May 25, 2018

The impact of wheelchairs on families living with disabilities in rural Uganda

Miss Uganda North America
Miss Uganda North America

Earlier this year, on 8th January, Miss Uganda North America visited Kyaninga Child Development Centre, in Fort Portal, Western Uganda to see the work that the centre is doing for children with disabilities, and generously donated four wheelchairs. These wheelchairs were made by a Ugandan organisation, trying to provide an affordable and sustainable option for mobility aids within the country as it is otherwise extremely difficult to obtain a wheelchair from overseas, which are also not well designed for the rough terrain in the rural villages.

The aim of this donation was to improve the wellbeing of children with mobility challenges and their families, living in extreme poverty in rural villages. KCDC mobilized the families and parents to receive these wheelchairs with their children during the Cares Tour of Miss Uganda North America.

Since January, several follow up visits have been conducted to the children’s homes to assess impact, progress and whether the home environment is favorable to allow wheelchair mobility and maneuverability.

Impact has been reported differently as parents had different reasons for acquiring wheelchairs.

George’s Story

George’s family reported “George is a God-loving boy, he demands to go to church every Sunday and the wheelchair was the only means we could meet his need because he is too heavy to carry” his Grandmother tells us.

Additionally, George is now attending primary school, and this was only possible once he had received a wheelchair, as his disability prevents him from walking and so he was not unable to attend. He loves learning and can now recognise numbers 1-10 and beginning to recognise alphabet letters. The other children in his class, both able-bodied and with disabilities, enjoy pushing him in his wheelchair and including him in their games outside on the field.

The wheelchair has really opened up opportunities for George and his family and they are excited for the possibilities the future holds from them all.

Annett's Story

Annett’s mother has five children, and four of them live with a disability that causes movement, communication and mobility difficulties, as well as intellectual difficulties. Without sophisticated medical testing and specialist doctors, it is difficult to know what condition they all suffer from, but all are very dependent on their mother for most activities of daily living.

Even with Dad’s help it is extremely difficult to manage all four children, especially attending social gatherings such as church and community functions. Annett being the elder (17 yrs.) and also the heaviest was always left at home due to mobility challenges, but this leaves her lonely and vulnerable. She is able to crawl around on the floor but cannot stand or walk, she communicates through noises and gestures, which the family can understand but others in the community find hard to interpret.

‘Annett cannot push herself around her home environment due to limited learning, but I find it easy to push her to community gatherings and she is always happy to see other children’ her mother reports. She goes on to say that ‘she enjoys having all her children together again when they are going out, and she can put the youngest child on Annett’s knee, so that she can care for her as well.

We hope to provide a second wheelchair to Annett’s sister, so that her parents will be able to push both girls rather than carry them, making life a little easier again.

 

The families with their new wheelchairs
The families with their new wheelchairs
Annett happily going out with her mother at home
Annett happily going out with her mother at home
George and his grandmother at home
George and his grandmother at home

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Jan 24, 2018

Can an illiterate women become an entrepreneur?

Moreen and Jackline , our Street Business coaches
Moreen and Jackline , our Street Business coaches

How do you break the chains of poverty and start your own business if you live on less than $1 a day? How do you start a business without capital, without a business education, or any education at all? Can an illiterate woman become an entrepreneur?

That’s what the team at Kyaninga Child Development Centre are trying to do for the families they work with. We don’t believe in giving people handouts of the essential items that they need (the old philosophy of International Aid), without giving them something more sustainable as well – it comes back to the old saying ‘Give a man a fish and feed him for a day, teach a man to fish and feed him for life’.

Many of the 920 families that KCDC work with live in extreme poverty in rural western Uganda. They survive on the food that they grow in their gardens and hope to have a little left over to sell in the market, which will allow them to pay for their children’s education, healthcare and other essentials. Many children with disabilities live in single parent families, being cared for by their mother or grandmother, and often have been abandoned by their fathers. Many of these mothers are illiterate, attending only 1 or 2 years of primary school before being withdrawn to help at home with their younger siblings and the household chores or to marry young and take responsibility of their own home and young children.

In Uganda, only 63% of children complete primary school education, and only 24% enrol into secondary school education. This makes it almost impossible for a young mother to go out and find work and earn money to support herself and her family. If a child has a disability, this becomes even harder due to additional childcare needs and healthcare costs.

