Support Community Participation And Social Inclusion

COMMONWEALTH OF AUSTRALIA

INTRODUCTION COMMUNITY PARTICIPATION AND INCLUSION

In this unit we will be exploring the information and skills that a support worker needs to have to maximise the participation of a person with a disability into various community settings and activities to enhance their psychological and social wellbeing and lifestyle.

Areas that will be covered are:

• How to support the person with a disability to{" "} engage with a social network and the broader community?
• What support strategies you can use for community participation and inclusion according to the individualised plan?
• How you can recognise and assist in{" "} minimising isolation for people with disabilities?

WHAT IS COMMUNITY

The idea of ‘community’ probably came about where people gathered around a common area for their mutual benefit. Sharing a language, customs, ideas, skills, goods and services, or protection from enemies would be some of the advantages in being a part of a group.

Additionally communities often have other things in common: they may live in the same area; share common interests or characteristics; work or play together or just enjoy each other’s 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 as being a part of something that is greater than us. We look to community to provide us with the skills and resources to meet our needs.

Generally, most people define themselves as a part of a community. It could be that they are part of a group, team or club which is a part of the wider community. You could probably list four or five communities that you are a part of where you give and take from one another:

• your family
• where you work
• where you socialise
• where you go to school
• a community group like Rotary.

As society and technology changes, the word ‘community’ continues to take on new meanings. New technology in communication and transportation means that a community is no longer where we live. While we may live in a suburb, town, city or some geographical location, they no longer define the communities that we are able to participate in. Internet cafés and forums could mean being part of a discussion group with people from all over the world.

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 fulfil a social need and all have valued roles within society. People generally belong to more than one community and each is designed to fulfil a particular need.

We all have a deep need to belong and be a part of a community. It is one of the aspects of life that brings a sense of purpose, belonging, self-esteem and makes life worth living. Included and not excluded from life.

WHAT DO WE MEAN BY INCLUSION?

Community inclusion is the opportunity to live in the community and be valued for one’s uniqueness and abilities. When we talk about being included in society and community, we are including all areas of life such as:

Community inclusion or the opportunity to live like everyone else, should result in being ‘in’ community and the participation of people with disabilities similar to that of those without a disability. A research article on people with a disability says people are crying out to be included.

“I want to be included”, is being spoken, signed, facilitated,  key-boarded, whispered and shouted by people of all ages,  shapes, sizes, colours and cultures.

(http://www.inclusion.com/artbiggerpicture.html accessed 26-11-2012)

Think back on your life. Can you remember times when you were included and excluded from groups, discussion or ‘communities’? It is not a nice experience to be excluded. We all like to hear the words...

“Welcome! We want to include you. {" "}

Come and be a part of us and our community”.

When a person is excluded, words like these describe how they feel: awful, lonely, scared, sad, mad, unhappy, miserable, depressed, etc. When people are excluded, they feel ‘bad’.

However, when a person is included, words used to describe this are: happy, terrific, loved, great, wonderful, important, thrilled, warm, healthy, etc.

Your answers in activity 1 will probably mirror these words. That is because the responses are worldwide. The answers are the same for people of all ages, people of all lands, tall and short, old and young, male and female. When people are included, they feel welcome, they feel good and they feel healthy.

John O’Brien and his wife who are consultants, spend their time and lives supporting people with a disability to engage fully in life. John has outlined ‘five dimensions of inclusion’ which attempt to capture what makes a good life.

Contributing: We all have gifts and capacities. But ‘gifts aren’t gifts until they are given.’ Using our gifts and capacities are important parts of living a fulfilled life.

Being someone: We all want to be noticed, to be valued by others. We want people to notice if we’re missing, to want to know our opinions, to see us as equals.

Belonging: We all want to belong: to have friends; to be loved; to have people we want to have us around. It is about who we want to be around and who wants to be around us. Belonging is about personal, not professional relationships.

Choice and control: We all want to be allowed to strive for our own unique identity and future. We want to have as much power over our destiny as other people, not to have others making decisions for us – and when we need help we want to be in control of what happens, not to be carried along in the current. Our individuality, our person-hood, is not made up of just big things but also of our many tiny and seemingly insignificant decisions and preferences.

Sharing ordinary places: None of us like to be put away, kept apart from the real world. It is in ordinary places that belonging and contributing matter to us. We want to be free, not locked away, or put aside.

Of Assignment these five dimensions of inclusion are all tightly interrelated. We get to be ‘someone’ because we’re giving our gifts or bringing something individual to an ordinary place. By doing this we get to belong there and we meet people who become friends or more. It is our individual dreams or ambitions, influenced by our gifts and capacities that drive us to want to be known and belong somewhere. 

( http://www.canonsociaalwerk.eu/1992_Toekomstplanning/FiveDimensionsHandout.pdf accessed 2-12-2015 )

CONTEXT OF DISABILITY CARE

The disability sector has some guiding principles and legislation. You will see that Standard 2 is specifically about ‘Participation and Inclusion’. These standards along with the{" "} Disability Services Act 2006 provide the framework by which all service providers must deliver support.

AN OVERVIEW OF THE NATIONAL STANDARDS

The National Standards for Disability Services (NSDS) will help to promote and drive a nationally consistent approach to improving the quality of services. They focus on rights and outcomes for people with disability. The national standards were first produced in 1993. They have been revised to reflect current language, philosophies and service models, particularly the move towards individualised supports and person-centred service delivery.

THE SIX NATIONAL STANDARDS FOR DISABILITY SERVICES

To assist the client to know their rights, the easy read version of the National Standards for Disability services is available from www.dis.gov.au. Also,the web page{" "} www.dss.gov.au has an option to listen to the standards being read to them.

HISTORICAL TRANSITION OF MODELS OF DISABILITY SUPPORT

Over the past 100 years the lives of people with disability and their engagement with the broader community has changed dramatically.

INSTITUTIONAL APPROACH

A brief summary of this history shows that over 100 years ago people with disabilities were most likely to be living with their families. Those with severe impairments would be unlikely to survive and those who experienced catastrophic injury also did not live long or were reliant on relatives to provide care. From the late 1800s people with intellectual disability, acquired brain injury, and multiple disabilities were highly likely to be put into institutions for the insane, or expected to be institutionalised. For 30 years, the institutional model for ‘disabled care’ has been disappearing across Australia. (Disability: Local, National and International Trends, Prepared by Samantha Jenkinson (2008))

In this model of the institutional approach the needs that were met were basic:

• food
• shelter
• water
• medical
• protection from oneself.

