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2022-10-31-accounts

The Downright Special Network Annual Report and Accounts 1[st] November 2021 - 31[st] October 2022

Contents

Foreword from the Chair ................................................................................................................................................ 3 Background ..................................................................................................................................................................... 4 Safeguarding Statement ................................................................................................................................................. 4 Meet the Team ................................................................................................................................................................ 5 Our Trustees ................................................................................................................................................................ 5 Our Staff ...................................................................................................................................................................... 6 Our Volunteers ............................................................................................................................................................ 7 Review of our Activities of the Year ................................................................................................................................ 8 Education .................................................................................................................................................................... 8 Downright Special Early Development Groups ....................................................................................................... 8 Downright Special Education Outreach Work with Schools ................................................................................... 9 Support to Families ................................................................................................................................................... 11 Social Events .......................................................................................................................................................... 11 Other Support ....................................................................................................................................................... 12 Downright Special Health .......................................................................................................................................... 13 Supporting Young People – Building a Brighter Future Project ................................................................................ 14 Advocacy ................................................................................................................................................................... 15 Awareness Week ................................................................................................................................................... 15 New Parent Packs .................................................................................................................................................. 16 Campaigning – Down Syndrome Act ..................................................................................................................... 16 Networking ............................................................................................................................................................ 16 Communication with parents and carers .............................................................................................................. 16 Training ..................................................................................................................................................................... 17 Fundraising ................................................................................................................................................................ 18 Financial Review ............................................................................................................................................................ 20 Income ...................................................................................................................................................................... 20 Expenditure ............................................................................................................................................................... 21 Looking to the future .................................................................................................................................................... 22 Declaration .................................................................................................................................................................... 22 Appendix: Unaudited Financial Statements .................................................................................................................. 22

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Foreword from the Chair

Over the past 12 months, the charity continued to go from strength to strength, providing excellent support to children, young people and their parents/carers.

Downright Special is successful due to the excellent leadership of the Charity Manager, Gillian Bowlas and the fabulous team of teachers, support staff who between them have a wealth of expertise and experience across the key phases of childrens’ education and development. The training and development, provided by our team, for practitioners across Hull and the East Riding continues to be a key aspect of the Charity’s work and the need for this training will only increase.

In coming out of the pandemic it was evident, through feedback, that many parents/carers felt isolated and needed greater social interaction and networking, to which the team responded whole-heartedly to with an array of social events and forums that provided space and time for parents/carers to meet and share.

There are several areas of key focus but to choose a couple, in 2021/22 we continued to focus on:

As we look to the future our plans continue to be centred on expanding our range of services in line with the increasing age range of the children we support so we can continue to support their evolving needs and help them reach their potential. You can read more about our future plans on page 22.

These plans and the developments we have been able to achieve to-date would not be possible without the fundraising and grants we receive. These are critical to the success of the charity - thank you to all the individuals and organisations who have supported us this year. Without you, it would not be possible!

Finally, thank you to everyone in the Downright Special Family who are a joy to work with and make everything achievable - children, parents, grandparents, staff, volunteers, supporters and professionals from other agencies - all of whom have a common endeavour to build a brighter future for children with Down syndrome.

I hope, in reading this report, you will agree it is a wonderful showcase of outstanding work and key developments. We are incredibly proud of this work – it is both inspiring and forward thinking.

Lizann Lowson

Chair of Trustees

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Background

The Downright Special Network was established in June 2007 to:

The work undertaken by staff, as a result of the fundraising and donations received, allows us to focus on our enduring priorities of:

Safeguarding Statement

Downright Special is committed to safeguarding and promoting the welfare of children, young people and adults with a care and support need, engaged in the breadth of its activities. Downright Special believes that everyone has the right to be safe from harm and should be able to live free from fear of abuse, neglect and exploitation.

Downright Special takes its responsibilities for safeguarding children extremely seriously and we believe safeguarding is everyone’s responsibility. We follow safer recruiting guidelines. All Downright Special posts are subject to enhanced DBS disclosure. All our staff and volunteers who have contact with families must attend Level 1 Safeguarding training as a minimum with several of our staff receiving further training including safer recruiting, vulnerable babies and Makaton safeguarding workshop. Our safeguarding policy can be found on our website.

