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Strategic Community Empowerment Initiative (SCEI)

  • Synopsis: Published: 2014-10-16 - Concept Paper on Advocacy for meaningful Involvement of People Living with Disability and aging into Disability. For further information pertaining to this article contact: Kayzee Ouma at kayzeeouma@gmail.com.
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"Disability is both a cause and a consequence of poverty. According to the U.S Census Bureau 2005, about 80% of the world's persons with disabilities (PWDs) live in low income countries where they experience social and economic disadvantages and denial of rights."

Background Information on SCEI

Strategic Community Empowerment Initiative (SCEI) is a community Based Organization started in September 2013 but formally registered with the ministry of youths, gender in Nyatike sub county, Migori County in Kenya in May 2014. The Organization is involved in facilitation and formation of initiatives aimed at promoting social-economic welfare of the rural community , focusing on economic empowerment, health issues, education, OVC care and support, promoting gender equality and equity and inclusivity of persons living with disability, while abiding by the principles of , transparency, integrity and accountability in the management and running of its affairs.

SCEI was born by a duo of two physically challenged graduates of Kenyatta University who saw the need to establish legal aid program in Homabay and Migori County where many People living with Disability have no access to Legal Aid while their rights are constantly being violated. Not all members of SCEI are people living with disability, but a majority is and some have children with different forms of disabilities. SCEI works in a broad area of activities including activities that address People with Disabilities (PWDs). The inclusivity of persons living with disability advocacy project's main objective is to advocate for formulation and implementation of legislations and policies that promote the rights of persons with disabilities especially in the rural areas where the majority of PWDs are living.

SCEI's mandate is mainly to lobby and advocate for rights of persons with disabilities. To meet this mandate, SCEI collaborates with its members and partners working in the disability sector. The general practice and experience in disability advocacy is confrontation, with minimum outcomes in the situation of persons with disabilities in Kenya. Effective advocacy requires that the right holders, (in this case PWDs) have the necessary knowledge and skills to influence policy and practice.

SCEI is implementing a project on Disability and HIV and AIDS Advocacy since inception though with no donor funding. The project has built the capacity of persons with disabilities in self-advocacy, stigma and discrimination reduction and enhanced their participation and influence in local and national level policy dialog. The project has also brought out the attitudinal and access barriers that continue to plague persons with disabilities as they access health and other HIV & AIDS related services. Universal access to treatment, care and support remains a mirage unless policies and services become fully responsive to the needs of persons with disabilities.

In the PWDs Program SCEI works in three Thematic Areas namely:

1. Disability and Health

2. Disability and Education

3. Disability and Environment.

Introduction

Disability is both a cause and a consequence of poverty. According to the U.S Census Bureau 2005, about 80% of the world's persons with disabilities (PWDs) live in low income countries where they experience social and economic disadvantages and denial of rights. Their lives are made more difficult by the way society interprets and reacts to disability. In addition to this, environmental barriers and poor policies exacerbate the impact of disability. According to the Kenya National Survey for persons with disability report in 2008, more PWDs live in rural areas than in urban areas.

Key Thematic Areas

1. Disability and Health

Primary barriers to health and health care for the general population are beginning to be well documented, and heightened national awareness of these obstacles has spurred numerous proposals for health care reform. Among the groups that face such barriers are people with disabilities. Information remains limited, but recent studies indicate that people with disabilities experience both health disparities and specific problems in gaining access to appropriate health care, including health promotion and disease prevention programs and services. They also frequently lack either health insurance or coverage for necessary services such as specialty care, long-term care, care coordination, prescription medications, durable medical equipment, and assistive technologies.

Although there have been attempts to address some of these barriers, significant problems remain. For example, the Government neither conducts oversight of Disability Act architectural and programmatic accessibility compliance by counties, health plans, and medical providers, nor assesses health providers' disability cultural competence. Few professional health care training programs address disability issues in their curriculums, and most government funded health disparities research does not recognize or include people with disabilities as a disparity population. These and related challenges will affect the quality of life, productivity, and wellbeing of greater numbers of Kenyans as the population ages, which is projected to lead to an increase in the number of people with disabilities. Given these changes, it is especially important to understand the complex and interrelated factors that contribute to health and health care inequities for people with disabilities, and to identify practical solutions.

