Atlas Alliance - Annual Magazine 2013 - 2014 by Stiftelsen Signo

THE RIGHT TO PARTICIPATE Annual magazine 2013–2014

“Our children experience the realisation of their human rights – they get an education. This enables them to become a resource for themselves, for their families and for the society. I hope that all disabled children are able to realise their rights.” RECTOR ASHA MTAJI HASSAN AT MWANAKWEREKWE F IN ZANZIBAR

Contents The right to participate.............................................................................................................................................................................................................4 “The best development results”......................................................................................................................................................................................5 2 millions reached!........................................................................................................................................................................................................................ 7 Ready for school............................................................................................................................................................................................................................9 Deafblind people deserve a chapter of their own..................................................................................................................................... 12

Isaac – carrying the future on his head..................................................................................................................................................... 13

The hidden children – early efforts are critical............................................................................................................................................. 14

Community based development – a better way to promote inclusion of disabled people................... 16

Access to assistive devices: the path to school and independence.......................................................................................17 Actively working to improve their own lives and the lives of their children: work training and adult education............................................................................................................................................................................. 18 Savings and credit groups................................................................................................................................................................................................. 19 Knowledge and influence change attitudes: organisation and participation................................................................ 20

Ojok Banya (25) – Inspired and empowered........................................................................................................................................ 20

Parents group to make a big impact in Malawi................................................................................................................................. 20

Research to improve the future.................................................................................................................................................................................. 24 Life-saving information and training activities............................................................................................................................................. 26 Treatment that changes lives ....................................................................................................................................................................................... 28 Advocacy for the right to participation............................................................................................................................................................... 30

From policy document to action plan......................................................................................................................................................... 30

Disabled persons must be included in the Post 2015 development goals............................................................ 30

CRPD............................................................................................................................................................................................................................................ 30 This is the Atlas-alliance..................................................................................................................................................................................................... 32 The Atlas Alliance expenditure in 2013................................................................................................................................................................. 34 Front page and photo page 2. School children show sign language at the Mwanakwerekwe F school in Zanzibar. Photo: Atlas Alliance

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The right to participate IF STEPHEN HAWKING HAD BEEN BORN IN MALAWI...

What kind of life would he have had? He would probably have been isolated from the world around him, without any real chance to make use of his brilliant mind. This is the case for far too many disabled persons. There is a widespread view that education and schooling are wasted on children with disabilities, which is one of the reasons why the disabled are among the poorest and most vulnerable groups in the world. Disabled persons are excluded from education; they do not receive the health services to which they are entitled; they have trouble finding jobs, earning a living and taking part in social life; and they are not included in decision-making processes. It is estimated that 80 % of the world’s more than one billion disabled persons live in poor countries. Who knows what potential the world misses out on when disabled persons never have the opportunity to share their talents? SIMPLE STEPS – MAJOR PROGRESS

All individuals have the right to learn and to participate. Knowledge and education are the building blocks for integration into and participation in society – for all of us. The Atlas Alliance work to provide disabled persons in developing countries with opportunities to become independent and develop as a resource to society. This is beneficial for them as members of the community as well as for the communities in which they live. Persons with disabilities must be included in and given access to primary schools, vocational training, and university and adult education. The child who was once hidden away must

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be offered an education and disabled youths must be given the tools needed to make a living. Much can be achieved through simple steps: an accessibility ramp at school, easy-to-install assistive devices to facilitate mobility, teachers with knowledge about disabilities and comprehensible information provided to parents. The impacts can be substantial. Help to 10 individuals may change the lives of 100. ERADICATING POVERTY REQUIRES THE PARTICIPATION OF DISABLED PERSONS

The UN Millennium Development Goals have helped to lift many out of poverty and provided large numbers with access to schooling. But there is one group whose rights have not yet been realised: those who are poorest and most marginalised. This group has thus far not benefi ted from the development. A large proportion of this group consists of individuals with disabilities. The Norwegian Government have recently stressed the importance of including marginalized groups in the fight against poverty and also to focus on education in general and the right for girls to be educated in particular. We share the concern of the government and take it that firm steps will be taken to include children and people with disability in the effort made. Now it is their turn. THE INCLUSION OF GIRLS IS A MUST

It is essential to intensify the focus on girls’ access to and ability to complete schooling. Girls with disabilities face discrimination

on two fronts: gender and reduced functionality. The Atlas Alliance will continue its efforts to promote inclusion and equality for girls, taking into account the respective needs of girls and boys alike. THE ATLAS ALLIANCE IN A UNIQUE POSITION TO HELP

The Atlas Alliance have over 30 years of experience with developmental work and is one of the main partners of the Norwegian Agency for Development Cooperation (Norad) in carrying out long-term developmental assistance activities. The Atlas Alliance consist of dynamic organisations of people with disabilities that have spent decades fighting for their rights both nationally and internationally. The task has involved identifying the needs, applying personal experience, and then coming up with targeted, effective and lasting solutions. There is a huge amount that still needs to be done. But there are also vast opportunities to rejoice in having made a difference.

Arnt Holte Chairman of the board, the Atlas Alliance

Jafeti luhena (11) from Malawi lost his leg in a car accident when he was nine. He was lucky to continue the school which is not always obvious in Malawi. Photo: Torgrim Halvari

“The best development results” A new evaluation report1 of the Atlas Alliance states that “The Operation Day’s Work Secretariat reports that the Atlas Alliance projects have the best development results in their entire project portfolio”. We are both proud and pleased to get this response to our work, especially as the Atlas Alliance has also received very good results for our development work supported by Norad. Our par tners are pleased with the cooperation, knowledge, approach and added value that they gain by partnering with the Atlas Alliance. The Alliance is creating important results for the disabled in the south as disability organizations gain strength. The partners emphasize the benefits of sharing knowledge and experience between Disabled Peoples Organizations (DPO) / disability organizations, while general and technical assistance also plays a valuable part in our cooperation. Based on reports from our partners, there is no doubt that the Atlas Alliance port-

folio has led to positive change in the lives of millions of people. In the next pages you will find the figures showing the impacts our efforts are having, such as the impressive 65,000 people who have regained their vision after eye surgery conducted by the Association for the Blind and their partners from 2010 to 2013. An aspect of promoting disability rights is also to fight for political change at the national and international level. The Atlas Alliance has convinced the Norwegian government to take more interest in the promotion of rights for disabled people. The ratification of the UN Convention on the Rights of Persons with Disability (C RPD) in June 2013 was a major step in the right direction. Also in the Nordic countries and in the UN the Alliance has advocated strongly for moving the positive words into action. A lot is still to be done. Nevertheless, we are pleased to present this report with specific and documented results that take us some steps ahead.

