Unit 4: Role of community

4.1 Creation of awareness

4.2 Resource mobilization

4.3 Community participatory rehabilitation

4.4 Self-advocacy

4.5 Community based rehabilitation (CBR)

 

 

 

 

 

 

 

 

 

 

 

4.1 Creation of awareness

The term ‘community’ embodies the importance of each and every member including the disabled individuals as we have witnessed that the existence of a community can allow greater change amongst the people coming from any race, culture, background and religion. In order to bring light to the subject, we must be able to comprehend the dynamics of the terminology; Community. It exists due to the basic fundamentals and the mutual understanding of people including norms, religion, identity and values.
As Albert Schweitzer, a French-German theologian quoted:
“The purpose of human life is to serve, and to show compassion and the will to help others.” Fundamentally, it is our vital duty to allow others to find comfort, show affection and serve every individual with or without special needs. Moreover, a positive approach within the community inherits a productive and drastic phenomenon which will therefore be engraved for the coming generations.

The role of a community towards the disabled individual can be easily elaborated if we emphasize on creating friendly relationships with pure intent and understanding. First of all — the importance of forming a bond has hence permitted the individuals to collaborate and empathize with the disabled individuals which thus automatically creates a sense of worth and belonging. In contrast, a distressed disabled individual won’t be able to be productive if he/she is left alone so therefore, building a connectivity bridge will lead to finding out the similarities and the differences of each and every individual within the community. 

In addition, promoting disability awareness starts from home. A place where the positive attitudes, values and customs are reinforced on a regular basis. Home is dear to everyone, a place of comfort and understanding towards every aspect of life. Teaching your children about disability will help in breaking social barriers and allow a better, wholesome approach to inclusion of people with disabilities. The most essential factors when teaching your child about the importance of disability awareness involves: empathy, acceptance and diversity.

Furthermore, disability awareness signifies in educating the society regarding disability and how we as an individual can bring about the necessary changes. Learning acceptance is the fundamental of having an understanding approach to the disability awareness which hence can take place anywhere such as at home, school, workplace, health institutes, etc. However, we often see discrimination towards the people with disabilities and that can lead to the undesirable outcomes for communities as a whole. Therefore, for a better future, we must try to minimize the discriminating culture and promote disability awareness through platforms for each and every individual, so that the foundations of empathy originates and helps in breaking social barriers.

4.2 Resource mobilization

Community mobilization is the process of bringing together as many stakeholders as possible to raise people's awareness of and demand for a particular programme, to assist in the delivery of resources and services, and to strengthen community participation for sustainability and self-reliance. A lot can be achieved when people from different parts of the community share a common goal and actively participate in both identifying needs and being part of the solution. Community mobilization helps to empower communities and enable them to initiate and control their own development.

Little progress will be made towards mainstreaming disability until community support is built up and the different sectors of society become actively involved in the process of change. CBR programmes can use community mobilization to bring together stakeholders in the community, e.g. people with disabilities, family members, self-help groups, disabled people's organizations, community members, local authorities, local leaders, decision- and policy-makers, to address barriers within the community and ensure the successful inclusion of people with disabilities in their communities with equal rights and opportunities.

This element focuses on how CBR programmes can bring people together to act and bring about change in the communities in which they operate.

Mobilize and manage resources

Financial resources

Fundraising: It is essential to seek financial resources for the development of new programmes or to enable existing programmes to continue their work. Finance for CBR programmes may be mobilized from many different sources. Where possible, the emphasis should be on community-based funding, as this will contribute to the longer-term sustainability of programmes. Possible sources of funding in the community may include:

If sufficient resources are not available locally, fundraising may be required at regional, national or international levels to develop and implement CBR programmes.

Financial management: It is important to establish a transparent system for managing finances. This will ensure that the programme is accountable to stakeholders, including funding bodies, community members and people with disabilities themselves. Financial management is a key role of the programme manager, but others may be involved, particularly when programmes are large and involve large amounts of money. Financial management involves:

 

Funding and sustainability financial support to the programme is provided by the Royal Government of Bhutan and WHO. Under the decentralization policy of the government, all developmental activities and programmes to be implemented in communities are now decentralized. Funds from the central programme are released for implementation at districts by the district health officials

Accessibility

 This is one of the major areas addressed in the CBR programme. If there are accessibility issues related to public buildings, toilets or houses, a certain amount of funds (depending on the problem) is dispersed by the National Fund from the Ministry of Social Services and Social Welfare. Community contribution is expected in the form of voluntary labour. This increases community ownership and ensures sustainability. Amendments to Disabled Persons (Accessibility) Regulations, No. 1 of 2006 are also under way. Several awareness programmes are conducted on access to public buildings and places to create awareness among government institutions at district, provincial and divisional levels.

