UN Convention on the Rights of Persons with Disabilities: a call to action on poverty, discrimination and lack of access

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5. Access: an essential human right


Of all human rights, access is one of the most fundamental. In every sphere of life – transportation, employment, ICT, water and sanitation, investment, family and relationships, education, health care, government, civil society, religion, culture and leisure – access is vital for participation.

Access is also unique in being an inclusive and holistic concept that has different meanings in different contexts. Having only one type of access in any field is not enough to ensure full participation of people with disabilities. Conference panel speakers and workshop presenters illustrated that people may have access to one element of justice systems, education, work and ICT, but face barriers in accessing other areas. Plans to increase access, too, may improve one way into a system, but either not affect or even damage another path. In addition, people with disabilities, like all people, are individuals, and each has different access needs.

Measures such as laws, programs affirming rights, service provision and social benefits cannot work in isolation: other needs must always be considered and addressed. These include modifications of physical surroundings, communications systems, legal structures, medical and rehabilitation services and, perhaps most crucially, attitudes. It also includes cooperation between the people and organizations that plan, fund, implement and evaluate these initiatives.

The following pages summarize the key arguments and action points made by panel speakers and workshop participants. All of the access issues mentioned above were reflected and the theme of how access needs are interrelated arose in several important areas. In the discussions of transportation, for instance, participants called for making public transportation accessible to persons with disabilities to improve their access to a wide range of other important services.

With regard to relationships and family, the participants called for change in attitudes, improvements in the standards and monitoring of institutional care, and investment in support systems for families. Education systems are the catalyst for change in society; therefore education must be inclusive, not divisive. Accessibility requires building capacities through better health and education, microfinance and investment opportunities – there is no field that stands alone.

5.1 Panel presentations

Panel speakers at the conference focused on four aspects of access:

5.1.1 Access to justice
Speaker: Facundo Chavez Penillas, Network for the Rights of People with Disabilities, Argentina

“If people with disabilities are excluded from access to justice, they are also excluded from civil society and democracy. This means that access to justice is a prerequisite to human rights.” −Facundo Chavez Penillas

Partial, but not full, access to the law: this was Mr. Chavez Penillas’ opinion on access to justice in Argentina. The panel speaker on this topic, he outlined how examining the situation in Argentina provided commentary on many justice systems, in which the rights of people with disabilities are theoretically recognised through legislation, but not borne out in practice.

For instance, NGOs in Argentina have promoted disability rights leading to an increase in the number of legal claims in this area. In response, health services and the government have increased non-compliance with disability laws and poorer people thus have even less opportunity to access justice.

Lack of knowledge of their human rights by people with disabilities, and lack of training in the area of disability among judges and lawyers, was a recurring issue in the Access cluster discussions. This is a bigger problem for people with disabilities than for some other social groups, such as those seeking legal redress around issues of gender, cultural identity and collective rights, because of the relative lack of organization among disabled people. People with disabilities may not see themselves as belonging to the same social group, or may not have reached the stage of organizing themselves to change laws and practices. This is also true of governments, which might not recognize disability as a crosscutting issue, for instance, in the way that gender often is.

Because people with disabilities may not have much money, they are also disadvantaged by the high cost of legal services. Many countries, including Argentina, have only limited free legal services, and private pro bono lawyers are not necessarily sufficiently committed to working on these issues.

In many countries, the legal system supports some rights of access more than others. Mr. Chavez Penillas has analyzed decisions made by the Supreme Court of Argentina in this area, and found that 95% of cases involving access to health care are found in favor of the plaintiff with a disability. This is completely reversed in cases of access to transport, housing and education, where 95% of legal decisions go against the disabled plaintiff.

Reasons for this may include that the health sector is publicly funded in Argentina and so everyone should be able to use it. In other cases, judges may be reluctant to apply disability rights over property rights in the private sector.

The outlook of the Supreme Court is not all negative, however. In response to questions from conference participants, Mr. Chavez Penillas outlined how last year, in elections for the mayor of Buenos Aires, the Supreme Court ruled against accessibility in voting laws. This year however, it declared that if the voting station is not accessible, people with disabilities can choose to vote outside. There is now also a legal framework for disability rights cases being taken to the court. These are all large gains for Argentina’s legal system and for people with disabilities.

He also highlighted some of the positive developments in access to justice in Argentina. Law schools there have changed their curricula and created programs on disability. Various stakeholders have also joined together to inform teachers of the law on disability rights, and have formed a disability program for all universities in the country.

Developing this process in universities is not enough, however. In common with his legal colleagues from Sierra Leone and Kenya, Mr. Chavez Penillas calls for training for lawyers, judges and everyone in the legal system in disability rights. This will be crucial to the effective implementation of the UNCRPD, both in countries where there is disability legislation, and in those without it.

5.1.2 Access to ICT: If your neighbor is sitting on the floor, you can’t ask for a chair
Speaker: Dr. Joseph Ngu from UNESCO’s International Institute for Capacity Building

This is the analogy used by Dr. Joseph Ngu to illustrate the difficulty of addressing accessibility of ICT in Africa, where many basic services, such as electricity and clean water, are luxuries for many people. Despite this, his organization recognizes that access to ICT is very important for people with disabilities, and their policy towards ICT is guided by three interrelated concepts: access, quality and equity. In order for ICT to become truly accessible in education, he argues, there are four prerequisites:

  1. Access for all students in and out of classrooms
  2. Access for teachers and trainee teachers
  3. Access for teacher educators
  4. Access to researchers in the field of education.

At the moment, Africa is a long way from this goal. A look at the indicators reveals why:

  1. Tele-density varies widely across the continent
  2. So does the number of computers per school or education system
  3. The cost of broadband in West Africa can be prohibitive
  4. The brain drain of ICT professionals to other continents is a big problem.

These factors combine to create a situation in which ICT, which could help in providing access in education and many other areas of life, such as work and the legal system, is in itself inaccessible. It may also heighten the disparity between people with adequate incomes and those who live in poverty, which unfortunately includes a large percentage of people with disabilities in Africa.

Participants in Access workshops echoed Dr. Ngu’s call for access to ICT, exploring how access in ICT can also take many forms. Like any machines and media that open up opportunities, care must be taken to ensure that they meet a wide range of access needs. People with visual impairments, for instance, have different access issues than people who have mobility impairments.

These themes tie in with issues of inclusive education, where children with disabilities attend mainstream schools, and require access to learning materials that are the same as those used by other children or equivalent, but adapted to meet their particular learning needs. Dr. Ngu considers student-centered teaching, professional development, community support and changes of policy to be essential to the use of ICT in education. Interestingly, all of these are also considered by conference speakers and participants to be prerequisites to inclusive education as a whole, not just in relation to the use of ICT.

So far in Africa, there has been only limited participation by the private sector in delivering ICT services, and few local producers of digital equipment or resources. There are also few finance mechanisms for mainstreaming ICTs in education and, in some cases, there may be resistance to changing existing teaching systems to include ICT.

UNESCO believes that: “Access becomes essential because exclusion will mean severely limiting life chances.” Burtules & Callister 2000, p.19, quoted by Joseph Ngu, UNESCO, Ethiopia.

“What we must eliminate first are issues of accessibility – communication and information is very important in our world.” – Maria Verónica Reina, Conference Keynote Speaker, Executive Di- rector of the GPDD.