This approach looks after the lowest two needs on Maslow’s Hierarchy of Needs. What about the other needs that are important? What about love, belonging, achievement, becoming the unique individual that was created.

Source:{" "} www.psychologyofsuccess.org.uk

The questions and concerns expressed by society led to a deinstitutionalised approach.

DEINSTITUTIONALISATION APPROACH

In the 1980’s and 1990’s deinstitutionalisation saw people moving from institutions to more community engagement. Group homes, cluster housing and support in the family home became the generally accepted ways of supporting people with disability.

Many people with disabilities began to attend mainstream education, worked in open or supported employment and participated in community activities. Many also worked in business services (previously known as sheltered workshops), or attended disability specific day services or groups and special schools.

(Disability: Local, National and International Trends Prepared by Samantha Jenkinson (2008))

In this model of the deinstitutionalisation approach, the basic needs of the person were being met but additionally other needs were beginning to be understood and were being addressed somewhat. For example:

• some choices
• decision making
• learning new skills
• rehabilitation (from being institutionalised).

This approach began to address higher needs for work and family, however services were still able to limit and dictate the choices people had regarding their care.

Funding was given to service providers who were required to offer a range of services that people with a disability had to choose from.

Source: www.psychologyofsuccess.org.uk

Even though this is so much better than the institutions, there is a newer model  that has been implemented.

SOCIAL INCLUSION APPROACH

Social inclusion is about allowing people to participate fully in the social and economic life of the nation – by having a job, receiving a secure and adequate income, and being closely connected to family, friends and the local community.

( https://www.bsl.org.au/advocacy/social-inclusion

There has been a policy shift in Australia in recent years towards individualised or person-centred approaches. Since 2014 NSW, Victoria and WA had pilot programs where people with disability and their families receive their funding allocation as a direct payment.

All states now have funding individually allocated although this does not automatically mean that the supports received are person centred or selfdetermined by people with disability. There seems to be recognition of the need to give people with disability a level of control over their lives and services but with it also a concern for the level of risk and need for safeguards which can often swing

the balance back to inflexible and restrictive practices. (Disability: Local, National and International Trends Prepared by Samantha Jenkinson (2008))

SOCIAL ISOLATION

“I’d like to have friends. It’s really hard. I’ve tried lots of groups but none have worked out. I get really worried about if anyone is going to like me and if anyone is going to have things in common with me and it goes around in my mind and it’s hard to decide to go, so a lot of times I don’t”.{" "}

(O’Connor and Fowkes, 2000)

Most people think that people with intellectual disability have a lot of family assistance or that they have support from service providers or other community organisations, but the truth is that many people living with a disability still experience extreme levels of social isolation. This is both a cause and a consequence of a range of difficult life situations that many people living with a disability commonly experience.

Many people with a disability grow up with limited family support and they may also have limited capacity and resources to advocate for themselves, or to develop supportive connections with others in their local community. Social exclusion is an important factor in explaining the social isolation of individuals. While many people with intellectual disability might be highly visible in the community and be seen to access services and community resources, opportunities for meaningful engagement and the full range of human relationships with others outside of the ‘disability service system’ are limited. They are often socially restricted to organisationally-based social activities with other people with a disability. (Craig and Bigby, 2010)

The first experiences that people without disability have of people with a disability are crucial in setting their personal attitudes and these experiences will encourage them to either exclude or include people in their social networks. Prejudice against people living with a disability is common, and there are often major challenges to the inclusion of people with disability especially in the social networks of people without disability. (Craig and Bigby, 2010).

People with a disability often identify numerous personal and social barriers to community inclusion, such as:

• being ignored and not accepted by others (people not talking to them).
• having limited community facilities and opportunities for social exchange.
• transport and financial issues that decrease their access to social venues and

events. (Abbott and McConkey, 2006).

Social isolation can be described as having two components:

• a low level of social interaction with others, combined with
• the experience of loneliness. (Findlay and Cartwright 2002)

YOUR NOTES

As a support worker it is important to advocate for your client against exclusion and advocate for inclusion. This also involves assuring that all support systems are available to those who need such support: ? Inclusion is about ALL of us.

• Inclusion is about learning to live together
• Inclusion values diversity
• Inclusion is about our diverse gifts, differences and weaknesses and how to share them
• Inclusion is NOT just a ‘disability’ issue

WHAT IS COMMUNITY PARTICIPATION?

Being in the community is not the same as being part of the community.

It is important to think about the difference between ‘being in the community’ and ‘being part of the community’. Being in the community means only having a physical presence, but being part of the community means having the opportunity to interact and form relationships with other community members. We can see that this has a direct connection to the word inclusion that was just outlined.

Participation is an action word, the act of sharing in the activities of a group. There are certain elements that help us understand being part of a community. Let’s consider these now.

Being part of the community:

• Means having meaningful relations with community members.{" "} Being part of the community means much more than being treated nicely by staff or even having a citizen advocate or volunteer. It means being known as an individual, a unique person.
• Means contributing to the community. We often think of contribution in the sense of a job, but it means contributing in other ways too. Contributing can be by volunteering, by celebrating when the community celebrates and grieving when it experiences tragedy as well as by engaging in neighbourly acts. Giving and receiving strengthens ties to the community.
• Requires being supported by services and agencies in in order to become less dependent on those services and agencies.{" "} Service providers and support workers must view themselves not as people who are all things to their so-called clients, but as community organisers and mobilisers. Support workers are people who are instrumental in assisting and motivating the person with a disability to become part of their communities.
• Means recognising that people are more than mere victims.{" "} Despite the fact that people with disabilities and their families have been subjected to prejudice, discrimination and even abuse, they should not be regarded as passive objects that happily conform to what is expected of them. When people with a disability have become part of the community, it has often been as a result of their own initiative. Inclusion was not something done for them by others, but something that resulted from their own contributions and characteristics.
• Will take time. In helping people with a disability to become part of the community, there will be frustrations and setbacks. Communities may not always welcome people with developmental disabilities with open arms. Relationships may not always form spontaneously. Acceptance and inclusion will not be accomplished overnight but when people with developmental disabilities are visible and involved in their communities—in schools, workplaces, and neighbourhoods—good things happen. (Building Stronger Communities For All 1999)

Since the Commonwealth Government signed the United Nations Convention on the Rights of People with Disability in 2008, a profound shift has occurred in our community. Now that the rights of people with disability have been placed firmly on the agenda, the voices of people with disability are being heard louder than ever before.