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Meet the Team

Our Trustees

We ended the year with five trustees on the board having had two new members join and two trustees who

resigned over the course of the year.

Lizann Lowson
Appointed October 2019
Chair since July 2020		 Angela Broekhuizen
Appointed June 2016
Treasurer since June 2021
Gavin Beresford
Appointed May 2017		 Jenny Ross
Appointed September
2018
(resigned September
2022)
Kate Long
Appointed April 2020
(resigned February 2022)		 Michelle Fargen
Appointed April 2022
Neil Findlay
Appointed October 2022

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Our Staff

We started this year with eight part-time members of staff to ensure the smooth running of the charity and deliver our Friday education sessions, outreach work in schools and training courses for parents and professionals. In the second half of the year, we also recruited a deputy charity manager in order increase the resource required to further develop and grow the charity.

The team includes:

Gillian Bowlas
Charity Manager		 Louise Smith
Charity Organiser
Sam Findlay
Health Lead		 Katie Bewell
Specialist Teacher (KS1) &
Designated Safeguarding
Officer
Laura Nichols
Early Years Advisor		 Dr Nicola O’Riordan
Advisory Teacher
(KS2/KS3)
Sarah Hyde
Toddler Group Leader		 Susanne Townhill
Baby Group Leader &
New Parent Contact
Kate Long
Deputy charity manager
(Appointed February 22)

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Our Volunteers

To keep our costs as low as possible, the Charity uses many volunteers, including several parents, and we owe a huge debt of gratitude to each one of them who helped us this year. These volunteers assist with running Friday sessions, laminating resources, organising social events, supporting new parent visits, managing our website and IT systems, running our bookstall, charity tin collections and managing the accounts. Many thanks to: Lisa Bloomer, Angela Broekhuizen, Jill Lambert, Neil Findlay, Erin Findlay, Victoria Ross, Becky Constable, Lauren Ward, Emily Barnett, Jessica Ross, Rachel Bowlas, Tone Broomfield, Karl Svenson, Toni Bullock, Roger Vine and all the amazing volunteers who helped at our Christmas and Easter events.

Erin, Jess & Becky, Friday Group Volunteers

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Review of our Activities of the Year

Education

OUR PRIORITY WAS TO RETURN FULLY TO FACE-TO-FACE SUPPORT FOLLOWING THE PANDEMIC AND ENCOURAGE FAMILIES BACK TO OUR ACTIVITIES SAFELY

Downright Special Early Development Groups

Our Downright Special early development groups run on a Friday during term time and continue to be a great success for children from birth to approximately five years old. We currently have around 16 children who regularly attend Friday mornings and, this year, we delivered 37 sessions. These sessions are a chance for parents to get together, have a coffee, share experiences and provide mutual support. The children get the chance to play and make friends. Most importantly the sessions also incorporate ‘lesson time’ when the children are put in small groups to work on their speech, language and communication skills, numeracy and

literacy in a way that is tailored to the specific learning profile of children with Down syndrome. We provide lots of bespoke visual resources to support the children’s learning and parents are given these to continue the work at home. We use Makaton sign language throughout the morning, helping parents and children learn the signs they need to communicate with each other and help with learning new words. We have established a tried and tested curriculum of activities which is reviewed annually to ensure the latest teaching methods are used. The curriculum also helps us to track progress and record milestones for each child.

Our baby group continues to be incorporated into Friday mornings, with our youngest children enjoying a range of sensory activities and learning some of the early skills, such as taking turns and making early speech sounds in a relaxed and fun environment. It is also a chance for parents to see a demonstration of some the activities they can do at home to support their child’s development and for parents to learn some of the most useful sign language to help with their baby’s communication skills.

Also, an aspect which is crucially important, Downright Special Fridays offer parents and carers the opportunity to chat over coffee, share their experiences and offer peer-to-peer support whilst the children play in a safe environment. However good a statutory agency may be, there are some things that only another parent will understand and be able to offer the mutual support which is so often needed. The Friday group is striking visual evidence that there is no “type” of parent who will have a child with Down syndrome and we have a diversity of ages and cultures in the group. New dads can also be reassured it certainly isn’t a “mother and baby” group, as we have several fathers attending regularly.