1 “Nothing about us without us. Evaluation of the Atlas Alliance: Organisation, Focus, Portfolio, Approach” by Scanteam, June 2014

Morten Eriksen manager

Pupils at the Mwanakwerekwe F school in Zanzibar. Photo: Atlas Alliance

Welcome to our annual magazine 2013-2014 In this magazine we are proud to present solid facts and figures about the work of our partners and alliance organisations from the past few years. And â&#x20AC;&#x201C; not to forget â&#x20AC;&#x201C; we present stories about bold people who have made their way from often unhappy and isolated lives to contributing and satisfied lives as included members in their society. If you want to know more, please se www.atlas-alliansen.no or look us up on Facebook or Twitter. I wish you a pleasant reading! Anne Nyeggen editor in chief

Figures that count

millions reached!

A FEW EXAMPLES FROM OUR PARTNERS:

At least 2 million people have been targeted and reached through our portfolio in the period from 2010 to 2013. They have obtained access to health care, rehabilitation, economic and education services, as well as access to knowledge and capacity building.

Zambia’s DAZ, the sister organization to Norway’s Diabetes Association, has increased its participation from 750 members in 2010 to more than members in 2013.

1500

The country reports further suggest that more than 14 million people have been reached indirectly as a result of our development initiatives.

21,500 children with hydrocephalus and/or spina bifida (“water

on the brain” and spinal injuires) are now benefitting from our program targeting early intervention, treatment and rehabilitation. This number has more than doubled since 2009, with 3,000 children identified and reached in 2013 alone.

670,000

people have received eye health treatment, More than including 65,000 that underwent surgery, between 2010 and 2013 (the expected number was 200,000 by the end of 2014).

1000 health workers have received eye care treatment training. 119 inclusive schools in Zanzibar have

350,000

Approximately people have been treated for tuberculosis in the three year period from 2010 to 2013.

54,000

In China people have received extensive capacity building and been trained as Disability Commissioners or community based rehabilitation workers. Approximately 600,000 disabled people have been reached with these services.

FEDOMA, the Umbrella organization for DPOs in Malawi, now represents nine different DPOs with a total membership of about

140,000

enrolled more than 5,000 children with disabilities.

40 children and young people who

are deafblind are receiving education and training in Malawi. The neighboring countries have no such offer.

12,000

people with disabilities More than in Uganda are benefiting from the economic empowerment program, gaining income and self esteem.

6,559 people have benefitted from subsidized farm inputs in Uganda

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Boys at Masongola school in Malawi. The school has worked hard to recruit and make adaptations for children with disabilities – with good results. Photo: NFU

Ready for school UNICEF estimates that 57 million children around the world do not have access to schooling. As many as 40 % of these are children with disabilities. In Southern Africa, up to 90 % of disabled children may be excluded from the school system. A large number of the disabled children who do attend school do not complete their education, often because the school or way of teaching is poorly adapted to their needs. It is uncertain how many disabled children do not have access to schooling since statistical data are unreliable and incomplete. These children are not visible, and are therefore difficult to count. AN INCLUSIVE SCHOOL IS THE BEST SCHOOL

All children have the ability to learn, regardless of gender, ethnicity, economic background or disability. This is the underlying assumption for an inclusive school. It takes into account the child’s needs and adapts the teaching method to the individual’s skills and level. The teachers are trained to handle diversity and take steps to create an inclusive learning environment. For disabled children and adolescents, it is critical that their neighbourhood school welcomes them with open arms. Experience and research also show that a school focused on presence, participation and learning outcomes not only benefits disabled children, but all other children as well.

Impor tant components of an inclusive school are special education, adaptation and use of assistive devices, accessible school buildings, roads and toilets; teachers who regard diversity as an asset, can adapt their way of teaching and are not afraid to try new methods; rectors and school inspectors who work actively to promote inclusion and disabled children’s rights; active and creative use of locally available/low-cost materials to develop learning materials and equipment for teaching.

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Girls at the Mwanakwerekwe F school demonstrate how to say hello in sign language. Photo: Atlas Alliance

SCHOOLS IN CRISIS AND CONFLICT SITUATIONS Children with disabilities often experience a greater degree of trauma in crisis and conflict situations. They are the first to be left behind by their families and the last to receive emergency relief and assistance. They more frequently become separated from their parents, and they are not able to recognise or flee from danger. We know that disabled children are seldom included in registries on emergency relief and assistance. This is why it is crucial that schools and educational activities organised in crisis situations include children with disabilities. This is the best guarantee that disabled children are looked after and get the help they need.

Inclusive school in Zanzibar In Zanzibar, the Atlas Alliance, via the Norwegian Association for Persons with Developmental Disabilities (NFU), support a large-scale project on the inclusive school. The project was launched in 2004 in 20 schools. In 2005, 450 disabled children were included in the 20 pilot schools. In 2013, more than 5 000 disabled children were included in 119 schools that were part of the programme. In addition, many children with all types of special needs are benefiting from a school day adapted especially for them. The project was initiated by the Zanzibar Association for People with Developmental Disabilities (ZAPDD) and implemented in cooperation with school authorities.

