can be for a number of reasons:

... A lack of community interest (values, attitudes etc.)
... A lack of community skills and resources (professional support, facilities, funding etc.)
... Government policy and practice (bureaucracy, lack of coordination between departments etc.)
... Community dependence on institutional care
... No other alternatives

Where do I start?

Plan the process: What are we trying to achieve in the process? What sort of participation are we looking for? If a person is looking for a social community do we place him/her in a sporting community? What support mechanisms are necessary and how do these mechanisms impact on the community?

Identify the target community: In many cases this is straightforward, however there may be other communities within that community. At school, for example, there is the community of the school, the community of the classroom, various social and sporting communities that all interrelate to each other on different levels. A person may be placed in a work community and be a part of that community, but not be a part of the social community and not develop any permanent networks within the social community.

Identify the stake holders: Who are the significant others? Who are the others that are in the reference group (others that are not directly involved, but are a part of the community).

The best place to start is at the beginning.
Introduce the person to the community leader, coordinator or the organiser.
Arrange for the community leader, coordinator or the organiser to introduce the person to others at a function or a social gathering that has been prearranged.
Plan the process with the community members where they take control.

Its to hard

I have heard this argument to often. A lack of understanding in, and planing the process means that the project is doomed to failure before it begins. High expectations are also to blame when we see things crumbling down around us. By taking one step at a time and involving all members in the process, where they take control (ownership), means that the project has a greater chance of succeeding..

It did not work

Its OK to fail. Only by learning from our mistakes can we have a better understanding of what we are doing right.
Some things to keep in mind :
... Does the community have the skills and resources?
... Does the person have the skills and resources?
... Is the community receptive?
... Is the community appropriate for the person?
... Is the person appropriate for the community?

The culture and institutions of the community

Probably the greatest challenge to the project. By understanding the community and how it works is the first step in the process.
... What are the formal and informal values, cultures and institutions that are a part of the community?
... What other communities are a part of the target community?
... How do the members interact with each other?
... What are the hidden agendas?

Community leadership

Probably the most important. Strong leadership that supports the community gives the community a clear direction and will often facilitate solutions.
Communities that:

... Have a clear, positive outcome: outcomes that are clear, attainable, and worthwhile to all members.
... Have committed members: all members feel a part of the process.
... Have effective communication: all members communicate to, and respect each other.
... Have coordination of activity: all members have clear valued roles.

are more likely to succeed.

Community leaders come and go for various reasons. We may think that a person is valued as a member of a community only to find that the person has lost those networks and has no support. This can be for a number of reasons for this, but the most common is that there has been a change of leadership. The person that was coordinating the activities has left and there is no one else motivated to continue on. The values, cultures and institutions of the community change.

The way in which the process was managed

Communities are generally very protective of their values, cultures and institutions. Anything that does not fit in will generally fail.
When a group of people are introduced into a community

All members and stake holders may not feel a part of the process
They may be seen as a threat to the community.
They do not fit into the customs or institutions of the community.
The community may not have the skills or resources to provide for their needs.

Minority group

Scheerenberger, Narje, Wolfsnsberger and others have written extensively about devalued people. Only by letting the community find their own solutions can the project succeed. Failure to find valued relationships for a person with high support needs within the target community is not defeat.

The role of the gatekeeper in the community: (Top)

The gatekeeper: (http://www.answers.com/topic/gatekeeper)

"1. One that is in charge of passage through a gate.
2. One who monitors or oversees the actions of others.
3. A primary-care provider, often in the setting of a managed-care organization, who coordinates patient care and provides referrals to specialists, hospitals, laboratories, and other medical services."

In all communities there is some form of leadership, hierarchical structure or mechanism that:

... Provides the structure of the community
... Provides direction for the community
... Is designed to protect the members
... Is accountable to the community

The local police are invested by an act of government to protect the members of the community. A bouncer or security guard is invested by a social group or organisation to protect the social group or organisation. A community may have some sort of mechanism (a leader or group decision making process) that decides who is entitled to gain admittance and who is not eligible. The police, bouncer or security guard, or any other mechanism is also responsible for the welfare of the members of the group (the community). Anybody that does not behave according to the rules of the group may get removed.