The trend in disability care is opening up choices in personal living arrangements and supports enabling active citizenship in communities. It is time that government and the community sees people with disability not for what they cannot do, but for who they are and what they can achieve as citizens.

(Strong Voices a blueprint -{" "} https://www.dcsi.sa.gov.au/__data/assets/pdf_file/0004/13567/strong-voices-a-blueprint.pdf )

ACTIVE CITIZENSHIP

Active citizenship means people getting involved in their local communities and democracy at all levels, from towns to cities to nationwide activity. Active citizenship can be as small as a campaign to clean up your street or as big as educating young people about democratic values, skills and participation. Active citizenship is one of the most important steps towards healthy societies. Watch this short YouTube clip describing active citizenship.

ACTIVE CITIZENSHIP AND DISABILITY

The concept of active citizenship is not new, however it is new language in the disability sector. This new language is replacing the language of ‘needs and services’ with ‘concepts of active citizenship’. There is a move from:

• traditional models of support based on group services with limited choice, towards
• giving people more choice and control over the support required to live independently and participate in the community.

Watch this short You Tube video on the European project called DISCIT.

Across Australia all states and territories are addressing more choice and community inclusion. For example in March 2006, the Disability Services Commission (WA) implemented a series of projects with different service models and strategies to increase the opportunities for community inclusion. The aim was to provide actual inclusion and/or increase the capacity of community networks to include people with disabilities in a natural and mutual way.

Feedback from participants has been that volunteering has provided a sense of worth and giving back to the community in a meaningful way bringing about a sense of having a valued role. Through volunteering, participants have had the opportunity to develop skills and gain confidence that can be transferred into formal employment opportunities and some participants have since gained paid

employment positions. (Review Report: Alternatives to Employment Demonstration Project 2006-2008)

The Quality Framework for Disability Services (Department of Human Services 2007) identified 16 life areas which are important to most people and are directly associated with the way wellbeing is measured. These can be used as a guide to help identify and address some of the barriers and circumstances that prevent might otherwise people with a disability from being fully included in local community life. The areas of life important to people are:

1. Always learning: people with a disability experience lifelong learning and education.
2. Being part of a community: people with a disability participate in the life of the community.
3. Being independent: people with a disability experience individual choice and control over their life.
4. Being safe: people with a disability experience physical and emotional safety and are free from abuse, neglect and avoidable injury.
5. Building relationships: people with a disability experience healthy, constructive and respectful relationships.
6. Choosing supports: people with a disability choose their own supports and contribute to determining the manner in which supports are provided.
7. Communicating: people with a disability seek, receive and impart information, ideas, opinions and feelings through their preferred communication style.
8. Doing valued work: people with a disability experience meaningful and rewarding employment with just and reasonable conditions.
9. Exercising rights and responsibilities:{" "} people with a disability exercise human rights.
10. Expressing culture: people with a disability experience a sense of cultural identity and belonging.
11. Having fun: people with a disability experience a sense of social wellbeing through enjoyment of life including time for leisure and recreation.
12. How to live: people with a disability experience an adequate standard of living through exercising control over their living circumstances.
13. Looking after self: people with a disability experience the best possible physical, mental, emotional and social health.
14. Moving around: people with a disability move freely in their environments and in the community.
15. Paying for things: people with a disability experience an adequate standard of living through exercising control over finances.
16. Where to live: people with a disability experience an adequate standard of living through access to adequate and appropriately located housing.

Guide to the National Quality Standards 2013

Remember, being in the community is not the same as being part of the community. The role of a support worker is to continually look for ways to include your client in areas of interest, strength and capacity. There may be skills that need to be developed or maintained in order to meet the client goals for their life.

Organisations and support workers must continue to use best practice in developing plans for inclusion of a person with a disability into the community. In your studies you will have already developed an understanding of the main practices that will be used:

• person-centred support
• capacity thinking
• building alliances within the community
• creating understanding
• opening up choices and opportunities ? raising expectations
• nurturing relationships.

We are artists, musicians, actors, poets and athletes,  just like everyone else.

We have talents to give to the world.

We find arts give meaning to life.

Arts and sports are a key part of our belonging to society.

We have the right to play sports with others who have disabilities.

We also have the right to play sports that are open to everyone.{" "} _Source:

anonymous self-advocate

“Whatever the speed of our feet or the power of our arms, each of us is capable of the highest virtues. Intelligence does not limit love, or wealth produce friendship.”

“Every person, regardless of whatever different abilities they may have, can contribute, can be a source of joy, and can beam with pride and love.”

(Source: Eunice Kennedy Shriver ( http://www.dhs.state.il.us {" "} Community Inclusion accessed 3-12-2012)

YOUR NOTES

SECTION 1 ENGAGE WITH SOCIAL NETWORKS 

IN THE COMMUNITY

INTERESTS TO ENGAGE THE CLIENT

The starting point is to identify interests, abilities and requirements of person with disability in order that they may engage with a social network.

It is necessary to accurately identify the interests and abilities of your client so they can start to build and develop a social network. In the case study above the team explored David’s interests and some options were suggested to David and his parents. They were monitoring David’s involvement in horse riding over a few months and saw he was making some progress, but still very frightened.

When the other suggestion proved to be much more enjoyable and rewarding for David his community access plan was changed. The care team need to continue to check with the client and their carers to evaluate if the strategies are meeting the goals. Changes to support the plan will often need to be made.

Monitoring and evaluating goals and plans is a normal part of life and it is essential when working with any client. We will now look at a sample activity plan to demonstrate what a plan could look like and the documentation required to show ongoing evaluation of the plan.

Description of activity:

2. 3.