According to the Kenya National Survey for persons with disability report in 2008, it was found that, 4.6% of Kenyans experience some form of disability. More disabled persons reside in rural than in urban areas. 15% of PWDs are likely to be affected by environmental factors on a daily basis and 3% on a weekly basis. 65% of PWDs regard the environment as major problem in their daily lives. A quarter of PWDs work in family businesses, but a third do not work at all. 16% women with disability aged 12-49 years use some form of family planning. Some of their key findings indicated that the most common forms of disabilities in Kenya were associated with chronic respiratory diseases, cancer, diabetes, malnutrition, HIV/AIDS, other infectious diseases, and injuries such as those from road accidents, falls, land mines and violence. The studies also found that in urban areas (95%) were likely to be aware of health services than their rural counterparts at (86%). However,(72%) of PWDs residing in the urban areas are less likely to have needed health services compared with the (79%) of PWDs in the rural areas. According to World Health Organization (WHO) the number of people living with disabilities is growing as a result of factors such as population increase, aging, and medical advances that preserve and prolong life. This has in turn increased the demand for health and rehabilitation services. People with disabilities tend to be in poorer health and to use health care at a significantly higher rate than people who do not have disabilities. They also experience a higher prevalence of secondary conditions and use preventive services at a lower rate than others. Moreover, people with disabilities are affected disproportionately by barriers to care. These barriers include health care provider stereotypes about disability, lack of appropriate training, and a lack of accessible medical facilities and examination equipment, sign language interpreters, and individualized accommodations. WHO continues to say information on disability is an important component of health information, as it shows how well an individual is able to function in general areas of life. Along with traditional indicators of a population's health status, such as mortality and morbidity rates, disability has become important in measuring disease burden, in evaluating the effectiveness of health interventions and in planning health policy. According to the U.S Census Bureau in 2005, People with certain disabilities experience specific health disparities and additional unique problems in accessing health care and services. If these problems can be resolved, crosscutting solutions hold the potential to improve health care for the broader disability community. For example:

  • Women with significant disabilities are likely to have fewer Pap tests and mammograms than women who do not have disabilities, and they appear to have less knowledge and awareness of risk factors for cardiovascular disease and participate in less preventive screening for this disease compared with women without disabilities.
  • Adults who are deaf or who experience significant problems hearing were three times as likely to report fair or poor health compared with those who did not have hearing impairments, yet interpreters frequently are not provided during medical visits. Consequently, people who are deaf have significant difficulty communicating effectively with their health care providers and receiving health care information and instructions.
  • Adults with developmental disabilities are at risk for hearing and vision difficulties, cardiovascular disease, obesity, seizures, mental health and behavioral problems, poor oral health, and poor general fitness. Young adults with developmental disabilities often encounter significant problems when they attempt to make the transition from coordinated childhood medical care to adult services. Problems include primary care physicians who are not trained to provide needed care.
  • People who experience significant vision loss are more likely to have heart disease and hypertension, experience a greater prevalence of obesity, and smoke more than the general population. Health care providers rarely supply printed health care instructions, educational materials, and information such as directions for taking prescription medications in accessible formats, and people who are blind or have vision impairments also appear to be excluded systematically from receiving high-quality diabetes education. Access to vision rehabilitation services also can be limited.

2. Disability and Education

The right to education is a universal right recognized by international human rights law and, as such, applies to all persons, including persons with disabilities. Several international instruments, inter alia, the Universal Declaration of Human Rights, the International Covenant on Economic, Social and Cultural Rights and the Convention on the Rights of the Child, affirm the core principles of universality and non-discrimination in the enjoyment of the right to education. According to The Human Rights Council 2014, persons with disabilities face various forms of discrimination in educational settings. The most serious barriers to participation in schools arise from prejudice and misconceptions that lead to deliberate exclusion and segregation. Students with disabilities are stigmatized as people who cannot be educated in regular schools, or at all. This results in education systems in which persons with disabilities are denied the right to education as enshrined in article 24 of the Convention on the Rights of Persons with Disabilities.Article 24 of the Convention on the Rights of Persons with Disabilities recognizes that, for persons with disabilities to exercise the right to education, inclusive education systems must be in place.