This year there will be an inclusive education conference in Geneva to explore some issues around ICT and education. It is important, Dr. Ngu asserts, that we consider obstacles to achieving our goals – plans are easy, but action isn’t. For instance, programs can get computers into schools, but they must also be kept in good condition and teachers must be trained well enough to train their students.

For the future, Dr. Ngu calls for policy development at all levels that boosts the integration of ICT in education. He also believes that organizations and governments should support NEPAD’s education initiative to train teachers and school officials in ICT. On a continental or global scale, it is important to harmonize regulation and include ICT policies in national development frameworks. Beyond this, considering the private sector to be wealth creators with a critical role to play would harness their potential as supporters, donors and sources of accessible ICT for education.

5.1.3 Access to employment
Speaker: Daniel Mont, Senior Economist, Disability and Development Team, World Bank

In Sub-Saharan Africa, 55-90% of people with disabilities are unemployed, and in every country in the world disabled people have lower employment rates than non-disabled people.  These stark figures set the tone of Daniel Mont’s panel speech, in which he explored a range of barriers to work that people with disabilities now face, including:

  1. Stigma and prejudice
  2. Low expectations
  3. Lack of access to education and training
  4. Lack of accessible transportation and infrastructure
  5. Lack of accessible workplaces and accommodation
  6. Structure of disability benefit programs.

It is interesting to note that most of these barriers are not directly related to employment policies. For this reason, addressing access to employment requires a comprehensive and holistic “no-gap” approach.

To offer an idea of how this might be achieved, Dr. Mont first considered disability benefit systems. It is interesting to note that benefits policies are now the most studied elements of disability and employment, which says a lot about how we consider the relationship between disability, benefits and work. Policies in those countries lucky enough to have benefits programs often share several characteristics that act as disincentives to returning to work. These include a fundamental tension between the concept of accepting disability as a limiting factor, and inclusive employment policies, in which the workplace itself may be encouraged to change to accommodate people with different access needs.

People often fear losing benefits, which limits their willingness to try new jobs or training programs that might make it hard for them to regain the benefits they have temporarily relinquished. The application process for benefits frequently requires people to state why they deserve state support and why they cannot work, which probably has a psychological impact on someone’s beliefs about his or her own capabilities. For these and other reasons, exit rates from benefits programs are very low throughout the world.

Several methods have been tried to overcome these problems:

  1. Putting benefit eligibility on hold while people start working
  2. Temporary wage supplements and tax incentives for people coming into employment after periods on disability benefits
  3. Trial work periods that allow people to return to benefits systems if necessary.

Usually, however, these reforms do not work because they do not address other barriers to work, such as access in the workplace, attitudes and transport. Anxiety about the risk of losing benefits often remains a factor, even if the state tries to deal with these financial fears.

To address the larger issue, Dr. Mont then considered several employment policies. The first was quotas, which in general tend not to be very effective, can be expensive to enforce and usually do not address the informal sector. By themselves, they usually only cover discrimination and not other barriers, which may reinforce the idea that disabled people are not as useful or efficient in the workforce. Also, employers can often avoid them both in practice and in spirit.

Vocational training and rehabilitation is another approach to inclusion, and some studies have shown these programs can pay for themselves, although this is not always the case. Unfortunately, comprehensive cost-benefit studies have not yet been undertaken. Supported employment (for instance, using job coaches) is an allied approach, and studies show that this is particularly effective for those with cognitive and psychological disabilities.

Subsidizing wages for people with disabilities can also lower barriers to hiring. There is a danger of a revolving door, however, whereby employers hire people who attract subsidies, and then let them go once the subsidy periods expire. Even these limited periods of employment do provide job experience to disabled people, but, unfortunately, overall subsidies have not been a big success. An alternative approach, subsidizing increased accommodation costs, can be effective once attitudes begin to change.

Dr. Mont argues that there is a strong business case for disability management programs, which have succeeded to date because they have been aimed at people who become disabled on the job. They usually include:

  1. Medical and vocational rehabilitation
  2. Workplace accommodation
  3. Counseling
  4. Help with the transition back to work.

The negative here is that this approach usually only applies to people who have recently acquired disabilities. It does, however, give employers experience with accommodating a disabled person.

Another interesting employer-led strategy operates in Sri Lanka, through the Employer’s Federation of Ceylon. To promote employment opportunities for people with disabilities, they:

  1. Hold awareness raising seminars
  2. Created a database of disabled people seeking work
  3. Publish a newsletter highlighting good practices
  4. Host job fairs
  5. Provide training and job support
  6. Published a Code of Practice on Managing Disability Issues at the Workplace.

One member of the Employer’s Federation of Ceylon, CEI Plastics, employs 40 people with disabilities, many of whom have visual impairments, out of 300 staff. This amounts to approximately 10% of employees, and their production average is higher while their accident rate is lower. This 10% figure is approximately equivalent to the percentage of people with disabilities worldwide, and thus provides an interesting model of how companies can incorporate disabled people into the global workforce.

The World Bank itself could learn from some of these efforts. While it always states that people with disabilities are welcome to apply for jobs, the number of disabled staff is well below 10%. To help improve this statistic, the World Bank established a disability accommodation fund to cover extra costs required, such as a personal assistant for travel.

As the UNCRPD comes into force, countries around the world can benefit by combining the best existing inclusive employment practices, and developing new ones that address all barriers to work. It is impossible now to say that a particular approach, such as getting people off benefits, doesn’t work, because no approach can work in isolation. As a checklist for how to begin, Dr. Mont offers the following:

  1. Take a holistic approach coordinated with other sectors
  2. Tailor programs to local labor conditions
  3. Introduce different programs to address different segments of the population
  4. Gather evidence to make the business case to enlist employer and government support.

Most of all, we must remember that people with disabilities are not a homogenous group. Each person has different needs and all must be addressed for full access to employment to be achieved. The UNCRPD also defines human rights for people with disabilities. In most employment scenarios, taking the rights-based approach will be the best mechanism for bringing about change.

5.1.4 Access to education: from primary to tertiary
Speaker Dr. Elly Macha, Executive Director of the World Blind Union

“Universal Primary Education is not new – it was declared as a goal in 1960. It was restated as a Millennium Development Goal (MDG) in 2000, and what is missing is the process of reaching those goals – inclusive education. We can structure MDG targets in ways that enhance disability rights.” – Augustine Agu, UNICEF Ethiopia

How to reach these goals, particularly within the framework of Article 24 of the UNCRPD, was the focus of the fourth keynote speaker, Dr. Elly Macha, Executive Director of the World Blind Union. It is well known that in developing countries, approximately 90% of children with disabilities do not attend school. There are many reasons for this, and efforts to educate disabled children have followed a similar pattern in many countries.

A quality education is every child’s right. © Leonard Cheshire Disability.

Provision first began within families who educated their children themselves. Children in institutions were then also taught, as these organizations changed from being purely care homes to including education among their services. Some of these then evolved into special schools and then slowly transformed into integrated schools, with several models being followed.

The first model was based on the idea that disabled children would only be integrated with their non-disabled peers outside the classroom or for special events. The more recent approach, inclusive education, turns this around, with the presumption that children with special educational needs should be taught within mainstream schools. In this model, services should be made to accommodate children’s needs rather than children having to accommodate the needs of school settings.

Inclusive education is built around a belief and understanding that education is a basic human right, and the foundation for a just society. The process of making this right a reality – the progressive shift from traditional special educational needs provision to integrated service provision, and then to inclusive education – has created some tensions between and within groups of professionals, researchers and children.