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MWANAKWEREKWE F: A CROWDED, BUT INCLUSIVE SPACE

The children in Mwanakwerekwe F live together in close quarters: 1 700 children attend school – 800 in the morning, 900 in the afternoon. Eighty-three pupils have a disability. Many are deaf, some use a wheelchair, and others are developmentally disabled. But the atmosphere is open and inclusive. Rector Asha Mtaji Hassan proudly shows off the school, and takes us from classroom to classroom. We learn to say “jambo” (hello) in sign language in the school’s sign language class, and we get to meet Mahi, a developmentally disabled, seven-year-old boy. Until January 2014, he spent his days sleeping at home. He had little else to do since he was locked inside while his mother was at work. Now he is happy and integrated at school. His mother

is happy too. An extra bonus is that Mahi now sleeps at night because he is so busy at school during the day. The training that teachers receive is a crucial part of the formula: Not unexpectedly, the children perform much better at schools where all of the teachers have been trained in inclusive education than in schools where only a few teachers have received such training. Consequently, the Atlas Alliance and the Norwegian Association for Persons with Developmental Disabilities (NFU) have a stated objective of ensuring that all teachers are trained in inclusive education. Efforts are also being made to place an adviser in each district to follow up the individual schools. Inclusive education will be part of the teacher training offered at the State University of Zanzibar beginning in autumn 2014.

Before, Mahi spent his days sleeping. Now he goes to school instead. Rector Asha Mtaji is pleased about this and hopes more children like him will follow suit. Photo: Atlas Alliance

THE ATLAS ALLIANCE WORKS IN MANY AREAS TO PROMOTE THE INCLUSION OF CHILDREN WITH DISABLITIES IN SCHOOL. WE HELP TO: ■■ Ensure that disabled children, including those in crisis and conflict situations, receive basic education

■■ Ensure that disabled youth have access to more advanced education. ■■ Make schools accessible. This includes infrastructure such as toilets and ramps and school materials such as Braille machines and textbooks.

■■ Provide education for necessary personnel – teachers, assistants, care workers, etc. ■■ Promote organisation-building: that disabled people form organisations, parents’ groups and advocacy groups that encourage the authorities to take responsibility, and assist in the adaptation of inclusive schools.

SOME RESULTS: BETWEEN 2010 AND 2013 ■■ 6483 children with disabilities have been enrolled in school in Malawi ■■ 3500 children with disabilities are (60 per cent girls) enrolled in mainstream schools in Lesotho

■■ 119 inclusive schools in Zanzibar have enrolled more than 5,000 children with disabilities, with 18 of them going on to higher education.

■■ 215 children with disabilities are enrolled in bilingual classes (use of Chinese Sign Language) in China.

■■ 6 deaf students have graduated and have attended university studies in Palestine ■■ 16 schools in Northern Uganda are implementing the inclusive education model ■■ 23 deaf teachers are working in partnership with the hearing teachers in the 10 bilingual project schools in China

■■ In Zambia 2945 teachers have received inclusive education training. The curriculum for the Diploma in Primary Education in three teacher training programmes has been reviewed and revised to mainstream inclusive education.

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Carrying the future on his head. Deafblind Isaak learns how to fetch water with Sister Emma Kolumbe. Photo: Ă&#x2DC;yvind Woie, Signo

From 2010 to 2013 4 0 children and young people who are deafblind enrolled in education and training in Malawi. The neighboring countries have no such offer.

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“Nobody knows how many deafblind children there are in Malawi. They are there, but they are very well hidden.”

Deafblind people deserve a chapter of their own Sight and hearing are senses that are vital to the ability to receive information, but deafblind people have little or no use of these senses. Deafblindness is a combination of visual and hearing impairments that significantly inhibit the activities of those affected. These individuals need to have specially-targeted services, adaptation of their surroundings and/or technical assistive devices. There are no figures on the number of deafblind people in lowincome countries. In addition, many are erroneously diagnosed as either deaf or blind or even developmentally disabled. The Signo Foundation, which works to promote the inclusion of deafblind people in Malawi, among others, estimates that there are approximately 200 deafblind individuals in the country.

Isaac – carrying the future on his head

here because labour is mostly manual. No one knows the number of deafblind people living in Malawi. They do exist, they are just very well hidden but Sister Emma finds them. Her work is one of the Signo Foundations development assistance projects. Sister Emma Kolumbe tells us: “Usually the deaf-blind of Malawi only get one of their disabilities registered. The fact that the combination of the two demands a lot more follow-up is not taken into account.”

By Øyvind Woie, Signo, translated by Runa Saltnes

BLESSING

Isaac is balancing a basin on his head. Sister Emma walks behind him making sure he is OK. By managing to carry water, Isaac contributes to watering the crops at home. Isaac Macdonald is 14 years old and was born deafblind. He lives in Malawi, one of the poorest countries in the world. Children with disabilities are often thought to be of little value

Isaac goes to school at the Chisombezi deaf-blind centre where Sister Emma has been the leader and driving force since 2004. “I am only one of Gods servants. To me this is a blessing”, says Sister Emma. Thirty years ago she took the vow to become a nun. The monastery is not far from where she now runs her centre where 13 children and their families are educated and guided. In addition another 40 deafblind people

receive home based education. The work of Sister Emma is unique in the southern part of Africa and is conducted with technical assistance from Signo and funds from NORAD. INDEPENDENT LIFE

Isaac is feeling his way with his feet, always moving carefully. To keep direction he lightly touches the house’s wall with his hand. When reaching the water tap he lets the water stream into the basin. By its sound he knows the basin is full. Sister Emma laughs when the cold water makes him twitch. “Our goal is to help these children so that they can live an independent life. By doing so, they can be a resource at home and contribute to farming or in other ways”, says Emma while helping Isaac lift the basin up on top of his head. Step by step, they walk together.