To try and tackle this, and support these incredible women, we have introduced the Street Business School, created by Bead for Life. In this 6-month project, women are trained in practical-simplified business concepts, business plan development, capital procurement and bookkeeping and with this new skill set they can create opportunities for themselves. This may be in the form of a small shop to sell fruits and vegetables or making chapatis. They could buy chickens to sell eggs, as well as improving their own families diet, or use an existing skill such as basket weaving or bead making but they learn how to market themselves and save their money. The key aspect of the programme is that the women are not given an initial capital, but are taught how to generate and build it themselves

The model has proved so successful that we decided to have two mothers of children that we work with, trained through an intensive, immersion workshop and then employ them to train other parents. Not only do these training sessions allow for business skills transfer and entrepreneurship, enabling mothers to make their own income and lift themselves out of poverty, but they also provide a perfect opportunity to help mothers understand their rights as parents and advocate for them accordingly. We hope that by coupling this model with our inclusive education program, we will free-up time for the parents and also give them skills to use this time to create different revenue generating schemes.

Moreen has a diploma in Tourism and Hospitality Management but had to leave her job in a local hotel when her son Joffrey was born. After a difficult labour and delivery, Joffrey has developed Cerebral Palsy, with frequent epileptic seizures and a delay in his development. He struggled to feed well as a baby and was slow to put on weight. This meant that it was difficult for Moreen to leave him in anyone else’s care when she wanted to return to work. Now that Joffrey is 2 years old, he is much stronger, and through KCDC education and intervention, his family are happier to care for him, allowing Moreen to become one of our Street Business School coaches.

Along with one other coach, Jackline, they are running classes weekly with 20 women, in 6 local communities to bring the opportunities of entrepreneurship and business skills to those that never believed they had a chance.

One of these women, who is now excited for her future, is Julliet, a single mother to 4 children, including 5-year-old Joseph who has Downs Syndrome. This is a genetic disorder, causing learning difficulties and delays in development, but his condition was blamed on witchcraft by her husband, and the reason he gave for leaving. Julliet has struggled to provide enough food for her family, and spends many days working in her garden, preparing maize, beans and matooke, a type of plantain banana and a staple food of Uganda, hoping that there is enough to take to market for extra money to pay for school fees.

She would also like to send Joseph to school, but the local school in the village refuses to take him because of the extra support he requires, and she cannot afford the costs of sending him to a school further away, so at the moment, he is at home with her all day, and it is difficult for her to go out and find work.

She joined the Street Business School because she wants to have a better future for her children, especially Joseph, and to give him the support and opportunities he deserves. She would really like to set up a small shop in her village, close to her home, where she can sell local fruits and vegetables, charcoal and firewood and other local essentials. She hopes that one day Joseph will also be able to work alongside her in the shop, to show others that people with disabilities are capable of more than many people expect.

To generate her start-up capital, Julliet will be selling her surplus vegetables at harvest in the market and saving the money, which she can then invest in her shop. She will also look around her home for items she no longer uses to sell and add to her savings. She will learn about savings and investments, book-keeping and business development through the Street Business School programme and she has the support of 19 other women in her class, the KCDC team and Bead for Life behind her, which should ensure her success.

Joseph, carried by his mum, coming for therapy
Joseph, carried by his mum, coming for therapy
One of the Street Business School classes at KCDC
One of the Street Business School classes at KCDC
Oct 27, 2017

The challenges of accessibility in rural communities in western Uganda

Peter at home
Peter at home

Accessibility is something we take very seriously at Kyaninga Child Development Centre.

Imagine that your 7-year-old child is unwell, with a severe fever and you suspect it is malaria. You know that they need healthcare and medication urgently, that right now, every second counts. Since the last time they had malaria, when you delayed getting to the health centre, they lost their ability to sit independently, to speak and can no longer attend school. You know that further delays in seeking healthcare will probably make your childs disability worse.

But you are a peasant farmer, growing just enough food to feed your family, and maybe sell a little after a good harvest. But there is no spare money for life’s luxuries, such as local transport, new clothes or a mobile phone. Because of this poverty, you live very deep in the village, 30 kilometres from town and about 8 kilometres from the main road: 8 kilometres down a steep, rutted, bumpy, dirt road. In the rainy seasons the road is frequently impassable, and often quite unsafe for use by vehicles. You will need to walk this road, carrying your child, to reach the health centre and that medical attention that you desperately need.

