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← Upwards With Downs

2024-10-31-accounts

2 0 2 4

TRUSTEE ANNUAL REPORT AND ACCOUNTS

YEAR ENDING 31 OCTOBER 2024

www.upwardswithdowns.co.uk

Our mission is to ensure that all people with Down Syndrome, whether they are children or adults, are well supported in order for them to reach their full potential in life. We aim to do this by providing therapy programmes, social events, play opportunities, and support for parents and carers. We are also keen to promote awareness of Down Syndrome and change outdated ideas about the condition by educating, and providing information, to hospitals and children’s centres.

Introduction

We are a small local charity that offers support and guidance to people with Down Syndrome and their families. We are based in Harlow, Essex and cover Essex, East Hertfordshire and North East London.

How our activities deliver public benefit

All of our charitable activities focus on enabling children / adults with Down Syndrome to live full and rewarding lives within our community and are undertaken for the public benefit.

The Team

All Trustees have received a copy of the Charity’s constitution and guidance on Public Benefit from the Charity Commission.

Risk Management

Main risk identified is a loss of funding. In order to mitigate against this risk, the charity looks at applying for grants and to continue with our regular fundraising events.

A risk assessment is undertaken by Cristina and/ or Peggy for the UWD discos and the summer fun day. Any activity where our members will take part with a different provider, a discloser form is completed, but a risk assessment by UWD is not needed.

Charity Reserves

Outside of the restricted funds specifically used from any grants received, we do not have any allocated reserves. We ensure that we keep fundraising so that we can continue with activities we organise for our members.

Volunteer Contribution

Members and their family/ friends contribute to the charity by undertaking fundraising activities and assisting at specific events. We have been able to involve community volunteers such as a student working towards a social care qualification. Where volunteers may not necessarily be members, DBS checks are carried out.

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----- Start of picture text -----
Cristina
Lorraine Peggy Slade
Griffiths
WIlson Secretary/
Chair/
Vice Chair Trustee
Trustee
- r ~
Dawn Oakes Michaela Danielle
Committee Baker Nolan
Member/ Editor/ Treasurer/
Trustee Trustee Trustee
cc
Lisa Jason
Wealthall Wealthall Cheryl
Bidmead
Committee Committee
Committee
Member Member
Member
----- End of picture text -----

Note. Cristina made the decision to step down as chair in July 2024 due to personal reasons.

Lorraine was voted in as chair at the September AGM.

Summary of

Notable donations include:

income

Summer Funday

In July 2024 we held our annual summer funday at the Link in Harlow. This raised £3,369.30 (Amount from ‘Fun Day Takings’ and ‘Fun Day Fees’), with a matched funding of £500 from Halifax.

This year the fun day included a dog show, trampolines and bouncy castles, face painting and unicorn horse riding. Aswell as gift stalls and delicious food vendors.

We are extremely grateful to SP Locations Rental for the generous use of their marquees which help us hold our event. Thank you to the many companies who have given donations and to everyone who made this event happen.

Grants

The Charity does not have a grants programme and aims to provide most of its services free of charge to members. Where contributions from families are sought towards a specific service ie. Speech and Language therapy, the Trustees can decide whether to assist a family in difficulty by reducing or waiving these temporarily.

We have been fortunate to receive a grant of £5,000. This grant was awarded in September 2023 from the Harlow Recreation Trust (£3,642) and the Maypole House Charitable Fund (£1,358), which are administered by ECF. This grant was to provide members and their families with a short activity break to Magdalen Farm in Dorset.

80’s Disco

June 2024, Lorraine arranged an 80’s night at the Link in Harlow, to raise money for UWD. This evening was a success.

Donations

We are very grateful for the many donations, large and small, from various sources totalling £5,365.35.

Merchandise Sales

Through the skill and hard work of some of our members we have made takings of £458.09 for products which are hand-made. This is less than the previous year as they are made by parent volunteers. The expenditure figure on merchandise is £165.13; however this includes decorative items made to raise money at fundraising events, discos and gifts for our supporters.

Community Support

We are very grateful to the Great Parndon Community Association whose venue, The Link, is used for discos. Their staff are extremely helpful and without them we wouldn’t be able to carry out our large fundraising and social activities.

We are grateful for the continuing support of McDonald’s in Harlow which supplies catering equipment and some food for our events. to local companies which support us through matched funding, sponsorship and donations of items for raffles and prizes, particularly Halifax (Lloyds).

We are also very grateful to the Treehouse Children’s Centre in Harlow which accommodates the preschool children’s group, the speech therapy sessions, and various sundry meetings, for no extra cost; and its staff for their invaluable support and advice, and the training opportunities they give to our volunteers.