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A smile on Sunday’s face: He has learned many things since he and his mother joined the parent support group. Photo: NAD

The hidden children – early efforts are critical The earlier the children (and their parents) get help, the better. Parents of disabled children often believe there is little hope for their son or daughter. Taking their child to a parent support group where they can see first-hand the importance of stimulation and exercise can make a big difference. Parents of children with disabilities often feel they are alone in having a child who is different. Many keep their children hidden indoors, where they grow up with no contact with children their age and no chance to go to school. Exclusion and stigmatisation can also put a child at risk; it is not uncommon for a disabled child to die because the parents do not know how to administer the proper care. Establishing parent groups for parents with disabled children is an important part of the Atlas Alliance’s work. Parent groups provide parents with training, and can change attitudes and save lives.

OUT OF THE SHADOWS – THE STORY OF SUNDAY AND AGNES

Three-year old Sunday has cerebral palsy. His neighbours believed his disability was caused by sorcery and called him a ghost. Although he lived in Uganda, the little boy saw very little of the sun during the first two years of his life. He spent the most of his day inside. His mother, Agnes, thought that the best way to protect her son was to keep him out of sight. Agnes joined a parent support group when her motherin-law forced her to take Sunday and leave the house. It was a turning point for Sunday and Agnes. She discovered that she was not alone and learned how to deal with her son’s disability. Sunday learned how to eat by himself, has made friends and loves to play outside. Agnes is now saving up money to buy a small shop and her son is registered in school. Moreover, the other villagers have changed their attitudes towards Sunday.

Attending a parent support group meeting was a turning point for Agnes and her son, Sunday. They realised that they were not alone. Photo: NAD

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“I know a number of people from my own circle of friends who don’t dare to tell others that they have a child with a disability. Nor do they think about the fact that their children have the same rights as all other children,” explains Sheela Thap in Nepal, mother to Satvam, a 12-year-old with Down’s syndrome. Without any public funding, she is running a school for disabled children aged three and older. Photo: FFO

A peer teacher in Uganda gives training in wheelchair use. Photo: NAD

Community based development â&#x20AC;&#x201C; a better way to promote inclusion of disabled people Our approach to disability inclusive development is Community Based Inclusive Development (CBID). CBID is the latest generation of CBR (Community Based Rehabilitation) that was initiated and formed in the 1980s. It is a method that defines disability as a societal rather than an individual problem. The approach is therefore holistic, multidisciplinary, and focused on human rights. The main goal is to remove barriers and promote social change and inclusion, and not just provide individual care and rehabilitation. CBID is implemented through the combined efforts of people with disabilities, their families, organizations, communities, and relevant government stakeholders. In the communities it is implemented by a network of social workers and volunteers who mobilize resources and support within the community for people with disabilities and their families. They also give psychosocial and practical support, and refer those that need additional assistance to relevant experts. Adequate legislation, planning, policies, and resource allocation are preconditions for a well functioning CBID programme, hence the method entails government support and involvement. The method embraces all disabilities and age groups and attempts to respond to the specific individual needs and aspirations of people with disabilities. Health, education, social conditions, livelihood and empowerment are the main focus areas. Â Â

The right help and support gives thousands of disabled people a chance to lead active lives, pursue an education and find work.

The help that Amina received made it possible for her to attend school and make friends. Photo: RHF

Access to assistive devices: the path to school and independence The organisations under the Atlas Alliance umbrella are working to ensure that people with disabilities have access to proper assistive devices and training for mobility, take care of their own health, and coping with living with impairment. For many individuals, this will mean the difference between life and death. Those who take part in the training are given an opportunity to learn to rely on their own resources rather than feeling like a burden to those around them. Without proper assistive devices, people with disabilities remain isolated at home with no chance of pursuing an education and finding employment. And without knowledge about how to take care of their health, many are at risk of premature death. For example, 75 % of people with spinal injuries die within 18 months as a result of secondarily contracted pressure ulcers or urinary tract infections. The Atlas Alliance, through the Norwegian Association of Disabled (NAD) and the Norwegian Association for Spina Bifida and Hydrocephalus (RHF), support projects in Tanzania, Uganda, Malawi and Lesotho. The projects run centres that produce and provide needed assistive devices, which can also be repaired on site. The centres provide people with disabilities with training in the use of the devices and in how to cope with an impairment. An important component of these activities is the training of peer teachers. Individuals with disabilities become qualified to provide services and training to other disabled persons.

WITH THE RIGHT KNOWLEDGE, A LITTLE HELP GOES A LONG WAY

Amina was born with spina bifida in the slums of Dar es Salaam, Tanzania. The vast majority of people with this condition need catheters in order to function in daily activities. Knowledge about such devices is not widespread, however, so many children with spina bifida are socially ostracised and cannot attend school. Infections can also be life-threatening. Through an RHF programme, Amina’s mother was put in touch with workers at a hospital in Dar es Salaam. Amina received catheters and her mother was taught the procedures. This also opened up new vistas for her mother, who learned English and found a job as a counsellor for other parents of patients at the hospital. Now Amina has learned to catheterise herself and has become a lovely young woman who does well at school and gives hope to many others.

SOME 2010 – 2013 RESULTS FROM BOTH CBR AND SPINA BIFIDA WORK: ■■ 21,500 children with hydrocephalus and/or

■■

■■ ■■

■■

spina bifida are now benefitting from our program targeting early intervention, treatment and rehabilitation. This number has more than doubled since 2009, with 3,000 children identified and reached in 2013 alone. Interactive home based physiotherapy sessions including parents are undertaken in 13 centres in Zambia 10,241 disabled persons received technical aids in West Bank and Gaza, Palestine 3 well functioning wheelchair centres are established in Lesotho providing wheelchairs to 270 persons with disabilities. The government in Lesotho are now allocating funds to wheelchair provision in annual budgets Two local rehabilitations workshops (LOREWO) in Namibia and Zimbabwe have received training and technical and financial support and are now the most highly skilled and equipped wheelchair supply organization in both countries.