The Human Rights Council in March 2014 sat in Geneva for the Annual Interactive Debate on the Rights of Persons with Disabilities. The Convention provided for two-pronged implementation of that right: firstly, non-discrimination in mainstream schools for students with disabilities, reinforcing this right with reasonable accommodation; secondly, a systemic change that requires progressive realization and a transformation plan to counter exclusion and segregation. Meaningful implementation is based upon a complex change process that requires a transformation of the existing legislative and policy framework and the full involvement of all relevant stakeholders, particularly persons with disabilities and their representative organizations.

Through inclusive education laws, States should establish an inclusive education system under the sphere of their respective ministries of education that prohibits rejection from mainstream schools on the basis of disability and provides for reasonable accommodation. A transformation plan should provide the framework for the implementation of an inclusive education system with measurable goals. States should put in place training programs for teachers, create reasonable accommodation funds, provide for accessible materials, promote inclusive environments, improve testing methods, promote the transfer from special schools to mainstream schools, promote monitoring through indicators on inclusive education, provide adequate support to students, and use appropriate communication means and formats. Schools need to be properly funded, while at the same time availability of resources should not be a basis for denying access to the right to education for a student with disability.

3. Disability and Environment

The United Nations Convention on the Rights of Persons with Disabilities (CRPD), Article 3, calls for full participation of persons with disabilities in society. Yet barriers exist in the provision of supports and services that enable seniors with disabilities to attain quality of life and equal access. These include:

a) Home Support Services

Home care and home support programs are essential to any individual whose daily functioning is compromised. They contribute to health, independence, and quality of life. However, the reality is that programs available to persons with disabilities and seniors may vary in terms of range of support options. The eligibility criteria for home support services can differ: some exclude persons with disabilities while others exclude seniors, even though services are required for both groups of individuals. In some jurisdictions, when a person is registered as disabled within the health sector, they may lose that status (along with financial benefits) once they become a senior. This means a gap in service and supports until they can prove (again) their disability status by producing new documentation, such as medical assessments and tests.

b) Accessibility

The built environment can act as a barrier or a catalyst to the participation of individuals aging with disabilities as well as those aging into disabilities. The built environment includes houses, parks and recreation buildings. Too often the built environment is inaccessible to the disabled: no ramps into buildings, obstructed walkways, and lack of signage. Accessible transportation is another major obstacle since the vast majority of countries, whether developed or developing, have an inaccessible public transport fleet. When buildings are designed along universal design principles, the outcome is that persons with disabilities are able to participate in the social, economic, and cultural aspects of the community. Rural location and access to basic services affects persons with disabilities and seniors who are aging into disabilities. For example, Hospital toilets do not have rails, some means of transport do not accept to carry wheel chairs etc.

c) Impact on Individuals and Families

Due to cultural beliefs that Children born with disabilities are a curse, most families in the rural communities still hide their children. People aging into disability or with disability are considered a burden economically and are neglected most of the time.The isolation of these children or the old with disability is not just a violation of their rights to associate with others in the society, but is also against the right to human dignity. A child who is isolated from the society due to disability will never get a chance to grow, adapt and even accept themselves. In addition to this, people with disability often have a lot of potential and this is curtailed when they are isolated and hidden away. There is also an aspect of psychological torture that a person who is isolated from the society goes through.

