Unit III: Community Awareness & Advocacy

1. Community awareness: types and method

2. Role of parents in community awareness

3. Role of professional organization in community awareness

4. Citizen & self advocacy: Human rights & ethical concerns

5. Community based rehabilitation

1. Community awareness: types and method

The biggest barriers people with disabilities encounter are other people. Disability Awareness means educating people regarding disabilities and giving people the knowledge required to carry out a job or task thus separating good practice from poor. It is no longer enough just to know that disability discrimination is unlawful.

Examples of these facets of disability awareness include:

1. Understanding the meaning of disabilities and how it is not a reflection of an individual’s personality.

2. Dealing and communicating with persons that have disabilities.

3. Explaining the types of disabilities that can be expected in society particularly among fellow students.

4. The concept of social equality regardless of disabilities.

Equality

Whatever your child’s disability is, you need to take one day at a time. Children with physical disabilities can quickly learn how to get around and enjoy themselves as much as a healthy child. A wheelchair or a missing arm will not deter a youngster from trying to do things and if you encourage them to be equal, do things their siblings do and encourage them to be self-sufficient, they will grow up to be able to live fruitful lives.

Enter your disabled child into a program where they can learn new things and experience new adventures. Encourage them as much as possible and avoid pity for them, this is the worst thing you can do. They don’t need your pity they need love and encouragement.

If you feel like crying because you’ve watched your child trying to overcome an obstacle for hours, don’t burst into tears. Encourage them as much as you can and move into another room, let the tears out and return to offer more encouragement.

Programs

There are a lot of disability programs available where you child can learn a skill. You may find that they are a computer genius and are able to work technical or mathematical problems out quickly. Enter them into a program where they can learn computer programming or how to fix computers.

There are so many programs available for all sorts of disabilities. If your child is encouraged and believes in himself there is no reason he will not flourish in one of these programs. It may be making baskets and using his hands or being technical and fixing electronics, but with a job to do they feel important and are able to eventually become independent.

Disability awareness needs to be widely spread so businesses understand that because someone has a disability, it does not mean they are unable to do the job and produce results.

A Guide to Disability Rights Laws

Everyone deserves equal rights and there are strict laws when it comes to disability rights from employment equality to public transportation and various services.

Disability Awareness Strategies

The quest for equality amongst all rungs of social strata is one very important cause to ensure that everyone is given a fair chance at living life. As such, the use of multiple disability awareness strategies is vital in teaching others the value of recognizing people with disabilities as equals. In a sense, these are people who are equally capable of amazing feats in various fields and as such should be treated with the utmost respect and recognition.

So what are the avenues through which disability awareness is being promoted?

The most obvious is the program to recognize disabilities in schools. The best way to mold people is to teach them at a young age about the value of equality in all facets. At this stage, children do not have the exterior shutters that characterize adults and are therefore more inclined to be receptive to teaching. There are already many schools that integrate normal children to those with disabilities in order to foster an environment of joint learning. This helps young people with disabilities to be accepted and not alienated from society. It deals them the chance to interact with other kids at such a young age so they become familiar with their environment without having to be cuddled up to it.

Consequently, the opposite can also be a real valuable tool for disability awareness. There are schools that exclusively focus on kids with special needs. This is important because in certain cases, normal schools cannot deliver the important and unique needs of special children. More than just the difference in prom dresses, the various emotional, social, and physical needs must also be adequately served without having to make these children feel that they are “that” different. This is an area that is only beginning to be understood in various forms especially as medical science begins to make major strides in understanding conditions like mental disabilities. Much like the invention of wrinkle cream, these researches take time but as the knowledge base grows, they become progressively more effective, more targeted, and more far-reaching.

Beyond the confines of the traditional and special classrooms, there are plenty of opportunities that show disability awareness strategies in action. A good example is the staging of the Paralympics, the Olympics for people with disabilities. Those who are familiar with these events know what disabled people are capable of extreme feats of human achievement. These are athletes in the purest sense of the word; people who are equipped with invisible solar panels or a Motorola mobile battery allowing them to power through any adversity. In these events, people in wheelchairs compete in a variety of sports including tennis, basketball, and volleyball among others. Amputees run on the track and many other people with disability conquer their perceived limitations to best human achievement in sports. It is the ultimate spite to the perception that those with disabilities will only do well on massage tables.