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Gertrude Adong has regained her optimism about life. Photo: Sunra Lambert Baj/ NAD

Okware Azalia is disabled and a pineapple farmer. Three of his children have begun university studies. Photo: Sunra Lambert Baj/ NAD

Actively working to improve their own lives and the lives of their children:

work training and adult education Over 80 % of the world’s disabled live below the poverty threshold. In Uganda, the proportion of disabled persons living below this threshold is twice that of the rest of the population. It is estimated that two of three disabled people living in Lesotho are dependent on their families in order to survive. Almost all of these people will be able to provide for themselves under the right conditions.

BETWEEN 2010 AND 2013 ■■ In Uganda two operational MoUs with the National Agricultural Advisory services (NAADS) have facilitated the inclusion of 326 (of which 195 female) disabled farmers in NAADS’ service. ■■ 6559 people have benefitted from these subsidized farm inputs.

Providing persons with disabilities with an opportunity to work and earn an income is a key tool for lifting them out of the poverty trap. Employment is essential not only to the individual in question, but also to his or her family and children, as it improves the outlook for their futures as well. Employment opportunities are thus a top priority for most organisations in the Atlas Alliance. Agricultural projects In 2001, Uganda began a farming initiative targeting the poor population in remote villages. The idea was to provide training and a small amount of start-up capital to enable villagers to carry out simple farming and increase their families’ standard of living. The project was very successful, but did not encompass people with disabilities. The agricultural advisers did not know how to include disabled people and the local population were unwilling to have them take part due to the stigma attached to disabilities. In light of this, the Norwegian Association of Disabled has been actively working since 2011 to promote the inclusion of disabled persons in agriculture. People with disabilities are now able to take part in the training and

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they receive a small amount of start-up capital in the form of grain, vegetables or livestock. During 2013, 12 disabled farmers established small farms. They are able to provide for their families and to send their children to school. This success will now be expanded to include all of the Atlas Alliance’s partner countries. Gertrude Adong, a blind mother of four, is delighted to prepare cassava for the main meal of the day. She loves what she does, knowing that it helps to keep her children well fed. After starting in the farming programme with a few livestock and a small parcel of land she has regained her optimism about life and is now held in esteem by the rest of the

village. The memory of going blind and being abandoned by her husband seems distant. Okware Azalia also has a disability and has taken part in the farming project in Uganda. He explains, “I am one of the lucky ones who have learned a bit about modern farming and who have seen that people really can change their lives. I have four hectares of land where I grow pineapples. I am planning to increase my production. I earn enough money now to be able to send my children to school. Three of them have even begun studying at university and I hope to be able to provide the youngest two with a proper education as well.”

Many people benefit when a disabled person is given help to feed his or her family Photo: Sunra Lambert Baj/ NAD

Previously excluded and alone, the participants now feel like part of the community and receive recognition and respect from the other villagers. Photo: Kristin Iversen/NAD

«We can manage»

Savings and credit groups “I counted 21 hands in the air. In that group of 24 people, there were 21 parents who had sent their children to school this year. Then I asked how many were able to pay the tuition fees for their children last year. Nobody raised their hand,” says development adviser Kristin Iversen following her trip to Uganda to visit the savings and credit group project “We Can Manage”. With only a little training and guidance, these groups mobilise the local communities’ own resources and improve the lives of poor people with disabilities in rural districts. The project has many positive effects: Disabled people in these groups get money in their pockets, they do not beg anymore, they have replaced the straw roofs on their homes with corrugated iron, and they have opened small shops. Rather than sitting outside their mud huts with nothing to do, they have structure to their day and a reason to get up in the morning – they must work to earn money for the monthly savings amount, they must save to pay down the loan from the group. Most of them did not know each other before, but now they seek out advice and support from the group. Previously excluded and alone, they now feel like part of the community and receive recognition and respect from the other villagers. The savings and credit group project, which is supported by Atlas Alliance and the Norwegian Association of Disabled (NAD), has attracted international interest and recognition, perhaps because it is such a good example of inclusion. These groups are not only for people with disabilities. They are for everyone, although the majority of the members must have a disability and the group must be headed by a disabled person. The Atlas Alliance and the NAD will be expanding their

activities involving savings and credit groups in the coming years. There are plans to establish 2 800 new groups over the next five years, which will help 70 000 people to provide for themselves and their families. At the same time, these groups help to promote an important change in attitudes, encouraging disabled persons themselves and their communities to understand that a disability does not need to be a burden.

SOME 2010-2013 RESULTS: ■■ More than 12,000 people with disabilities in Uganda are benefiting from the economic empowerment program, gaining income and self esteem. ■■ In Malawi 653 persons had opened businesses and 936 were in employment ■■ In Palestine, 299 disabled people (47 % women) became self-employed, 251 (48 % women) received a permanent job; 1220 (47% women) received loans to start a small project

Ojok Bangya has benefited greatly from the change agent training. Photo: Private

Nothing about us without us!