We have continued to alter our approach for children with specific social communication needs by delivering blocks of 1:1 or 1:2 sessions focusing on those children’s particular needs. These sessions have been very successful with the children making significant progress in this time.

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Downright Special Education Outreach Work with Schools

Downright Special Education aims to support effective inclusion in mainstream schools. Our three part-time members of staff provide support to 49 children in mainstream nurseries, pre-schools and schools. We have continued to increase our support to mainstream secondary schools as more of our children choose to continue their education this way. We now support eight children in mainstream secondary. The number of schools and nurseries receiving direct support from us is around 45. Our specialist teachers have visited schools to assess children and advise teaching staff, provided training for schools on the learning profile of children with Down syndrome, assisted with formulating effective Individual Education Plans (IEPs), written reports for the Education and Health Care Plan (EHCP) process, and attended annual reviews and transition meetings. We also continue to provide Education Resource Packs for each child we support when they begin their formal education.

“Due to the teacher being shown the learning style of children with Down syndrome, they have been able to plan and resource lessons to allow the child to access the curriculum better. The child has become so confident and engaged in learning thanks to the support given to both teaching staff, support staff and the child.”

Laura Nichols is our Early Years Advisor and, in addition to leading a Friday morning early intervention group, Laura’s remit is to provide support and advice on inclusion of a child with Down syndrome in mainstream nursery or preschool settings. She ensures our children get the best start to their education before they even reach statutory school age. Laura had 19 children on her caseload and provided support to 16 different settings this year.

Katie Bewell is our Specialist Teacher, mostly working with children in Key Stage 1. Katie had 12 children on her caseload this year. The use of colourful semantics for comprehension and speech fluency, and incorporating its use in specialist Apps such as Clicker, has continued to be a success this year. Many Teaching Assistants (TAs) are now using it in the classroom and we are seeing our years of work on the use of colourful semantics paying off, with our children making significant progress in this area of development. There continues to be great success with phonological awareness training, using multiphonics bricks with matching boards, which really help children blend and segment ‘CVC’ words.

Dr Nicola O’Riordan is our Key Stage 2/3 Advisory Teacher. Nicola has been instrumental in providing outreach support to our KS2/3 children and supporting the children, staff and parents in the transition to secondary school. Nicola had 21 children on her case load. In the last year, has begun to support children in KS4 (years 10&11). Nicola has continued to develop our INSET training offer for schools, writing and delivering a suite of new courses to suit the requests from schools.

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Very importantly, we continue to offer small-group sessions at our Downright Special Friday group for school-age children and their TAs to the end of Key Stage 1. This year, we had 13 children attending these afternoon sessions in

four different teaching groups. These structured lessons cover the core elements of the curriculum, including reading, writing, literacy, numeracy, and speech and language development. Having the TAs attend means they can see a demonstration of how to practically apply the specific teaching techniques which ensure our children’s learning is maximised. They are given resources they can take away for use in the classroom and have plenty of opportunity to ask for advice on any issues they may be

facing in the classroom, or to get guidance on next steps. It is also useful for them to meet other TAs to share experiences and learn from each other. We also continued monthly groups for children who have recently moved into KS2 and are ready to do some focused work on developing comprehension skills using a heavily scaffolded version of the ‘Language for Thinking’ speech and language programme. These groups are led by our KS2/3 advisor Nicola O’Riordan.

Case Study

I have been coming to Downright Special since I was a baby and I am now five years old. I am in a group with other children who also started at the same time as me. We are good friends and I see them outside of Downright Special too. As soon as I arrive on a Friday, I ask Katie my teacher where each of them are. Our mummies are all friends too because they met at Downright Special. Now that I am at school I come in the afternoon with my TA.

My speech has become clearer, the number of words I know has increased and I can build better and longer sentences since last year. I am getting good at talking about the things I like and dislike and my needs and wants. Recently my mummy and teaching assistant were given resources from Downright Special to help me with road safety. I like reading the social story about it and I have learned some of the signs for danger.

