## **Sparkles: Supporting Children with Down’s Syndrome: Annual Report 2024** ## **Charity number: 1168036** ## **20[th] January 2025** The trustees are pleased to present their annual report together with the financial statements of the charity for the period ending March 2024. ## **Chair of Trustees report** Between March 2023 and March 2024, Sparkles assisted more than 42 children with Down’s Syndrome in Buckinghamshire and the surrounding areas. - 19 children benefited from weekly specialised speech and language therapy, - 34 received termly physiotherapy, - 14 received termly occupational therapy. - 15 children had access to our EHCP support before it was suspended. ## Fundraising: An immense thank you from the trustees for the committee and the families who have been involved in fundraising this past year. As well as all those who have sponsored events, given donations and to the companies who have provided grants. ## _Big Step Forward_ The Big Step Forward event took place on June 24th, 2023, at Ashridge Woods. Many families participated enthusiastically and raised sponsorship funds totalling £5520. ## _Cake Sales_ In October, Sparkles successfully held a cake sale. Parents decorated the cakes with Sparkles logos, and thanks to their exceptional baking talents, we raised an impressive £1993. ## _Annual Christmas Party_ In December 2023, we hosted the Sparkles traditional Christmas Party and raffle. The event featured interactive storytelling, games from Story Box, and Christmassy stalls offering cards, cakes, and a toy tombola. In total, £3198 was raised. ## _Gala_ In March Sparkles held a gala at Ickenham Golf Club with great success, raising £2,311.43 through the auction. We featured amazing prizes, including Alton Towers tickets, a stay at the Cumberland Hotel, a stay at the Grosvenor House (Marriott) Hotel, a Teepee Party, and many more exciting offerings. 1 ## _Other Donations_ Sparkles is grateful to have been selected for the Tesco Community Grant, which raised £1000. We would also like to extend a huge thank you to our other donors this year, including Liberis Charity (£1,500), the Steeple Claydon branch of the Coop, which raised £1021 in October 2023, and the Mencap Amersham and Chesham branch (£1,000). ## EHCP support package The Sparkles Education and Health Care Plan (EHCP) package aims to provide financial support and assistance to families of children with Down’s syndrome. Sparkles has worked closely with Emma Hopkins Consultancy and their support ensures that children receive the high-quality EHCPs they need for a successful transition to school, helping families navigate the stressful EHCP process. The program also aims to reduce the need for families to go to tribunals and provides reports and evidence that can be used in tribunals, reducing costs for families. As a result of the EHCP support, families have been able to obtain much better EHCPs for their children. The final plans include clear provisions for therapy hours, specialized support, staff training, and specific techniques for children with special needs. The support offered by Sparkles has led to amazing outcomes for children with Down’s syndrome. It ensures they start their school life with high-quality, specialist therapy at the recommended amount. The plans are legally binding and reflect the appropriate provision of therapy as agreed upon by the local authority when challenged. However, due to recent financial constraints, we have regrettably had to postpone this support package to our families; until we are in a more secure financial position. It is in our hope and in our three-year business plan to reintroduce this support package to our families once we are certain we can prevent any adverse impact on Sparkles' financial stability. ## Our Vision Our vision is that all children with Down’s syndrome in Buckinghamshire and the surrounding areas throughout their early years, have the opportunity to reach their full potential speech and language therapy, physiotherapy and occupational therapy. Sparkles has previously been able to provide families with ECHP support for children of school age, this support is currently on pause. Our vision is to restart this package, during this threeyear period for families within Buckinghamshire and surrounding areas. 2 ## Our Mission Our mission is to provide children with Down’s syndrome with responsive, high quality therapeutic support that enriches their lives and supports their families. ## Our Plan _Our plan for this year_ We will ensure that Sparkles has all appropriate policies in place and that they are all up to date. We will prioritise establishing external funding streams to ensure Sparkles is a financial sustainable service. We will ensure Sparkles have a detailed grant application template in place and ensure that 50% of our income comes from external sources. We will concentrate on getting at least 40% of existing parents pro-actively engaging in some way with Sparkles. We will complete a detailed evaluation of our services, both to allow potential new funders to be able to see the value of our work, and to ensure that we are providing the best quality and use of our resources. By the end of year 1 we will have a six-monthly evaluation structure in place. _Plan for the following two years:_ By May 2027 Sparkles will have fostered new links with outside groups and professionals, to ensure the parents of every child born with Down’s Syndrome in Buckinghamshire and surrounding areas, is aware of our services. We will be receiving 50% of our funding from external sources and will have regular 6 monthly evaluations of our services. Our services will be reliable and