The Summer issue: Family Kidz to Adultz Knowledge to Action
Featuring:
• Fostering Together: Embracing children with disabilities
• The delights and demands of caring for a disabled grandchild
• Get your game on: Inclusive games for the whole family
• Sibs: The UK charity dedicated to the siblings of disabled children and adults
• Family Fund: Support services for low income families
• Chailey Heritage Foundation: Supporting families through transition
• What’s on: Paralympics special
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Welcome! to our latest issue
Families are wonderfully diverse and unique, often bringing love, support, and joy into our lives.
In this edition, we want to celebrate the many different roles within families, from parents and foster parents to grandparents and siblings.
We also highlight the support available, such as funding opportunities, online resources, and parent networks.
Plus, our Family Fun Month activity pages feature inclusive games that everyone can enjoy, and our What’s On section is full of exciting summer events, including Paralympic sports, inclusive exhibitions, and accessible shows.
Happy reading!
If you would like to talk to us about
Fostering Together: A foster care provider specialising in complex disability care
Fostering Together are a specialist community for foster carers who share a common experience of being carers and parents for children with complex disabilities in the care system.
For KtoA Magazine, the team from Fostering Together delve into their specialist service and support for those who want to become foster carers.
Fostering Together is a community created especially for families who foster children with complex disabilities. Since starting up in 2020, we have supported families of young people with wide-ranging conditions, including physical disabilities, learning needs, communication, or sensory impairments, as well as people who are on the autistic spectrum. We also support some amazing families who foster children with life-limiting conditions requiring palliative care - enabling children to live within family life when the only other option may be a hospital bed or long-term hospice care. Primarily we support children long-term and set up permanent fostering placements, but we can also support children to reunite with biological family or extended family members. At the moment we support families across the South East, East Anglia, and the Midlands, and our community is constantly growing as we meet like-minded passionate families who have been able to foster.
The community is multifaceted, including those who foster children through us, foster carers who provide short stays and breaks, sessional support workers employed to provide direct sessional support to families, and individuals with nursing experience. Those with nursing experience provide mentorship to carers about health, medications, and matters to raise with the health professionals in the wider team around the child.
We meet many foster carers who are registered with other fostering services but are feeling isolated as carers for young people who have additional needs. Therefore, we know how valuable being able to speak to someone else with a shared experience can be.
We use this collective shared experience to provide tailored and bespoke packages of support around each child and family. This includes packages for planned stays for children with other trained foster families,
sessional support with local support workers, bespoke and medical-professional-led training for specific medical procedural care, and much more. Families benefit from regular support groups, including meet-ups whilst children are in school, to discuss experiences and shared learning.
Who can foster children with disabilities?
‘‘The main requirements to become a foster carer are often stated as a spare room at home and the time, love, and drive to provide a safe, nurturing home to a child in need.’’
We view prior experience of supporting, caring for, or growing up alongside individuals with disabilities as being an almost essential aspect of the role of fostering children with disabilities - though we are very aware that experience can be evident in many different ways. Navigating services to find accessible options for young people who have disabilities
can be overwhelming for new parents and carers. The role of a foster carer includes maintaining diaries of care, various fostering paperwork, additional meetings, ongoing safeguarding and planning, regular social work supervision, and more.
What advice do you have for foster carers who are considering fostering a child with disabilities?
Please do talk to us and/or other fostering providers. There are so many children that require either short-term or long-term care to keep them safe, that no matter who you end up deciding to register with, you will hopefully be able to have an impact. When you do, we always advise asking to speak to someone within that services’ community – we always think that a provider is best represented by its members, and they will give you a comprehensive idea of what being a foster carer is really like!
If you are unsure of whether it might be for you it is always worth the conversation. Many families may also start by providing some short breaks to other local families
first before committing to providing longterm care, but in any case, the fostering community are always going to be able to answer far more of your questions!
As part of our mission to support foster carers, we love attending Kidz to Adultz exhibitions. This allows us to meet so many vibrant, like-minded people who have a drive and passion to create an inclusive, accessible, and equal society for people with disabilities. It is always so encouraging to meet people who tell us that they are foster carers themselves and to see the wideranging impact. We are set to attend Kidz to Adultz Middle on Thursday 13th March 2025 in Coventry.
Find out more about us at www.fosteringtogether.co.uk
The delights and demands of caring for a disabled grandchild
Support for grandparents from disability charity Contact
National disability charity Contact supports the whole family of children with disabilities. They do this by offering life-changing information, advice and support for families, whatever their child’s disability or medical condition - and this includes support for grandparents.
Anna Bird, CEO of Contact tells KtoA Magazine: “We know that many grandparents play a very important role in their disabled grandchild’s life and that of their parents, providing considerable emotional and practical support particularly at times of crisis.”
To help, Contact has produced an online guide aimed at grandparents which includes tips and advice from other grandparents who have been there, as well as information about legal positions and financial support.
