Sense International Annual Review 2013/14

LIVE LEARN THRIVE

Sense International Review 2013/14

This year we greatly broadened our support to deafblind people and their families in poor countries.

With a particular focus on children and young people, we have campaigned and provided services to ensure that deafblind babies are identified and given the right support in Romania, India, Bangladesh, East Africa and Peru.

We also helped prevent deafblindness by working with UN bodies to work towards rubella vaccination to eradicate this primary cause of deafblindness in East Africa.

Most deafblind children don’t get the chance to go to school, but our extensive education work this year in Peru, India and East Africa enabled children to break through the barriers and get the chance to learn – either at school or at home – and develop skills they will need later for work and life.

We spoke up for deafblind people and argued that disabled people should be included in the Millenium Development Goals framework for international development. In 2013 the UN High Level Panel produced ‘Leave no one behind’, a report which for the first time recommended the inclusion of disabled people.

A highlight of the year was when Kenya Country Representative Edwin Osundwa came to London to speak to the International Development Select Committee. As a result, the Committee’s report made it crystal clear that the UK can no longer continue to ignore the needs of disabled people in its international aid programmes, and the Government has now launched a disability framework.

Thank you so much for your interest in this vital work to help deafblind people live, learn and thrive.

All of our new developments are highlighted on our website. Please do stay in touch.

Sunil Sheth, Chair Sense International

A word from our Chair

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Sense International Review 2013/14 | 3

The earlier the better

Alex Dinu in the specialist nursery in Bucharest, Romania, making great progress having been identified as deafblind early in life.

Too many deafblind newborns across the world go unrecognised and don’t get the specialist support they need, often leaving them in extreme isolation even within their families and communities. For deafblind children, these early months are a vital chance to develop any small sense of hearing or sight they may have. Sense International’s mission is to find the children that need help as early as possible, and give them the best chance to learn to communicate, overcome isolation and thrive.

RomaniaRoutine screening of hearing and vision for newborns and children is the best way to identify early someone who might be deafblind so that they don’t miss out on key developmental stages. Sense International Romania is leading the way – screening over 15,000 babies in 13/14, supporting over 70 deafblind babies for intensive therapy and referring on many more. Romania is the second poorest country in Europe and only a tiny proportion of deafblind children get help from the Government. Sense International Romania was the first to pioneer hearing screening and visual testing in maternity hospitals and now a new district has been added to the existing four.

IndiaIn India many babies are affected by deafblindness due to a wide range of health challenges but most have previously gone unrecognised or misdiagnosed. In 13/14 Sense International India set up two new early intervention centres in addition to four established in the previous year. Over 2,500 newborns were screened through these six centres, identifying 88 deafblind babies who were included in early intervention programmes that provide sensory stimulation, nutrition support and communication training.

Kenya and UgandaThe lack of national rubella vaccination programmes in Kenya and Uganda increases the risk of infection and this is combined with a complete absence of sensory screening programmes. Sense International has been asked to work with the Kenyan and Ugandan Ministries of Health, the World Health Organization (WHO), the Kenya Medical Research Institute and the Uganda Virus Research Institute to establish a programme that will screen 300,000 babies over three years.

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Enshrining rights and freedoms

The everyday lives of families in some of the poorest countries in the world have been transformed by our work to ensure that national legislation and policy is changed at the highest level to recognise the rights of deafblind people. Sense International’s advocacy work operates at all levels of government from the national and state to village elders, as well as directly with people themselves. Our aim is to ensure we are connecting up the local and the national and supporting deafblind people to claim their equal rights.

IndiaSense International India has campaigned tirelessly to ensure that deafblindness is recognised as a distinct disability so that deafblind people can access the services and support they are entitled to. As a result of this, deafblindness will be recognised as a distinct disability in the draft ‘Rights of Persons with Disabilities Bill’. Throughout 13/14, Sense International India has been working closely with the Government of India to lobby for the new Disability Bill to be ratified and brought into action.

BangladeshOn 3 October 2013 a lifelong dream for millions of people with disabilities and their families came true as the Bangladesh National Parliament enacted the Rights & Protection of Persons with Disabilities Act 2013. Our partner in Bangladesh, the Centre for Disability in Development (CDD), ensured that deafblindness was included in the Act as a unique and separate disability, ensuring that deafblind people had their rights and freedoms protected and a platform to protect them from discrimination and abuse.

PeruSense International Peru was successful in ensuring that a deafblind person, Magally Minaya, was hired as a specialist on deafblindness with the National Council of People with Disabilities – CONADIS. Her role is to manage training programmes with different government agencies and to ensure that deafblindness is included in their work. SI Peru also trained 376 parents and relatives of deafblind children in rights promotion.

Four-year-old Sneha was abandoned by her parents on birth and is the youngest at her orphanage for the differently abled.


A chance of education

Harry, eight, lives in Lima, Peru. His family have a very small income and live in poor conditions, but Harry now gets to school.