Community Participation    

The new partner agencies already had acceptance and credibility in the community for other services given. The community became interested in the additional services and became involved in identification and motivation of the visually impaired in accepting services. The community leaders, who were impressed by the visibly dramatic improvement in mobility, daily living and social skills developed by the visually impaired, actively assisted in obtaining other facilities and concessions from the community, Government and financing organisations, all for the improvement of economic rehabilitation for the visually impaired. The process also involved gifted clients as motivators and facilitators, advising families of the visually impaired, community leaders and other rural service organisations in NGO and occasionally Government sectors.

As part of the project development, refresher courses were organised periodically for one week or two week durations. The participating agencies were encouraged to contribute to the agenda by sharing case studies, special aspects of their areas and specific and common difficulties. The refresher courses were planned to be interactive so that issues and projects were analyzed and solutions evolved. The nearby Government officials, blind welfare organizations and eye care institutions were also invited as guest faculty.

Strategies and role of government in promoting participation in CBR

 

In order to improve and strengthen implementation, the Government must set up management structures to facilitate the smooth operation of CBR programmers’. This includes policy-making and planning, appropriate administration structures, provision of resources, decentralization, training personnel, onward referral systems and monitoring and evaluation.

 

Policy formulation, review and promotion

 

Today, various governments have laid down a number of strategies to promote participation of marginalized groups. Governments have policies applicable to vulnerable groups in general, but there is a need to design policies, which adequately address issues of PWDs. This may require formulating new ones, promoting or reviewing existing ones, so that any deficiencies in particular sectors such as health services, schooling and employment opportunities that affect PWDs are corrected. By formulating a detailed policy statement, the government points out what is to be achieved, how to implement change, who is responsible, when can change be made and a commitment to provide the resources. In Uganda, the affirmative strategy has been used to promote participation.

 

Putting up appropriate administrative structures

 

The Government has set up the necessary structures to ensure Community participation in CBR programmes. This includes the Department of Disability and Elderly in Ministry of Gender, Labour and Social Development to coordinate disability issues. This Department has also set up a National CBR steering Committee, which consists of the key stakeholders to monitor the activities of the CBR programmes. Due to decentralization, a similar structure has been duplicated at district and lower levels.

 

Mobilization of resources

 

Funds, personnel, equipment, transportation, physical structures, statistical services, research and information are some of the resources that have to be mobilized. Central and local government bodies, communities and non-Government organisations provide these resources. The government role here is to identify with the communities the available resources, and to point out to the community what it has to do, such as, provide local management and some of its resources. The government can then fill the missing components through training, technical supervision, administrative support and referrals.

 

Decentralizing to encourage community participation

 

One of the key features of CBR programme development is decentralization. However, this in itself is not enough, as there is no guarantee that this process can lead to higher levels of participation in the community based rehabilitation programmes. Decentralization must be followed by a change of attitudes.

 

Training and sensitization

 

This component is important, for building a competent workforce at all levels. In Uganda, training of CBR workers is carried out at UNISE,COMBRA and Makerere University (Makeree University 1994). Sensitization is another key activity. All stakeholders have been involved insensitisation of technical personnel.

 

Building and maintenance referral options

Referral options are looked at as places where PWDs can be referred for treatment, education, employment and legal advice. In most cases, these cannot be handled by communities, so it is the role of the government to ensure that these services are operating efficiently.

 

Monitoring and evaluation

The Government monitors and evaluates the progress of all the programmes relating to people with disabilities. This serves as a check and contributes to the quality of the programmer’s development. High levels of participation are encouraged and where this is not achieved, action is taken to increase the level of participation and the range of stakeholders involved.

 

CONSTRAINTS

 

Inadequate funding

 

The Government would like to extend the CBR programme to the whole country, but due to inadequate funding, CBR is still limited to 10 out of 56 districts.

 

Lack of statistical data

 

The magnitude of disability prevalence is not known due to lack of reliable data. It is hoped that the next Population and Housing Census will come up with better disability statistics for ease of planning and resource allocation.

 

RECOMMENDATIONS

 

Empowerment

 

Even though some measures have been undertaken by the Government to eradicate poverty among PWDs and promote access to employment, this is an area, which still needs greater focus. For example, more PWDs need accessibility to micro-finance schemes in the community. Through this, the government will have ensured that PWDs are engaged in productive ventures for an improved standard of living. There is also a need to promote cultural values and languages, including sign language, which is used by the deaf to preserve and enhance dignity of all.