At the beginning of the year, I had to do my Downright Special lessons online. All my resources were sent to school the week before and then my TA and I did the lessons with Katie over Zoom. I did find this tricky at times but my TA and Katie helped to make them fun and I continued to learn during this time.

At school my TA uses all the vocabulary boards, books and resources given to me every Friday and she continues to do the work with me at school in between lessons. She does the work exactly the same way as she has seen at Fridays and this routine really helps me to learn and improve my concentration. My teaching assistant also had this to say about how Downright Special has helped her to help me:

“Coming to Downright Special with the child I work with has helped me massively and has made me want to know more. My knowledge and confidence in how to support him has improved. The children work really well in the sessions and the resources are amazing for use in school as well as at Friday group. It has also been useful meeting other Teaching Assistants – we share ideas and give each other advice. I have also accessed lots of the other training the charity offers which has really helped. How the Downright Special staff are with the children, the positivity they show is great. Any behaviour issues are looked at and sorted and if I have any questions then Katie always helps.”

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Support to Families

Our priorities during the year were to offer additional support to families and to further develop our social event opportunities for older children

Social Events

Parents told us how isolated they and their children were feeling during the pandemic and how desperate they were to have social events and chances to meet up with other families. Social events allow our families to get together, share experiences, pass on tips, support each other, and celebrate their children’s achievements. The events also give the children a chance to make friends with other children with Down syndrome and develop what we hope will be lifelong friendships and support networks. These events are just as important as our formal activities and this year we made it a priority to offer as many social events as possible with a mixture of events for all ages and the whole family and agespecific events. We knew how much our older children valued events just for them where they could socialise with their peers of the same age.

It was great to be able to have our Christmas party in person this year at a new venue and with 70 children plus their families coming along. It is certainly the highlight of everyone’s social calendar, with an entertainer, pamper zone, crafts, karaoke and of course a visit from Santa.

We enjoyed a sunny day for our Easter Egg Hunt with 51 children and their families attending. And if that wasn’t enough chocolate 20 of our children and their families attended the Withernsea Bike Easter Egg run at East Park, Hull.

In January, we had an all-age football party, led by dad Karl Southwick of First Touch UK and in the summer, a lovely outing to Densholme Care Farm with 41 children and their families enjoying a picnic and tour of the farm. We also organised tickets for Circus Starr for 50 children.

In addition to these whole-family events, we ran the following sessions for different age groups with over 50 of our children attending at least one event this year.

Pre-school/Primary age events:

Bowling at Superbowl, Hull Pre-school/primary dance sessions with Joanna of The Little Yorkshire Dance Academy

• •

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Youth Club Events (12-25)

Pizza-making at Ask Italian, Hull Dance session with Chris Holmes Halloween Dance with Joanna Football party at Soccer Kings A Painting session with Arting, Hull

• • • • •

Events for Parents

One of the key themes emerging from our biannual survey of parents and other feedback we've had, was the request to give parent/carers a forum to meet up for a chat, so in September we organised our first cuppa and chat session! We had a good turnout of parents who enjoyed the chance to have an uninterrupted catch-up whilst the children were at nursery, school and college so the intention is to continue this termly in the next year.

Other Support

New and Expectant Parents

We continued to support families new to parenting a baby with Down syndrome to offer support and information and this year welcomed two new babies to our special family. Through the hospital and health visiting teams, families are usually put in contact with us within a week of the birth or if a parent knows antenatally then we provide support through the pregnancy. We set straight to work not as lone “advisors” but instead using the extensive network we have built up to put the new parents in touch with others. As our database has grown to over 130 local families, we can now go so far as to match new parents to those of similar ages, situations and with babies who have similar medical conditions. For a new parent, there is nothing better than speaking to somebody who knows exactly what they are going through and can give them a glimpse of easier times a couple of years down the road, and there is nothing that our families with older children like better than reaching out to give new parents support, reassurance, advice and hope for the future. Fantastically, our families are working together for mutual benefit, which was always our ambition.

Advice

Our team are on hand throughout the week to give advice on all aspects of the care and education of children and young people with Down syndrome.

We have a closed Facebook group for parents, giving them a safe place to share useful information, ask questions and provide mutual support.