With severely limited sight and hearing, getting an education is out of reach for deafblind children unless they have access to specialist help – which is simply unavailable in many countries. Worldwide, 58 million primary school-aged children are out of school, and one third of these children have a disability. Sense International’s extensive work in education enables children to break through the barriers and get the chance to learn – either at school or at home.

PeruOne of the main challenges facing Sense International Peru is reaching out to deafblind children who live in the poorest and most remote communities high up in the Andes or in the Amazon rainforest. To reach as many children as possible, Sense International Peru has developed online courses to ensure that over 180 educators and caregivers across the whole country have learnt basic skills to work with deafblind people. They have also equipped 12 new sensory stimulation rooms and trained 250 teachers in their use.

IndiaSense International India has reached up to 6,000 deafblind children through training special needs teachers. They have also provided education directly to over 300 children through centre, home, and community-based classes. In order to reach as many children as possible, including some of the poorest children who are unable to travel to the centres, Sense International India also provides education close to or at home.

Kenya, Tanzania and UgandaIn Tanzania, Sense International established the first ten specialist units for deafblind children and ensured that there was a nationally adopted teaching curriculum. The EU monitoring visit awarded an ‘excellent’ for its relevance and quality of design. Sense International Kenya developed a country-wide curriculum with the Ministry of Education to support the teaching of deafblind children and young adults with home-based and vocational education. Sense International Uganda established the first distance learning certificate course in deafblindness for teachers and community-based workers at Kyambogo University – in partnership with Kentalis International.

Working for life

Teopista, twelve, a deafblind student learning to sew and preparing for his future.

In countries with little or no social care, the ability to work is vital – yet many young deafblind people struggle to develop skills they need to make a living. This is not just a problem for them but for their whole family, who often struggle to support them into adulthood. Sense International aims to change this through the establishment of vocational classes, offering skills development and enterprise start-up kits. These classes include tailoring clothes, tending to chickens, weaving or even setting up a barber shop.

KenyaTwenty-two deafblind learners graduated from vocational schools set up by Sense International Kenya this year, following a four-year training course. These young people have integrated well back into their communities, with some of them building on the initial projects and others starting new ones. Attendance at the schools rose to 54 young people this year, helped by Sense International Kenya’s provision of transport and boarding fees, without which many would not be able to attend.

RomaniaAt the request of the Ministry of Education, Sense International Romania has opened the first three vocational training centres for deafblind young adults in the country and they are learning skills in digital printing and market gardening. It has also made links with employers so that the young people are more likely to be able to find employment on graduation.

IndiaSense International India continued to provide vocational training to young deafblind adults and supported 19 young people with deafblindness to set up their own income generation activities. Grants were provided as well as assistance with business planning and ongoing training and mentoring. This year, young people have been supported in a range of small businesses including goat rearing and selling milk.


Campaigning to include disabled people

Zaituni Majeisu, ten, exercising her right to education at Uhuru Mchangayiko school in Dar es Salaam, Tanzania.

There are an estimated 2.85 million deafblind people in the world. Most will miss out on an education, the healthcare they need, the opportunity of a livelihood and the chance to play an active role in their community. This is a result of stigma, discrimination and lack of understanding of their needs in society. Sense International campaigns to ensure the voices of deafblind people are heard by national and international decision makers, the media and global donors.

TanzaniaWith the new Tanzanian constitution, Sense International Tanzania is taking the opportunity to include deafblind children in its articles about education, so they have the same right to schooling as everybody else. To raise profile for the issue the Sense International Country Representative, teachers and parents of deafblind children participated in a series of TV, radio and newspaper discussion forums.

Leave no one behindIn 2015 the Millenium Development Goals (MDGs) – which set the international agenda for development – expire, and Sense International and a coalition of organisations have been working to ensure that disability is included in the next framework. In 2013 the UN High Level Panel produced a report which introduced the term ‘Leave no one behind’, recommending the inclusion of disabled people. In the follow-up report in 2014 the UN Open Working Group produced an Outcome Document with nine mentions of disability.

A powerful case for the UK GovernmentWorking as part of the Bond Disability and Development Group, Sense International has been pressing MPs, Peers and government officials to ensure that all international development funding includes disabled people. Sense International submitted written evidence to the inquiry by the UK Parliament’s International Development Select Committee into disability and development. Edwin Osundwa from Sense International Kenya came to London to give verbal evidence – making a very powerful case. The committee’s report made it clear that the UK can no longer ignore the needs of disabled people in its international aid programmes, and the Government promised to produce a disability framework.


Poor nutrition, lack of vaccinations and under-resourced, inaccessible public health services all add up to major health problems and increased occurrence of disability in poor countries. And for people with sight and hearing problems, lack of simple things like hearing aids and glasses – or cataract operations – make life unnecessarily challenging. Many deafblind children in poor countries are also severely undernourished. Sense International sets out to support the health of deafblind children and adults so they can live and thrive. We also work with governments to introduce vaccination programmes for Rubella – the main cause of deafblindness when passed from a pregnant woman to her unborn child.