Dr. Macha believes that this is to be expected because educational reform is complex, non-linear and frequently coupled with all sorts of political jargon. It is messy and often threatens the status quo, sometimes hurting people’s feelings in the process. She began with this thought to explain the common understanding of inclusive education and strategies to develop inclusive schools. It is important to make a distinction between:

  1. The attempt to determine patterns of inclusive education, and
  2. The importance of understanding its contextual framework and philosophy, which could mean that different models work in different situations.

Dr. Macha went on to pose a series of questions to help people understand how inclusive education can be implemented, and accommodate children with disabilities. Overall, the global movement in support of inclusive education focuses on three issues:

  1. To what extent is inclusive education guided by an educational vision at a country level?
  2. To what extent is the status of the teachers facilitating the bringing about of sustainable inclusive education?
  3. How can the inclusive education process be sustained at school level?

In answer to the first question, inclusive education is a vision in itself – an important one for most African and developing countries to consider. To achieve this vision, a country must have a strategy to achieve it.

The second question raises the issue of how prepared teachers are to implement it successfully. If we take the example of Tanzania, where teachers have now resorted to taking additional work, such as running petty cash businesses, subsistence farming and offering extra tuition, because their pay is so low, this gives an indication of how serious the situation can be.

For inclusive education to succeed, we need to get teachers on board, to train them and consider their wellbeing so that they can fully engage in implementing the fundamentals of inclusive education, such as including children with disabilities in their classrooms. The problem of teachers being engaged in other businesses to supplement their small salaries is a barrier to creating this engagement, and must be considered.

From her point of view, for inclusive education to be sustainable, the school community from the head teacher, school staff, school committee and whole local community should be involved in its design and planning. National and local governments also need to allocate resources to it, both human and material. There have been cases where inclusive education programs have been implemented, but have run into problems because some elements, such as crutches, were not included in the budget. In one country this came to $10 per child annually, but this government could not afford to pay for anything beyond the basics.

In some places, parents of non-disabled pupils also removed their children from the schools, because they believed quality would decline when disabled children joined the classes. Education and attitude change within the whole community, not just families of children with disabilities, is necessary to prevent this kind of problem. To facilitate these necessary changes, Dr. Macha recommended two main directions for action points:

  1. Cooperation between inclusive education stakeholders

    At the moment, Dr. Macha believes that there is not enough collaboration and cooperation among disabled people’s organizations (DPOs) and NGOs working in education with children with disabilities in Africa. Even in one country, it is common to find several organizations doing similar work in different areas without coordination.

    This has been partly addressed by some campaigns, including one launched in 2006 by the World Blind Union and the International Council for the Education of the Visually Impaired. It is now being put into practice in several Latin American countries, in Asia, and will soon start in Africa.

    UNESCO has endorsed this campaign, but inclusive education is a policy issue, and Dr. Macha proposes that helping it to become reality requires collective lobbying and a common campaign to ensure that all children are enrolled in school. People with different impairments often have their own groups, such as organizations for deaf people. Will they then go to UNESCO and ask to be part of the campaign for blind children? Would it not be better for all DPOs, development agencies and other interested organizations to lobby for inclusive education as a whole?
     
  2. Early intervention for children with disabilities

    There are times when service providers and other professionals do not cooperate. For instance, if you go to Kikuyu hospital in Kenya, some ophthalmologists have no idea that a child with visual impairments can be educated in a school, so once a child’s sight cannot be restored, the doctor can offer no advice to the parents. The challenge is for professionals and service providers to be linked, so that we create early intervention programs to identify children for school and inclusion with their peers.

    In 2007, World Vision UK and the GPDD researched the 28 fast track countries (named this way because they were funded by the G8 to support the Millennium Development Goals) and the problems they had in promoting education for all. Dr. Macha recommended that everyone at the conference check if his or her country is a fast track country and, if so, try to persuade the G8 funded programs there to include children with disabilities in their work. We must remember that we have the resources – all we need now is the will to change.

5.2 Workshops

5.2.1 Inclusive from the start? – Workshop 1: Creating accessible services in post conflict countries
Speakers: Dr. Maria Kett, Assistant Director, Leonard Cheshire Disability and Inclusive Development Centre, University College London
Professor Osman Mohamed Bah, Leonard Cheshire Disability Regional Programme Manager, West Africa
Mohamed S. Kamara, Young Voices Participant, Sierra Leone

“People value mining more than education” − Survey respondent, Kono, Sierra Leone

The UN rated Sierra Leone, a country ravaged by eleven years of civil war, the poorest in the world in 2007. Its health and education systems have been decimated, and no accurate statistics about disability now exist, nor is there any disability legislation. There are 450,000 children out of school in Sierra Leone, and because of war violence, land mines, measles, polio and other diseases caused by disrupted vaccination services, we know that a number of these children have disabilities.

Even to begin to approach the Millennium Development Goal of universal primary education by 2015, significant rebuilding of the country’s education system will be necessary. This gives the opportunity to make the system inclusive almost from its outset.

Net primary school enrolment from 2002–2005 was 41%, because poverty means both that parents cannot afford school fees and that they need their children to earn money for the family. UNICEF has built many schools with support from communities, and a catch-up education program was launched after the war – CREP or Compulsory Rapid Education Programme.

Overall in Sierra Leone, 41% of children attend school. 76% of children with disabilities, however, do not attend school.

Professor Bah and Dr. Kett researched the number of disabled children in and out of pre-school in two areas of Sierra Leone: Koinadugu, the second largest and most populated district, and Kono, a poor agricultural and diamond mining area. They found that Koinadugu has only three primary schools and no secondary school, while distances from homes to school are long and the terrain is difficult. The average school fee is equivalent to $10.

Small adaptations make access easy. © Leonard Cheshire DisabilityIn Kono, there are 14 secondary schools and six technical institutions, yet the research found that many people value mining more than education. With average school fees totaling $33, many parents and guardians cannot afford to send their children to school. It is thus not surprising that 76% of disabled children do not attend school.

Even if a child with disabilities is in school, there are often problems with access, and this continues at the secondary school level. Mohamed Kamara, whose school is almost completely inaccessible, vividly described this. The school, about two kilometers from his home, has no ramps, and Mohamed and other disabled students have to climb staircases every day. The toilets are located up a hill, without any accessible routes to reach them.

Getting to school is also difficult, because few vehicles are accessible or have space for wheelchairs or other assistive devices. Sometimes drivers even accuse disabled people of wasting their time, meaning that pupils with disabilities spend hours just getting from home to school and back again.

Taking all these factors into account, the workshop called for three main action points to build and rebuild Sierra Leone’s education infrastructure, and make it inclusive from the start:

  1. Work with and through the national education system, ministries, international and local partners and NGOs to promote pre-school education
  2. Lobby bilateral and multilateral organizations to make reconstruction programs inclusive and development-led
  3. Establish and support networks of pro-disability and disability organizations to advocate and campaign for inclusive development policies.

5.2.2 ICT: creating division or creating opportunities? – Workshop 2: Reducing the digital divide and the role of ICT
Speakers: Jenifer Simpson, Senior Director, American Association of People with Disabilities, USA
Dr. K.M. Baharul Islam, Chairman and CEO, South Asian Regional Development Gateway, India

Information and Communications Technology (ICT) has the potential both to enhance access for disabled people and to contribute to creating more division and new forms of exclusion. It is thus vital that issues of access be addressed, as technology continues to develop and spread.

