In Juba, South Sudan, many more families are taking home healthy babies following changes at a local hospital over the past 18 months.

When mission partner Nicci Maxwell arrived in Juba in mid-2024, the mortality rate on the neonatal ward at Al Sabbah Children’s Hospital was at 15 per cent, meaning up to 35 families each month were grieving the loss of a newborn baby.

A paediatrician with a particular interest in newborns, Nicci was determined to change this, and senior management at the hospital was committed to supporting any progress that could be made.

Nicci has been grateful to work with a core group of nursing staff dedicated to the mothers and babies they care for.

Together, during the 18 months since Nicci arrived, staff at the hospital have improved overall cleanliness and facilities, even adding a high dependency unit to better support the sickest babies.

As a result of their hard work, the mortality rate on the neonatal ward at Al Sabbah hospital has dropped to just below five per cent at the time of writing.

Where 18 months ago, on average 35 families a month were grieving the loss of a child, that number has now dropped to 12. And in Nicci’s words, “There is so much more to do!” 

Nicci supports and trains local staff alongside caring for babies and children at Al Sabbah Children’s Hospital and in the local refugee community.

Wanting to improve paediatric care more widely as well as locally, together with colleagues from Al Sabbah and representatives of the WHO, Nicci is involved in the production of a Paediatric Pocketbook.

This will be an accessible guide to the important basics of paediatric and newborn care for health workers across the whole of South Sudan. This exciting development will hopefully benefit children all over the country.

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Church Mission Society has announced its backing for the UK Government’s Global Charter on Children’s Care Reform.

At its core the Charter calls for the rights of a child to a family and the progressive ending of the institutionalisation of children in favour of family-based care models like fostering. Church Mission Society joins UNICEF, Tearfund Ireland, World Vision and the Wonder Foundation in backing the Charter which in total has received support from organisations in 32 countries for its campaign.

This visionary initiative lays out a groundbreaking framework to transform the lives of children globally so that all children are cared for in families, free from violence, exploitation and other harmful practices. Inspired by the then Foreign Secretary, the Rt Hon David Lammy MP, the Charter calls on governments, civil society, faith groups and individuals with lived experience of care systems to join with world leaders to harnesses decades of international progress to ensure all children can grow up in a safe, nurturing and loving family environment.

Church Mission Society is an experienced operator in this field and supports mission partners like Elise and Jon Fletcher who live in Khlong Toei, Bangkok’s biggest slum community. They said, “Poverty is the biggest cause of children ending up in orphanages in Thailand and we work with the Thai government advocating for reform of the care system. Our aim is that every child in Thailand can grow up in a safe and nurturing family.”

Collectively, the vision of the signatories and supporters of the Charter is to strengthen families and prevent unnecessary separation, ensure safe, family-based alternative care and end the use of institutions for children around the world. Industry experts, academics, civil society groups, UNICEF, the UN Special Representative on Violence against Children and young people with lived experience of living in care have all contributed to bringing the Charter to life and turning the vision into reality.

The Charter urges world leaders to act together to uphold the UN Convention on the Rights of the Child and the UN Convention on the Rights of Persons with Disabilities, invest in families, children, care leavers, and inclusive services, and end violence against children and harmful practices like orphanage tourism with the aim of delivering lasting change for future generations.

Andy Roberts, CEO of CMS, said: “Every child deserves the best start in life within caring families and communities, but globally, there are over five million children living in institutions which harm their short-term and long-term development. The majority of children living in institutions are not orphans – they are there due to poverty, lack of services and other solvable factors. Care reform is an investment in human capital and national growth as well as being more effective and cost-efficient than using institutions.”

Prior to becoming Director of Mission and more latterly CEO of CMS, Andy Roberts was co-founder of Revive International, a pioneering charity providing a home and protection for abused and vulnerable girls in Olinda, north-east Brazil. When the charity was given the green light to launch a ground-breaking fostering service, Roberts said, “From the moment we set up ReVive, our vision has been of a day when we could close down our children’s shelter homes because children were being cared for within a strong, quality, fostering service. We strongly believe that children should be brought up in families, where their hope can be restored and they can look forward to a future free from abuse inside a loving, caring family.”