Method: (This is how you will accomplish the goals, objectives and the activities that you plan to implement.)

1.

2. 3.

Evaluation/reflection 

(How was this activity effective? How did you know it was effective?)

What was the outcome? 

(Was the activity successful? Are there any learnings for next time?)

                  Staff name                                       Signature                                         Date

An individual lifestyle plan is a first place to look to know the interests of your clients. This document has been developed with the client, their close contacts and the service team. This will give you lots of helpful information to continue to provide for the changing needs of your client.

The other main source of information should be the client, whenever possible. The case study above highlighted how difficult it can be at times to understand what a client wants. If their disability effects their communication and self-expression, then there can be some guess work and creativity needed.

Look for ways to build communication with each individual client. Sometimes by watching them closely in different settings, you can get clues as to their interests and likes and may be able to try some options.

Things you could observe in everyday life can be the key to discovering an interest or opportunity to develop community participation:

• What TV shows does the person like?
• Are there any sports the person likes?
• What hobbies do they have?
• When do they really light up and enjoy themselves? Look at the different settings or people or environments when your client really enjoys themselves and start from there.
• What are their physical capabilities that they could maximise? ? What are they good at?

Combining all this information with further discussion with the support team and carer or family is a way of continuing to develop ongoing interests for your client.

If you cannot get clear information directly from the client then others will be able to help. Remember, it is a team effort. Many people can be helpful for resources regarding the possible interests of a person with a disability. Anyone who knows the person well, interacts with them regularly or has an interest in people with this type of disability can offer great ideas: ?   The family, close friends, advocates

• The support team
• Allied professionals as necessary (speech therapists, occupational therapists)
• Support groups
• The direct neighbourhood or local community
• Work groups
• Sports and other recreation groups
• Age-related groups (youth or senior citizens) ? Community centres/clubs.

It is important to try options but not get stuck on thinking that one option is the only way. As in the case with David, they tried one thing - horse riding, which was a great start, but David was an observer and not a participant. The team also tried something else (horse races) which was even better. David now fully participates in his community rather than just being an observer.

Being creative and looking for options to connect people with their interests is very rewarding for all involved. As you see a client open up and develop meaningful relationships, you have a sense of achievement and satisfaction that this client is now enjoying a full and happy life.

We can see in this case study that Matt’s needs were not assessed very well from the start. They focused on his physical needs and did not address his holistic needs. There was also a failure by this disability service to review Matt’s goals or follow-up on Matt’s satisfaction. There are many ways to get feedback from a client and their carers. Surveys, questionnaires, interviews and case meetings are just a few options.

OPTIONS TO SUIT THE CLIENT

Once the clients’ interests and abilities have been accurately identified, the next step is to research and identify options available to the client within their community. Remember, the aim is person-centred care. The client is actively involved in the process from the beginning to the end. You may help your client to explore options and research things for themselves or you may be asked to develop some options to present to the client and the care team.

Just as the phrase ‘person-centred’ suggests, a person-centred approach is about ensuring a person with a disability is at the centre of decisions which relate to their life. The ultimate aim is to understand what each individual person wants and needs to live their own, personally defined, good life.

A person-centred process is the cornerstone of individualised support and involves listening, thinking together, coaching, sharing ideas, and seeking feedback. This process is ongoing to ensure each person is supported towards their personal goals, even as they evolve and change.

Person-centred practice also recognises and involves other people who make a difference in a person’s life – family, friends, and the community. Relationships are important in person centered care because friends and family can support the process and help identify and develop the person’s strengths.

Ultimately though it is:

• their life ? their interest
• their choices.

Be careful not to rule out options before the person/client has had time to consider everything and make their own decision remembering a decision may take some time. Respecting a person with a disability involves allowing them the time and space and information they need to make a decision themselves. All of us like to consider choices and process information before making a decision and we usually do not like to be rushed.

As you start to explore options related to your clients goals you need to make sure you are aware of your organisation’s policies and protocols that will guide you in identifying and accessing appropriate resources. Options that you may need to explore could include:

• sporting clubs, etc.

The list could go on forever because we are talking about the interests of each unique individual.

A support worker and the organisation they work for will have developed networks with many organisations within the community. Be aware though that you will need to be open to developing more community networks as each individual client expresses their own individual goals and objectives. Taking this into consideration, there could also be specific cultural needs and resources required.

You can continue to explore options and opportunities and make suggestions to your coordinator if you have seen something that may suit some of the clients in your service.

Having initially carried out accurate assessment with the client and their carers about the resources required for the client to participate in community, issues such as cost limits, time required, support needed and accessibility need to be discussed. The options need to be realistic for the client’s abilities and affordable.

Start by:

Brainstorming the likes, interests and needs with the client, family and support network as discussed previously.

Investigate:

Check out lots of options with your support team, other organisations, community groups and ask the following questions:

• What is the cost involved?
• What equipment is required; special aids or technologies?
• What are the transportation needs and resources available?
• What mobility issues are there?
• What level of support is required for the client?
• Is the venue accessible?
• Are there special communication requirements? ? Requirements for membership if applicable.

ORGANISE AND PRESENTING THE INFORMATION

If the client has not been able to research with you, then you will need to provide clear information in a presentation to the client. You could present information in lots of ways, remembering to be creative in the way you format your research in order for it to be easily understood. Some formats could be:

• flyers/posters: using pictures and not too many words
• you tube video
• web site for interactive information
• a visit to the place to see the activity first hand ? discussions with others in the group.

Presenting information in a suitable format empowers the client in the decision making process and can encourage them to choose to try an option.

Once the options are presented the client needs to be given time to choose. Remember, it is ultimately the client’s choice and you cannot make them participate in something they do not want to. We want to support and empower the individual.

SECTION 2 STRATEGIES FOR COMMUNITY PARTICIPATION

There are still widespread misconceptions and stereotypes about people with a disability. These include that they are a danger, a burden, and a threat. It is not uncommon to hear people express the view that people with a disability would be better off in institutions with people of their own kind. There also appears to be a common belief that people with a disability are not able to make a significant contribution to the community and that they are somehow not of equal value as human beings and members of the community.