Supporting your disabled grandchild
A grandchild might see you as a person with whom they can have fun, and you have all the pleasure of being with children without the responsibilities of being a parent. Sadly, families with a disabled child are often placed under huge practical, physical, financial and emotional pressures which can have a big impact on the wider family.
As a grandparent, you may find yourself in an unfamiliar and sometimes difficult situation.
We understand how challenging the role of being a grandparent of a disabled child can be. For example, grandparents can sometimes find that the disabled child’s parents, alongside siblings and other relatives, look to you for information and support – and this may happen while you are trying to come to terms with the news that your grandchild has a disability yourself.
Contact’s top tips for supporting your disabled grandchild:
• Treat them as an individual. A child with additional needs has the same need for acceptance, love and attention as any other child.
• Try not to make comparisons. Your grandchild may not be picked for the school football team or reach Grade 7 piano, but they are putting in as much effort. They will gain immeasurably from praise and encouragement.
• Develop a unique relationship. It might be going to a cafe or reading together or learning a skill like swimming. This kind of attention will be a real boost.
Learning about your grandchild’s condition
CEO Anna says: “Contact’s Helpline often hears from grandparents looking for information about their grandchild’s condition. Learning more about this can help you feel empowered and mean you are better able to support the whole family.”
We have an A-Z medical directory with reliable medical information on more than 440 medical conditions including rare disorders, plus contact details for specific UK support groups.
Supporting your grandchild’s parents
When you’re a mum or a dad and you see your children in trouble, you want to reach out and make things better. It’s the same with grandchildren too – but you may find you have less influence as a grandparent. Your role is to be supportive, but at the same time, to not get too involved. This means being a grandparent of a disabled child can sometimes be a difficult balancing act.
“We know that many grandparents play a very important role in their disabled grandchild’s life and that of their parents, providing considerable emotional and practical support particularly at times of crisis.”
Anna Bird, CEO of Contact
Anna continues, saying: “Grandparents also tell us that they can feel isolated and confused, and don’t have the support they need to understand the reasons behind their grandchild’s disability or to manage daily challenges and future situations their family may face. That’s why we published our grandparents guide to help them deal with issues that arise and full of tips, advice and sources of support. Often it may be as simple as just being there and listening and to help soak up the stress and worry the parents are having to deal with.”
Contact’s top tips for supporting your grandchild’s parents:
• Listen to the parents and believe what they tell you about their child.
• Praise and encourage, and not just when things are going well.
• Spend the first five minutes of your visit giving attention to your grandchild’s siblings, and maybe take them out while their parents look after their brother or sister.
• Help in small ways: make a meal, do the shopping or babysit so the parents can take a break or deal with social, health and other services.
• Don’t assume that information about entitlements and rights automatically be given to the parents – do some research.
Find out more about Contact at www.contact.org.uk
Their helpline advisers can support you with any issue about raising a disabled child. You can ring Monday to Friday, 9.30am-5pm on 0808 808 3555.
Gwen and George’s story...
“It came as a shock when Danny was diagnosed with autism at around age three and when his younger brother Sam was born with multiple disabilities. We quickly tried to adopt a supportive role. This was easier when we lived nearer and when both the grandchildren and ourselves were younger. We could help by taking Danny and his sister Rowena out, perhaps to the seaside for a picnic, or take all the children for a local walk. On visits, we were also able to help with gardening, the inevitable mountains of washing and other chores.”
“We’ve always tried to treat the boys as precious individuals with some unique characteristics. More than once, we’ve been caught out by underestimating our grandson Danny’s capabilities and understanding – often to his own advantage! On one outing, one minute he was happily paddling with us at the water’s edge, the next he was swimming out to sea!”
“Being grandparents to two boys with special needs has also led to us broadening our experiences. We have helped at a club for disabled people, completed a Makaton signing course, and been to talks about autism and genetics. All this has helped us come to terms with the situation.”
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Sibs: The only UK charity dedicated to the brothers and sisters of disabled children and adults
Siblings are a valuable and positive part of a family, and often provide friendship and care for their brothers and sisters, while sometimes not receiving the recognition or support that they need.
Sib’s Chief Executive, Clare Kassa, sat down with KtoA Magazine to share how they support the more than two million people who are growing up with, or have grown up with, a disabled brother or sister.
What is it like to be a sibling?
Siblings play a crucial and unique role in the lives of their disabled brothers and sisters. Through this special relationship they provide care, understanding, friendship, companionship and support. However, siblings as a group are often poorly understood and their needs are often overlooked. They face their own challenges too and can struggle to have their needs met.
As one young sibling told us: “My sister is autistic, and she has sensory difficulties. She often has meltdowns and squeals, and people would give us nasty looks that make it even more difficult going in public places by putting us off. It would be amazing if people understand and accept others with additional needs. Not every disability is visible.”
Siblings may experience fiercely conflicting feelings – loyalty versus embarrassment, sadness versus joy, over-protection versus the need to be selfish.