Andy concluded: “As a global community, it is our collective responsibility to ensure that no child is left behind and that every child has the opportunity to thrive in a safe and supportive environment. CMS pledges its full support to the UK Government’s Global Charter on Children’s Care Reform and commits to working alongside other stakeholders to make these principles a reality to create a brighter, safer, and more equitable future for children around the world.”

ENDS

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Three days into the forest from Goma in south east DRC, is Walikale. Recently mission partner Martin Gordon became the first bishop to visit in 30 years. He was stunned at what he found.

by Rt Rev Martin Gordon, Bishop of Goma

A few weeks ago, we took a trip which was undoubtedly one of the highlights of my time leading the Diocese of Goma. I took a team of diocesan heads of department and Kenyan evangelists from Anglican Missions in Africa to visit our missionary archdeaconry of Walikale, in the forest north west of Goma. This is the first time a bishop has visited in the 30 years since the first church was opened in there in 1994. 

It is the only other archdeaconry outside of Goma it is safe to visit for now. It has a population of 700,000 but is the same size as Belgium and covers half of the diocese. To get there we needed to take a boat across lake Kivu and then fly over the forest to land in an airstrip belonging to a tin mine. Going by motorbike is possible but can take up to three days. The only clergy there is the archdeacon, who retired during our visit.

A snapshot of Walikale

Education is poor and boys leave school early to search for their fortune in the plethora of tin, gold and diamond mines. Apart from one industrial tin mine, they are small-scale, artisanal mines and working conditions are poor. In the towns and villages men are in a minority for much of the time, and when they return home it is rarely with any money. Minerals are everywhere and many believe that the land they own will one day make them a fortune.

Marriage and faithfulness in relationships is rare. Everywhere you go there are crowds of children and many women will have more than 10. Often girls are pregnant soon after puberty and it is not uncommon for girls to have had two or three children by the age of 16. In some families this is encouraged so that when the bride price is given, the family can also demand a fine for underaged pregnancy. Whilst in Walikale we conducted only the second and third Anglican marriages in 30 years, the first being last year. It was a significant focus of our teaching and many more are preparing church weddings in the coming year.

The visit

Other than to encourage the believers, the main purpose of our visit was for a week of teaching on growing healthy churches, and to evangelise. At the end of the week over 500 people had given their lives to Christ, more than 100 had been baptised and 200 confirmed. At the closing service we commissioned 98 evangelists and nine leaders for each of our fledgling churches. None of them are yet ordained, but we continue to prioritise Walikale in our training of men and women for ministry.

And as one local chief told us Walikale is still virgin territory for the Gospel. This was evidenced by the number who weren’t baptised, in contrast to the rest of the diocese. The population is open to Jesus and keen to hear about what he can do for them. They are asking for the Anglican Church to invest spiritually and materially in Walikale. 

With the generous support of a partner, we were able to secure sizeable land concessions and land documents for each of our churches, with possibilities for income generation in each place through agriculture, livestock or fish to help with church growth. Main photo is exploring the 2 hectares in Walikale Centre.

The future of Walikale

There is an exciting opportunity to church-plant across Walikale and to focus on education and development as part of a wholistic mission to bring lasting Gospel transformation. Land is relatively cheap for now, but once the road to Goma is built (and the money has been there in the past and mishandled) Walikale will open up, grow and develop very quickly. 

It seems as if God has opened a door for ministry in Walikale. As such it has become a mission priority for the diocese, especially as many other areas are out of bounds for the moment. Our vision is to continue with church-planting, development, training and education, with a long-term vision for Walikale to become its own diocese. 

Pray together

• for the nine newly commissioned church leaders – for encouragement and faithfulness
• for possibilities to buy more land for church-planting in strategic locations 
• for wisdom on where to build and open schools
• for discernment in choosing men and women for theological training 

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Five year old Matthew (name changed) has become the first child to benefit from the pioneering fostering service now being offered by ReVive, a charity set up by Church Mission Society mission partners in Brazil.

ReVive provides homes and protection for abused and vulnerable girls in Olinda, a city of around 400,000 people in the north-east of the country. The new fostering service, which was officially given the green light to proceed by the authorities in November 2021, is the fulfilment of ReVive’s vision to see vulnerable children cared for within a strong, high-quality, fostering service.

