Innovation Profile: Cohere’s work with children with disabilities in Uganda

We are profiling the innovations of our three HEA Stage 3 teams. Here we look at a refugee-led approach to supporting children with disabilities.

Written by Sophie Lashford

[Note: Xavier Project has become Cohere in an exciting new step that sees the team join forces with the NGO Urban Refugees to form one organisation committed to supporting refugee-led solutions that transform communities. Find out more here.]

A group of parents are sitting in a settlement in northern Uganda. Each of them has a child with a disability and they are sharing their common experiences. “I don’t know why my child is like this, no one has ever explained it to me”, says a young mother holding her three-year-old. A woman sitting next to her chimes in, “I was once sent to the hospital outside the settlement and they told me that my son was just lame.” Other refugee parents start nodding in agreement, they too have similar stories. Almost none of the parents have a diagnosis or treatment plan for their child. None of them has information on what can be done to improve their child’s condition or even what can help avoid deterioration.

In refugee settlements like theirs, the need across the board is great, support systems are under strain and the funding is insufficient. Children with disabilities often get overlooked in trying to meet the basic needs of so many. This situation is worsened by stigma and discrimination against people with disabilities. Many families do not dare admit they have children with a disability, hiding away and avoiding going out into the community because they are worried that people will be scared or reject them. All of this isolates families further and prevents them from accessing services that could greatly improve their quality of life. Parents and caregivers of children with disabilities lack awareness of how to provide their children with adequate care and support. Few of these children have any access to learning at all. This is not just because of the stigma; teachers in refugee-hosting areas in Uganda lack structured training on how to work with children with disabilities. Schools rarely have disability-friendly access or resources to teach them.

Making the invisible refugee child visible

Cohere is a pioneering refugee-support organisation working since 2008 to empower refugee-led organisations to serve their communities. “We encourage the community through refugee-led organisations to come forward and tell us, what’s next? What is it that you need? This project started based on feedback from the community that highlighted the invisibility of the children with disabilities,” explained Katarina Fandlova, the Programme Lead. “Implementing partners delivering education in Uganda also reported this to us. They are aware of the facts but they don’t have the capacity to support specific groups of children with additional needs.”

The programme began in 2020 and had a boost of funding through Comic Relief & UKaid All In, All Learning! Programme, then it was selected as one of the HEA innovation programmes to receive mentoring, capacity building and funding on its scaling journey. Currently working in 3 sites with more than 400 primary and pre-primary aged children, the team is ambitious to expand to more refugee-hosting locations in 2022. They aim to scale up so that refugee leaders are supporting over 6,000 refugee children with disabilities by the end of 2024.

The project is a true partnership between refugee-led organisations, who act as outreach teams, and Cohere-employed location and disability specialists, who all work together to support children with disabilities to access education and improve their daily life. The first difficulty is identifying these families, who are often withdrawn from other parts of society. But the team’s combination of community leaders, who have greater access to their community, and an outreach team, who are equipped to undertake community mapping, proves powerful in overcoming this and meeting families in need.

Planning to thrive

Once identified, the team will visit each family to visually assess the child, building a personalised care plan for them. These plans are a collaborative effort. An embedded community outreach team, who come from the partner refugee-led organisation in each location, are the point of contact for families. They work together with a roaming specialist team employed by Cohere, which includes an occupational therapist, special needs teacher and physiotherapist. This specialist team moves between settlements and camps, crafts the plans for children, gives training and can be brought back in by the outreach teams to provide additional technical support for families if needed.

The personalised care plans detail the next steps for each child with a disability, thoughtfully tailored to each child. The specialists determine what key challenges the child has and what can be done to improve them. They do assess the child with age-related milestones but this is done by considering the nature and severity of their condition. The plan covers areas such as physical and social-emotional well-being, learning and activities of daily living. Concrete measures include what assistive devices and learning materials children need and how they will be provided for them, physiotherapy exercises and training for parents. Training is a central component. Parents and caregivers are encouraged to point out what they think the priorities are for their child.