Knowledge and influence change attitudes: SOME 2010-2013 RESULTS: ■■ In China the China Disabled Persons’ Federation (CDPF) has managed to train 54,000 disability commissioners and community based rehabilitation workers. Approximately 600,000 disabled people have been reached with these services. ■■ Substantial growth in local branches partner organisations, i.e. NUDIPU in Uganda and FEDOMA, the Umbrella organization for DPOs in Malawi have increased their membership and diversity. FEDOMA now represents nine different DPOs with a total membership of about 140,000. ■■ NFU supports organizational capacity development of parent organisations in Nepal (GFPID), Zanzibar (ZAPDD), Malawi (PODCAM) and Zambia (ZAPCD). An external assessment of NFU in 2014 found that “all partners have substantially developed their legitimacy and capacity during the period of review. All though their work could have been more effective, many results have been achieved.

organisation and participation It is crucial that authorities in the countries concerned take responsibility for the rights of disabled people, which many of them already do. While the understanding and acknowledgement of disabled people and their needs are increasing in many developing countries, this group too often ends up at the bottom of the priority list when budgets are tight. This is why it is important to help disabled people to organise themselves into effective pressure groups that can take part in and influence decision-making. A key part of these efforts is training change agents, as well as establishing parents’ groups that work actively within the communities to gain support and exercise influence. OJOK BANYA (25) – INSPIRED AND EMPOWERED

Ojok Banya is visually impaired and has just graduated from Makerere University with a BA in Community Psychology. He has been part of the Operation Days Work (ODW) project since its inception as the internal resource person. He took part in the drafting of the ODW project proposal and has had an active role in planning, budgeting, monitoring, and evaluation of the project. Through the project he has acquired skills in public speaking, human rights based advocacy, lobbying, and project management. He is now working with the Africa Centre for Development Impact (an NGO without disability focus) and he has started a nongovernmental organization called Joint Action on Disability and Education [JADE] to continue advocating for the implementation of inclusive education in Uganda.

PARENTS GROUP TO MAKE A BIG IMPACT IN MALAWI

The Mangochi district on the shore of Lake Malawi is lagging behind other parts of Malawi with respect to education. Because the population’s main activity is fishing in the lake, which does not require formal education, many children drop out of school. Therefore the government of Malawi, with the help of the civil society, has embarked on several initiatives to bring children and young people back to school. PODCAM’s1 Inclusive Education pilot is one such initiative. Masongola School has received positive attention for mobilizing and enrolling youth with disabilities. Before the project the school had only one boy with a disability enrolled. Now there are twenty nine students with disabilities, including seven girls and eleven students with a developmental disability. The establishment of a parents group, used to mobilize and provide in school support to youth with disabilities, was instrumental in the project’s success. Enrolment has also been improved by the school and surrounding communities setting up an additional twelve support groups for youth with disabilities. 1 Parents of Disabled Children Association of Malawi - PODCAM

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The efforts of the mothersâ&#x20AC;&#x2122; group at Masanongola school have been critical for recruiting disabled children to the school. Photo: Hanneck Mdoka

If you are not counted, you don’t count!

Door-to-door campaigns are a vital part of collecting data Photo: FFO

Research to improve the future DATA FROM THE LESOTHO 2010 STUDY A total of 61 % of disabled c h i l d r e n b e t we e n t h e ages of five and ten are in school, compared with 85 % of non-disabled children. Moreover, 29 % of disabled women and 48 % of disabled men are illiterate. The corresponding figures for non-disabled people are 11.6 % for women and 18 % for men. The Atlas Alliance will continue its research and data-collection initiatives to provide a sound basis for further developmental work.

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Knowledge provides the foundation for change, also when it comes to improvements in living conditions for people with disabilities. However, as has already been pointed out, too little is known and there has been an inadequate statistical basis for determining the occurrence of disabilities and illness, as well as for identifying factors relating to living conditions, the need for adaptation and access to schooling. This area must be given greater priority to achieve effective development. SURVEYS ON LIVING CONDITIONS IN LESOTHO MADE WAVES

The Norwegian Federation of Organizations of Disabled People (FFO) and SINTEF Health Research have carried out several surveys on living conditions in Southern Africa that have generated new, unique knowledge concerning the situation for people with disabilities. News about the first study on the living conditions among people with disabilities in Lesotho attracted a great deal of attention. It marked the first time that the situation of the disabled was discussed in the media. Over 2 000 families took part in the study on living conditions in 2010. The survey provided data on employment, education, accessibility, socioeconomic status and health.

After the study was completed, an awareness campaign was initiated via the local media. The campaign targeted the guardians and parents of disabled children with the message that they needed to register their children for school. Primary school education is free and mandatory in the small mountain country. However, only about half of the children with disabilities are in school. Following the publication of the survey’s findings, workshops were held for a variety of target groups. For example, journalists were given guidance on how to provide respectful, authentic media coverage of people with disabilities. The findings were also used to shed light on the reality of everyday life for disabled persons, revealing that they are excluded from participating in society in violation of their fundamental human rights.

In Lesotho, disabled persons helped to collect data in connection with the survey on living conditions. Pictured here: Nelson Blamini Photo: FFO

SOME 2010 TO 2013 RESULTS: â&#x2013; â&#x2013; Studies on livelihood to establish baseline data on living condition among people with disability is started or carried out in Swaziland and Lesotho, Botswana (started in 2011) and Angola (started 2013).

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Training of health workers in how to communicate with the patients is important. The patients receive correct information and treatment and is being treated with respect and dignity. Photo: LHL

■■ Tuberculosis is caused by the bacterium Mycobacterium tuberculosis.

■■ Roughly 1/3 of the world’s population are infected by this tuberculosis bacteria, but only around 10 % develop the disease in the course of their lifetime. ■■ The BCG vaccine is not effective enough, as it does not provide full protection against contracting or becoming ill from tuberculosis. ■■ Untreated, persons who have developed tuberculosis will typically infect another 10–15 people each year.