sustainable with good succession planning for the board and Trustees. During this three-year period, we will reestablish our EHCP support package, and introduce a yearly speech and language summer camp for our Sparkles families. Reintroduction of our EHCP support package for school aged children, once Sparkles in back in a sustainable financial environment. When we are in a financial position to do so, Sparkles will re hire a speech and language assistant, so that we are not over reliant on just the one therapist to cover both sites. We will prioritise increasing our contacts amongst other groups and professionals to ensure that the parents of every child born with Down’s Syndrome in our target area, knows of our existence and the support we can offer. By the end of year three we will have a firm succession plan in place for the following three years. 3 We will look at introducing a yearly speech and language summer camp for current Sparkles families. ## Our objectives By May 2027 Sparkles will have fostered new links with outside groups and professionals, to ensure the parents of every child born with Down’s Syndrome in Buckinghamshire and surrounding areas, is aware of our services. We will be receiving 50% of our funding from external sources and will have regular 6 monthly evaluations of our services. Our services will be reliable and sustainable with good succession planning for the board and Trustees. During this three-year period, we will reestablish our EHCP support package, and introduce a yearly speech and language summer camp for our Sparkles families as well as regular meeting for families without a fundraising objective. ## _Strategic Objectives 2024-2027_ 1. To identify the number of families of children with Down’s syndrome, in our target area, not currently receiving our services and make them aware of them by working closely with other organizations and professionals. 2. To evaluate our therapeutic services to ensure we are providing appropriate, high-quality services, which make the best use of our resources. 3. To establish external funding streams to create a financially sustainable service with funding from external sources composing 50% of our income by the end of year one. 4. To improve internal communications with parents and families to engage more parents to be more actively involved in Sparkles and enable annual succession planning as children leave Sparkles. 5. To improve our marketing and communication to support our objectives, by continuing with our current social media plan as well as introducing fresh marketing materials targeted at parents and at professionals. ## Current Therapies Currently Sparkles provides families with Speech and Language Therapy, Physiotherapy and Occupational Therapy. ## _Speech and Language Therapy_ Our SALT sessions occur at Children's Centres in High Wycombe and Aylesbury. Each session is 45 minutes long, weekly during term time and are held in groups of no more than three children and with their parent/carer. Children with Down's syndrome will usually experience challenges with communication to varying degrees, including receptive (understanding) language and expressive (speaking and composing sentences) language skills. Carried out by specialist 4 speech and language therapists, the sessions are based on Makaton: a system designed to support spoken language where signs and symbols are used alongside speech, in spoken word order. Sparkles speech and language therapy focuses on helping our children to talk, but also covers the essential skills needed to communicate effectively. The sessions are designed to engage our members from a young age and include: music, songs and games; listening and comprehension; turn taking; picture and word matching; lip seal and tongue control exercises; phonics; and combining words and sequencing sentences. These sessions are provided at no cost to our families. Due to the lack of speech and language therapy available on the NHS and the inconsistent level of provision and that Sparkles are a lifeline, easing frustration by enabling communication and helping parents feel supported. ## _Physiotherapy_ Sparkles offers 3 to 6 physiotherapy sessions each year with a specialist practitioner, depending on the age and needs of the child. The sessions are 45 minutes long, one-to-one with the child and parent/carer, and based in a children's physiotherapy clinic in High Wycombe. Children with Down’s syndrome can have low muscle tone and hyper-flexibility, which can make mastering gross motor skills harder. Delays in physical development are not uncommon. Targeted physiotherapy helps our children achieve major milestones such as sitting, crawling and walking. The sessions are individually tailored, fun and child-centred, enabling children to reach their full potential and grow with confidence. Parents are provided with exercises and activities to follow at home to support their children. These sessions are free to the families, except where late cancellation fees may apply. ## _Occupational Therapy_ Sparkles, offers 3 to 6 occupational therapy sessions with The Pace Centre, each year, depending on the age and needs of the child. The sessions are 45 minutes long, one-to-one with the child and parent/carer. With Pace we are working with a team of experienced occupational therapists who are highly skilled in assessing and treating children with learning, behavioural, sensory and developmental difficulties. Some children with Down’s syndrome may experience sensitivity to certain food textures, sounds, bright lights and unfamiliar situations, resulting in distress and behavioural issues. Sparkles occupational therapy focuses on these and other sensory processing issues, based on a theory known as Sensory Integration: how our brain receives and processes sensory information so that we can do the things we need to do in our everyday lives. 