There are also many causes and volunteer works done to promote greater awareness of disability situations all over the world. Every year, celebrities, athletes, philanthropic organizations, civic groups and many others stage events to bring the limelight to various disabilities. As an example, there are cycling events pioneered by the Pi Kappa Pi fraternity that seeks to attract media attention on the plight of the disabled. These are worthy, noble, and effective causes beyond the pull of web design initiatives and website marketing strategies.

2. Role of parents in community awareness

Parents of children with disabilities have a vital role to play in the education of their children. This fact is guaranteed by federal legislation that specifies the right of parents to participate in the educational decision-making process.

As your child progresses through educational systems, you should know about and follow through on your rights and responsibilities to ensure that you are a contributing partner with the professionals who will influence your child's future.

Parental responsibilities can vary depending on factors such as the child's disabling condition. As a result, parental responsibilities are less clearly defined than are parental rights.

However, some of the following suggestions may be helpful to ensure that your child's rights are being protected:

• Develop a partnership with the school and share relevant information about your child's education and development.
• Ask for clarification of any aspect of the program that is unclear to you.
• Make sure you understand the program specified in the IEP or IFSP before agreeing to it or signing the form. Take the IEP or IFSP form home so you can review it before you sign it. You have 10 school days in which to make a decision.
• Consider and discuss with your child's teacher how your child might be included in the regular school activities program. Do not forget areas such as lunch, recess, art, music, and physical education.
• Monitor your child's progress and periodically ask for a report. If your child is not progressing, discuss this with the teacher and determine whether the program should be modified.
• Discuss with the school any problems that occur with your child's assessment, placement, or educational program. If you are uncertain about how to resolve a problem, you can turn to the advocacy agencies found in most states for the guidance you need to pursue your case.
• Keep records. There may be many questions and comments about your child that you will want to discuss, as well as meetings and phone conversations you will want to remember.
• Join a parent organization. In addition to giving parents an opportunity to share knowledge and gain support, a parent group can be an effective force on behalf of your child

Parents as Political Advocates: The development of parents' organisations evolved from small, local support groups of parents to national professional organisations. The primary function of many parent organisations has changed from providing direct services to advocating for political, legal, economic and social change.

3. Role of professional organization in community awareness

Throughout the world, people with disabilities have united in organizations as advocates for their own rights to influence decision-makers in governments and all sectors of society. These organizations are known as disabled people's organizations.

Disabled people's organizations have arisen in response to societal barriers that have prevented the equal participation of people with disabilities, and as a reaction against the control of people with disabilities by others. For a long time, people with disabilities have been spoken for by health professionals, family and others without regard for their needs, priorities or choices. People with disabilities are their own best spokespersons and representatives, as they know best their needs and aspirations .

Disabled people's organizations usually exist at the regional and national levels e.g. in major cities. They may be “single-disability” organizations and represent individuals with a particular type of impairment, such as a hearing or visual impairment (e.g. country branches of the World Blind Union), or they may be “cross-disability” organizations and inclusive of all people with disabilities (e.g. the National Union of Physical and Mental Handicapped (UNHPM) in Mauritania). In many countries there are also networks of disabled people's organizations, e.g. the Federation of Persons with Disabilities in Burundi. Disabled people's organizations also exist at the international level, e.g. the World Federation of the Deaf, the World Blind Union, Disabled Peoples International; many of these have joined together to form an international network known as the International Disability Alliance (IDA).

Historically CBR programmes and disabled people's organizations have not worked closely together. Disabled people's organizations may be hesitant about working with CBR programmes for a number of reasons, including the fact that, in the past, most CBR programmes were based on a medical model of disability and were run by nondisabled people and professionals, without the active participation of people with disabilities. Also, many CBR programmes have failed to include people with particular impairments, e.g. people with visual or hearing impairments who are priority groups for many disabled people's organizations.

While disabled people's organizations and CBR programmes have differences in their origins and strategies they do share similar goals, e.g. ensuring equal opportunities and social inclusion of disabled people. It is important that both disabled people's organizations and CBR have mutual respect for each other and work towards developing successful partnerships to meet these common goals and ensure the implementation of the Convention on the Rights of Persons with Disabilities 

The role of these organizations includes providing a voice of their own, identifying needs, expressing views on priorities, evaluating services and advocating change and public awareness. As a vehicle of self development, these organizations provide the opportunity to develop skills in the negotiation process, organizational abilities, mutual support, information sharing and often vocational skills and opportunities. In view of their vital importance in the process of participation, it is imperative that their development be encouraged. 