What we now call the digital divide actually began long before the introduction of computers – it is true today for telephones, television, the Internet and electronic help systems. It is important to remember both that people have many different access needs, and that there are many different ways to make technology accessible. For instance, telephones can be accessible through their keypads, through using a telephone relay operator and by making phone devices work with hearing aids. In the USA, it took over ten years of lobbying to convince manufacturers to make television accessible, and this had to focus on both TV sets themselves and the provision of closed captioning and video description, which remains a voluntary access service. Controls, instruction leaflets, and electronic program guides, for example, are still targets for accessibility lobbying.

Sometimes, the technology itself develops to a point where it is more accessible. For instance, the increased use of broadband could prove to be an effective boost for accessibility, as it is quicker and can carry videos and other media. To make this work however, disability access must be designed into sites from their outset. Computer manufacturers must also ensure that software works for people with all disabilities.

Internationally and regionally, there are a number of accessibility initiatives. The largest is the declaration of principles developed by the World Summit on Information Technology (WSIS), a series of two international meetings sponsored by the International Telecommunications Union, the UN and the governments of Switzerland and Tunisia. Its conclusion is that those in the “information society” should pay particular attention to the special needs of persons with disabilities in all stages of education, training and human resources development, including infrastructure. The WSIS meeting also advocated universal design concepts and the use of assistive technologies to support persons with disabilities.

In Asia, UNESCAP helped create “Recommendations on Policy/Legislative Guidelines concerning ICT accessibility for Persons with Disabilities in the Asian and Pacific Region, June 2002,” which provides a framework for governments to make ICT accessible in their countries. Each European Union country has individual laws on accessibility, and handles ICT issues through several government departments – no country has a unified system or policy.

Several articles in the UNCRPD address ICT accessibility: 9, 11, 21 and 26.

By 2025, BT (a UK telephone company) will define digital exclusion as not having access to the Internet at home.

In Africa, UNECA has sponsored the National Information and Communication Infrastructure (NICI). Each African country can use this to formulate policies and strategies for using ICT, to create an enabling environment for innovation and to fight poverty. Since ICT penetration in Africa is so much lower than in other continents, there is an opportunity for African countries and companies to build accessibility in at the beginning. Setting aside money and technological assistance to support the use of assistive devices, which can be costly, is a good example of how this could work. To take advantage of all opportunities to make ICT accessible, the workshop called for programs to:

  1. Make ICT available at a cost that is affordable for people with disabilities. Such technology exists, but needs to be made widely available
  2. Make ICT policy inclusive from the outset. It needs to be mainstreamed to include people with disabilities
  3. Make ICT companies pay for making ICT services widely available and accessible. It is good business for them and this approach has worked in the US.

5.2.3 Inaccessible transport is a barrier to more than travel – Workshop 3: Creating accessible transport where there is little state-funded transport
Speakers: K. R. Rajendra, South Asia Regional Programme Manager, Leonard Cheshire Disability
Facundo Chávez Penillas, Network for Rights of People with Disabilities, Argentina

Despite living on different sides of the world, people with disabilities in India and Argentina have something in common: in both countries most public transport is inaccessible. This is not only an inconvenience, but also a direct barrier to accessing other services, such as health care and education.

In India, where 70% of the population lives in rural areas, roads are often in poor condition, and structures such as bus shelters and train stations are often inaccessible. The Leonard Cheshire Disability South Asia Regional Office carried out a study on transport accessibility for Mobility & Health – a networked research program of IFRTD, the International Forum for Rural Transport and Development. Examining whether and how people with disabilities can travel to their nearest primary health centre, which ranged from one to 24 kilometers away, it found that:

  1. Roads were paved with asphalt, but they were narrow, potholed and had no pavements/curbs
  2. The distance from a village to a main road that could take someone to a primary health center averaged one-half to one kilometer
  3. Most people had to hire private transport – such as cars, rickshaws or jeeps
  4. Most transport options ended by 10 p.m., sometimes as early as 6 p.m., making it difficult for people in emergencies
  5. There were no directions or signs on roads or in bus shelters, so people with visual or hearing impairments, intellectual disabilities and mental illness might need an escort to guide them
  6. There were no facilities for communication with people with hearing and speech impairments, and no announcements on buses for those with visual impairments.

When people could take a bus, drivers were found to be helpful, but often people with disabilities would choose not to board a crowded vehicle because they would be jostled. And, although the first few rows of a bus are reserved for people with disabilities, non-foldable wheelchairs and mobility tricycles don’t ft on buses.

Given these issues and the facts that 99 out of 100 disabled study respondents depended on public transport and only one owned a vehicle, it is no surprise that people with disabilities rarely visited health centers. The implications for their health are, obviously, serious.

In Argentina since 1981, the Argentinean Accessibility Law (AAL) has covered physical accessibility. The capital city, Buenos Aires, approved its own accessibility law (ALCBA) in 2003, largely as a result of lobbying by disability and other organizations working together. Five years later, ALCBA has been included within the city’s Buildings Code, which should make new structures more accessible.

Yet enforcement is far from being effective. For example, over 75% of public and over 80% of private schools are inaccessible in Buenos Aires, the richest jurisdiction in the country. Among the students with disabilities who would be entitled and able to attend these schools, 82% cannot attend and are excluded from the educational system because of inaccessibility.

Should students be able to find an accessible school building, they would have significant trouble getting there. Although AAL covers transport accessibility, political lobbying of congressmen by the transport industry meant that it was not applied for over 15 years. In 1998, the first accessible buses appeared in Buenos Aires. After ten years, less than 20 of the 199 city bus lines have feets in which over half of the vehicles comply with accessibility rules. Most of these serve only wealthy areas of the city.

Participants in this workshop recognized that making public transport accessible involves a web of legal and practical changes. The benefits will increase access to a broad range of activities, making transport fundamental for full participation in society. To best make this happen, they called for concerned people and groups to:

  1. Work in partnership with governments, not against them, in organizing budget allocations and policies for people with disabilities
  2. Work with the media and governments to develop a program of training and awareness to sensitize local communities on the need for accessibility
  3. Develop a policy on accessibility, not only in terms of one single element, but also as an over-arching program for transport accessibility in an area or country. This includes all elements of transport, including information in accessible formats and other issues not directly related to vehicles.

In India out of the 100 disabled people surveyed, 99 depended on public and privately hired transport. Only one owned a vehicle. In Buenos Aires, Argentina, over 75% of public and over 80% of private schools are inaccessible.

5.2.4 Support children with disabilities by supporting families – Workshop 4: Access to relationships and family life
Speaker: Helen Schulte, Child Protection Section, UNICEF, USA

Children with disabilities are entitled to live in families, not institutions. This right is detailed in articles 19 and 23 of the UNCRPD, which calls for governments to support it through information and services.

Around the world, however, at least two million children live in institutions, and the number is growing, especially in Africa because of the impact of HIV/AIDS. This workshop explored how in Central and Eastern Europe and the Russian Federation, a disabled child is 17 times more likely than a non-disabled child to be institutionalized. Sadly, the majority of children in institutions do have at least one living parent. There are many reasons why children may end up in institutions, including:

  1. Economic pressures (costs of raising a child with a disability)
  2. Lack of services and support in the community
  3. The social stigma and discrimination families and children face
  4. Professionals who insist that institutions provide the most effective care.

In Eastern Europe, the social benefits system almost incentivizes institutional care, as this mother’s comment shows:

If a child is in a boarding school, then the state pays 150 lats (240 Euros) for a child per month. How can it be compared [to what we receive]? If a child grows up in a family, the only money the family receives is 35 lats (56 Euros) in disability allowance.