Siblings face challenges at each life stage and may worry about key transition points for both themselves and their brothers and sisters. We recognise that siblings face a range of experiences, and that the sibling relationship can look very different at different stages of life:
• Young siblings – children and young people growing up with a disabled brother or sister often find that life is harder for them than their peers. Many young siblings experience daily challenges at home and at school and can feel like no one understands what life is like for them. Around half of all young carers are providing care for a sibling.
• Young adult siblings may struggle with decisions such as whether to leave home, find a romantic partner, go to university or go into full-time paid work because of the impact of these decisions on their brother or sister’s care. They worry about the future and who will look after their brother or sister when their parents can no longer care for them.
• Siblings in their mid-life are often caring for elderly parents and parentsin-law, looking after their own children and managing a working life – all alongside providing advocacy
“When siblings are well supported, it has a direct impact on the wellbeing of disabled brothers and sisters, as well as the wider family too.”
Clare Kassa, Sib’s Chief Executive
• Older adult siblings may be struggling with their own ageing process and the disabling effects of this, whilst supporting their disabled brother or sister with theirs too. They may be their brother or sister’s only living relative and worry about their mortality more than their peers.
How can Sibs help?
Siblings can become used to prioritising the needs of family members over their own. This can mean that their own health and wellbeing suffers as a result. Many adult siblings tell us they find it hard to manage their emotions at times, in particular feelings of worry, guilt, anger and sadness.
Sibs is the only UK charity dedicated to supporting siblings of disabled people. We provide support for siblings in the following ways:
• YoungSibs is our information hub for young siblings aged seven to seventeen providing information and support for children and young people who are growing up with a disabled brother or sister.
• Information and advice for adult siblings, parents and professionals is available on the Sibs website, twenty-four hours a day.
• We train and support those who run sibling support groups for children and
co-ordinate a network of peer support groups for adult siblings.
• We produce guides for adult siblings on issues surrounding the care and support of their brother/sister, such as future planning and managing care.
• We run online workshops and events for adult siblings, parents of young siblings and professionals who support them.
There is a long way to go before the important role siblings play is acknowledged by service providers – something we are working hard to change. Siblings need to be valued and included in key discussions about their brother or sister’s lives, a whole family approach is critical. When siblings are well supported, it has a direct impact on the wellbeing of disabled brothers and sisters, as well as the wider family too.
For more information about Sibs, visit their website at: www.sibs.org.uk
Get your game on! Inclusive games for
the whole family
To celebrate Family Fun Month throughout August, national disability charity Sense has compiled a list of inclusive games designed for families of all ages and abilities. From sensory bowling to disco dancing, these activities are adaptable and enjoyable for everyone.
If you’re looking for games for the entire family to enjoy this summer, aged eight, eighteen, or eighty, no matter your abilities or additional needs, we have some great ideas for you!
Here at Sense, we support children, young people, and adults living with complex disabilities to take part in life – and the Sense Active team have dreamed up inclusive games that everyone can play in the way that best suits them.
The four activities suggested here can all be adapted as you go, to make them simpler or
Family Fun Month
more challenging. Your family can make the games more sensory too, by adding noise, textures, and extra twists.
Ready, steady, GO!
Sensory strike
Have fun taking turns to knock down all the skittles, collect points as you go with this exciting bowling game.
Why not try to stimulate the senses by using different coloured skittles and balls?
What you’ll
need
• A ball.
• Skittles.
How to set up
• Set up the skittles in a classic triangular formation.
Rules of the game
• Players take it in turns to roll the ball at the skittles.
• Count the skittles knocked down to get a players’ points for each turn.
• Players get two tries per turn.
• Reset the skittles after each turn.
Encourage players to grip the ball where
Other ways to play
• Make it more sensory with differently coloured skittles and balls – and consider the background you are aiming at, and whether it contrasts with the skittles.
Try using different sounds when the
To make it easier,
Image credit: Sense
Disco dancing
It’s disco time! Put on your favourite music and move your body to the beat with this fun sound-based activity, which can be modified to include dance challenges or learning a routine.
What you’ll need
• Music and a speaker.
How to set up
• Beforehand, prepare a music playlist with upbeat music that’s good for dancing.
• Dim the lights.
How to play
• Put on your upbeat music playlist and get everyone up and dancing.
• Encourage participants to come up with their own dance moves or teach each other dance moves.
• For inspiration, you could use animalinspired movements, letters of the alphabet, or focus on using different parts of the body.
Top tips
• Have fun with sensory glow sticks, disco lights, and bright colours.
• Dancers could be encouraged to try out using just one movement throughout the activity.
• Make it more challenging by asking dancers to come up with a routine as a group.
Seated volleyball
Two teams take turns to pass the ball back and forth over the net in this seated version of volleyball. If it’s a big group, try using more than one ball to keep everyone engaged.
What
you’ll need
• A ball – a beach ball is perfect.
• A net or similar.
How
to set up
• Divide the group into two teams.
• Set up the net at a low height, with one team on each side.
Rules of the game
• One team starts with the ball. The participants must try to hit the ball back and forth over the net using any body part.
• You could add some competition – if a team drops a ball, the other team gets a point.
• Encourage participants to stretch up for the ball and shuffle across the space.