Many people have low expectations of people with a disability, believing that they cannot learn or are not able to do anything useful. They are often denied opportunities to experience life, to explore their potential and achieve success, because it is assumed that their potential is limited. It is often stated that people with a disability are tolerated in the community. It should be noted however, that tolerance is not acceptance and genuine inclusion and so denies people with disabilities their rights.

Additionally in a society where the values that predominate are power and wealth, physical prowess, beauty, intelligence, competition, autonomy and self-control, many people with a disability are marginalised and devalued.

It could well be that, as a result of a lack of knowledge, many people are fearful about engaging with and including people who live with a disability and therefore they are treated as ‘the other’ rather than involved. (SHUT OUT 2012 www.dss.gov.au)

Let’s summarise again the powerful successes and benefits of people being able to engage and participate in the community in which they live.

First: Community inclusion is a success when people:{" "}

• have relationships with people who are not paid to spend time with them
• have opportunities to experience a variety of social roles that include friendship, contributing to the community and gaining new skills
• have opportunities and resources to do and accomplish things that are important to them
• experience a sense of belonging.

Second: The benefits of inclusion to the individual:{" "}

• improved feelings of well-being and self-esteem
• access to resources and activities not available in the group home
• expanded horizons and life experiences
• participating in activities in different types of settings
• participation – engaging with others and being known
• feeling the excitement of being part of a community group
• opportunities to make new friends and develop new and varied

relationships

• incentive to learn appropriate social behaviour.

Thirdly: The benefits of inclusion to the community:{" "}

• more diversity in relationships
• the cost of supporting people decreases when persons served do not have to rely on paid professionals. This can affect tax dollars needed to provide supports
• people with disabilities can pay taxes if they have a job
• people with disabilities can share their gifts and talents with the community.

We have already discussed the general community’s misconceptions, stereotypes and devaluing of people with a disability, now we will explore different strategies to support your client to participate in their community. As you know, all stages of providing support is in full consultation with the clients, their carers and the support team. The client gets to run the show.

Some areas we will consider in this section are:

• overcoming barriers to participation
• accessing the local community
• choosing appropriate activities and resources that enhance participation
• accessing options that are available in the community ? getting support when you need it
• reporting concerns and suggestions.

Let’s begin by looking at what{" "} Standard 2 of the National Standards for Disability Services states:

You can take part in the community and feel included when you use disability services.

(https://www.dss.gov.au/sites/default/files/documents/01_2015/nsds_poster_7_combined_6_standards_poster_wcag.pdf)

People with a disability have the same rights, interests and needs as every other member of the community. They want to be involved, included, belong, have fun and love life. The main difference is simply the level of support each individual may require to achieve these goals. It is part of the role of the support worker to provide appropriate support and use various strategies to help these goals and dreams to become a reality. The key point to remember with community inclusion is that everyone has the right to participate in their community and as such, participation should be positive and based on the persons’ individual interests and wishes.

People with disabilities are all too aware of the impact of their impairment. They live with it every day. But what they clearly struggle with is the way that impairment affects their interaction with the social and physical environment. They do not want mountains to be moved, but they do want to be able to go to the library or the

movies. (SHUT OUT 2012 www.dss.gov.au)

How society views impairment and disability has changed dramatically over recent years. The impairment a person has is a reality however the disablement is still caused by environmental and social barriers.

Access and inclusion means different things to different people. Processes and outcomes for access and inclusion cannot be prescriptive. One size does not fit all and one program will not suit everyone. It can be a complex, challenging and yet rewarding journey to meet the individual client where they are, identify their goals and dreams and work with them to plan to achieve those goals. There are also times where the goals are not too difficult to reach, yet barriers can still exist as demonstrated the following case study.

The attitude this mother faced from the gym teacher created a barrier for her daughter to experience a ‘normal place’ and activity that her daughter was very capable of participating in.

Planning for community inclusion and access must take into account the diverse needs of individuals and the nature, strengths, priorities and resources of a community. The common elements of access and inclusion are removing or reducing barriers to participation. By ensuring that information, services and facilities are accessible to people with a variety of disabilities.

A person’s ability to access information, services and facilities is affected by a number of factors, including the degree and type of disability.

(Planning for access and inclusion for people with disability. www.disability.wa.gov.au/)

This case study identifies fairly common barriers to information and services that would be in many communities.

BARRIERS TO INCLUSION

It is understood that people’s engagement with their community enhances their feeling of wellbeing and forges stronger community spirit. This is as much the case for people with disabilities as for the broader population. People with disabilities may be restricted in participation in some areas because of their particular activity limitation or impairment. But factors in their living environment, such as the attitudes of the people among whom they live, the constructed environment and the framing of social institutions may also act as barriers to participation.

People with disabilities are less likely to be employed than people in the broader population, are more likely to have lower income and may rely on a carer. Personal networks are particularly important in supporting the integration of people with disabilities into the wider community.

(Community Participation of People with a Disability ABS 2006)

Each person with a disability will face unique physical and intellectual challenges. They can also face many barriers to inclusion in the community.

In the case study Access and inclusion matters the barriers were as follows:

• Barriers to services and events: The reception desk in the foyer was too high for a person in a wheelchair to be able to communicate comfortably and therefore access services and events at the centre.
• Barriers to physical access: In this instance the kerbs, footpaths, weight of doors, access to desks, the cashier counter all created physical barriers.
• Barriers to accessible information: It was good that there was a notice board in the community centre foyer and also that the pamphlets were displayed where they are within your reach.
• Barriers due to lack of staff awareness: The receptionist was aware that the counter was high – and took the trouble to come to your side of the counter and answer your query. You appreciate this good customer service.
• Barriers to participate in public consultation: The person with disability did not have the same opportunity as others to participate in the community consultation because the consultation venue was not accessible.

If a person with a hearing or vision impairment was visiting the same local community centre as the one used in the above example, they would have faced different barriers.

People with a disability can be non-verbal or have mobility challenges. They may  be unable to control their own movements. This may be true even to the point of being unable to move away from painful or unpleasant sounds, smells, sights, or other sensations.

Barriers can be in any shape or form related to the type of disability or to cultural perceptions and misunderstandings or fear of asking for help. A barrier could be a carer or family member who does not believe the client is capable of achieving their goals and says “No, he can’t do that.”