5 This therapy is currently not offered by the NHS. The sessions give parents a greater understanding of sensory processing issues experienced by their child and strategies to limit their impact on their development and day-to-day life. These sessions are free to the families, except where late cancellation fees may apply. ## Achievements This year’s achievements include: - The continued provision of speech and language therapy, physiotherapy and Occupational therapy. This is a huge achievement, given the global pandemic and the lockdown restrictions we have all faced and are still recovering from. - The continued support for children in their transition to primary school. Children are provided with an intensive block of speech therapy over the summer holidays before starting school. The therapist liaises with schools to create a bespoke therapy package in order to ease the transition. This includes familiarisation with vocabulary relevant to the school environment and teachers, as well as the first topic to be covered at school. This is followed up by two visits to school during the first year. Teachers and teaching assistants have reported this to be a valuable resource that helps them support the child better and better understand their needs and abilities. Physiotherapy and Occupational therapy sessions also continue to be provided in the first year of school to ease the transition and help children settle into their new environment. - To support families through the EHCP process by providing expertise and a representative to liaise with the local authority in the process and by reducing the cost to families by funding private assessments and consultancy fees. This support is now on hold until further notice. ## Financial Review A review of the charity’s financial position at the end of the period. Cash reserves are important to maintain a balance between spending and income and to ensure the continuity of essential therapies. The trustees believe that the ideal level of reserves as of 31st March 2025 should be at least £45,000 to cover one year’s worth of speech and language, physio, and occupational therapy for all current members. As of 31 March 2024, the actual cash reserves amounted to £27,871.94, which is significantly lower than the position on 31 March 2023 of £85,410.75. There was a net cash outflow of (£57,538.81) due to increased EHCP support, summer camp expenses, and the lack of grant income. Due to the current expenditure, the trustees have decided to defer EHCP support until our reserves reach £80000 or until we secure any grants or funding for this matter. The Sparkles 6 Lottery continues to support Sparkles, and we hope it will grow in participation. Based on the current reserves, cash resources, and fundraising plans, we are hopeful that Sparkles will remain financially stable and able to meet its obligations as they arise. ## Structure, Governance and Management ## _Governing Document_ Sparkles governing document is an association model constitution and the charity is a Charitable Incorporated Organisation (CIO) with voting members other than its charity trustees. ## Appointment of charity trustees (1) At every annual general meeting of the members of the CIO, 1/3rd of the charity trustees shall retire from office. If the number of charity trustees is not 3 or a multiple of 3, then the number nearest to 1/3rd shall retire from office, but if there is only 1 charity trustee, he or she shall retire; (2) The charity trustees to retire by rotation shall be those who have been longest in office since their last appointment or reappointment. If any trustees were last appointed or reappointed on the same day those to retire shall (unless they otherwise agree among themselves) be determined by lot; (3) The vacancies so arising may be filled by the decision of the members at the annual general meeting; any vacancies not filled at the annual general meeting may be filled as provided in sub clause (5) of this clause; (4) The members or the charity trustees may at any time decide to appoint a new charity trustee, whether in place of a charity trustee who has retired or been removed in accordance with clause [15] (Retirement and removal of charity trustees), or as an additional charity trustee, provided that the limit specified in clause [12(3)] on the number of charity trustees would not as a result be exceeded; (5) A person so appointed by the members of the CIO shall retire in accordance with the provisions of sub-clauses (2) and (3) of this clause. A person so appointed by the charity trustees shall retire at the conclusion of the next annual general meeting after the date of his or her appointment, and shall not be counted for the purpose of determining which of the charity trustees is to retire by rotation at that meeting. Reference and Administrative Details _Charity name:_ Sparkles: Supporting Children with Down’s syndrome _Registered Charity number:_ 1168036 7 _Charity’s principal address:_ 50 Scholars Walk, Langley, Slough, Berkshire, SL38LY _Trustees:_ Kirsty MacCuish Graham Smith Chair of Trustees Kate Broadway Bushra Maqsood Eszter Hegedus Treasurer 8 SZOUVOffdi Issl *untrJ)e lè4 XXJJ 'LZ pua JeaA $141 spunj 4SP? pua JeaA ISEI spun4 4se3 9V $puni uaamw waisueji sv (￿U0u￿edjrndM?8J Jo iaN u•￿A￿ Iqoi ieloi qns 14 IUaU4SaAUI PUE laÈSV PV tr9L'*8 iejw qns 016'Z 098'S 056. dutEJ jr￿ul1)I rK>Atd lJ*iio'i Inwo? 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