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We have supported several families this year with advice on filling in benefit forms, in providing reports and advice for Education and Health Care Plans, and with support in choosing schools and nurseries. We have been able to help several families with their applications for claiming Disability Living Allowance (DLA) and Personal Independence Payment (PIP) or appealing against decisions.

Online Library

We continue to have an online library system, where we catalogue all of the books, information and resources we have and make it easy for parents and carers to view the list and arrange to borrow items. The system also makes it easier for us to log the whereabouts of all our resources. We continued to add to the library as new publications become available.

Downright Special Health

This year we were delighted to be able to continue to fund the role of our Downright Special Health Lead. Downright Special has always had a strong focus on education and the aim of the Health Lead role is to bring this same level of expertise and knowledge to the understanding of the health needs of children with Down syndrome. Sam Findlay, a registered Learning Disability Nurse started the role in December 2020, working one day a week on a Friday.

The main achievements in the last twelve months have been:

• Creating a ‘health, education and social care directory’ for children aged 0-18 months in order to make the local NHS Down syndrome care pathway more accessible and relevant to children of this age. The directory clarifies the appointments children should expect to have at this age, the common health issues and details of who to contact in each service, all linked to the developmental milestones for these children. The directory has been well received by parents and this year directories will be developed for all other age groups too.

• Assisting parents with completing a bespoke hospital passport for their children. Designed by Sam with input from parents, this document is for parents to record a one-page summary of their child’s health needs, medical history, communication needs and any adjustments needed so that they can take it to appointments and avoid the need to retell their story over and over as well as acting as an aide-memoire for them as it easy to forget important points in the stress of an emergency hospital visit. The passport also includes information on sepsis and infection in children with Down syndrome, Makaton signing information and communication cards.

• Working with the local Emergency Department Paediatric Consultant to set up an alert system within hospital records so that when a child with Down syndrome arrives at hospital there is a flag on their records that alerts doctors and nurses to the possible differences in how a child with Down syndrome might display symptoms of serious illness. Sam leads on making sure this is updated on an annual basis.

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• Leading the annual update to the Down syndrome care pathway, contacting relevant professionals, updating the pathway with the latest evidence-based information and working with local NHS commissioners to ensure the updates were included and rolled out.

• Signposting families to useful information relating to health, answering lots of individual queries from parents and arranging 1:1 sessions with individual families to give in depth support on issues such as toileting, dual diagnosis, sleep and feeding.

• Leading a working group of families to talk about the experiences of parenting a child with more complex needs and to consider how the charity can respond to those experiences. As a result of this work we have already made some changes e.g. to social events to be more inclusive. Another theme has been around feeling understood by and connected to other families and moving forwards we will be developing a training session for all parents/carers which will raise awareness about dual diagnosis of Down Syndrome and autism. The group has also identified sources of online and real-life support both national and local that they find relatable and will be sharing these with everyone. The group is currently pulling together a detailed plan of what else could be done that would help them feel better supported. In the meantime they have also developed a pledge to articulate our vision for the charity:

“Downright Special recognizes that each individual with Down's syndrome is unique and that some may have more complex needs. We pledge to create an environment where all individuals and their families feel welcome and supported, regardless of diagnosis or ability.”

Supporting Young People – Building a Brighter Future Project

Our priorities were to re-establish the Building a Brighter Future project, for example developing a programme of activities to support parents and developing a clear future plan for Downright Special’s role in creating/supporting opportunities for young people with Down syndrome post-16.

We have been thinking about our long-term strategy and how we need to evolve to meet the needs of our young people as they leave school and transition to further education, work experience, training or employment. We formally began our ‘Building a Brighter Future’ project in July 2019, leading a workshop to gather feedback from local organisations and providers and gathered feedback on the gaps in services and areas which are working well.

The project was put on hold due to the pandemic and lack of resource but we were pleased to be able restart it this year. A working group of parents met regularly to share experiences, concerns and worries and to develop a picture of what support

would be helpful during transition to adulthood. The information gathered is now being developed into an action plan with clear outcomes around training and information for parents, sharing experiences from others who have already been through the transition to adulthood with their children and continuing to provide social opportunities for young people.

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Advocacy

Our priorities during the year were to work collaboratively with our NHS partners to review and communicate the Down Syndrome Care Pathway, to actively participate in Down Syndrome Awareness Week and to raise the profile of the charity.