Aims and Objectives of Disability Advocacy

a) To sensitize the public or decision makers on a specific issue e.g. discrimination of persons with disabilities in education, employment, access to health services and information, or discrimination of access to information by the visually impaired and the Deaf.

b) To persuade or influence decision makers to be more responsive to the needs of persons with disabilities.

c) To promote change in legislation in order to promote equal opportunities for persons with disabilities.

d) To provide a solution to a problem that affects a constituency, in our case persons with disabilities.

e) To expose a problem that needs to be addressed by others - policy makers, program managers, service providers.

f) To defend rights of marginalized and vulnerable persons.

The project is not without Lessons Learnt in disability advocacy. Some of the emerging issues that have prompted the development of this concept include:

I. Complaining

As people with disabilities engage with different actors, their concerns are often packaged in the form of complaints. Admittedly facing years of exclusion and lack of equalization of opportunities for persons with disabilities may result in disillusionment. However, we need to move away from complaining, and package our advocacy issues in a manner that provides solutions.

Working towards enhanced equality should not necessarily be through confrontation. Confrontation will not necessarily yield positive results. If anything confrontation leads to closed doors. Since advocacy is the art of persuasion, we need to engage more in negotiations as an alternative to increase mutual understanding while reducing adversarial engagement.

II. Unified Voice

As a disability voice, we must embrace our diversity. We advocate either as individual organizations or based on our different disabilities. Whereas there may be some specific gains made by the different groups, the impact remains low. "Unity in diversity" describes a sense of oneness in spite of our individual/specific group differences. As we work to influence policy at high levels, there can only be one place for us around the table. Do we have disability advocates who can authoritatively speak for all disabilities? Our message can only be heard loudly and will have greater impact if we approach our issues in a strategic and organized manner. A collective and cohesive voice will yield better results.

III. Conscious Planning and Advocacy

Many organizations engage in advocacy on an ad -hoc basis rather than a systematically planned activity with a budget. Advocacy planning is a systematic way to define our goals and objectives. We need to clarify our goals and steps and work on the details and specifics of the process in order to increase our chances of success. Planning helps to anticipate and plan for possible challenges. Lack of planning leads to missed chances and opportunities and less visibility of our work. This statement by the PedNet coalition sums it all "Keep an eye on the forest, while working on the trees individually".

IV. Monitoring and Evaluation Mechanisms of Disability Advocacy

We need to constantly and consistently evaluate how our advocacy activities contribute to our long-term goals and the improvement of the situation of persons with disabilities. We need to collect evidence along the way and identify and create links between our message and the changes we see around us. These include political statements and actions, adoption of positive language and action in relation to disability, positive changes in access to services and acceptance among others.

Main Activities

i. Advocate for capacity building in the rural community health centers in terms of Funds, equipment, medication and qualified medical practitioners by the government, NGOs and Volunteers

ii. Advocate for Establishment of Disability Conscious Government policies

iii. Sensitization and awareness creation on the health care rights, different forms of disabilities, available health care facilities for PWDs in the rural communities of Migori and Homabay County

iv. Capacity building i.e. training existing health care workers, care givers on sign language

v. Sensitization on Human Rights, Rights of people with disabilities and abandonment of retrogressive cultural beliefs

vi. Creating awareness on the available resources for people with disabilities for example funding from the Kenya National Disability Council

vii. Advocating for the deployment of medical personnel who can Identify and diagnose different forms of disabilities apart from physical disability

viii. Train the community and Parents on how to handle children with different forms of disabilities like Autism

ix. Advocate for increased social welfare for people aging into disability Advocacy involves

In order to achieve these aims and objectives the organization will have to undertake the following;

1. Analysis:

i. What is the problem

ii. What is / are the causes of the problem

iii. What solutions are we proposing

iv. Who is your target(Policy makers, Government officials or Ministries, The public, Professional associations such as Doctors, Police Teachers ,Enterprises/ Businesses, Donor organizations, Trade unions, NGO's, Media).

v. What are the channels of access to influential people

2. Strategy:

a) Focus on specific GOALS with clear paths and work plan.

Our goal must be SMART (Specific, Measurable, Achievable, Realistic and Time bound).