The gate-crasher (Top)

Gate-crasher: (http://www.yourdictionary.com/gate-crasher)
"Informal: a person who attends a social affair without an invitation or attends a performance, etc. without paying admission"

Any person or group that tries to gain admittance without an invitation, approval or sanction risks being removed. Communities are no different in this respect. Any person that tries to force their presence in a community risks eviction.

The definition also states that there is a price to pay:

... Some form of currency or value needs to be offered in exchange for admission.
... Often people bring skills and resources that are valued within the community.
... There is a value in the person becoming a part of the community
... There is some form of negotiation between the gate-crasher and the community
... There may be some form of rite of passage or pass that entitles the holder to free admission

Where a person does not have any skills or resources to bring to the community:

... An organisation or service provider acts as a negotiator or a link in introducing the person to the community
... SRV is an important strategy in creating a valued role for the person
... The community may accept the person through familiarity, understanding and accepting the person.
... The community may accept the person by providing a valued role for its members in supporting the person.

A group of cyclists, for example may be riding along a road in a park. Along comes a person on a motorcycle and wants to join the group. The group may allow the person entry if known to others or there is some value in the motorcyclist being a part of the group, or may call (mobile phone) the police or security to have the person removed.

Communities are no different. If a person is known to others, has something of value for the members, or is able to negotiate entry, the person will be accepted into the community and become a part of the community. If the person is not accepted, he/she will be ignored, asked to leave or forcefully removed.

Building better communities (Top)

Building better communities is more about building better members that are responsive to the needs of the community.

Communities that:

Are motivated.

Have a clear, positive outcome: outcomes that are clear, attainable, and worthwhile to all members.
Have committed members: all members feel a part of the process.
Have effective communication: all members communicate to, and respect each other.
Have coordination of activity: all members have clear valued roles.

are more likely to succeed.

Strategies: (Top)

An issue has been identified, or
A person has a particular problem.

Identify the issues

What is the problem?
Why does the problem happen?
Where does the problem happen?
Who does the problem affect?
How does the problem affect others?
What other issues are involved in the problem?

Build a picture of the problem and how it relates to the person or people.

Identify the stakeholders

Who are the significant others (family, friends, school / work colleagues etc)?
There may be others in the same situation.
How are they significant to the problem?

How can the stakeholders resolve the problem?

Involve the stakeholders (groups, committees, teams etc).
What are the preferred outcomes?
What skills / resources are available?
What other agencies / services are available?
What strategies can be used to resolve the problem.

Identify the communities

Often, there is more than one community involved.
List all communities that are a part of the problem.
Understand the communities involved.
See how they work.
Identify communities within communities.
Identify the members.

How can the communities resolve the problem?

Involve the communities (groups, committees, teams etc).
What are the preferred outcomes?
What skills / resources are available?
What other agencies / services are available?
What strategies can be used to resolve the problem.

Remember: (Top)

Resolving issues can be very complex. Often, there are no perfect solutions.

The target communities may also have unresolved issues of their own which need to be resolved first before the problems of the person or people can be addressed.

Motivate the community.

Advocate / negotiate / facilitate, develop team roles within the stakeholders and the community.

Do not take sides.

The various problems expressed by the person are often best resolved by the stakeholders <> target communities.

Your role should be a supportive role, where the people involved find their own solutions.

Respect the community’s goals, beliefs, values, cultures, institutions, members, roles, resources etc.

Communities are generally very protective. Anything that does not fit in will generally fail.

By working with the community in a supportive role (where they do the work), the community has an opportunity to learn and grow.

Don't understimate what the community is capable of doing, if it wants to.

Solutions that the community have found are more likely to succeed where:

… the community has clearly defined roles/goals
… the community has shared goals, beliefs, values, cultures, institutions etc
… the community has clearly defined boundaries
… the community has ownership of it's members
… the community provides valued roles for it's members
… the community communicates effectively with it's members
… the community can depend on it's resources
… the community can balance it's own needs
… the community can share and draw on skills / resources where needed

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.

Peter Anderson
http://www.psawa.com