“The more the parents learn, the more strategies and tools they have for their children, the better chances that the child will thrive even when there is no specialist around. The settlements usually have no or limited services of this kind or they are really far away. It’s part of a wider community approach — the more that the community knows, the more chances they have to support their children with disabilities,” says Katarina Fandlova.

Caregivers are trained by the disability specialists to deepen their understanding of the condition; its causes, and symptoms, as well as what this means for their child. They emphasise the potential of a child as well as their challenges. Through the training, the caregivers come to understand what their role is in managing their child’s condition. It is a process of deepening understanding, acceptance and learning how to support and advocate for their child. They are also equipped with strategies to support their children. For example, some children benefit from stretching or positioning exercises to improve their mobility. Others need help to learn how to dress or bathe themselves so that they can gain independence in their daily life. Parents eagerly take in this information; most of them have never had this opportunity before.

Once the plans are in place and specialists have provided training for parents, it is the refugee-led community outreach teams who follow up on the implementation of the plans. They make regular visits to the families in their location to provide them with follow up support and encourage them to incorporate what they’ve learned into their daily routines. They facilitate getting them materials and devices. They listen to families if there are additional needs and challenges, consulting with the specialist team or helping make referrals to other services.

Starting with schools

The project started during the pandemic whilst schools in Uganda have all been closed and so the teams are still early on in their work directly with schools to introduce disability-friendly approaches and facilitate enrolment. Instead, the work has focussed on building foundational skills for pre-school and primary aged children that Cohere believes will improve their well-being and enable some of these children to go to school. There is learning material provided for home-based support, including educational toys, counting boards or building blocks. Caregiver training includes simple play activities to improve gripping, ways to engage children in household activities to improve their socialisation and using signs or nonverbal tools to communicate needs. It teaches parents how to provide stimulating and nurturing environments by using local materials to make their learning and play materials. The methodology is an evolving area. It incorporates a holistic approach to the wellbeing of the child alongside principles of inclusive pedagogy. It is also tailored by the family circumstances and resources and the local context.

Whilst some specific interventions are education-focused Cohere sees the whole support package as enabling access to learning. “Accessing learning is also having access to other types of support and services such as physiotherapy because if a child with cerebral palsy, let’s say, has stiff joints in their hand, the child most likely won’t be able to pick up a pen and write, and that is going to lower the chances that they will go to school,” says Fandlova.

They hope once schools have re-opened that they will work with schools in several key ways; to provide support within the schools and through the teachers by growing special needs education skills and the schools’ accessibility. This includes providing adapted chairs or standing frames, adapted toilets, ramps, and introducing disability-friendly learning approaches in schools.

The outreach teams are also tackling the stigma that keeps children with disabilities out of school. They use their strategic position as refugee-led organisations to organise sensitisation activities with the wider community and local churches aimed at raising awareness and reducing the marginalisation of children with disabilities.

A refugee-led model

So far the project has provided support to more than 400 families caring for children with disabilities. All of this work hinges on Cohere’s partnerships with refugee-led organisations (RLOS), with a partner in each of the four current project locations. They are employed as the community outreach teams, coordinating activities and working closely with families. By leading the implementation in these ways, they ensure the support provided to children with disabilities in their communities is relevant to the local context. They play a central role in their communities and understand their needs because they are part of them. Cohere sees them as the best candidates to ensure that the support for the families caring for children with disabilities will be sustained long-term.

Most of the RLOs on this project were already involved in education or youth issues in some way. For example, Tomorrow Vijana runs a learning hub with a focus on breaking down language barriers through English teaching. Bondeko runs a whole range of services for their community, including ECD programs. I CAN South Sudan works with unaccompanied children and children with disabilities. Finally, Yeta is a youth-run livelihoods training and entrepreneurship organisation. But whatever their original mission, they have jumped into this project as a need they recognise for the community around them.