At times issues will arise that you must refer to your coordinator according to organisational protocol and because they will be the best person to deal with  your concern. In a case such as a carer causing barriers to the client plan to be carried out, some delicate discussions may be required between your coordinator and the carer.

Always contact your coordinator if you feel a client’s choices are being ignored or treated as unimportant. Reporting concerns is essential and the whole team must work together to make sure the client gets the best possible support. Saying “No”, shuts people down.

One residential service that cares for people with disabilities states at their orientation to new staff, “You must never say ‘You can’t do that’ when a client dreams of something they would like to try.”

They went on to give the example of an 80 year old man in a wheelchair that said he would like to sky dive. The response in this organisation would be “Wow that sounds like fun. How long have you wanted to do that? We can check out that activity together.” In this case the person may choose to explore jumping out of a plane or they may just like to go and watch or want to go up in the plane.

Overcoming people’s barriers to inclusion includes understanding and being able to describe and promote the person’s gifts and strengths. This will make the process of inclusion easier.

Remember the common mistake of thinking ‘being physically in the community’ is community participation. The fact that a person is physically present in a community environment does not make it community participation – ‘being an active part of community’ means community participation.

In this case we see the goal of the client established (re-joining community), then the team addressed the possible barriers to that goal (helped him identify his fears) and set a plan in place with the client to help him achieve his goals over time (slow integration and support).

The support team helped Bob, bit by bit, over time to overcome his fears, develop social skills and engage in the community. Overcoming the barriers and achieving goals had a big impact on Bob’s quality of life.

ACCESS TO TRANSPORTATION

It is preferable that a person with a disability utilise public transport where possible as opposed to specialised transport services. The simple act of using public transport engages a person with a disability with the community and the community with the person with a disability.

Transportation however, can be a significant barrier as when we say accessibility it is meant to be applied to the whole journey from starting point to destination. Many clients will require support with mobility or accessing public transport such as: assistance getting up a few stairs; stepping over the gutter to steps; trying to manage a walker; impatience of driver; need for assistance from carer.

It may seem easier to call for a taxi, and it can seem easier for both the person with the disability and the support worker to use specialised transport services (Star Transport, wheelchair vans) even though they are capable of using the public transport system. Mainstream services however, should be accessed first and then disability services as required.

TRANSPORTATION IN METROPOLITAN AREAS

There are benefits to living in metropolitan areas in that most buses on the city networks have low floors or ramp systems. Stations along busways— roads dedicated to buses—have lifts, ramps and pathways. Additionally, tactile paving for people with vision impairment and hearing augmentation for people with hearing impairment are also in place in busway stations.

Many city councils have low-floor buses to allow easier access for all passengers. The low floor buses have:

• level access through the front door instead of steps
• a ramp for wheelchair access
• two wheelchair spaces for wheelchairs up to 1300 mm long, 800 mm wide and with a loaded weight of 300 kilograms.

New buses will also feature stability devices to improve the comfort of passengers in wheelchairs. For more information regarding travelling with wheelchairs and mobility scooters, visit your local council website. It could be possible to arrange for a low-floor bus to arrive at your client’s stop at an agreed time.

Train travellers using a wheelchair or mobility aid will find priority seating just inside the train’s doors. Some Queensland Rail stations have platforms that are slightly higher or lower than the train entry. If you need a portable ramp or help to board or disembark, wait at the assisted boarding point-indicated on the platform by a white wheelchair on a blue background and where there is a mat with a raised, tactile surface.

As a disability support worker you will develop local knowledge of the available transport options for the clients you work with. Each state rail authority have a mandate to make their services accessible. Here are a few examples you may wish to check out:

• Transport for NSW Disability Action Plan 2012 – 2017 http://www.transport.nsw.gov.au/content/ transport-nsw-disability-action-plan-2012-2017
• Western Australia Disability Access and Inclusion Plan 2012-2017 pta.wa.gov.au/

PublicationsandPolicies/DisabilityAccessandInclusionPlan/tabid/119/Default.aspx

• Tasmanian Urban Passenger Transport Framework transport.tas.gov.au/passenger

The Queensland Rail website also has useful information on travelling: {" "} www.queenslandrail.com.au{" "} The website specifically states that Queensland Rail is committed to providing rail services that enable all their customers to carry out their journey without barriers. Through their s tation upgrade program , they continue to improve their facilities and services to provide independent access for all. Customers with a disability, those who have walking difficulties or use a mobility aid can read access information under the following headings:

• Station access guide.
• Access at our stations.
• Access on-board our trains.
• Text messaging serviceTransLink Access Pass.
• Vision Impairment Travel Pass.
• Assistance Animal Pass.
• Travelling with companions, carers or support workers.
• Rail safety and orientation days.
• 1-on-1 travel training.
• Accessibility Reference Groups and customer engagement. ? 2013-17 Accessibility Action Plan.

You will notice that the third last point is Accessibility Reference Groups and customer engagement. The Queensland Rail’s Accessibility Reference Group was established in 2003 and it aims to provide a forum to obtain community input into the development of non-discriminatory and accessible procedures, design work, construction and customer service.

Remember:

Prior and proper preparation and proactive planning for participation prevents poor performance!

Accessible transport and physical access to places makes inclusion possible, however this is still identified as one of the major barriers to people with a disability accessing their community. Designing for inclusion is known as barrier free design or universal design and includes everyone regardless of age, ability or resources.

There are a lot of resources for people to research regarding public transport. Knowing where to access this information and passing it on to your client and their carers is part of your role. They can plan trips, timetables and know the costs all by some research and internet access either with or without support.

Setting goals too low for a person with a disability is limiting and can be patronising. To the other extreme, setting unachievable goals or very high goals will lead to disappointment and failure that could also be devastating to a person’s self-esteem. As a support worker it is important to assist the person with disability and where appropriate, their family, to select activities that will enhance successful integration

Like other Australians, people with a disability join clubs, go to the movies, do voluntary work, learn life skills, attend church and go on holidays. Selecting appropriate activities will enhance successful integration, participation, sense of accomplishment and worth as well as a sense of purpose.

BE A POSITIVE ROLE MODEL

The support worker needs to demonstrate a positive appreciation of their client as a person of worth. We demonstrate our valuing of a person in the way we assist and relate to the individual and in the way we talk to others about that person. Our actions and words communicate our attitudes.