Tony Lewry, ReVive’s fostering coordinator said: “We are so incredibly excited to be launching our fostering service here in Olinda! We successfully started our foster parent training at the beginning of June and now, six months later, we can begin placing children in loving homes. There are so many vulnerable children in our city who desperately need a safe place to live. Our service will not only offer a safe place but a family environment which will create the atmosphere each child needs to overcome the challenges life has thrown at them.”

Initially, ReVive aim to be catering for children up to the age of six, but with experience the team hope they can increase the scope of the service they can offer. Lewry said, “Our hope is that by 2030 fostering is the primary form of full-time child-care in the city.”

Andy Roberts, Director of International Mission at Church Mission Society and co-founder of Revive, said: “Now seeing Matthew living in a safe home with loving parents justifies the many frustrations, long meetings and bureaucracy that at times we thought would defeat us.”

Currently fewer than five per cent of children in the care system in Brazil are cared for in foster families. However, the ReVive team were faced with multiple issues on the way to this landmark decision. Lewry explains, “Public awareness of fostering is low and politically, passing fostering legislation is understandably seen as a low priority.”

Revive now runs two homes and has supported over 75 girls by providing accommodation, protection and education, taking them out of danger and helping them to rebuild their young lives.

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Annabel is an eight-year-old whose sibling sadly will die. Her family have made the very brave decision to be open and honest with Annabel about what is happening. I believe they have made the right choice that will ultimately help her through the grief to come, but it does come with a cost of comforting her when she has sad moments.

by Ruth Radley

When we work with children, we never force them to share their feelings – rather, we will drop a few things into conversation, which the child may choose to pick up on, and offer a choice of activities.

A few weeks ago we made a memory box together. We talked about different things that could be put inside it, so that when her sibling is no longer with us, Annabel can look at these things to remember happy times. She absolutely loved making it, and was able to share it with her mum. Although Annabel declined to share what she had put in it on my next visit, the nurse who had referred her told me that Annabel had excitedly shown it to her.

The invisible string

On my next visit, I took a copy of the book The Invisible String, written for children to help them with grief. The idea running through the book is that we all have an invisible string connecting us to those we love, wherever they may be.

I also took a few activities, one of which was making a kite. Annabel loved the idea of making a kite, and we had fun while she decorated the fabric and attached the tail. She dragged me outside to try to fly it, but there just wasn’t enough wind! We eventually accepted defeat and came inside to do another activity.

As Annabel sculpted some clay, I asked her how she would make sure that when there was a lot of wind, the kite wouldn’t fly away. Without hesitation she said she would hold on tight to the string. I paused, then told her that reminded me of a book about an invisible string. Annabel didn’t want me to read the story with her, but was happy for me to tell her about it.

She shared with me that she knew what invisible meant, because Harry Potter had an invisible cloak! I explained how the story talks about an invisible string connecting us to those we love. Annabel IMMEDIATELY linked this to people in heaven, and told me names of other family members who had already died. In fact, I had to say it links us to people still on earth too, and we talked about her mummy.

I asked if there was anyone else, and she said her sibling’s name – we were able to talk about how even when her sibling has gone to heaven, there will still be this invisible string of love connecting them. It was really a very special afternoon. I feel so privileged to be able to spend this time with her.

Indeed, every time I spend time with a sibling, I honestly feel that the fact someone is coming to see them is in itself healing, since they are so used to medical professionals coming to see their sick sibling.

Tough questions

For the last three years I have also lectured at Cliff College for their BA students in youth and children’s pathways. It’s part of an amazing week of tackling many deep and difficult issues that face children and young people. My sessions cover working with sick and dying children and working with bereaved children and young people.

I share this with you because I pose a question to the students towards the end: “In your usual programmes, how do you incorporate exploration and discussions about death, so that when a child/young person in your care experiences it, they are already familiar with the concept and not afraid to ask questions or talk about it?”

It may be relatively easy to presume that no child in your circle will be affected by grief, but research at York University recently revealed:

“… the number of children in England with life-limiting or life-threatening conditions increased to 86,625 in 2017/2018 compared to 32,975 in 2001/2002.”

Child Bereavement UK states:

• A parent of children under 18 dies every 22 minutes in the UK; around 23,600 a year. This equates to around 111 children being bereaved of a parent every day.
• 1 in 29 5–16 year olds has been bereaved of a parent or sibling – that’s a child in every average class.