Awareness Week

Part of our mission is to act as a voice for the children and parents we support. We aim to change perceptions and raise awareness of what it really means to have Down syndrome.

For Awareness Week this year we had a successful social media campaign throughout the week, along the theme of #MyFavouriteThings. We had some great videos and photos of our children of all ages showing how they like to have fun. Huge thanks to Amy, Arthur, Benjamin, Eva, Harry C, Harry L, Hermione, Jake, Jesse, Laiton, Lily, Mia, Nathan, Oscar, Raphi, Thomas, Millie, Charlie, Emma, Megan, Tia, Frankie and Sapphie.

We also had several schools and other supporters wearing their #LotsofSocks on World Down Syndrome Day to raise awareness.

The highlight for Awareness Week though was our first ever ‘pop-up’ café. Families, friends and supporters were all invited to our coffee morning to celebrate World Down Syndrome Day.

There was entertainment from the Sunshine Strummers Ukulele band, soft play, biscuit-decorating, crafts and lots

and lots of cake! Over 100 people came along and it was brilliant to see some of our young people working so hard to help on the day.

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New Parent Packs

Our new parent packs continue to be available on the maternity and neonatal wards. Midwives can give these packs out to parents knowing they are receiving up-to-date information on parenting a child with Down syndrome. A version of these packs is also available for those with an antenatal diagnosis. The packs available to download from our website https://www.downrightspecial.co.uk/expectant-parents and https://www.downrightspecial.co.uk/new-parents.

Campaigning – Down Syndrome Act

We supported the National Down Syndrome Policy group as they campaigned for a Down Syndrome Bill to be passed, with Charity Manager Gillian and her daughter Rachel invited to the Houses of Parliament to meet with MPs and the policy group. The Act gained royal assent in April 2022 and following that we encouraged families to get involved in shaping the guidance that is to be written alongside the act. As a charity we submitted our own views on Health and Education to help inform the guidance.

Networking

We have continued to build networks with groups nationwide, through the DSUK-led Facebook group for those running parent support groups with the aim of making a difference by sharing support, services, knowledge and expertise, making sure we are delivering the best service possible to our families and running our groups as efficiently as possible. This year we presented our work on the hospital passports and the emergency department alert at the annual DSUK parent support group leaders conference.

We continue to be affiliated to the Down’s Syndrome Association. We work closely with the local Parent Carer Forums to feedback views from parents of key issues affecting them. We have a presence at the East Riding Learning Disability Partnership Board. We participate in the stakeholder reference group for the local NHS neurodiversity service development.

Communication with parents and carers

Making sure we hear the issues facing parents so that we can properly represent their voices is very important to us. We regularly review and update communications and engagement action plan, and we have two parents on our board of trustees, ensuring that we are continuing to deliver services that maximise the benefit to the families we support. We send regular emails to parents, send a half-termly update newsletter to parents and communicate frequently via our social media channels and closed Facebook group. We send out a biannual survey for parents and respond to any feedback.

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Training

Our priority during the year has been to continue to offer a range of training for parents, schools, and health professionals.

One of our aims is to promote the awareness of Down syndrome and support successful inclusion. One of the ways we do this is providing training which is accessible to schools, parents and professionals working with our children. We minimise how much we charge for these courses to ensure no child is disadvantaged.

We have had a successful year delivering a comprehensive programme of training to over 200 parents and professionals. During lockdown and the ongoing pandemic we very successfully switched to delivering our training online via Zoom or Teams, managing to reach more education staff than ever before and have continued to deliver training in this way.

Advisory Teacher Nicola delivering online training via

We delivered 22 training course this year including: Introduction to Working with Teams Children with Down Syndrome; Maths using Numicon; Teaching Vocabulary; differentiating the curriculum, Supporting Speech, Language and Communication Needs, Developing Language and Reading, Growing, Changing and Keeping Safe, Working Memory, Coordination Difficulties, Promoting Positive Behaviour, Sensory Processing Difficulties. New this year was training on Social, Emotional, Mental Health and Wellbeing.