The support worker can be an incredible asset or a hindrance and barrier to the development of their client’s own selfconcept and self-esteem. Likewise, the actions and words of a support worker can influence the attitudes, values and behaviour of people in the community.

Support workers need to provide support in a way that provides a positive role model and promotes development and maintenance of the person’s skills physically, emotionally and relationally. This is demonstrated in many simple things that a support worker does. For example the way we dress, interact and treat other models what is appropriate in community. How we communicate to the person with a disability and how we communicate to others about the person with a disability has a direct impact on how that person learns to view themselves and also interact with others.

The community provides opportunity for role modelling and imitation to occur. The person with a disability will be watching the support worker and learning from them:

• how to interact with others ? how to view themselves
• how to be a part of community.

Read the case study below about a woman who started an art className for people with a disability and the challenges she faced with some support workers.

The attitude and actions of some of the support workers in this case study were negative role models. The clients were not treated as valued people and there were negative impacts on the client and the whole group of people attending the art className. If this was your child, parent, brother or friend how would you respond?

Standard 2 and 3 of the National Standards for Disability Services states:

Standard 2: Participation and inclusion

You can take part in the community and feel included when you use disability services.

Standard 3: Individual outcomes

Your service supports you to make choices about what you want to do. You can work toward your goals.

These standards require service providers to implement policies and practices to ensure that:

• staff understand, respect and facilitate individual interests and preferences, in relation to work, learning, social activities and community connection over time
• the service works in partnership with other organisations and community members to support individuals to actively participate in their community
• the service actively promotes a valued role for people with disability, of their own choosing
• the service works collaboratively with an individual and (with consent) their family, friends, carer or advocate to identify their strengths, needs, and life goals
• the service plans, delivers and regularly reviews services or supports against measurable life outcomes.

ACCESSING COMMUNITY OPTIONS

A person’s level of participation in a particular activity may be influenced by their disability status. But it may also reflect the preferred activities of people of a  certain age.

Going out to a cafe, restaurant or bar, attending a movie, theatre or concert and visiting a library, museum, art gallery, park, botanic gardens, zoo or theme park  are other activities for which increased severity of disability is associated with reduced participation.

Yet increased severity of disability is not associated with markedly lower rates of participation in group activities such as recreational, cultural, community and special interest group, church or religious activities.

(Community Participation of People with a Disability ABS 2006)

Technological change over the past decade has created new ways to participate in community activity from home. Home computers, e-mail, chat sites and a range of other Internet sites offer potential for fresh modes of community interaction.

The disability support team is there to assist the person and where appropriate their family, to identify and access community options that will meet needs identified in the individualised plan and to establish connections through shared interests. Once an option has been decided upon, then it is time to establish strategies to make the option a reality. This needs to be done in a timely and efficient manner. The aim is for the person with a disability to develop the skills that will enable them to access their community as independently as possible.

This may include assisting people overcoming barriers in skill deficit areas by developing skills in:

• using public transport
• banking
• shopping
• communication personal hygiene
• participation in generic community groups and clubs.

These skills enable people with a disability to feel part of their community and to gain the confidence and ability to access community services.

ACTIVE IN LOCAL NEIGHBOURHOOD

Assisting the person, if appropriate, in becoming an active member of their local neighbourhood is very rewarding for the client as they see people they know and can interact in a much more personal and everyday manner.

Often the local neighbourhood presents a person with a disability with many opportunities to develop and increase their confidence to access the wider community.

Volunteering their services has been identified as an ideal opportunity to develop skills such as time management and teamwork that they can transfer to paid employment at a later time if that opportunity arises.

Something as simple as getting to know the neighbours and taking the time and effort required to make the connection can reap many benefits. Offering to look after the neighbour’s cat while they are away may lead to a request from others in the neighbourhood to look after their pet while they are away. Then maybe walking the dog while the neighbour is at work … the progression can be endless!

Local smaller shops where you are known by name are often ideal for a person with a disability to develop their money handling skills and develop relationships. Local organisations such as the Rotary Club or Lions club can provide information and support regarding the local community.

SEEKING SUPPORT FOR THE SUPPORT WORKER

Sometimes, the best laid plans go wrong. This doesn’t mean give up but the situation needs to be reviewed to establish what went wrong and what measures can be implemented to ensure success next time. The service coordinator will need to know what happened and be involved in planning how to move forward.

By sticking to John’s usual routine, Karen ensures that John still enjoys his music group despite a small unforeseen setback. But what if the setback could have  been foreseen?

Karen apologised to John and organised a meeting with the coordinator, John and Karen to discuss with strategies to put reminders regarding his Go Card somewhere that will increase John’s independence. The discussion was recorded and some more goals for independence were established.

Some issues must be reported to your coordinator straight away, such as:

• legal issues
• change in health status or condition ? suspicion of or actual abuse ? falls, and injuries etc.

There will be other issues that you will also need to refer on to others. You need to be able to identify aspects of involvement in the individualised plan outside your scope of knowledge, skills and job role and seek appropriate support. The type of issue that will fall outside the role of the support worker include:

• specialised equipment needs ? changes in clients goals ? attitudes of other people.

Attitudes: A big barrier to the participation of people with developmental disabilities in community activities and organisations is a problem of attitude. Read the following extract from a support worker supporting an Aboriginal adult:

“I provide support to an Aboriginal adult living independently in a flat. He has had difficulty getting a taxi as he appears drunk (due to his disability). He has also been arrested by police as he appears violent (due to his disability).”

This man has significant difficulty participating in the community because of assumptions, negative attitudes and stereotypes. As a support worker these attitudes are something we can influence for the good over time, but cannot be changed quickly.

If your client is having issues make sure you raise this with your team leader and team so there can be discussions on how to best assist and support inclusion for that individual. Sometimes a solution can be found simply by consultation with the client themselves. Other times it may be necessary to refer the issue to your supervisor, another agency or specialised service.

REPORTING CONCERNS AND SUGGESTIONS

Almost every area of community participation will result in maintaining and developing the existing attributes and skills of the person with a disability. For this reason it is necessary to continually update and review the strategies employed. A support worker is in the best place to review and notice changes in the client or if a plan is not working. This plan can have various names including a support plan, skill plan, client plan or an action plan.