Other ways to play
• Use different coloured balls – bright colours are great.
• Make it more sensory with balls that have bells in them or have different textures.
• Lighter or heavier balls will change the difficulty.
• If it’s too easy, try moving the teams further away from the net, or closer for a less challenging game.
• You can also try raising or lowering the net.
Image credit: Sense
Bubble pop
It’s lots of fun seeing how many bubbles you can pop with this simple game – all you need is a pot of bubbles. If you have a bubble gun machine, you can use that instead to make things more fast-paced and exciting!
What you’ll need
• Pots of bubbles (or a bubble machine if you have one).
How to set up
• Find a clear space for the activity.
Rules of the game
• Blow the bubbles near the player and encourage them to reach out and pop as many as possible.
• See how many they can pop in a set amount of time.
Top tips
Adapt the game by adjusting how close or far the bubbles are blown near the player.
Players can be encouraged to blow bubbles to each other.
Why not play some music or sounds in the background?
Remember to blow the bubbles near the participant, and not directly at them.
For more ideas, visit www.sense.org.uk/inclusivegames
WellChild: Helping families support other families
WellChild is the national charity giving children and young people with serious and complex health needs the best chance to thrive – at home with their families.
The team at WellChild shares with KtoA Magazine how their Family Tree, Parent Ambassadors, Information Hub and In Your Area platform offer practical and emotional support and builds a network of families to come together and connect.
The WellChild Family Tree
The Family Tree network allows parents to connect with others who ‘get it’ for mutual support, advice and friendship.
By registering with the WellChild Family Tree network, you can benefit from:
Joining our closed Facebook group: by WellChild, our group is a safe space to connect with and seek support from other parents, share experiences, find information and identify other parents in similar stages of their journey. The group allows you to speak freely any time of the day or night, with others who just ‘get it’.
Meeting up, making friends and sharing experiences: We have a wide range of events on offer throughout the year, whether it’s a sailing experience, horse riding, zoo trips, virtual workshops, family craft club or our virtual Tea and Talk series!
health and complex medical needs, and the positive impact WellChild has had on their lives, they have helped raise awareness of the support we provide and helped us raise much needed funds to continue our work.
Taking part in family activities: This may range from making friendship bracelets for our celebrity ambassadors, designing our next medal for our challenge event participants, or sending us your family snapshots to help us fill our social media channels with all your amazing stories.
Keeping you updated: You will receive our monthly newsletter, packed with lots of helpful information, along with our monthly Wellbeing mailings full of great ideas and inspiration on how to support your wellbeing, and ad hoc mailings full of WellChild updates, events, and other family focused information we think you’d like to know.
Last year, 3331 families received peer-to-peer support through the Family Tree network. Hayley, a mum and Family Tree member, says the network means: “You are never alone. There will always be someone else in the WellChild Family Tree to offer advice and support.”
Parent Ambassadors
The Parent Ambassadors help WellChild to reach out to more families, elevate the voices of parents and carers, and support us at events to raise awareness of the work we do.
They are also vital in helping us understand the challenges parents and carers are facing. By keeping us informed of local challenges, they are invaluable in shaping our ongoing projects and strategy.
Information Hub and the
In Your Area platform
WellChild have an extensive Information Hub, with resources about looking after a child with complex needs, from diagnosis to transition to adult services, as well as wellbeing information for parents, carers and siblings.
We also have the In Your Area platform where parents and carers can find services and activities that help families like theirs. You can choose filters such as if there is a quiet space, changing places, or disabled parking available, and if it’s autism, learning disabled, BSL, wheelchair or walker accessible.
Most importantly, you can review and comment on a service to let others know how well it meets your needs.
Find out more about how WellChild can support you and your family, and how you can work with them to build a network of support for others at www.wellchild.org.uk
Making everyday adventures easier, more accessible and more enjoyable for families
We offer 15% discount to those requiring additional support. Scan the QR code for more information on how to apply.
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Making every outing accessible!
Since launching in 2023, the Team at WonderFold Wagon HQ has received feedback from families that have children with additional needs, including ASD and ADHD, saying how the product has, quite literally, changed their lives.
WonderFold Stroller Wagons are the perfect choice for parents of larger young families or children with additional needs because they include several features that make them suitable for a child that requires additional support, comfort and safety. They have raised seats, a wide opening, which is particularly helpful for kids who have a caregiver assisting them, high sides to make them feel safe and secure, plus a large surface area to increase stability and reduce the risk of tipping.
Despite their larger size, wagons are designed to be manoeuvrable, with swivel front allterrain wheels and adjustable handlebars. Parents can navigate through tight spaces or around obstacles with ease, while still maintaining stability and control.
Rachel Thomson, mum of three, Aria (4) and twins Annie & Charlotte (2) from South Sheilds, told WonderFold UK: “Aria has ASD with social & development delay and the twins are behind with hitting milestones (neither of them walk independently). Before having a WonderFold, going out with all three children alone was impossible as Aria has no danger awareness and is prone to running off. It has enabled me to take all three children out on my own – and have confidence to do so! - where previously I wouldn’t have dared. Plus, there’s plenty of room in it for any grocery bags too.