Choose a strategy that will have a great impact - lobbying, media, awareness creation and public education, trainings, petitions, pressurizing, drama, poetry etc.

b) Identify our audiences

Allies (those who support our cause or issue), opponents (those who oppose our issue), and the undecided (those who do not support either side or you need to win them over to your side).

Aim at efficient use of available resources.

3. Mobilization and Networking:

a) Establish strong support for our issue, through the involvement of a wide range of stakeholders - there is strength in numbers.

b) Connect with other organizations that have the ability, mandate and capacity to promote our issue.

4. Action:

a) Identify our tools of advocacy.

b) Choose activity/activities that will achieve maximum impact e.g. lobbying

c) Writing letters, media, a demonstration, petitioning, training people, use of public forums to publicize our issue.

d) Be creative in our approach.

e) Avoid illegal and or unethical activities, such as destroying property, mishandling people, vandalism.

5. Evaluation:

a) Monitor change, attitude, policy, practice.

b) Was our strategy successful

c) What are the outcomes, what needs further advocacy

6. Continuity:

a) Monitor implementation of desired changes.

b) Review our strategy and action, and identify further action to be taken.

c) Document our experiences to inform future advocacy work

d) Remember some advocacy campaigns are single- issue based (time bound), while others are on-going.

Effective Advocacy Strategies

The organization will employ different strategies such as:

1. Lobbying

Much of advocacy work is aimed at influencing decision-makers. Lobbying is the practice of influencing government and political decisions for the benefit of a specific cause. It involves one to one meetings with policy makers. Lobbying is mainly limited to changing laws and policies and it will involve telling policy makers how to write and change laws.

2. Education, Awareness Raising and Sensitization

Education and raising awareness are activities that are central to any development activity in order to empower people to act on new information and understanding. Creating awareness is important towards building audience understanding, influencing opinion and motivating behavior.

a) Awareness raising will be done through mass media, public education forums such as workshops and chief Barazas, carrying out research and summarizing and presenting it in a format that policy makers can easily understand (policy briefs).

b) Awareness raising and sensitization will also take the form of face to face meetings with the target - government officials, members of parliament, parliamentary committees, donors or the public.

3. Mobilization and Networking

This will involve making contact with people and organizations for the purposes of sharing information and possibly working together for greater effectiveness. It will also involve building coalitions with the aim of influencing action. Mobilization will involve building a critical mass in support for our issue. We will also mobilize people for action, especially those who are directly affected by the problem and those who are concerned with the issue. Disabled people organizations must create synergies with other groups such as women organizations or other child rights organizations in order to effectively influence change.

4. Media

The Media is key in changing the public's view on an issue. The media is effective because it conveys information to a large number of people at the same time. Media also sets the agenda for discussions and action. We will engage the media through participation in Radio and Television programs, developing Radio and Television spot messages that advance our cause, and writing articles in the print media to educate the public on our issue. Community media is an emerging avenue for advocacy. The advantage of community media is that it focuses on specific issues in a particular area. This builds up support for national level advocacy. We will develop and maintain working relationships with the media at the local and national level. There is a community Radio established in Homa Bay county buy the Youth which we intend to capitalize on.

5. Dialogging

Advocacy need not be confrontational. Initiating a dialog with our target audience is important. Provide evidence - based information that will inform their decisions to change law or practice. Most policy makers will appreciate sober engagement.

6. Negotiating

Good negotiating skills will enable us to ensure that others understand the point we are making and help to persuade others to take our suggested course of action

7. Challenge Misconceptions about Disability

People with disabilities should be seen as active members of society. They should be seen in different roles and positions, to challenge the stereotypes about disability. People with disabilities should be seen in their roles as parents, as managers, employees, and community members' business people etc.

We will use Global and National Days to advance knowledge on issues of disability as a key strategy of dismantling the myths and misconceptions about disability. Persons with disabilities will collaborate with other mainstream organizations to mark these days as ordinary members of society.

Conclusion

We, the one's who are challenged, need to be heard. To be seen not as a disability, but as a person who has, and will continue to bloom. To be seen not only as a handicap, but as a well intact human being: By Robert M. Hensel



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