Variations in support requirements must be identified and reported to your coordinator. It is essential for your safety and the safety of the client, that you observe your client before proceeding and contact your coordinator if you have any concerns about the their ability to participate, as identified in the plan.

The care cycle shown here identifies the step of reporting change or raising concerns. This is part of evaluation and receiving feedback from your clients.

People with increased dependence often need the opportunity to have disabilities reduced through effective review and the implementation of strategies to maximise their independence. (Shaw1998 pg120)

When the support worker identifies a change or concern, they will work with the person, their family and the disability support team to identify processes and aids requiring alteration. By overcoming problems you are reducing their disability because they have more ability to be involved and active in life.

EVALUATING THE ACTIVITY

The prime goal underpinning any monitoring and evaluation exercise in relation to person-centred planning must be to establish whether its overall aim of ‘good planning leading to positive changes in people’s lives and services’, is being achieved. (Ritchie et al, 2003)

Each activity should be evaluated in terms of both objective effectiveness and how it has been experienced by the person.

The quality of a plan can be evaluated in terms of:

• how well it reflects the Individual it is supposed to be about - their life, vision, needs and desires; and
• how clear, individual and workable it is.

Programs, processes and supporting structures can be evaluated in terms of whether:

• all those involved are satisfied with both the planning process and the activity it generates
• plans are drawn up in such a way that they readily lead to action
• people are making a real effort to help make the plan a reality
• services become noticeably more person-centred (service providers listen better to people using their services and make genuine efforts to meet their needs)
• services truly contribute to making real, tangible, positive differences to the lives of their clients
• there is a positive change across all agencies, organizations and services in the broader community so that every individual can find themselves in a position to readily engage in and contribute to the mainstream of life to the fullest extent they wish
• the individual at the centre of the planning process begins to experience a real change for the better in their life as a result of the plan being put into action.

Any concerns noted should be reported to the coordinator and also documented in the client notes as well as any other documentation as identified by the organisation. Having contacted the coordinator you might be asked to suggest that the client contact their doctor or you might be instructed to contact the client’s doctor or family member.

The sample provided of the weekly log is another type of report a support worker may need to fill in to evaluate programs and progress. Many organisations will have computerised versions of reporting tools that make reporting that much easier and accessible to people in a variety of different locations.

Always follow organisational policies and procedures of who to contact in the event of a client change of concern. After reporting your concern, you will need to monitor the client’s condition and evaluate the effectiveness of the change to the service delivery plan. Keep reporting information until the concern has been addressed with a successfully working strategy/strategies.

All written reporting should be:

• clear ? precise ?         factual
• relevant ? respect privacy           ?         fair
• accurate ? objective         ?         avoid clichés.

WEEKLY LOG

Client name:           Date:   

My main goals this week:

Tasks and activities:

Meetings or special activities:

What went really well this week?

What did not go as planned?

Ideas to raise in my next meeting:

Staff name                                           Signature                                  Date

REFERENCES

Abbott S 1 ,{" "} McConkey R . The barriers to social inclusion as perceived by people with intellectual disabilities.{" "} Journal of Intellectual Disability. {" "} 2006 Sep;10(3):275-87. Absolutely everybody and the related whole of Government action plan 2011–14

Achieving Outcomes In Community Inclusion - A report on the Alternatives to Employment Demonstration Project 2006-2008 - Service Contracting and Development Directorate Disability Services Commission

Craig, D., and Bigby, C. (2015).{" "} She’s been involved in everything as far as I can see: Supporting the active participation of people with intellectual disabilities in community groups.{" "} Journal of Intellectual and Developmental Disability. 40, 12-25

Building Stronger Communities For All: Thoughts about community participation for  people with developmental disabilities. Robert Bogdan and Steven J. Taylor Centre on human policy Syracuse University. 805 South Crouse, room 101 Syracuse, NY 13244-2280, 1999

Findlay, R and Cartwright, C 2002, Social Isolation and Older People: A Literature Review, Australasian Centre on Ageing, The University of Queensland, Brisbane.

Jenkinson Samantha Disability: Local, National and International Trends - Prepared by (2008)

Queensland Disability Service Standards Partners in Quality, Queensland Government 2010

Shaw, Marion W and Lefroy, R.B. (1991) The Challenge of Ageing A Multidisciplinary

Approach to Extended Care, Churchill Livingstone: Melbourne

USEFUL WEBSITES

American Association of Intellectual and Developmental Disabilities {" "} http://www.siswebsite.org/galleries/default-file/AAIDDFAQonID_template.pdf

Australian Government Job Access

http://jobaccess.gov.au/ServiceProviders/ Assisting_job_seekers/Supporting_{" "} jobseekers_with_different_types_of_disability/Sensory_and_speech_disability/{" "} Pages/home.aspx

Australian Human Rights Commission{" "} http://www.hreoc.gov.au/disability_rights/hr_disab/areas/Ch1%20.htm

Australian Psychology Society –Article “Supports, empowerment and self-direction:

The emerging paradigm in the disability sector” 2009 {" "} http://www.psychology.org.au/inpsych/paradigm_disability/ {" "} Community Participation of People with a Disability ABS Social Trends 2006 {" "} www.abs.gov.au

Disability: Local, National and International Trends Prepared by Samantha Jenkinson (2008)

Guide to the National Quality Standard (2013) {" "} www.acecqu.gov.au

Planning for access and inclusion for people with disability. Part 1 – Access and

Inclusion Resource Kit {" "} www.disability.wa.gov.au

SHUT OUT: The Experience of People with Disabilities and their Families in Australia

(May 2012) {" "} www.dss.gov.au

http://www.psawa.com/Barriers_to_participation_and_inclusion.html  

Inclusion! The Bigger Picture by Marsha Forest and Jack Pearpoint {" "} http://www.inclusion.com/artbiggerpicture.html  

John O’Brien - Responsive System Associates {" "} http://thechp.syr.edu/rsa.htm {" "} http://www.capacitythinking.org.uk/FiveDimensionsHandout.pdf {" "} http://www.dhs.state.il.us/OneNetLibrary Community Inclusion