When separation from the immediate family is unavoidable, alternatives to institutional care include:

  1. Foster care for children with disabilities, preferably in other families within the community or family-like group homes
  2. Supporting and monitoring informal care arrangements
  3. Minimum standards and oversight in the formal care system.

In some countries, such as India, families of children with disabilities may receive no state support. In this context, institutional care may seem to be a positive development.

Helen Schulte agreed that there is still a role for institutional care, but believes that governments do need to change policies and incentives. Investing in supporting families rather than institutions would help. Standards of monitoring of institutional care also need to be improved.

Effective strategies to avoid institutional care by societies, governments and stakeholders can increase the percentage of children with disabilities who live in families. These include:

  1. Increase attention to children with disabilities in social protection reform processes
  2. Invest in family support services that are accessible to children with disabilities and their families
  3. Strengthen the state’s social welfare sector
  4. Provide day care services so that both children and families have support during the day
  5. Improve early assessment and intervention so that disabilities can be identified early, and children can receive the appropriate support.

Workshop participants illustrated the very wide range of approaches to community support internationally.

In South Africa, there are programs to empower mothers to support each other financially, materially and emotionally. They have also formed lobbying and campaigning networks.

The Khartoum, Sudan, Cheshire Home looks at developmental systems, with a focus on families, children and community-based rehabilitation that helps integrate a child with disabilities into the community.

The Cheshire Home in Guyana has four to five applications a week for residential care for children, far more than it can handle. Families are requested to keep in touch with children who live in the home, but many do not. There seems to be a high level of disabled child or family abandonment in Guyana and other countries, particularly fathers abandoning mothers and children.

In Central and Eastern Europe and the Russian Federation, a disabled child is 17 times more likely than a non-disabled child to be institutionalized.

People with disabilities, including children, have an equal right to live in the community – Article 19 of the UNCRPD.

Representatives from China report similar issues, but families that have more resources than the birth parents are increasingly fostering children with disabilities. International adoption of children with disabilities is another trend.

Participants from every country represented agreed that changing attitudes must be part of any effort to ensure children’s right to family life. Together they called for the following action points:

  1. Improve standards of monitoring of institutional care, while at the same time focusing on investing in support systems for families
  2. Early intervention, assessment and support are necessary to identify disabilities at an earlier age
  3. Men must be accountable for their disabled children
  4. Change the attitudes of the wider community to avoid stigmatization of disabled children
  5. Build capacity and educate donors to move away from investing in institutional care and into support for families.

5.2.5 Meeting the most basic needs: Access to water and sanitation – Workshop 5: Making public buildings accessible: examples of good practice in water and sanitation
Dabashish Bhattacharjee, Human Settlements Officer, UN Habitat, Kenya Mahider Tesfu, Research Officer, Water Aid Ethiopia

UN Habitat has already produced principles for accessibility of public buildings that have been endorsed by the world’s governments. One important point is to promote access for all people to safe drinking water, sanitation and other basic services, facilities and amenities. This is to be achieved by promoting the adoption of laws, standards, planning guidelines and programs that consider specific needs of persons with disabilities, including people who are chronically ill.

These ideas are echoed in Article 28 of the UNCRPD and should be implicit in the Millennium Development Goals, which cannot be met without the inclusion of people with disabilities. A number of issues hold true in many countries:

  1. Disabled people often have the poorest access to water and sanitation. because of physical barriers such as steps and inappropriate design, as well as attitudinal barriers that keep them away from public facilities for personal or social reasons
  2. Inclusive facilities benefit the entire community:
     
    • Burden on care givers (mainly women) is reduced
    • When people with disabilities get water-related infections, their families and communities become at risk, which also impacts on the local economy
    • Inclusive facilities are economically more efficient – “specially” created facilities are expensive
  3. Disability, poor access to water and sanitation and poverty are interrelated, for instance, polio and water contamination by fluoride and arsenic all cause disability
  4. Diarrhea, which is often caused by lack of access to clean water, is responsible for 5% of health loss from disability
  5. People with disabilities may need more water for washing because of their disability – for instance, some people may crawl or fall frequently
  6. Official statistics often underestimate the proportion of persons with disabilities
  7. Programs that provide public water and sanitation facilities often do not consider the range of users trying to access services
  8. Development organizations may overlook people with disabilities in their water and sanitation projects, while disability organizations rarely address water and sanitation issues.

Combating all of these requires integrated approaches, particularly focusing on the participation of people with disabilities, attitudinal changes and user-friendly water and sanitation services. Water Aid in Nepal has created “Guiding Principles for Planning and Design”:

Accessibility: Water and sanitation facilities should be accessible to all people, including those with disabilities, elderly people, pregnant women, and children; consider limitations faced by differently abled people (discomfort, fear of falling).

Access: Persons with disabilities should be able to access without assistance and without undue difficulty; barriers in the natural environment, like slippery slopes, and cultural practice of locating latrines far from the house, should be considered.

Usability: Everyone should be able to use facilities (this has impact on the height of taps, use of platforms, etc.).

Safety: Facilities to be built in a way that does not endanger life or health – consider hand rails, rough surface finishing, alarms.

Small adjustments can help a lot:

To address all of these issues, Water Aid and UN Habitat call for:

  1. Participation of PWDs in programming and policy advocacy work
  2. Inclusive design of water and sanitation facilities
  3. Integration of access to water and sanitation into policy advocacy work
  4. Media work to tackle misguided beliefs
  5. Production of policy brief and issues papers
  6. Collaboration between development and disability organizations
  7. Improved data collection and further research, including piloting inclusive designs in study areas and changing practice as a result of findings.

5.2.6 Making universities catalysts for change – Workshop 6: Higher education and inclusion Speakers: Dr. Windyz Ferreira, Leonard Cheshire Disability, Brazil
Dr. Abdul Hameed, Chairman, Department of Special Education, University of Punjab, Pakistan

Higher education can act as a catalyst for change. Working within universities gives an important opportunity to promote the rights, skills and access of disabled people in higher education and the wider society. But, while the total number of university students in the world rose from 13 million in 1960 to 82 million in 1995, the large differences in access to universities between industrial and developing countries became even wider.

People with disabilities can face many barriers to full access to a university education, says Dr. Windyz Ferreira, based on her research into disabled students’ experiences in Brazil and other countries. Starting at school level, these can include lack of access to a quality education, “invisibility” in everyday settings, lack of understanding of diversity issues, and a limited number of places at universities. Once they reach university, barriers can include academics who are unwilling to adapt teaching methods for people with disabilities, problems with physical accessibility and a lack of trained professionals to support students with disabilities.

Since 2000, the University of the Punjab in Pakistan has taken specific steps to help overcome these barriers:

  1. Ninety seats (2% of the total) were created in all programs for students with disabilities
  2. About 50 students with disabilities are admitted on merit every year
  3. There is a special admissions committee for determining eligibility
  4. There is flexibility in curriculum, instruction and the system of examination
  5. Support is given to faculty members to accommodate disabilities.

The Department of Special Education plays a leading role in this program through advocacy for inclusion, teacher preparation, research on inclusion, support to inclusive institutions, learning resource center on inclusion, promoting innovation in education, national and international collaboration, and putting theory into practice.