Main Activities and Expenditure

Specialist Teacher

Our Specialist Teacher provides the following service:

Speech and Language Programme

Our main expenditure in the last financial year has been the provision of our Speech and Language programme for fifteen of our preschool/ school-age members. Each member receives up to an hour of speech therapy each week during term time, delivered by trained assistants who are supervised by a qualified Speech and Language therapist from The Owl Centre.

The outlay in training and fees was £9,746.45, and we have charged a small fee for each child per session. The grant received in 2023 from the Essex Community Foundation has helped tremendously towards this cost.

The expenditure for the year was £4,894.40. Parents/carers pay a small fee towards the service and schools have paid an agreed fee, both of which come to £1,650.00.

The service from the specialist teacher is filling a gap where there is currently limited to no service. The specialist teacher works in collaboration with Speech therapists from both Provide and our own therapists to ensure the children are working on the same focus/aspects of their development. Supporting parents/carers with the strategies that are being used at school to ensure continuity across home and school.

Private Physiotherapists / Speech & Language Therapists

At the end of 2022, we invited Physio Goals 4 Kids (A highly recommended company providing private physiotherapy) to come along to our Preschool Group at the Treehouse centre in Harlow, to chat to members and assess the children. The parents that attended that day were very impressed with their services.

Physio Goals 4 Kids assess children for any physio needs and complete a report which can be used to help with EHCP or DLA applications. They can also attend schools to carry out their service.

They also offer private speech and language for the younger children at their centre in Dunmow.

The fee for both Physio and Speech and language appointments directly with Physio Goals is £77.00 however, the charity decided to fund 50% of this charge if any members had taken up this service outside of Upwards With Downs, for the first session only.

It has been agreed that once a month, a member of staff from Physio Goals will visit the preschool group at the Treeouse Centre. Physio one month and SALT the month after.

This year 2 members had made use of the 50% first session with Physio Goals.

Experienced Advisor - Louise Chaffe

In February 2023 the committee decided to bring experienced adviser Louise Chaffe into the charity. Louise can offer assistance with completing benefit forms, blue badge applications/renewals and she can take the pressure off of the application process and gives peace of mind that any available benefit will be looked into. This can be completed in the comfort of our members homes or Louise attends the TreeHouse Centre on selected Thursdays. Louise invoices members directly for any assistance with forms/ renewals.

Louise organised the charities summer funday and also regularly updates the UWD website. The cost this year for this service was £720.00. (Costs under ‘Cost of Funday’ & ‘Website Costs’.

Magdalen Farm

The Essex Community Foundation provided a grant which enabled UWD to offer a highly subsidised trip to our members and their families. This year the committee agreed that the member with Down Syndrome would go free. Adults and children over 2 will be £125 per person. Families would be able to pay in 2 parts or in instalments. This cost included 3 nights accommodation, food, soft drinks and activities. There were 7 families who attended this event and thoroughly enjoyed their time at the farm.

Magdalen is an 132 acre organic working farm on the banks of the River Axe where Dorset, Somerset and Devon meet. The activities the members and their families were able to enjoy :-

Canal Boat Trips

We were able to provide 10 canal boat trips with Canalability in specially adapted boats to members and their families. These trips are always very popular. This cost £1,818.00.

Swimming

Members who have been able to access swimming lessons have continued to be subsidised for a total cost of £2,319.81. This year 9 members made use of this subsidy.

‘Swimming can benefit children with Down Syndrome in many ways, including physical health, cognitive development and social skills. It can also help with self-perception and positive behaviour changes’.

Disco

This is a regular event sometimes themed, enjoyed by all our members to which they bring their families and friends. It is a great social and family event for all ages and all abilities.

The disco expenditure was £3,271.52 which includes the cost of hiring the halls. This year we received takings of £2,124.23. The primary purpose of the discos is to provide an opportunity for a social event for all our members.

‘The aquatic environment can be less stressful on joints because of reduced gravity’.

Contact Us

Horse Riding

The Charity organised a horse riding taster session with Barnsfield Riding School for the group in 2022. After this event, the committee decided to offer a subsidised discount if members joined a horse riding school. 4 children have made use of this subsidy this year totalling £309.00.

‘Because the horse riding gently and rhythmically moves the rider’s body in a manner similar to a human gait, riders with physical disabilities often show improvement in flexibility, balance and muscle strength’.

Registered Office : 47 Lodge Hall, Harlow, CM18 7SX

Country of Registration: United Kingdom

Charity Number: 1158649

Cristina 07733392064 Lorraine 07305517459 Peggy 07834320222

Preschool Group

Lorraine runs the preschool group which meet once a fortnight during term time at the Treehouse Children’s Centre. Most weeks entertainment has been organised for the children to enjoy, such as The Little Alice Company, Sound Right Phonics, or a visiting professional (a speech and language therapist, occupational therapist, physiotherapist), who is available to work with the children and advise the parents / carers.