“Aria especially views it as a safe place for herself when we are out, so if she is feeling overwhelmed or overstimulated, she will indicate that she wants to go back into the wagon. For the twins, it’s a must. I anticipate that the wagon will become even more of
a must, as the twins become more mobile, since we think they may also be diagnosed with ASD and there is every chance that they will also have no danger awareness and an impulse to run off, like their big sister.”
Here to Help
WonderFold supports by offering families with additional needs a 15% discount on any WonderFold Wagon and accessories. The Team at WonderFold UK try to make the process as simple as possible. To qualify, send a copy of supporting documentation to let them know about the disability your child has, which hospital/trust has diagnosed them and to be signed by their doctor. They also accept a copy of any DLA you may receive. Once this has been uploaded using the online form, the team will take a look and ensure it meets our criteria.
You can find out more at www.wonderfoldwagon.co.uk @wonderfold.UK
Family Fund
Family Fund is the UK’s largest grantmaking charity for families, living on a low income, raising a disabled or seriously ill child or young person.
They believe that families raising disabled or seriously ill children and young people should have the same choices, quality of life, opportunities and aspirations as other families.
For KtoA Magazine, the Family Fund team run through their support services: from information to help you manage your money and navigate benefits, to practical workshops getting you online and using digital tools.
How can Family Fund help?
Family Fund helps families raising disabled children by providing a range of grant items that they might not ordinarily be able to afford.
As well as providing grants for items such as family breaks, computers, white goods, furniture, clothing and bedding, Family Fund also helps families to find information and support including practical workshops and signposts to other help and resources.
Discover Digital
The Family Fund Discover Digital support programme offers parents, carers and children free digital skills and creative workshops and resources. Our free virtual workshops run throughout the year and are a safe space to learn new skills with other families raising disabled children.
Nina’s confidence boost over the summer break
Nina is ten years old. Last year she attended some of the Discover Digital workshops during the summer holiday. Her mum, Natasha says, “Nina learnt lots of new things from the workshops. She really enjoyed it and kept at it even after the sessions had finished. I was surprised at how quickly she picked everything up.”
“Nina has learnt skills she can take away with her. She also gained more confidence in herself and her ability to use technology. She was really proud of what she created and showed everything to family and friends.”
“I would definitely recommend Family Fund’s Discover Digital workshops to others. It was a huge blessing for my family because it helped my child to be happier and more creative. It also encouraged positive interactions between the siblings. Even though Nina’s brothers didn’t directly take part, she did show them what she was doing so they learned something new too, and it strengthened sibling bonds.”
Discover more support
The Family Fund ‘Discover more support’ online search tool signposts to a range of charities and relevant organisations that can provide additional help and support to families raising disabled and seriously ill children.
The search tool allows you to quickly and easily search for organisations who can help. You can filter the search by categories
such as: breaks, digital skills, education and learning, food and housing, grants and funding, mental health, money and benefits. You can also search by country or using your own specific keywords to see useful support.
Help with finances
Family Fund understands that life can cost a lot more for families raising a disabled or seriously ill child. We offer a range of information and services to help you manage your money, including workshops, interactive courses and budget tools.
Information and support events
Family Fund host information and support events, to give families the chance to meet the team, as well as other organisations, to learn more about the support services, grants and information on offer.
We also attend many of the Kidz to Adultz exhibition events and will be at Kidz to Adultz North on Friday 11 October, at Manchester Central.
Fundraising with Family Fund
Want to help support UK families who are raising disabled or seriously ill children? We have lots of ways you can get involved:
• Join the Family Fund weekly lottery and be in with the chance of winning the £25,000 jackpot!
• Support us every time you shop online through ‘easyfundraising’.
• Or take part in one of our many fundraising events – whether you’re a runner, cyclist or daredevil with a thrill for heights, we have challenges for everyone.
Find out more about fundraising with Family Fund by emailing: fundraising@familyfund.org.uk
For more information about Family Fund and their wider support visit: familyfund.org.uk
Tree of Hope: Branching out for a better tomorrow
Tree of Hope shares with KtoA Magazine how they help families tackle the costs and challenges of raising a child with additional needs through supportive and effective fundraising.
Caring for a child with a disability is three times more expensive than raising a child without a disability and is a rollercoaster of emotions and experiences. Parents often have to reduce working hours to care for their child/ren. Additionally, benefits including Disability Living Allowance (DLA) don’t keep pace with the extra costs of raising a child with additional needs. Recommended equipment and services from therapists and suppliers come at a premium, and with the NHS under increasing pressure and waiting lists growing, how do you do it?
Grace
National children’s charity Tree of Hope has supported families with disabled children across the UK for over thirty years, to fundraise for needs associated with any healthcare condition or disability. Tree of Hope is a complete fundraising service providing families a full support service, a listening ear, helping to inspire ideas, make fundraising achievable by opening up more effective fundraising avenues than traditional crowdfunding platforms offer, and enabling families to access the funds they need quicker.