Initially a few people with disabilities come together and form a group of disabled people who work to:

· increase membership

· draw up a constitution and register as legal entity

· form the general body of the organization from the membership

· elect a governing body (through the general body)

· elect office bearers for the governing body

· become part of national or international affiliations and movements.

4. Citizen & self advocacy: Human rights & ethical concerns

Classic autism has gradually evolved into the concept of a larger "spectrum disorder." The rising prevalence of autism and autism spectrum disorder (autism/ASD) diagnoses can be largely attributed to broader diagnostic criteria, adoption of dimensional assessment strategies, increased awareness, linking of services to diagnosis, and the inclusion of milder neurodevelopmental differences bordering on normality. The spectrum disorder diagnosis raises numerous bioethical issues for individuals and society. Three groups of caregivers have important ethical, legal, and social obligations to individuals with autism/ASD: (1) families and advocates of individuals with autism/ASD; (2) health care and other professionals; and (3) governments. Each group may have different views of autism/ASD diagnostic criteria, screening, testing, and the effectiveness of various interventions. All see timely diagnosis as desirable, but earlier diagnosis may not be better, morally or practically. The growing practice of genetic testing in milder ASD raises ethical questions because of its uncertain scientific validity and limited clinical utility. Individuals with autism/ASD have various kinds of needs but all want acceptance and most deserve better accommodations. Governments struggle to provide a fair allocation of appropriate special education and supportive services.

GENEVA (1st April 2015) – Two United Nations human rights experts today called for an end to discrimination against autistic persons and a celebration of diversity. Speaking ahead of World Autism Awareness Day, the Special Rapporteurson the rights of persons with disabilities, Catalina Devandas Aguilar, and on the right to health, Dainius Pūras, noted that about one per cent of the world’s population -some 70 million people- is estimated to be on the autism spectrum worldwide.

“As part of human diversity, autistic persons should be embraced, celebrated and respected. However, discrimination against autistic children and adults is more the rule rather than the exception.

In many countries, autistic persons lack access to services which would support, on an equal basis with others, their right to health, education, employment, and living in the community. When available, services are too often far from human rights friendly or evidence-based.

Autistic persons are particularly exposed to professional approaches and medical practices which are unacceptable from a human rights point of view. Such practices – justified many times as treatment or protection measures – violate their basic rights, undermine their dignity, and go against scientific evidence.

Autistic children and adults face the proliferation of medicalized approaches relying on the over-prescription of psychotropic medications, their placement in psychiatric hospitals and long-term care institutions, the use of physical or chemical restraint, electro-impulsive therapy, etc. This may be particularly harmful and lead to the deterioration of their condition. All too often, such practices amount to ill-treatment or torture.

The autism spectrum should be understood from a broader perspective, including in research. We call for caution about enthusiastic attempts to find the causes of autism and ways to ‘cure’ autism through sophisticated but not necessarily ethical research. Autism as a condition is a critical challenge for modern health systems, in which we need to ensure that the practice and science of medicine is never again used to cause the suffering of people.

More investment is needed in services and research into removing societal barriers and misconceptions about autism. Autistics persons should be recognized as the main experts on autism and on their own needs, and funding should be allocated to peer-support projects run by and for autistic persons.

It is about providing individuals and families with the necessary skills and support to have choice and control over their lives. It is also about equal opportunities, access to inclusive education and mainstream employment to achieve equality and rights enjoyment by autistic persons. It is about promoting their independence and respecting their dignity.

Autistic persons should be respected, accepted and valued in our societies, and this can only be achieved by respecting, protecting and fulfilling their basic rights and freedoms.”

Self-advocacy involves knowing when and how to approach others to negotiate desired goals, build better mutual understanding and trust, and achieve fulfillment and productivity. Successful self-advocacy often involves an amount of disclosure about oneself to reach the goal of better mutual understanding. In other words, it can be necessary to explain that you have autism and what that means in order to explain why an accommodation is needed or helpful.

Ideally, parents lay the groundwork for self-advocacy when the child is young. An important precondition for successful self-advocacy and disclosure is self-awareness. People with ASD need to understand how autism affects their interactions with others and the environment. Also, they need to be familiar with their strengths and challenges. A parent or caretaker can do this with a child from a very early age. In fact, the earlier a child has an explanation about his differences, the better off he will be.