We organised training specially for parents on the Maths for Life programme, Signing and Toilet training

This year, we continued to develop our INSET training offer and delivered seven twilight training sessions on colourful semantics, coordination difficulties, language and communication, language for thinking, behaviour and signing.

Kate delivered training to Leeds University students about inclusion, parent voice and strategies to support children and young people with Down Syndrome.

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Fundraising

The work of Downright Special is only made possible by the generosity and efforts of many people who have supported us by awarding us a grant, raising funds, or donating goods and services. Our plan in this year was to continue to have a broadly based fundraising strategy, rather than relying on one type of income. The pandemic’s impact on community fundraising remained a risk this year and this was reflected on our risk register. Our targets for this year were: grants/trusts (69%), community (25%), training (5%) regular giving (1%). These targets are monitored at trustee meetings. Our continued focus on grants has reaped rewards in 2022, with successful grants received from:

----- Start of picture text -----
Grants Amount
The National Lottery Community Fund 9,547
People's Postcode Neighbourhood Trust 12,627
Scientific Laboratory Supplies 530
Hospital Saturday Fund 2,000
Help For Health 3,274
Barbara Ward Childrens Foundation 4,000
Joseph+Annie Cattle Trust 5,000
Arnold Clark Community Fund 1,000
ERVAS ( Dynamix friends Fund) 2,000
Greggs Foundation 500
Sir Jules Thorn 2,500
Rank Foundation 1,000
The Albert Hunt Trust 2,000
Hull Aid in Sickness Trust 1,500
Toy Trust 2,000
Garfield Weston Foundation 10,000
Two Ridings Community Foundation 2,000
Charles & Elsie Sykes Trust 2,000
Woodroffe Benton Foundation 500
Liz+Terry Bramall Foundation 6,000
TOTAL £ 69,978
----- End of picture text -----

In addition, this year we received £500 from the Asda Foundation and £500 from the Matthew Good Foundation . The Matthew Good Foundation also supported us by working with Big Picture Charity Films to make a new short film about the charity to be used to showcase what we do to supporters and to help welcome new families. The film will be completed and ready to be launched in January 2023.

Our income from grants met our target this year. Based on successes to date, we have once again invested £1,050 in paying for 30 hours of a bid-writer’s time to help us with our grant applications and paid for a further 30 hours to cover our needs in 2022/2023.

Our community fundraising & donations income saw a 2% increase compared to last year but was still 21% lower than pre-pandemic levels. We have continued to work very hard to try to replace some of the lost income through online raffles, auctions, encouraging families to take part in our Down Syndrome Awareness Week activities. We raised £10,026 during Awareness Week through families and friends taking part in a number of challenges, including a sponsored swim, yoga-thon, hair dye, bake sales, dance schools, Facebook donate buttons, Cookie Sale, Lots of Socks in schools and nurseries, donations and matched funds, raffles, sponsored walks.

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In 2022 we were Charity of the Year for Victory Leisure Homes , with our time as Charity of the Year for Yorkshire Rapeseed Oil coming to an end in March 2022. We are so grateful for the support.

Overall, our income this year increased by 4% compared to last year (from £104K to £108K), however we fell short of our income target by £8K. Despite the challenging circumstances of much of this year, we remain confident that we will be able fund the charity in line with our budget of £119k for 2022/2023 due to forecast grant income including an annual grant for £10,000 year for the next 5 years from the Matthew Good Foundation beginning in November 2022.

It is important to highlight we receive no statutory funding, and do not currently charge our parents or the schools and early years settings we support for the majority of the services we offer. The only charge was a heavily subsidised rate for school staff to attend training courses.