Grace and William:
Turning passion into impact
Grace has a mutation of the gene RHOBTB2 (c.1448G>A) and is currently one of around thirty-eight people diagnosed around the world. Grace’s family joined Tree of Hope to fundraise £100,000 to pay for specialist therapy, home adaptations, and equipment to give her every opportunity to thrive and develop – they are going from strength to strength.
Grace’s parents said: “Tree of Hope are an amazing organisation that have gone above and beyond to not only support my little girl Grace, but also so many other children. We have been doing numerous fundraising events, and Tree of Hope have always been there for help and advice on how to get the most out of our campaign, through social media, telephone communication, or email, support is always on hand.”
William has a rare neurogenetic condition called Angelman Syndrome. This is a chromosome 15 deletion which leaves him facing a life of therapy to learn to walk, sit, and communicate as well as ongoing home adaptations and equipment needs. William’s parents have thrown themselves into fundraising and achieved so much for William.
William’s family is immensely grateful for Tree of Hope and says: “Having the support of Tree of Hope taking care of the payment processes, and conversations with the suppliers, it takes the worry out of it for us. There were always people and companies that couldn’t give to us directly, but with Tree of Hope, we have more funding opportunities.
Having the gift aid also makes such a difference and has meant we’ve been able to buy a specialised bed quicker for William than we ever imagined!”
Thinking of fundraising? Here are some top tips to consider first: Work with us. Using Tree of Hope as a banner to fundraise with gives donors confidence and trust that they are donating to a registered charity and presents new opportunities. Who can you get to help? Fundraising is much more enjoyable when others are involved. Gather a small team of family and friends so you’re not doing everything on your own.
Your friends and family are your most ardent supporters so make them aware of what you want to achieve and get them to help spread the word.
Social media is a great tool to make lots of people aware of your campaign quickly. Our marketing support and social media guide will help get you started!
Fundraising does require you to put yourself out there, which is a personal choice but can be a lot less scary than families often think, and we are here to help you on that journey. Get in touch. Our family support team are always happy to chat if you want to find out some more information about fundraising and what being part of Tree of Hope will help you to achieve. Email families@treeofhope.org.uk or call 01892 535525.
William
What’s on?
Sport
The Paralympic Games
Paris, France
Thursday 29 August – Sunday 8 September
Twenty-two sports will feature at the Paris 2024 Paralympic Games, with a total of over five hundred events.
Spectators will enjoy ten days of paraathletics (30 August - 8 September) and para swimming (29 August - 7 September) events. That’s plenty of time to put on thrilling performances and break new records.
Highlights will include the Blind football matches taking place in front of the Eiffel Tower, the Grand Palais des Champs-Élysées hosting the para taekwondo and wheelchair fencing competitions, and the paralympic road cycling races winding through the streets of Paris.
TV for the Paralympics
Channel 4 will bring viewers all the action, medals and must-see moments from every Paralympic venue across Paris.
They will also be covering the Opening Ceremony on Wednesday 28 August at 7.30pm – 10.30pm, with presenters Ade Adepitan, Clare Balding and Ellie Simmonds. The broadcast will include BSL and open descriptive commentary.
Youth Mental Health Day 19 September
International Day of Sign Languages 23 September
Down Syndrome Awareness Month October
World Cerebral Palsy Day 6 October
Exhibitions
Wild Manchester Museum
Until 1 June 2025
Manchester Museum’s new exhibition, Wild, explores our relationship with the natural world and looks at how people across the globe are creating, rebuilding and repairing connections with nature.
The exhibition features work from two Venture Arts artists, Emelia Hewitt’s stunning wildlife photography and Andrew Johnstone’s characterful animal illustrations.
Venture Arts is an award-winning visual arts organisation working with learning disabled artists. Through their studio programmes, exhibitions and collaborative projects, they remove barriers to the arts and provide pathways for every individual to develop their creative identity.
Towards New Worlds
MIMA
Until 9 Feb 2025
Towards New Worlds features fifteen disabled, D/deaf and/or neurodiverse artists sharing their experiences of seeing, hearing, feeling and sensing the world.
The exhibition offers a rich sensory environment, with moments of quiet reflection and spaces for interaction and relaxation. Through varied mediums including drawing, photography, installation, video and interactive sensory pieces, the artists call attention to the many ways of experiencing the world.
Andrew Johnstone, untitled, illustration, 2022.
Theatre
Qudus Onikeku’s Re:INCARNATION
Southbank Centre, London
Thursday 19 September 7.30pm
In the UK premiere of this piece, ten young dancers and two musicians perform the cycle of life, set in the Nigerian city of Lagos.
The show draws on Afrobeats, an explosive cocktail of jazz, soul, funk, and traditional African music, to provide a soundtrack for the high-energy choreography.
This performance is Audio Described and there is a Touch Tour available before the performance.