Within their own department, they decided to shift from “reserved seats” to full inclusion. As a result of advocacy, six people with disabilities applied for admission to the MA course in special education in 2004, compared to one reserved seat. The university then agreed to create five seats (about 10% of the total), meaning that five disabled students are admitted each year. The master’s program set out to create an inclusive environment, and changed the classroom culture from social exclusion to social inclusion. Methods for doing this included:

  1. Changes in class arrangement and space allocation
  2. Modification in physical facilities
  3. Improvements in social environment
  4. Flexibility in instruction and note taking F
  5. flexibility in examination
  6. Changes in social environment
  7. Flexibility in performance criteria.

At the university, they strongly believe that creating an inclusive education system at the primary and secondary levels is necessary, before there can be truly inclusive tertiary education. Empowerment of people with disabilities, both inside and outside of education, is also necessary to make this happen.

The University of Mauritius worked with disabled people’s organizations in the community to raise awareness of university access for students with disabilities. In Ethiopia, students organized themselves to campaign for construction of a ramp to the library, which had previously been inaccessible.

The workshop participants agreed on six calls for action to make higher education more inclusive:

  1. Encourage UNESCO to hold an international conference on inclusive education and innovative learning, to exchange experiences and ideas
  2. Create an online network (possibly initiated by the Leonard Cheshire Disability and Inclusive Development Centre at University College London), where ideas can be exchanged
  3. Create a conceptual paper in easy language about moving away from the medical model towards the social model. Include “curriculum differentiation” – teaching the same curriculum in different ways
  4. Start a debate on innovative teaching processes
  5. Lobby ministries of education to create policies and practices that prepare students in secondary education for higher education, and those in higher education for jobs
  6. It is essential to have a university that will act as a focal point to support and fight for the rights of students with disabilities. Students must be empowered to fight for their own rights – it is not always a question of government policy.

5.2.7 Building disabled entrepreneurs – Workshop 7: Poverty and indebtedness among people with disabilities - is microcredit an effective answer or cause of further debt?
Speakers: Alvin Uronu, Institute of Continuing Cooperative Development and Education, Tanzania
Roy Mersland, Director, Microfnance, Norway

Yes and no, depending on the circumstances: this was the opinion of the workshop after considering two different microfinance programs in Africa. Local market conditions, participants’ previous work experience and skill levels all influenced whether microfinance would be effective in supporting small businesses.

Alvin Uronu, who works with Moshi University College of Cooperative and Business Studies (MUCCoBS), one of Leonard Cheshire Disability’s project partners, examined a livelihoods support project in Dodoma, a central area of Tanzania approximately 450kms from Dar es Salaam. Most people live on less than $1 a day and there are few non-farming activities. The area’s semi-arid climate and low soil fertility mean that food security is always an issue.

The project targets people with disabilities, and parents or guardians of children with disabilities. Project participants meet once a week in one of six centers located within their communities for training, and to access financial services such as savings groups. Designed to combine provision of microcredit and training in entrepreneurship skills, the project builds capacity to stimulate new microenterprises, create employment, and develop confidence and good practice in financial management.

Of the 356 participants, 284 are women, and trading accounts for 91.8% of the businesses, with the remainder being in manufacturing and services. The minimum amount loaned is Tshs 50,000 ($50), while the maximum is Tshs 300,000 ($300). The average loan repayment rate is 95%, and participants are also required to save within the group.

A number of participants benefited from the program by being able to increase their business stock. Some were also able to change from mobile to small, fixed businesses. Increases in sales also improved people’s ability to support disabled relatives and other family members with basic necessities such as food, medical services and clothes.

On the other hand, the loans offered are mainly for working capital and are too small to facilitate the purchase of larger tools or equipment. These might include small oil processing machines, weaving machines, sewing machines, or inputs for gardening. Participants are required to start repayment in the week following loan disbursement, and this effectively means that they will remain small traders rather than larger scale producers. This outcome is common in similar projects across Africa, and it can be argued that this type of program does not pull people out of poverty.

It is also interesting to note that people with different kinds of disabilities experience the project differently. For example, people with visual impairments tended to work in crafts, such as weaving carpets, and argued that they could not make weekly loan repayments since it might take more than a week to complete and sell a piece of work. People with motor impairments sometimes rely on their children or other partners to buy or transport raw materials, so it might be worthwhile to build support for this kind of partnership, and possible additional expense, into future programs.

To help people start and expand different kinds of businesses beyond the level of small traders, Mr. Uronu proposed that the community centers could become business incubation centers. These would train people in specific business skills and topics, share case studies, document practices and act as centers of marketing information expertise. They could also help make links between relevant organizations, and even generate publicity.

Roy Mersland, the second presenter, reported that mainstream microfinance institutions (MFIs) often excluded people with disabilities41 , since their aim is to remain financially solvent, and they erroneously consider people with disabilities to be bad credit risks. They thus fail to practice the “double bottom line policy” common to many MFIs: reaching both financial and social objectives.

Mr. Mersland then discussed how an innovative partnership has overcome this problem. Starting in July 2005, Ugandan MFIs and disabled people’s organizations, and their partner the Norwegian Association of the Disabled, set out to increase the outreach of sustainable mainstream microfinance services to persons with disabilities in Uganda. Their two main strategies were:

  1. To increase awareness among MFIs about how to include persons with disabilities in their services, and
  2. To create awareness among persons with disabilities and their organizations about the pros and cons of microfinance.

The program trained staff in 49 MFI offices in how to approach and work with people with disabilities. No special financial products were developed for disabled people; the focus was, instead, on supporting organizations to market their program to qualifying people with disabilities. They also improved both the physical accessibility of their premises and the accessibility of information for people with visual and hearing impairments.

The DPO partners took responsibility for helping people overcome other barriers to participation such as negative attitudes towards mainstream MFIs or low self-esteem. In 2006 and 2007 the project workshops trained a total of 1,603 people, of whom a third were not actively involved in businesses. They also invested in advertising the project through radio – generating 700 minutes of coverage – and TV talk shows – generating 90 minutes of coverage – during 2006 and 2007. Lobbying with government and industry officials was another tactic.

Preliminary results after 18 months show that before the sensitization, 6.5 out of 1,000 MFI clients had disabilities. After the sensitization, 10 out of 1,000 new clients have disabilities, representing almost a 50% increase, approximately half from natural growth and half as a result of the program. It is interesting to note that different branches had very different rates of increase in participation by disabled people – from 57% to 350% – probably indicating that local efforts can influence the results considerably. The cost of the program has been low in relation to its growth, with staff costs being almost the only increased expense.

In Uganda, more than 60% of the project participants have a physical disability, while the rest have a mental impairment, are blind or deaf, or are caregivers. “For a loan group to meet and talk only about loan repayment is more than a missed opportunity: it is a failure to grasp what development is actually about. These groups could be the kernel of a consciousness in the community.” Peter Coleridge (2007) Field Report Document for Leonard Cheshire Disability, quoted by Alvin Uronu in ‘The case of Dodoma Micro Finance Project for PWDs’ in Tanzania”, May 2008.

Mr. Mersland concluded that, for the time being, aiming for 3% of an MFI’s clients to be people with disabilities seems realistic, and would mean an enormous step forward in mainstreaming entrepreneurial persons with disabilities into MFIs. A 3% natural market potential for MFIs should also be enough for it to be considered an important market opportunity for them. However, the 3% also sends a message to the disability community that more than two thirds of the world’s disabled population is not an immediate target for mainstream microfinance services.