BangladeshThe majority of children that we are support in Bangladesh are from very poor families. Often they are unable to receive treatment for their conditions (e.g. cataract operations) because they are too underweight and our partner organisations in Bangladesh provide high nutrition food supplements. In this way, and by educating families about nutrition and supporting them with income generation activities, we are ensuring that children no longer suffer from malnutrition and can thrive.

East AfricaIn 13/14 Sense International Kenya worked with the World Health Organization (WHO) and the Kenya Medical Research Institute to look into the prevalence of Congenital Rubella Syndrome (CRS) and so help to build the case for the Government to include Rubella in their national immunisation campaigns. In Uganda, similar research was developed in partnership with WHO and the Uganda Virus Research Institute. In Tanzania, Sense International worked with the Ministry of Health and Social Welfare on how to raise public awareness of the launch of the Rubella vaccination programme.

Tackling major threats to health

Jabayer, four, from a rural area in Bangladesh was given nourishment so he was well enough to have his cataract operation.


Bringing in the funds to do the work

“ Sense International has been able to build on and continue to deliver vital work across seven countries in partnership with many funders. These include individuals, statutory bodies such as governments, the Lottery, European Union, businesses, major donors and trust and foundations. Whether the support comes from running a marathon, individual donations, a project grant, sponsoring our website, hosting a quiz evening or five-a-side football – every penny counts and is crucial in delivering our work.”

A young deafblind girl outside St Marks School VII Bwanda, Uganda, who receives support from Sense International.

UgandaWith funding from Porticus, Sense International Uganda has been working with Mango Tree – a specialist in materials development based in Kampala – to develop and test materials that parents can use to help them communicate with their deafblind child. Thanks to this generous funding the pilot will enable 126 deafblind children in Uganda to improve their level of independence and social inclusion by receiving education and therapy at home. Once tested, these materials could potentially be rolled out across the entire community-based education programme in East Africa.

Thanks from our CEO, Gill Morbey


Here are some highlights of our partnerships in 13/14.

Classical singer Laura Wright performing at the Senseation Ball which raised £100k.

SI Director James Thornberry (third right), Chairman Sunil Sheth (left) and the Regional Directors from across the world at an event also attended by our Patron HRH The Princess Royal.

• Our partnership with the CLSA Chairman’s Trust continues to support vital work in two districts in India to develop the local educational capacity to identify deafblindness in children, and then provide the crucial support required by each child. Alongside this, the project also builds the capacity of family members to support their child through training and education as well as networking with other parents, and influencing the Government to ensure that deafblind people have access to mainstream education by raising awareness and training.

• Through the support of the Big Lottery Fund we will be piloting a new approach – Community Based Education (CBE) – which will see deafblind children receiving basic primary education in their homes. This will be coupled with a holistic rehabilitation programme, for deafblind children who have never attended school before. This innovative project will, in total, benefit 1119 deafblind children in Kenya, Tanzania and Uganda; 399 Special Educational Need teachers, 900 mainstream teachers, alongside at least 900 parents. The project will increase confidence and skills to deliver education to deafblind children, increasing inclusion and participation of both their family and community.

• Our thanks to all the supporters, corporates and hosts of the Senseation Ball 2013 which helped raise over £100,000 for our core work, educational work in East Africa and launch our Rubella Programme in East Africa.

• Our thanks to The Minerva Legacy Fund, employees of Minerva and Hautlieu School who in a unique and dynamic partnership raised over £21,000 for work in East Africa and India. Last summer, in partnership with Hautlieu School and the Jersey Overseas Aid Commission (JOAC) Minerva arranged for four pupils to visit Kenya and work with deafblind children at a school in Nairobi, while staff at Minerva and pupils from the school raised funds for the programme of activity.

• We were delighted also to be featured on the BBC Radio 4 appeal and raised approximately £15,000 enabling us to break down isolation, offer choices, and enrich the lives of many children across seven countries.

• We are grateful to our supporters – new and existing – whose generosity and on-going commitment helps us continue to work with deafblind children and their families in Africa, Asia, Europe and South America.

Sense International spent over £1.6m in 13/14 and our ability to help deafblind people is due in great measure to our donors. Of every pound raised, 87 pence goes directly to supporting and implementing our programmes and 13 pence is invested in raising further funds. Please do continue to support our work and if you require any further information or would like to discuss our work in more detail, please contact [email protected]


Sense International 101 Pentonville Road, London, N1 9LG, United Kingdom

tel +44 (0) 20 7014 9356 text + 44 (0) 20 7520 0959 [email protected]

senseinternational.org.uk twitter.com/senseinternatl facebook.com/senseinternationalPatron Her Royal Highness The Princess Royal Charity no: 1076497

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Sense International Annual Review 2013/14