Website : www.upwardswithdowns.co.uk Email Address : upwardswithdowns@hotmail.com

This group is a very valuable resource for new parents (and sometimes prenatal parents) as they are able to support each other and exchange information and tips. The parents also continue to support each other through a Whatsapp Group.

The expenditure for the preschool group was £814.00.

Feedback from Parents

Being able to meet up at the park was a highlight for me, even though Issy didn’t stay for long. She can’t tolerate formal groups or noisy settings (yet) so something loose and fluid was lovely. We don’t go to anything, so this made me happy. Also just this space that puts us all together is a huge emotional crutch!

I would like to mention that the charity helped me to love Oliver. Honestly, it was hard for me to bond with him. I found it useful to get information about medical professionals, how to contact them and to find out who can make particular referrals. We also love the events. Especially discos and 360 soft play.

On behalf of me and my family, I want to say thank you so much for everything you do for all our families. I am a little further along in the journey than some. But I couldn’t have done it without you lovely people. What you offer and what you’ve achieved is amazing. To all the wonderful mums who help a lot, thank you. Special thanks to Cristina, Georgina, Peggy, Lorraine and Dawn.

The farm trip has been a revelation to our family. When we usually go away as a family we have to worry about whether things will be in place to enable our daughter with Down Syndrome to enjoy herself. None of these worries existed here, where both the staff and fellow families understood what had to be in place. Very rarely are holidays the relaxing experience for our familes but this one it most certainly is.’

As opposed to foster carer, I work with a number of children with complex needs. I’ve also had the privilege of supporting a child with Down Syndrome. This charity has been a lifeline for support and understanding. Not only have we been able to access loads of professionals that we wouldnt normally have access to in the under 5 preschool group. The charity works with a wide range of children and needs helps to support them in everyday life through holidays, day trips out and personal and physical care. I also have a child with Down Syndrome and she has been able to form lovely friendships with children and access hobbies and fun discos. I dont know where I would be without this charity supporting both my child and our foster child. Its an absolute pro to be a part of a wonderful family environment supporting children with disabilities.

UWD has been a great presence & support for us in many ways: socially, intellectually, emotionally, financially. There’s many ways the charity helps us, all of them invaluable. For now I’ll focus on a couple of actual experiences. The financial support they give to swimming lessons is significant for our family. Research recently published shows the immense value of swimming training for folks with DS in terms of health & of course there’s the social & safety benefits too. It is hard to find a disability swimming provider & 1:1 lessons can be costly. UWD knows this & is helping to make these lessons possible for my son. Through UWD we are able to access an Education Consultant. It is easy to access the Ed Consultant, this access is so helpful. She has joined some meetings at our request, I know my son’s school is deeply grateful for her input. I don’t know of any other DS charity that provides this kind of direct, personal, personable & empowering support around what can feel a difficult & overwhelming part of being a parent-carer for any child with a disability.

Thank you for creating such a relaxed safe space for all. (Feedback from the Valentines Disco.)

Even though Jack is now at school i’ve appreciated popping in to the preschool group on occasions for a cuppa and a chat with Mumma’s who ‘get it’.

The farm trip has been an automatic diary entry for us since our first trip. It’s just an easy and active few days for the whole family, amongst people who intrinsically get it, and is why all holidays are not as easy. It’s an easy time to catch up with friends and make new friends.

Indèpendent examlnerfs report to the t￿￿te•S d Upwards wlth Downs tharfty (the I report to the trustees on rny examlnatlon of the accounts of the Trust for the year ended 31 October 2024. As the charity trustees of the Trust you are responslble for the preparatlon of the accounts In accordance wlth the requlrements of the Charltks Act 2011 ('the ACY). I report In respect of my examlnatlon of the Trusys accounts carrled out under sectlon 145 of the 2011 Act and In carrylng Out my examlnatlon I have followed all the appllcable Dlrectlons 8Nen by the Charity Commlsslon urKler section 14515)(b) of the ACL I have completed my examlnatlon. I confimi that no materfal matters have come to my attention In connectlon wlth the examlnatlon 8fvln8 me cause to belleve that in any material respect: 1. 4ccountlry records were not kept In respect of the Tntst as requlred by sectlon 130 of the Act: or 2. the accounts do not accord wlth those record I have no concerns and have come across no other matters In connectlon wlth the examlnatlon to whkh attentlon should be drawn In thts report kn order to enable a woper understanding of the accounts to be reached. ned: CL¥LV Name: thrlstopher Walls Relevant profesthrkil qualffication or membership of professional bod5es Ilf any): ICAEW Address: 4 Western Avenue. Gidea ParK RM2 6EH Date.. 27 Awst 2025

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