Sustainable MFIs struggle with reaching the poorest strata of the population, disabled or non-disabled. On this point Mr. Mersland agreed with Mr. Uronu: for people with disabilities who are less entrepreneurial, poorer or have impairments that cause them to need more support, other intervention efforts are needed.

Following a lively discussion of the important issues raised in these presentations, the workshop called for three action points:

  1. Encourage disabled people’s organizations to promote microfinance to their membership, and to sustain the idea of people with disabilities as an untapped market for financial service providers
  2. Promote savings as a precondition to requests for loans and as a coping mechanism for crisis situations
  3. Promote further research into the possibility of more flexible conditions for microcredit provided to vulnerable groups.

5.2.8 Independent living is worth the risks – Workshop 8: Moving investment from institutions into accessible communities
Speakers: Gordon Kyle, Director of Social Policy and Government Relations, Community Living, Ontario, Canada
Maurice Kilduff, Executive Director, Cheshire Home South Africa

“For me, independent living is being able to live without being dependent on either state or welfare… it is taking charge of my own daily life. Talking from the perspective of someone who has lived a life of dependence, it is difficult to express the confidence lift that independent living gives to an individual with disability. The experience changes one so much that it is easy to learn new lifestyle skills almost without effort.” – Mandla Mhlanga, Cheshire Home South Africa Service User

In his paper on independent living, Mandla Mhlanga, a service user from the Cheshire Home South Africa, articulated the longing for independence that he has encountered among many people with disabilities. At the workshop, his representative from South Africa, Maurice Kilduff, outlined the series of steps that Mr. Mhlanga believes are needed for disabled people to make the transition from institutions to community living. Workshop participants then compared these to the approach advocated by Community Living Ontario, a community-based organization in Canada.

Both countries began their services for people with disabilities following institutionally based models, and both organizations then moved in the direction of supporting community living. Mr. Mhlanga believes that the path towards independent living requires a combination of services and changes of attitude among people with disabilities themselves. The first step is to want to be independent and the second is to work cooperatively with others to build a support system based on family members, community organizations and mentors.

This echoes the situation in Canada, where Community Living Ontario promotes a program of family support, individualized planning and community development that supports people with disabilities to live in a range of community settings. According to Gordon Kyle, northern countries previously made the costly mistake of institutionalizing disabled people. In Africa, countries with less developed social welfare systems now have the opportunity to take the approach that countries such as Canada have adopted, which is to create webs of support and service provision that meet people’s individual needs.

Access to employment was the third of Mr. Mhlanga’s steps, both to become economically independent and to be considered of equal status to other people. “Economics finally rules opportunity. So, if disabled persons seek independence, they must overcome financial difficulties and a host of other hurdles,” says Mr. Mhlanga. This situation is significantly different to that of Canada, which has a comprehensive welfare benefits system, but is common in many lower income countries.

Both in Canada and South Africa, inclusive education has been identified as an important step towards promoting inclusive societies. The same goes for programs that teach living skills and negotiating inaccessible transport systems, which are unfortunately necessary in many countries.

Workshop participants agreed with Mr. Mhlanga that “independent living is worth all of its inherent challenges and all of the frustrations. These are compensated by the joy of living your own life.” To support independent living, the workshop called for three actions:

  1. Social workers need to follow up people with disabilities in transition to community care, and be accountable both to the people and to their communities
  2. Ensure that people are provided with a full range of options with respect to the support and services they receive to live in and take part in all elements of the community, in recognition of and in response to the person’s particular needs and personal goals
  3. Consistent with articles 1, 2 and 3 of the UNCRPD, specific investments are needed to ensure that people with disabilities have support where necessary, to exercise their legal capacity, make informed decisions and engage in community life.

5.2.9 Improving education through inclusion – Workshop 9: Inclusive education
Speakers: Orpa Orgot, Global Education Advisor, Leonard Cheshire Disability
Chris Berry, Education Adviser, DFID Ethiopia and Workyle Tegegn, Embassy of Finland, Ethiopia

The UN Convention on the Rights of the Child, the Millennium Development Goals, and now the UNCRPD, all stipulate that education is a human right for all children. Yet there are still over 70 million children out of school worldwide and about one third of these are children with disabilities. 44 The World Health Organization states that overall, only approximately 10% of children with disabilities in low-income countries now access education. Why are so many disabled children out of school?

Inclusive education involves families, communities and teachers to change school cultures. © Mimi Mollica/ Leonard Cheshire Disability

This workshop explored the best ways to include disabled children in mainstream schools, a process known as inclusive education, which allows all children to learn in their local schools.

Orpa Orgot spoke about the successful inclusive education project in Oriang, Western Kenya, run by Leonard Cheshire Disability and several project partners. Before the project began, there were few disabled children attending local schools, and a background assessment revealed that teachers lacked the skills to support children with special needs, school buildings and grounds were not accessible, and learning materials were inadequate. The study also found hostility towards educating children with disabilities from some community members. The project then took a holistic approach to:

  1. Enhance teachers’ skills to support them in teaching disabled children
  2. Identify out-of-school children with disabilities in the community and help them become role models for other children
  3. Build community participation to adapt schools and support children
  4. Influence government policy and create a partnership with a teacher training institution
  5. Gain support from special education practitioners
  6. Network with government departments and NGOs to build partnerships.

The active participation of people with disabilities in mainstream education acts as a catalyst for schools and communities to increase disabled children’s access to mainstream schools. To support this, five disabled people actively participate in project management and three disabled teachers support child-to-child education activities in schools and the community. People with disabilities helped coordinate activities in the project’s community resource centre.

The program has been so successful that the original pilot project in five schools has now scaled up to cover all of the 434 schools in the Nyanza province. The participating teacher-training institute has also changed its curriculum to reflect this inclusive approach.

Across the border in Ethiopia, there has been a dramatic increase in the number of children in primary education – from five million in school in 2000 to 14 million now.  There have been problems, however, and these include high drop out rates, low completion rates and low levels of attainment.

To improve the quality of education for all students and mainstream crosscutting issues, the government of Ethiopia developed the General Education Quality Improvement Package – GEQIP. This government-led, donor-supported program improves educational outcomes by:

  1. Improving curriculum and textbook quality, relevance and availability
  2. Reforming assessment practices
  3. Teacher Development (in-service and pre-service training of teachers, training of teacher educators, etc.)
  4. Training in education management at all levels
  5. Empowering schools to plan and manage their own resources.

Disability is specifically addressed through:

Curriculum, textbooks and assessment: The curriculum and textbooks are developed in ways that make teaching and learning more inclusive, and the project supplements this by providing adaptive and supportive material. There is also a focus on early assessment in basic reading and writing, to identify children with learning difficulties.

Teacher development: Selected teachers are trained in special education needs, to act as resource persons for other teachers and school administrators. The program also provides additional materials to teacher education institutes and cluster centers for teacher development. This has helped scale up teacher training to tackle regional inequities.

Management and administration: Issues of inclusive and special needs education have been incorporated into leadership and management training, the budgeting and resource allocation process and the education management information system.

School improvement: The program organizes different forums to help increase the awareness level of the school community and parents. We also involve PTAs on activities related to inclusion and special needs education, as well as using school grants to improve the school environment and create different support systems.

The program has generated a lot of interest, but more work needs to be done to refine its impact. The key questions are how to balance expansion with a focus on quality and inclusion, how to support schools to teach special needs children, and how to redesign textbooks to promote greater inclusion.