 

Gender balance

 

Emphasis should be laid on gender balance, fair representation of disadvantaged groups and a call for society to respect the rights of PWDs, particularly the girl child and women. There needs to be better educational opportunities for the girl child, whether she is able-bodied or not.

 

Health care system

 

Since the leading causes of disability are communicable and preventable diseases, an improved health care system is a pre-requisite for reducing the rate of disability.

 

Removing physical and environmental barriers

 

The Government should be able to be more vigilant and avoid activities that increase disability, such as wars and motor accidents. Laws should be enforced to punish careless drivers and those involved in domesticviolence. Work places should be conducive to productivity and repetitive straining influences should be avoided.

 

Institutional rehabilitation

 

Everyone is well aware that community based rehabilitation does not provide all skills to PWDs. There are those who are severely handicapped, and, who still need the services of institutions. Governments should therefore continue to fund Institutions, so that they work hand- in- hand with the CBR programmers'.

 

Coordination

 

As has already been discussed, CBR is implemented by different stakeholders. In order to avoid duplication, the government should be able to coordinate the activities together with the stakeholders and monitor and evaluate them.

 

4.3 Community participatory rehabilitation

Community organizing involves mobilizing a group of people to address common issues and concerns and enabling them to take action. It focuses on collective action; the power derived from the synchronized actions of people in unity, as opposed to separate individuals. Quite akin to the common saying, ‘United we stand, divided we fall.’

From fighting social injustice to inequality, community organizing finds its roots in movements of the past such as the suffragettes and the trade union movements, among others. To put it simply, community organizing consists of these five steps:

§  Listening to people

§  Clarifying common goals

§  Framing strategies for action

§  Helping build leaders

§  Mobilizing the community

There are four fundamental strategies available to neighborhood groups to address community problems: community organizing, advocacy, service delivery or development.

Community organizing is characterized by the mobilizing of volunteers. Staff roles are limited to helping volunteers become effective, to guiding the learning of leaders through the process, and to helping create the mechanism for the group to advocate on their own behalf. Community organizing almost always includes confrontation of some sort. The people who want something get themselves together to ask for it, often the people who could give them what they want get jumpy. Community organizing strategies include meeting with corporate or government decision makers to hold them accountable for their actions, designing programs for others (not the group) to implement that meet the needs of the community, and aggressive group action to block negative developments or behaviors (highway construction that leads to neighborhood destruction, etc.).

Advocacy and Service Delivery are both characterized by doing FOR people. Often professionals like lawyers or social workers will attack a problem on behalf of those perceived as unable to speak for themselves. Job referral services, social work, training for job readiness, homeownership counseling, business plan preparation training - these are methods which fit into the Advocacy or Service Delivery strategy.

Development is a strategy that gets the group directly into the business of delivering a physical product. Generally, groups select a development strategy because the normal course of events is not meeting the areas needs. The profit motive either does not bring private developers into the area - they can't make enough money - or it brings them in to do the wrong thing - they are converting moderate cost rental units into yuppie condos. Development could mean housing or commercial or even industrial development. Development methods require, like the other two strategies, particular skills. Many groups have struggled to achieve good results in housing development with staff whose training, experience and interests are in community organizing, causing pain and suffering for the group and the staff. This is unfair. If we understand the distinction between the strategies, we can see the different resources needed for the methods that fit within them.

Community organizing is the process of building power through involving a constituency in identifying problems they share and the solutions to those problems that they desire; identifying the people and structures that can make those solutions possible; enlisting those targets in the effort through negotiation and using confrontation and pressure when needed; and building an institution that is democratically controlled by that constituency that can develop the capacity to take on further problems and that embodies the will and the power of that constituency.

4.4 Self-advocacy

Self-advocacy is the ability to speak-up for yourself and the things that are important to you. Self-advocacy means you are able to ask for what you need and want and tell people about your thoughts and feelings. Self-advocacy means you know your rights and responsibilities, you speak-up for your rights, and you are able to make choices and decisions that affect your life.

The goal of self-advocacy is for YOU to decide what you want then develop and carry out a plan to help you get it. It does not mean you can’t get help if you need or want it, it just means that you are making the choices and you have to be responsible for the choices you make.

It is important to learn self-advocacy skills because it helps you decide what you want and what is possible for you to expect. When you have good self-advocacy skills you can have more control and make the life decisions that are best for you. Self-advocacy helps to empower you, to speak-up for yourself and make decisions about your life.