“The interesting thing is that many of the RLOs we work with are quite flexible because they are the first responders to their communities’ needs. You could see this clearly during the pandemic, especially at the beginning, when a lot of international organisations had to close down interventions for a while and our RLOs filled in many of the gaps. They have quite a good ability to just adapt to whatever their communities’ needs are,” explains Fandlova.

Cohere provides the refugee-led organisations with guidance and capacity strengthening, enabling them to assess themselves, identify the gaps and then receive support to meet their communities’ needs. It is a gradual process in which Cohere works towards helping the RLOs to increase their leadership in the delivery of the support to children with disabilities in their communities. They strengthen the RLO´s capacity to grow professionally, improve their fundraising, take on and manage projects including projects supporting access to learning for children with disabilities, prove impact, and lead advocacy and decision-making processes concerning their communities.

This is a model that Cohere uses across its programming. A foundational part of this support is the award-winning “Capacity Strengthening and Sharing” course, which Cohere has delivered to over 26 organisations across all its projects in 2021. The support focuses on key areas such as governance, financial management, safeguarding, MEAL, advocacy, organisational management, and child protection for those working with children.

Their partnership model is an evolving area. The diversity in organisations is significant and the partnership model needs to be able to flex for this. Some RLOs have an entire organisation structure with a leadership team, a chair and a board of trustees and have impressive networks, depending on local laws, even formally employing their teams.

For others, they are at a much earlier stage; Cohere also supports informal groups of community leaders, village and zonal leaders and volunteers. “In one settlement in Uganda at the start of our engagement there, it was only a group of volunteers. They were self-organized and quite an informal group. They were giving English classes to children under a tree, and it was their self-initiative. One of our colleagues at the time got closer with them and they said they wanted to start an organisation. So there are cases where we would actually be part of the creation process of a more formal structure to increase their visibility and professional profile which would allow them to be recognized as an organization that can take on funded projects,” explains Fandlova.

Cohere has worked hard over the past few years to professionalise its way of partnering with refugee-led organisations, formalising it in terms of risk assessment and risk management and beginning to centralise some of the procedures and mechanisms to maximise efficiency. “But every partnership is different because every RLO is different. We make sure we make room for an individualised approach in our model,” caveats Fandlova.

REFRAME-ing partnerships

They are at a turning point in these partnerships. Whilst in the past, they centred around working with refugee-led organisations to deliver a programme that Cohere had received funding for, they are starting to be led by the work the RLOs want to do in their communities. The biggest challenge they see for RLOs at all stages of organisational capacity is difficulty securing funding. To counter that, Cohere is working on several fronts. They are active members of Charter4Change, a network that brings together INGOs and national and local actors in Uganda to promote the localisation agenda. They have also teamed up with their partners to build a web platform, REFRAME, that highlights profiles of RLOs in order to broker contact with donors. Cohere sees this platform as a networking opportunity to build direct funding and advocacy opportunities for RLOs.

Finally, they offer direct funding to refugee-led organisations and try to connect them directly with donors. Through managing and coordinating their own projects, RLOs learn through practice the skill and organisational capacity. Cohere guides them through this process. This enables the RLOs to develop and deliver a variety of programmes that can respond to their communities needs as they change.

Cohere sees this as a sustainable way to run projects in these areas and has identified a growing recognition of the refugee-led approach from other actors. As refugee organisations learn, build technical skills and a portfolio of successfully implemented projects, it becomes easier for them to then sustain the support even when the project ends.

“With the help of HEA, we will be able to take the community leadership even further so that the RLOs are better prepared to lead on the support for children with disabilities within their communities,” shares Fandlova. “At the same time, HEA support will enable us to improve our monitoring and evaluation practises as well as those of the RLO partners we are working with so they can build a strong evidence base to advocate for community-led solutions. Importantly, HEA support will also enable us to work on the refinement, planning and realisation of our scaling ambitions.”