Through lively discussion, workshop participants generated the following calls for action:

  1. Integration – meaning children studying in the same schools but not together – is not inclusion. Inclusion needs a change in attitudes, curriculum, teacher training, assessment, resources and materials
  2. It also needs a child-friendly approach, as put forward in UNESCO handbooks and child-to-child training approaches
  3. For children with visual impairments and deaf blind children, teachers need to be able to support education in Braille, and be trained to meet other needs they might have
  4. Governments, the donor community, local communities and other resource and fund providers, need to adapt their approaches in line with the UNCRPD. Inclusive education needs the support of all stakeholders.

Around 20% of children remain out of school in Ethiopia, rising to 70% in some regions – many of these children are likely to have a special educational needs. Kenya’s introduction of free primary education in 2003 supported children with disabilities to access schools.

5.2.10 Health care equity is a development issue – Workshop 10: Access to health care Speakers: Dr Hasheem Mannan, Centre for Global Health and National Institute for Intellectual Disability, Trinity College Dublin, Ireland
Ashley Pardy, doctoral student, Griffth University, Australia

Recognizing that achieving the Millennium Development Goals depend on people with disabilities having access to health care, Hasheem Mannan spoke of the work of EquitAble, a consortium of disability and development researchers. Led by Trinity College Dublin and funded by the European Commission, their research focuses on enabling universal and equitable access to health care for vulnerable people, including people with disabilities, in resource-poor settings in Africa.

The European Parliament has recognized the importance of these issues in its “Resolution on Disability and Development 2006.” Article 9 states that each program should “include disability components in its health policies and programmes” and Article 10 includes a call to “promote disabled people’s …equal access to all health services and programmes.” Article 12 articulates the need to “integrate community based rehabilitation programmes into the primary health care sector.”

In practice in developing countries, however, there are many variations in how health care is delivered. Just a few of the issues EquitAble addresses include:

  1. Sudan: a large proportion of the population has been displaced
  2. South Africa: despite relative wealth, universal and equitable access to health care has yet to be attained
  3. Malawi: chronic poverty and a high disease burden compete for meager resources
  4. Namibia: the population is highly dispersed.

EquitAble considers disability to be represented along a continuum of activity limitations, which allows them to identify and monitor specific barriers and ways that these can overcome. It is also important to explore how activity limitations interact with other factors, such as age, gender and ethnicity, in accessing health care systems.

The expected outcomes of the research will be policy recommendations and guidelines at international, regional and national levels. These include practical guidelines in increasing good practice and decreasing barriers to fair and universal access to health care systems. Increasing the research capacity of people with disabilities who participate in surveys will be an additional benefit.

The workshop concluded that:

  1. Future policies in health care should all be inclusive and take mental health and disability issues into consideration
  2. All stakeholders, including traditional leaders, religious leaders, governments, people with disabilities and civil society organizations, should be involved in ensuring that disability is included in access to primary health care provision
  3. People with disabilities should be involved in research, policy formulation, service provision, advocacy, and continuous monitoring and evaluation
  4. There should be a disability component in all government ministries realizing that disability is a cross-cutting issue
  5. There is a need to advocate for the right to health, including people with disabilities
  6. Need for fair and just allocation of resources towards enabling universal access to health care
  7. There should be a mid-level cadre of health care providers who are competent in issues of disability.

“… whereas the UN estimates… that, out of a of population of 800 million, almost 50 million people in Africa are disabled… the UN’s Millennium Development Goals will be impossible without explicitly and proactively including disabled people of all ages…” – European Parliament resolution on disability and development

5.2.11 Equality of access leads to equality under the law – Workshop 11: Access to justice: Sierra Leone case studies
Speakers: Julius Cuffe, Barrister and Solicitor, High Court of Sierra Leone
Pearl Gottschalk, The International Foundation for Disabled Orphans, Sierra Leone and USA

“The virtue, which results in each person receiving his due…”

If we take the above as a working definition of justice, then there have been many international efforts to bring it to life for people with disabilities: the Universal Declaration of Human Rights in 1948; the Declaration on the Rights of Disabled Persons in 1975; and Standard Rules on the Equalization of Opportunities for Persons with Disabilities in 1993. The UNCRPD is the most recent and the one that has the potential to have the largest impact on legislation and practice in many countries.

Disability in Sierra Leone is a complicated issue because of the violent civil war that ended in 2002, and may offer particular challenges under the UNCRPD’s legal provisions. The war injured both soldiers and civilians, and also disrupted the health care and vaccination systems, leading to disability even among those not directly involved in the fighting.

Since the war ended, there have been many mechanisms to bring about justice for those involved. These include the Special Court, the Truth and Reconciliation Commission, and processes aimed purely at laying the foundation for peace through the Demobilization, Disarmament and Reintegration process, as well as the Lomé Peace Accord process and the electoral processes of 2002 and 2007.

Pearl Gottschalk researched the situation for people with disabilities in 2007, and her findings suggest that the peace processes presented some unforeseen difficulties for persons disabled by war in Sierra Leone. These included international aid to combatants, but a lack of support for people disabled directly or indirectly through the fighting. Many disabled people felt let down by the truth and reconciliation process, saying that participating in the Commission and the Special Court brought physical risks and fear of retribution. They were also skeptical of its benefits, and sometimes felt that their programs were handed down by foreigners, rather than reflecting local ways of bringing about justice.

Having faced some disappointment in the processes outlined above, in Sierra Leone now, people with disabilities need to rely on the country’s constitution to address their rights. There are several provisions that do this, mostly focusing on preventing discrimination. The practical barriers to enforcement of these laws include:

  1. Supreme court proceedings are very expensive
  2. The absence of “Equality of Arms” (this may be translated as not having a reasonable opportunity to present a case in court, under conditions that do not place a person in substantial disadvantages vis-à-vis his opponent)
  3. Equal legal capacity and equal access is non-existent
  4. Some access to legal help may be more cosmetic than actual.

Several measures could help overcome these problems including the creation of a Disability Rights Commission and ratifying and implementing the UNCRPD. From this, the government could formulate an overarching policy on disability issues.

“……no person shall be treated in a discriminatory manner by any person acting by virtue of any law or in the performance of the functions of any public authority.” Section 27 (2) of the Constitution of Sierra Leone

The workshop acknowledged that making the UNCRPD operational will be costly. Participants further believed that to make the most of this, disabled people should be fully involved in the implementation of the UNCRPD as stated in Article 33. Specifically, the workshop recommended the following steps to ensure access to justice in Sierra Leone:

  1. Raise awareness of lawyers and all other professionals to increase access to legal aid for people with disabilities
  2. Raise awareness of people working in the justice sector as a whole, and law reform as appropriate, to accommodate the rights of people with disabilities. This comes both with regard to following existing substantive laws, and enacting them where they do not exist
  3. Develop and implement comprehensive policies for all people with disabilities, regardless of the cause of the disability
  4. Enact legislation on disability issues and rights where it does not exist
  5. Ratify the UNCRPD where this has not yet been done
  6. Sensitize the whole justice sector from the police to prisons, so that they take people with disabilities into consideration in the application of the procedural law. This recognizes that substantive law (for instance, national legislation) may make provisions for people with disabilities, but that procedural law (for instance, judges’ rulings) might not take these provisions into account. For example, while it may be illegal to discriminate against a blind crime suspect, if police do not supply Braille copies of the person’s statement for signature at the police station, the police could write something that the suspect could not read, and could not be guaranteed was an accurate representation of his statement. In another example, people who are hearing impaired or deaf might need sound recording systems or sign language interpreters to testify or fully participate in their own court trials.

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