Every penny goes towards building a brighter future for children with Down syndrome and making a huge difference to their lives today. Our heartfelt thanks go to those who supported us by raising funds or providing goods and services between November 2021 and October 2022. These include:

Alex Abel Gosschalks Matthew Good Foundation Sandhill Garden Centre Café Ania Anulka Greggs Foundation Michele Ditchburn Sharon Mills Andy Scott / Harbour Energy Welfare Harris, Lacey & Swain Michelle Hardy Sogeti / Cap Gemini Arthouse Irwin Mitchell M L Tuffnell Song Bird Anndrina Bremner Joanna Harker Molescroft wines Spring Cottage Asda Kingswood J E Markham My Letterbox Creations Straight Manufacturing Ltd Barry Sayer Jennie & Emma Smith Movement for Good Sunshine Strummers Beechwood Care Home Jenny Ross Neil Findlay Suzy & Charlotte Braham & Dixon Judy Sugden Neil Polson Sweet Soft Play Bright blue Foods Julie Strong New House, Millers ( Gemma Wilson) Tesco hall Road Chris Coates Karen Cochrane Nicola O’Riordan The One Point Chris & Mille Rooks Kate Long Nisa Summergangs Road Toni’s Deli Christala Barrett Katie Bewell Patrington Primary school Total Flooring Elliott Mudd KCOM Paul Herrieven Victoria Ross Emma Vine Kerry Farmery Pauline Rouse HSBC (Business Fives event) Frieda Stokes Kingspan Access Flooring Pizza Pie Victory Leisure Homes Genesis nursery Krystian Nowicki R Allenby Yorkshire Rapeseed Oil Gillian Bowlas Leonardo's Roger Vine Giving Force foundation Lisa Bloomer Roger & Catherine Williams

Thanks also to everyone who:

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Financial Review

Income

Our levels of income saw a 4% increase compared to last year. This was mainly due to increases in grants (up 9%) due to our focus on this income stream. We are still to see our community fundraising and donations income increase following the devastating impact the pandemic had on community fundraising in 2020 and 2021. Community Fundraising and Donations were down 4% compared to last year.

We continue to fundraise ourselves with our eBay shop and income from sharing the use of our printer. Our campaigns for World Down Syndrome Day generated around £10,026 and we ran a number of raffles and auctions.

Fundraising from individuals taking part in sponsored events continues to play a vital role in securing sufficient income to run the charity, although income from this was much reduced this year compared to before the pandemic and we continue to look for innovative ways to encourage individuals to fundraise for us.

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Expenditure

In line with our increase in income our total costs increased as planned by 20%. Wages costs increased by 25% as we recruited a new deputy charity manager and the other salaries increased in line with the revised national minimum wage. Other cost increases which were unforeseen at the time of agreeing the budget was a 5% increase in building hire costs and accountancy costs increased from ~£1k to over ~£3k p.a.

We continue to invest in specialist resources and making bespoke materials which can be used in our education sessions or given to families and schools to support the development of the children. This year we had planned to make significant investment on our website but the £5k allocated for this was deferred to ensure we could cover the additional costs incurred as outlined above. We were pleased to be able to reintroduce a full programme of inperson social events during this year meaning these costs were back to similar levels to before the pandemic.

Following a review of the printer cost share charges to Bodmin road church, a one-off £2186 refund to them was required. We did however renegotiate our printer contract with our supplier KRL, meaning a reduction in costs for the next 3 years compared to the previous contract.

We are very grateful to the many individuals who purchased office supplies and specialist resources from our Amazon Wishlist, helping to keep these costs as low as possible.

We keep our costs as low as possible through gifts in kind from local businesses, such as reduced accountancy costs from Harris Lacey and Swain, employment law advice from Gosschalks solicitors, website hosting / telephony support from The One Point and many more. The One Point also very kindly donated their time free of charge to support us through a migration to Office 365 this year, thus updating our IT systems to help us work more securely and efficiently.

We are hugely thankful for the incredible efforts from our team of volunteers, who have enabled us to continue to be so cost effective.

A full summary of the accounts is appended to this trustees’ report.

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Looking to the future

Our plans for the next 10 years continue to be centred on expanding our range of services in line with the increasing age range of the children we support so we can continue to support their evolving needs and help them reach their potential. Our goal is to be able to support children through their secondary school years and beyond to further education and employment. We also want to ensure that we continue to be sustainable in the short term whilst we continue to deliver our core, current activities.

Some of our plans are:

We actively encourage as many people as possible to get involved in whatever way they can. If you would like to do something ‘Downright Special’, please contact office@downrightspecial.co.uk

Declaration

The trustees declare that they have approved the trustees’ report above.

Signed on behalf of the charity’s trustees

Lizann Lowson (Trustee)

Appendix: Unaudited Financial Statements

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