The Elmer Adventure
The Lowry, Salford
Friday 25 October, 1.30pm
Join three friends on a joyful jungle adventure in this magical, musical adaptation of the much-loved Elmer books by David McKee.
The enchanting and colourful world of Elmer the patchwork elephant is brought to life through songs, storytelling and puppetry.
This performance is Audio Described by Talking Theatre, and a Touch Tour available at 12.30pm.
Film and TV
Inside Out 2
Thirteen-year-old Riley Andersen is about to enter high school. Her personified emotionsJoy, Sadness, Fear, Disgust, and Anger - are now joined by five new emotions - Anxiety, Envy, Embarrassment, Ennui, and Nostalgialeaving Headquarters in disarray.
When Riley heads off to hockey camp the new emotions try to take over, but Joy is determined to stop them.
The film has been praised for its representation of anxiety and panic attacks.
Sonny is twelve. Living with a stammer, he’s finding his way in a world ruled by vicious vowels and confusing consonants.
Packed with playful humour, dazzling visuals and thrilling original music this innovative production includes live creative captioning on stage throughout to share a story about the power of communication.
Sophie Morgan’s Fight to Fly
This new documentary by TV presenter and wheelchair user Sophie Morgan aims to shine a light on what many disabled people go through while travelling, and to call for an overhaul of the airline industry.
Sophie is also the founder of the Rights on Flights campaign which launched in March 2023 to combat accessibility and safety barriers for disabled travellers.
Watch on Channel 4.
Podcasts
Access All: Disability News and Mental Health
Election Q&A: mental health, children and housing For this episode, presenter Emma Tracey is joined by Sam Carlisle from The Disabled Children’s Partnership. They are a policy campaign group of over a hundred 100 charities and children’s organisations who fight for change for disabled children. They discuss the different political parties’ manifestos on disability, healthcare and social care, and their hopes for the future.
Ologies with Alie Ward
Disability Sociology – Disability Pride
July was Disability Pride Month, and professor, researcher, activist, and Disability Sociologist Guinevere Chambers joined the Ologies podcast to bust myths and provide perspective on everything from the history of ableism, to sign language, to where ADHD and autism come into play, and how to ask for what you need.
Books
Billy’s Sister: Life when your sibling has a disability
By Jessica Leving
Growing up with a sibling who has a disability can be hard. But it can also be... awesome! Based on the author’s real-life experiences, this unique and touching children’s book explores how siblings of kids with disabilities are special, too.
Created with the aim of helping siblings of kids with disabilities identify, express and process their feelings, this book is intended to spark valuable family discussions.
Let’s Start in the Middle
By Daniel McMurray
From a constant need to move, having to find out everything about their hyperfocus, and the skill to listen to absolutely everything, this book provides one person’s experience of ADHD.
The colourful, fun and engaging illustrations are perfect to introduce ADHD to family members, friends, teachers and those wanting to learn more.
Image credit: Herve Veronese
Chailey Heritage Foundation
Supporting families through transition to adult services for young people with complex neurodisabilities
Leaving a special school is a daunting prospect for many young people and their families. The transition to adult services for those with complex neurodisabilities demands extensive support from professionals to help young people, their parents, and carers during this critical time.
In this article, Paula Marten, Assistant Headteacher at Chailey Heritage Foundation, shares her experience in guiding parents and carers through the transition process.
The challenges of leaving school
Chailey Heritage Foundation is a nonmaintained special school in East Sussex for children and young people with complex neurodisabilities. Children usually start school in their early years, some living onsite, and stay until they are eighteen years old. All the services – clinical, educational, and therapeutic – are available in one place. So, what happens when the young person completes their final year?
The emotional impact of an eighteen-yearold leaving school is significant for any parent. When the child has complex neurodisabilities, the challenges multiply exponentially. Many young people at Chailey Heritage Foundation have been at school there since they were four years old, so leaving can be a scary prospect for them and their families. Parents may not know for sure where their children will go until the summer of the final school year. Understanding the changes to funding and navigating the seemingly endless needs assessments is incredibly stressful for parents. There are no guarantees and a lot of uncertainty.
Options for school leavers
At Chailey Heritage Foundation, young people generally move on to:
• Futures: Adult residential services at Chailey Heritage Foundation (19-25 years old).
equipment or services due to providers’ failures to agree, but there are many positive outcomes as well.
Legal framework
Several legislative frameworks support the transition process:
• Government guidance: All services involved in providing care and support for young people follow government guidelines.
• Education, Health, and Care Plans (EHCPs): Most young people complete their education by age nineteen, at which point their EHCP can cease.
• SEND code of practice: 0 – 25 Years: Statutory guidance for organisations working with young people with special educational needs and disabilities (SEND), issued by the Department for Education and the Department of Health in January 2015.
• Children and Families Act 2014: Outlines the care and support individuals are entitled to and the obligations of local councils.
• Local Offer: Statutory obligation for local authorities to provide parents with information on SEND provision in their area.
• Care Act 2014: Ensures a smooth transition from children’s services to adult services, ensuring continuity of care.
Empowering parents and carers
Specialist or local college: To continue education tailored to their needs.