These sobering reports help us to see that children in our vicinities may be being affected by the death of a loved one much more than we realise.

Take action

If you are able to have these discussions with the children and youth workers at your church and other organisations, it may help prepare them to be there for a child or young person when they most need it.

As ever, thank you again for your support which enables me to continue to do this. Please do keep praying for funding for me to continue.

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Mission with children and young people with additional needs and their families

by Mark Arnold

One in five of the 13 million children and young people in the UK have additional needs of some kind.¹

That’s approximately 2.5 million children/young people, yet even before the COVID-19 pandemic at best only 10 per cent of them had any kind of contact with church. More recently, the #LeftInLockdown research carried out in 2021 by the Disabled Children’s Partnership highlighted that over 90 per cent of disabled children still found themselves socially isolated despite lockdown easing.² That includes isolation from church.

Many children and young people with additional needs, and their families, have found the last couple of years overwhelmingly difficult, as much of the vital support that they had relied on has been cut back or stopped altogether. I’m co-founder of the Additional Needs Alliance and over the course of the pandemic we asked families to tell us how it had been going for them. Words like “horrendous”, “exhausting”, “anxious” and “lonely” were common.

Practical and missional

So, what does being missional, reaching out to children and young people with additional needs and their families, look like for us as church in 2022? How can we respond to the needs of these struggling families? Before we can even think about supporting them spiritually, we need to be thinking about how we can support them practically – we need to show them the gospel before we can tell them the gospel.

We could offer to do some shopping for them or pick up a prescription. We could arrange to deliver a meal, or take a cake around as a welcome treat. We could create a small team to provide occasional respite support for a family, or accompany them to some of the many, often intimidating, meetings that they attend. Perhaps transport is an issue; we could help there too. Most of all, we need to keep in contact, making sure that no family feels forgotten. As a parent who responded to the Additional Needs Alliance survey put it:

Notice us. We will always cope and be “OK” because we don’t have any other choice. See beyond the bravado and offer us something to make sure we know you’re taking us with you.

And as we think about those practical ways to provide support, we need to be aware that many families will have had years of rejection, exclusion, discrimination and negativity, and that might have been from the church, too. I’ve heard too many stories of children and their families being told that they are no longer welcome as their child might be “a health and safety risk”, or that “this isn’t a special needs church”, or even a disabled child, a child for goodness’ sake, who was told by their Sunday school teacher, “Don’t come back.”

As always, we can learn from the examples that Jesus gave us: how through his encounters with people he showed us how to be loving and inclusive of all, creating belonging and community for everyone, leaving no one out. Children and young people mattered to Jesus during his ministry on earth; he healed them, he raised them from the dead, he rebuked anyone who turned them away and he didn’t discriminate against any of them. Neither should we.

Bartimaeus (Mark 10:46–52)

A favourite Bible story of mine is when Jesus met Bartimaeus, a man who was blind and who begged on the road near Jericho. Jesus had been going around teaching, preaching and healing people, and a large crowd was travelling with him. As he passed by where Bartimaeus was begging, Bartimaeus heard the commotion and asked what was going on. Someone told him that it was Jesus and his followers, and so Bartimaeus shouted out, “Jesus, Son of David, have mercy on me!”³ What happened to Bartimaeus next is what can commonly happen to children, young people or adults with additional needs; Bartimaeus was told to be quiet, to keep out of the way, to not be a bother. But the more they tried to stop him, the more Bartimaeus kept crying out, “Jesus, Son of David, have mercy on me!” Jesus heard him and asked Bartimaeus to come to him.

You can imagine the scene: Bartimaeus is in front of Jesus; a large crowd is gathered around jostling for position to see what happens. The expectation is reaching fever pitch among the people who have heard about the miracles that Jesus has been performing. Then Jesus does something unexpected, something that takes the crowd by surprise, something that teaches us about how we should be with someone who has additional needs. Jesus asks Bartimaeus a question, “What would you have me do for you?”⁴

The crowd must have been incredulous; it’s Bartimaeus, he’s blind – you’ve been going around healing people, so what do you think he wants from you?! Now I’m sure that Jesus, as a human being, knew that Bartimaeus was blind; and I’m sure that as God made flesh, he knew what Bartimaeus wanted from him, but Jesus didn’t assume. Jesus didn’t decide on Bartimaeus’ behalf; he gave Bartimaeus the dignity and respect to allow him to ask for himself, for his own voice to be heard. Bartimaeus said, “I want to see,” and so Jesus restored his sight; but in Jesus’ encounter with Bartimaeus – the way he was with him, the question he asked him – he teaches us some very valuable lessons, 2,000 years later.