Parents should let their child know of their strengths in any way they can. In addition to developing greater self-understanding, it means talents can be fostered for future academic and professional pursuits.

Teaching Self-Advocacy Skills

Just as social skills and an understanding of nonverbal communication are necessary for those on the autism spectrum, self-advocacy and disclosure requires direct instruction to develop skills.

Areas of instruction can include a variety of topics and skill areas, including:

• Using a child with autism’s IEP as a tool to teach her about self-advocacy and disclosure

• Teaching children or adults about sensory systems and how to ask for environmental accommodations

• Supporting a person on the spectrum in learning how and when to self-disclose

• Introducing a person with ASD to the basics of the Americans with Disabilities Act and other important laws.

• Assisting a child or adult in creating self-advocacy scripts to use a variety of settings and situations.

5. Community based rehabilitation

COMMUNITY BASED REHABILITATION (CBR) – It is a strategy within general community development for the rehabilitation, equalization of opportunities and social inclusion of all people with disabilities. The primary objective of CBR is the improvement of the quality of life of people with disability / marginalized persons. Key principles relating to CBR are equality, social justice, solidarity, integration and dignity

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

• Effective leadership – it would be very difficult to sustain CBR programmes without effective leadership and management. CBR programme managers are responsible for motivating, inspiring, directing and supporting stakeholders to achieve programme goals and outcomes. Thus it is important to select strong leaders who are committed, excellent communicators, and respected by stakeholder groups and the wider community.
• Partnerships – if they work separately, CBR programmes are at risk of competing with others in the community, duplicating services and wasting valuable resources. Partnerships can help to make best use of existing resources and sustain CBR programmes by providing mainstreaming opportunities, a greater range of knowledge and skills, financial resources and an additional voice to influence government legislation and policy relating to the rights of persons with disabilities. In many situations, formal arrangements, such as service agreements, memorandums of understanding and contracts can help secure and sustain partners' involvement.
• Community ownership – successful CBR programmes have a strong sense of community ownership. This can be achieved by ensuring the participation of key stakeholders at all stages of the management cycle (see Empowerment component: Community mobilization.)
• Using local resources – reducing the dependency on human, financial and material resources from external sources will help ensure greater sustainability. Communities should be encouraged to use their own resources to address the problems they face. The use of local resources should be given priority over national resources, and national resources should be given priority over resources from other countries.
• Considering cultural factors – cultures vary, and what may be culturally appropriate for one group of people may not be the same for another group. To ensure CBR programmes are sustainable in different contexts, it is important to consider how they will affect local customs and traditions, what resistance to the programme may be expected and how this resistance would be managed. It is important to find a balance between changing inaccurate beliefs and behaviors related to people with disabilities and adapting programmes and activities to the local context.
• Building capacity – building the capacity of stakeholders to plan, implement, monitor and evaluate CBR programmes will contribute to sustainability. CBR programmes should have a strong awareness-raising and training component to help build capacity among stakeholders. For example, building capacity among people with disabilities will ensure that they have the relevant skills to advocate for their inclusion in mainstream initiatives.
• Financial support – it is important that all CBR programmes develop stable funding sources. A range of different funding options may be available, including government funding (e.g. direct financing or grants), donor funding (e.g. submitting project proposals to national or international donors for funding, in-kind donations or sponsorship), and self-generated income (e.g. selling products, fees and charges for services, or microfinance).
• Political support – a national CBR policy, a national CBR programme, a CBR network and the necessary budgetary support will ensure that the benefits of the Convention on the Rights of Persons with Disabilities and development initiatives reach all people with disabilities and their families. Inclusion of disability issues in government legislation and policies will also ensure lasting benefits for people with disabilities in terms of their access to services and opportunities in the health, education, livelihood and social sectors.

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.

 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.

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:

• local government grants or subsidies;
• local business donations and corporate sponsorships;
• civil society organizations, e.g. Rotary Club, Lions Club;
• service fees or user charges for people with disabilities who have the necessary means;
• raffles, social events, competitions and other special events;
• income-generating activities;
• Microfinance or community-based revolving funds.

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:

• having a mechanism to check that costs are related to the activities which have been outlined during the planning stage or have been agreed with the programme manager;
• maintaining financial records adequately;
• updating financial figures for ready reference;
• putting in systems for appropriate checks and balances;
• Informing all stakeholders on a regular basis about the financial status of the programme.

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.