Life-saving information and training activities Health information activities and the education of health care personnel are key to improving the situation of people with disabilities and preventing diseases such as tuberculosis. These activities play a crucial role in preventing the impairments that in many cases are caused by disease, and particularly for preventing and treating tuberculosis, eye disease and diabetes. “My first child died of tuberculosis because I was a victim of my local community’s misconceptions about the disease and the lack of knowledge about how to treat it. My child had started treatment when I discovered that her stool was red. My friends told me this was from the medicine burning her stomach, so I stopped giving her the medicine. She quickly became very ill and died soon after.” A mother in Zambia

Information and education are critical for saving lives, as this case in Zambia illustrates. Each year, 8.6 million people contract tuberculosis and over 1.3 million of them die. The World Health Organization (WHO) estimates that one-third of those who contract tuberculosis do not receive the help, treatment or information they need from their health care system. Many of these patients live in the world’s poorest and most vulnerable

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societies. With early diagnosis and proper treatment, most of them would recover completely. The Atlas Alliance and LHL International work together to fight tuberculosis in Africa, Asia, and Europe. Information campaigns and educating health care personnel comprise very important elements of these efforts. A lack of correct information delays access to treatment and hinders the completion of treatment. Getting accurate information about tuberculosis out to patients and the most vulnerable risk groups is essential. As illustrated in the introduction, such information can save lives. The mother who lost her first child told her heart-wrenching story while she was at the hospital receiving treatment for her second child, also suffering from tuberculosis. The second time had a happier ending, thanks to a volunteer health care worker who gave her guidance and an information brochure that explained the side effects.

Young woman in Tanzania suffering from tuberculosis receives help. Photo: Marcus Bleasdale

Between 2010 and 2013 Approximately 350,000 people have been treated for tuberculosis

A young woman in Nepal receiving an eye examination. Photo: Stian Skalle

VISION 2020 is a global initiative to eliminate the main causes of all preventable and treatable blindness by the year 2020. It was launched by the WHO and the International Agency for the Prevention of Blindness (IAPB).

Treatment that changes lives The prevention and treatment of disabilities changes lives and provides new opportunities. VISION 2020 (the global campaign against avoidable blindness) and the fight against tuberculosis are helping thousands of people out of poverty and isolation – and back into active, productive lives. The success of these efforts is dependent on ensuring adequate education of health care workers. The Norwegian Association of the Blind and Partially Sighted (NABP) has been active in international efforts to help the blind and partially sighted since 1978. Currently the Atlas Alliance and the NABP are working together on 25 projects in 12 countries in Africa and Asia. In the period 2010–2013 nearly 670 000 people with eye disease received treatment in programmes in the NABP’s partner countries. More than 1 000 health care workers have been trained in treating eye disorders, in addition to a large number of people working in rehabilitation projects who have received basic courses in detecting eye problems and disorders. 136 000 EYE PATIENTS TREATED IN NEPAL

The Atlas Alliance and the NABP support an eye health programme in Nepal in cooperation with the Nepalese National Society for Comprehensive Eye Care (Nepal Netra Jyoti Sang). In 2012 the project encompassed 135 000 patients, 11 621 of whom underwent surgery to remove cataracts. After regaining their sight, these patients have been able to work and substantially improve their economic situation, as well

as to take a more active part in daily activities and family life, such as caring for the children.

BETWEEN 2010 AND 2013 APPROXIMATELY ■■ More than 670,000 people have received eye health treatment, including 65,000 that underwent surgery, (the expected number was 200,000 by the end of 2014). ■■ 1000 health workers have received eye care treatment training.

Seeing the brighter side now: 11 621 Nepalese patients underwent surgery to remove cataracts in 2012. Photo: Stian Skalle

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Advocacy for the right to participation The Atlas Alliance witnessed – finally – the ratification of the the UN Convention on the Rights of Persons with Disabilities – CRPD - by the Norwegian government in 2013. The convention offers clarity on the rules and the tools for empowerment for people with disabilities throughout the world. Now we need the necessary follow up – i.e. an action plan to meet the new obligations. The Convention is the first legally binding instrument with comprehensive protection of the rights of people with disabilities. The Convention does not establish new human rights, but sets out with much greater clarity the obligations of States to promote, protect, and ensure the rights of people with disabilities. The Atlas-Alliance, and many other organisations, was pleased to finally see the formal ratification of the convention in Norway in June 2013. This brought many years of work and campaigning to a happy end. Prior to the ratification, The Atlas Alliance had made use of efficient advocacy tools after a report was published in 2012 showing low scores for the Norwegian government’s support to disability rights; for instance in 2000 the percentage of the total development budget allocated to assisting people with disabilities was just 1%, dropping to 0,5 % in 2010 and dropping again in 2012 to just 0,48. FROM POLICY DOCUMENT TO ACTION PLAN

In light of the ratification process, the challenges for people with disabilities in development countries have also risen on the political agenda. This resulted in the launch of a Norwegian policy document on the ratification of the CRPD. The Atlas Alliance is pleased with the policy developments, but we firmly believe it should be followed up with an action

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plan setting up measures to mainstream the rights for disabled people in general development cooperation. DISABLED PERSONS MUST BE INCLUDED IN THE POST 2015 DEVELOPMENT GOALS

One of the issues raised in a high-level meeting on Disability and Development in 2013 was the ongoing process to create new Sustainable Development Goals. The new goals will replace the Millennium Development Goals (MDG) from 2015. As the Millennium Development Goals neglected people with disabilities in its targets and indicators, the new development framework will be crucial for defining how disability rights will be addressed by national government, particularly in developing countries. The Atlas Alliance has worked systematically both with our Nordic and global disability movement, and with likeminded organizations, to promote disability rights in the new post 2015 framework. This work has resulted in concrete references both in Norwegian, Nordic, and global positions and documents. However, the disability movement will have to lobby intensely to place disability on the agenda when the UN member states start the negotiations before the end of 2014. Without a concerted effort to include people with disabilities in goals, with measurable targets and indicators in the new framework, exclusion of people with disabilities will continue and the targets will not be met.

CRPD ■■ UN Convention on the Rights of Persons with Disabilities (CRPD)

■■ Adopted by the UN in 2006 and entered into force in 2008.

■■ 158 countries have signed, 147 ratified CRPD (2014)

■■ CRPD is both a development and a human rights instrument and is legally binding for countries that have ratified it. ■■ Article 32: ‘international cooperation should be inclusive of, and accessible to, persons with disabilities.’ ■■ Ratified by Norway on 3rd of June 2013 ■■ Norway launched a new policy on international cooperation based on CRPD in 2013, aiming at disability inclusive development and humanitarian cooperation.