What would you do?

This is a scenario faced by so many families that Kyaninga Child Development Centre works with, living in the mountains and rural villages across the western region of Uganda. Families like Peluce and her 5 children. Her 7-year-old son is Peter, and at the age of 4 he had severe malaria that left him disabled because she was unable to reach the health centre, and she has been struggling to get any help or therapy for him -  the government physiotherapists are based in town, 30km away.

That was until she heard about Kyaninga Child Development Centre, who provide free physio, occupational and speech therapy services, at her home, so she doesn’t have to walk those 8km, leaving her children home alone for hours. KCDC uses their 4-wheel drive vehicle to carry the therapists, medical and therapy equipment to reach those who need us most, but have no access. Now, after regular visits by the KCDC team, Peter is able to sit independently again, is starting to move around and pull himself to standing and is learning to communicate through gestures and pictures as he learns to speak again. We will continue to visit Peluce and Peter and work with them to help regain his abilities and skills so that he can return to school and participate in family and village life again.

Our extensive outreach services are an innovative and unique feature of our rehabilitation/ therapy services.  The majority (57%) of our children and their families  are visited either in their homes or at local health centres. This reduces on the transport costs for families living deep in the village and already facing financial hardship and makes our services more easily accessible to a larger number of families.

Our community outreach services mean that we are able to support more children with disabilities to reach their full potential and have a positive impact on more families and communities.

Our vehicles are essential in enabling us to provide these services. We currently have 1 car (and driver) and 1 motorbike. We are currently in urgent need of a second car and driver; this would enable us to expand our services and further increase our accessibility and impact by 60%.

This year 32% of our children have been seen as part of our health centre outreach programme. That is 1130 children seen on outreach visits so far this year!  We currently visit 11 local health centres across the district. Outreaches enable us to see many children who live local to the health centre and makes for an effective use of our time and resources. We work hard to maximise our impact during our outreaches; we take a several members of our therapy team (physiotherapists, occupational Therapists, speech therapists and our orthopaedic officer) to ensure we meet the diverse needs of the children we see.  During our outreaches, the families also get to meet and share experiences which gives rise to peer support and a sense of growing hope and optimism.   

A further 25% of children and families have been seen at home as part of our home visit programme. This is 880 home visits conducted this year to date! We group our children for home visits into clusters, so we go out for a whole morning or afternoon and see several children who live in 1 geographical area. Home visits enable us to meet more of the family and educate them about the child’s condition and how to support their development. Our physiotherapists can work on positioning in the home environment and where appropriate building parallel cars to help develop standing and walking. Our occupational therapists can practically work on developing independence in personal care, feeding and other activities at home. Our speech therapists can develop custom made communication boards using photos of items used at home.

Currently we limit the frequency of home visits and outreaches are every 2-4 weeks because of how busy our vehicles are! A second car would mean that we could reach more health centres as part of our outreach programme and also visit the existing health centres more regularly. It would also enable us to see more children on home visits and do more regular home visits to those we already see. Increasing the frequency of the services we offer will enable us to have a greater impact on the children’s development.

The area we cover is large and very rural. The average distance to our outreaches is 61 kilometres and the average distance for home visits is 38 kilometres. As you can imagine our vehicles are in constant use, often with discussion and debates in the office about where the car is going to and who needs it most!  Our staff team has expanded greatly in the last year; meaning we can see many more children but are often limited by the availability of a suitable vehicle. The majority of our journeys are on dirt roads, which during the 2 long rainy seasons (each lasting 2-3 months) can become very muddy, slippy and difficult to pass and make journeys on the motorcycle difficult due to the risk of getting a very cold and wet.

Another wonderful opportunity that a second car would give us is to enable us to pick up children from their homes and bring them in to access the centre and our new hydrotherapy pool and give options for more intensive therapy sessions at the centre with access to a wider range of therapeutic equipment and toys. 

This is one of our main rural roads
This is one of our main rural roads
Impassable roads in the rainy season
Impassable roads in the rainy season
Our essential piece of equipment
Our essential piece of equipment

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