Personal Empowerment & Building Confidence

For people with intellectual disabilities, self-advocacy begins with building confidence and control in decisions about our lives. Learning about the right to decide is an important step in the lives of individuals. Article 12 of the Convention on the Rights of Persons with Disabilities says that all people have the right to make decisions about their own lives and they have the right to support in making and acting on those decisions. Many of the initiatives to support self-advocacy that we heard about in our global consultations were focused on individuals becoming empowered and building their confidence and control in their lives.

Peer Support and Self-Help

We heard about many examples of people with intellectual disabilities joining a group to listen to and support each other in day to day challenges. Sometimes these groups start as social groups that organize outings to the movies; the local shopping centre or hold a dance. In some cases the group provides a chance for people to explore issues and challenges in their lives (relationships, employment, housing etc.) As people get to know each other and learn from each other they help each other to build the skills to speak up. These groups can provide people with support to meet challenges in their own lives.

Advocacy for Action

When people come together and share their experiences and challenges they begin to identify common injustices and issues that are important priorities for the group. We heard many examples of self-advocacy efforts which were focused on key shared issues and strategies for action to make change. In these examples groups had developed ideas about specific issues and rights and they had organized actions to be heard and contribute to change. We heard about many different kinds of advocacy including: writing a letter to or having a meeting with politicians; campaigning using media; presentations to governments, conferences and the United Nations; running for elected leadership roles in organizations or governments.

4.5 Community based rehabilitation (CBR)

Disability refers to any form of restriction or lack of disability to perform an activity in the manner, or, within the range that is considered normal for a human being. A person with disability is an individual who is officially recognized by society as such, because of differences in appearance, behavior, communication and functional limitations (WHO,1980)1. Disability may be temporary or permanent and reversible or irreversible and may be described as progressive or regressive.

 

Rehabilitation includes all measures aimed at reducing the impact of disability for an individual, enabling him or her to achieve independence,social integration, a better quality of life and self-actualization. It includes not only training of persons with disability, but also interventions in the

general systems of society, adoptions of the environment and protection of human rights.

 

Community is defined as a group of individuals living together, with similar interests and having the same ideological, religious, cultural and economic aims.

 

Community Based Rehabilitation involves measures taken at the community level to use and build on the resources of the community,their families and the community as a whole. This means that CBR programmes should be planned and implemented with the participation of PWDs. This is different from the so-called community programmes, where the core phases and plans are done away from the actual community, often in the city.

 

Participation refers to the involvement of the beneficiaries in the programmes being initiated/ implemented in the community, in order to ensure ownership and sustainability of such programmes. This is based on the assumption that it is the beneficiaries who know their own problems the best.

 

Community based rehabilitation is a strategy for enhancing the quality of life the person with special needs in improving service delivery, by providing more equitable opportunity and by promoting and protecting their human rights.

"Community based rehabilitation is a strategy within community development for the rehabilitation, equalization of opportunities, and social integration of all people with disabilities. CBR is implemented through the combined efforts of disabled people themselves, their families and communities, and the appropriate health, education, vocational and social services”

Objectives of community-based rehabilitation:

·        Enhance mental and physical abilities of PwD.

·        Equal opportunities and Contribute positively to the development of their communities.

·        To promote and protect the rights of persons with disabilities.

·        To remove barriers and obstacles that disrupt participation.

·        Improve the functional capabilities of PwD.

·        Create public awareness.

CBR Matrix 26Dr. Ahmed Refat AG Refat

Components and principles of CBR

 

As mentioned earlier, the World Programme of Action (UN 1983) concerning the persons with disabilities, was worked out by the United Nations in order to guide the stakeholders in the field of disability. The Community Based Rehabilitation approach is part of the recommendation of the World Programme of Action.

It is increasingly accepted, that a good CBR programme is based on a holistic approach and will include many of the following aspects (O’Toole and McConkey 1995):

•        Understanding community needs;

•        Identifying community perceptions and beliefs;

•        Promotion of social integration;

•        Transferring knowledge to communities but also learning from the communities;

•        Empowering PWDs and community;

•        Encouraging PWDs reach their potential, mobility etc.;

•        Removal of physical barriers, social and physiological;

•        Building strategies for sustainability;

•        Changing negative attitudes;

•        Addressing human rights issues and information sharing, as

•        essential components of the CBR programme.

Some essential ingredients for sustainability which CBR programmes should consider are listed below.