NEW VOICES IN THE UN — We have managed to do more in a week at this conference than we would have in three years without it, says Mr. Ambrose Murangira from the National Association of Deaf in Uganda. First time in New York, he participated at the CRPD Conference of State Parties in June 2014. He was busy attending several panel discussions at side events, and had his calendar filled up with appointments. Mr. Mark Mapemba from Malawi took part in advocacy training for youth with disabilities organized by UNICEF. They both met with officials and authorities from their countries discussing the situation for young people with disability. Their trip to New York was funded by the Norwegian MFA through the Atlas Alliance. Mark Mapemba was representing PODCAM, the organisation of disabled children and their families in Malawi, a partner organisation of NFU, Norway.

From the left: Ms Olivia Nakigozi, interpretor, Mr. Mark Mapemba fra Malawi, Ms. Trine Riis-Hansen fom the Atlas Alliance, Mr. Harry Mapemba, father and assistant to Mark, and Ms. Ann-Marit Sæbønes from the Atlas Alliance.

Ambrose Murangira from Uganda is waiting for the panel discussion to start. Photo: The Atlas Alliance

Photo: The Atlas Alliance

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Two days a week, eight young people with various disabilities receive instruction at the Jang’ombe School youth centre, where a special class follows up older youths. They learn not only a craft or vocation, but also self-advocacy – knowing their rights and personal boundaries, and how to say no to being exploited. The project is supported by the Atlas Alliance and the Norwegian Association for Persons with Developmental Disabilities, with funding from the Norwegian Agency for Development Cooperation (Norad). Photo: Atlas Alliance

This is the Atlas Alliance The Atlas Alliance is a Norwegian umbrella organisation founded in 1981. Our member organisations are Disabled People’s Organisations (DPOs) and patient’s organisations in Norway, which have significant experience both nationally and internationally in strengthening the rights of people with disabilities and/or tuberculosis. Our goal is to promote human rights and better living conditions for people with disabilities and to fight tuberculosis in developing countries. The secretariat of the Atlas Alliance coordinates the work and is the alliance’s spokesperson, whereas the affiliated organisations take care of the development projects in cooperation with local partners in the targeted countries. The organisations within the Atlas Alliance have more than 1700 local chapters and 350,000 members in Norway. The Atlas Alliance is in charge of nearly 60 projects in 20 countries.

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THE ATLAS ALLIANCE CONSISTS OF SIXTEEN NORWEGIAN ORGANISATIONS:

■■ Association of the Disabled (NAD) ■■ Association for Persons with Developmental Disabilities (NFU) ■■ Federation of Organisations of Disabled People (FFO) ■■ Association of Blind and Partially Sighted (NABP) ■■ Association for Spina Bifida and Hydrocephalus (HRF) ■■ Diabetes Association ■■ Association of the Deaf ■■ Association of the Deafblind ■■ Association of the Hard of Hearing (HLF)

■■ ■■ ■■ ■■ ■■ ■■

Psoriasis and Eczema Association National association for the Traumatically Injured Association of Persons with Multiple Sclerosis The Autism Association Association of People with Mental Illnesses Stammering Association Association of Heart and Lung Patients (LHL)

AFFILIATED ORGANISATIONS:

■■ LHL International Tuberculosis Foundation ■■ Sintef Technology and Society ■■ The Signo Foundation

Arkhangelsk

Russia

Palestine Nepal India Laos

Sudan

Cambodia

COUNTRY OVERVIEW Uganda

AFRICA

Angola, Lesotho, Malawi, Mozambique,Tanzania og Zanzibar, Uganda, Zambia, Zimbabwe, Sudan ASIA

India, Cambodia, Laos, Nepal, Palestine

Tanzania Zanzibar Angola

Zambia

Malawi Mozambique

Lesotho

EUROPE

Russia

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The Atlas Alliance expenditure in 2013 The Atlas Alliance finance our projects mainly through our main donor Norad (The Norwegian Agency for Development Cooperation). We also have projects financed by the Operation Day’s Work (ODW) 2009.

Organisasjon

TOTALT

4 331 208

LHLI

20 604 382

NFU

7 254 840

436 628

7 691 468

NHF

22 402 640

1 758 084

24 160 724

NBF

15 975 695

1 209 348

17 185 043

Signo

2 418 712

1 675 842

4 094 554

SINTEF

1 437 911

RHF

1 978 560

DIABETES

1 393 272

5 079 902

82 877 122

0 77 797 220

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F ND

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F NH

EXPENDITURE ACCORDING TO DONOR AND ORGANISATION

Expenditure

0 bi

2 000 000

0 Af

4 000 000

2 000 000

5 000 000

4 000 000

5 000 000

6 000 000

10 000 000

8 000 000

6 000 000

10 000 000

8 000 000

15 000 000

10 000 000

15 000 000

12 000 000

20 000 000

12 000 000

Allocation

Expenditure

2013

Allocation

2013

14 000 000

2012

16 000 000

14 000 000

20 000 000

2012

16 000 000

25 000 000

2011

25 000 000

2011

30 000 000

EXPENDITURE PER COUNTRY EXPENDITURE PER COUNTRY EXPENDITURE PER COUNTRY

FUNDS CHANNELLED THROUGH DEVELOPMENT FUNDSDEVELOPMENT CHANNELLED THROUGH DEVELOPMENT FUNDS CHANNELLED THROUGH THE ATLAS ORGANISATIONS THE ATLAS THE ATLASORGANISATIONS ORGANISATIONS

The farming project in Uganda has given hope to many people. Photo: Sunra Lambert Baj/ NHF

Wisiting adress: Galleriet Oslo, Schweigaardsgt 12 Postal adress: P.O.B 9218 GrĂ¸nland, 0134 Oslo Phone: +47 22 17 46 47 E-mail: atlas@atlas-alliansen.no