Ask

A starting point for missionally reaching out to families with children and young people with additional needs is to work “with” them and not “to” them. So often, children and young people, and their families, can have inclusion “done unto” them poorly by well-meaning people who could have done things much better if only they had asked. By using the simple ASK approach below, the input of children and young people with additional needs, and their families, can help us know the best way to reach and support them. It recognises that helpful phrase, “Nothing about us without us.”

A. Ask – Simply ask. Get in touch with families of children and young people with additional needs and ask them to help you to get this right in your church. Tell them that you really value their input and that together you can make a difference. You might have to apologise if your church hasn’t sought their input before or has ignored their previous suggestions. Ask them what barriers they have experienced – there will probably be some you haven’t thought of – and agree to work on removing them together. Other adults with additional needs or disabilities in your church might provide useful pointers here too.

S. Seek – What solutions can they think of? Are there ideas that have been helpful for them/their child or young person in other settings, such as school, home or other clubs, that could be adapted to work in church? We don’t have to invent the wheel, there is likely to be a perfectly good one rolling along elsewhere in a child’s life!

K. Know – Learn from the families and from the children and young people themselves. They know most about their/ their child’s best ways of experiencing and navigating a safe and successful way through the world and will have a wealth of knowledge to share that can help us in our church context; let them be your guide!

The language we use when journeying with families or the young people themselves is vitally important too. Do we include a box on a form for something that asks, “Does your child have any special needs?” and then be surprised when that box is left blank and yet a child subsequently arrives who needs support? Think about those families that have been told that their child isn’t welcome at church anymore; how likely are they to declare their child’s additional needs again?

Ask families how their child best likes to be supported and helped, what they enjoy doing, what positive things people say about them; these are all questions that are much more likely to help us get to know a child or young person better, unlock useful and helpful information, and be great conversation starters. A useful tool to help with this is a “one-page profile” and sample templates for these can be found in the resources area of the Sheffkids website: www.sheffkids.co.uk. I suggest you try using these with all of the children and young people that you journey with; you will find out more about them than you might think!

So, as we reach out into our community, looking to minister and be missional with children and young people with additional needs and their families, practically showing them the gospel of love, let’s recognise how difficult the last couple of years in particular have been for them, let’s apologise for when we’ve got it wrong, let’s ask them how we can help, and let’s journey together with them to support them practically and spiritually in the future.

Resources

If you would like a study pack to help you as a church to journey with this some more, including video resources and 10 study questions to explore, to help you to create a church where everyone belongs, you’ll find everything you need here: https://theadditionalneedsblogfather.com/2019/07/18/10-ways-to-belong/

About the author

Mark Arnold is the additional needs ministry director at leading national Christian children’s and youth organisation Urban Saints and is co-founder of the Additional Needs Alliance, a vibrant and fast-growing online community. He is an enthusiastic national and international advocate and ally for children and young people with additional needs. Mark blogs as the national award-winning The Additional Needs Blogfather, and is father to James, who is autistic and also has learning difficulties and epilepsy. Mark is on Twitter at @Mark_J_Arnold

More from this issue

Notes

1 Department for Education, “Reforms for children with SEN and disabilities come into effect,” GOV.UK, 1 September 2014, accessed 4 October 2021, https://www.gov.uk/government/news/reforms-for-children-with-sen-and-disabilities-come-into-effect.
2 Disabled Children’s Partnership, #LeftInLockdown – Parent carers’ experiences of lockdown,” 2021, accessed 4 October 2021, https://disabledchildrenspartnership.org.uk/wp-content/uploads/2020/06/LeftInLockdown-Parent-carers’-experiences-of-lockdown-June-2020.pdf. Further information in https://disabledchildrenspartnership.org.uk/wp-content/uploads/2021/03/The-Loneliest-Lockdown.pdf.
3 Mark 10:47 (NIV).
4 Mark 10:51 (RGT)

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