Living at home: With additional support, accessing various daytime activities.
Residential care home: For more intensive support needs.
Each option requires different funding, so the choices made by the young person and their family cannot be confirmed until the relevant provider agrees to the funding.
Parents often worry after hearing stories of young people left without necessary
It’s empowering for parents and carers to gather as much information as possible, as early as possible. We would advise parents to familiarise themselves with community resources, build relationships with others in similar situations, explore options, and engage with professionals.
At Chailey Heritage Foundation, opportunities for parents to gain knowledge and establish social links are provided through:
• Future placement planning meetings: Held annually from Year 9, increasing in frequency during Years 13 and 14.
• Information-sharing events: Focused on transition topics.
• Transition/FPP Coordinator and Family
Liaison Workers: Employed to support and advise families throughout the process.
• Staff training: Ensuring all staff are equipped to support the transition to adulthood.
Advice from experienced parents
Parents who have gone through the process offer valuable advice:
Start early
“Look at potential placements at least two years before they are due to leave school.”
Be proactive
“Go to professionals and ask, ‘What do you think of this?’”
Trust your instincts
“Think about what you want in the long term for your son or daughter.”
Young people who leave Chailey Heritage often go on to lead meaningful and happy lives in the right setting and with the right support. Achieving this is not easy, but we will never give up working with parents and families to reach this goal.
Find out more about their services for children and adults at www.chf.org.uk.
Paula Marten will be joining us at Kidz to Adultz North on Friday 11 October 2024 at Manchester Central. She will be delivering a seminar at 12pm about the ‘Transition to adult services for young people with complex neurodisabilities’.
Find out more and register for free here: www.kidzexhibitions.co.uk/ north-seminars
North Friday 11th October 2024
Manchester Central
Manchester
For children and young people with disabilities and additional needs, and the people who support them.
Disability Grants: Helping families find a funder
Julia Tyrrell’s journey began with the everyday challenges of raising a child with disabilities as a single parent. She has spent the last fourteen years creating and updating her Disability Grants website to offer support and advice for others.
How did Disability Grants begin?
Julia faced difficulties in obtaining funds to cover essential resources for her son. Over the years she has managed to secure grants to help fund trikes, wheelchairs, home adaptations, medical equipment, and specialised holidays. With this support, her son has experienced an enriched life - cycling with friends, enjoying family meals, and even wheelchair abseiling! This journey was made possible by a Family Support Worker, whose retirement left a void that Julia, and a couple of other parents, felt compelled to fill.
When her ‘fairy godmother’ Family Support Worker retired, Julia, alongside other parents, stepped up to continue her work. Julia volunteered to keep parents informed about available grants. Drawing from her experience as a parent and frustrated by the lack of accessible information on grants, Julia decided to create a hub of support - leading to the creation of Disability Grants.
Hope for families looking for funds
Disability Grants has since become a valuable resource for individuals with disabilities and their families. The website offers comprehensive information about charities and trusts in the UK that provide funding for disability-related expenses.
Julia had previously taught computer skills using assistive technology to young people with physical and learning difficulties and was therefore aware and conscious of the need for digital accessibility. It was important to her that the site was designed to save time for
screen readers and accessibility software.
Jude Sellars, Trust Fund Officer for Cumbria Cerebral Palsy speaks highly of Disability Grants and says it is: “an excellent site which will help many people!”
Julia’s work extends beyond the website. By subscribing to the free monthly newsletter, users can stay updated with the latest news and grant opportunities.
Looking for a guide to grants?
Julia’s dedication to creating a comprehensive guide to grants has been hugely helpful for many. She continues to signpost and update the website with key information such as funding deadlines, and often acts as the link between families and funders.
For more information and to explore available resources, visit Disability Grants at disability-grants.org
Disabled Living
Who we are & what we do:
Disabled Living
A charity which provides impartial information and advice about products, equipment (assistive technology) and services for disabled children, adults, older people, carers and the professionals who support them. We have a range of services which you can access via our helpline, through the website or at our Kidz to Adultz exhibitions. www.disabledliving.co.uk
Adapt & Live
Adapt & Live is the new name for the helpline and training services by the charity Disabled Living. The team provide advice to members of the public and healthcare professionals about equipment and services to support independence. In addition, we offer Occupational Therapy assessments, access audits and accredited training programmes
Helpline: 0161 214 4590 | www.adaptandlive.co.uk
Bladder & Bowel UK
The team provide information and advice for children, young people and adults with bladder and bowel problems. We provide a confidential helpline managed by a team of specialist nurses and knowledgeable information staff. In addition, the website offers a wide range of downloadable free resources
Helpline: 0161 214 4591 | www.bbuk.org.uk
Kidz to Adultz
We organise the largest FREE UK exhibitions totally dedicated to disabled children, young adults, their families, carers and the professionals who support them, with over 100 exhibitors at each event. We currently deliver five events nationally in Coventry, Farnborough, Newport, Glasgow and Manchester www.kidzexhibitions.co.uk
