Downright Perfect Down's Syndrome Communlty Group TRUSTEES ANNUAL REPORT From 1 APRIL 2024 to 31 MARCH 2025 Contents Charily Details . Structure, Governance and Management............................................................................. Charitable objectives . Public Benefit Statement........................................................-.............................................. Aims..................................................................................................................................... Achievements and Future Plans........................................................................................... Parent Support.. Hospital Packs......................................................................................... Parent Support.. Infomiation sessions & Peer Support Workshop$.................................... Parent Support.. Counselling Grants.............................-......................... Events.. Pre-schoolers & Saturday Club............................................................................ Events.. Day trips................................... Events-. Friends & Family... Community Engagement & promoting inclusion.. Education & Wider Community. Community Engagement & promoting inclusion: Medical.................................................. Supporting Development.. Financial Grants....................................................................... Supporting Development.. Early Developmerrt Groups...................................................... Feedback.............................................................................................................................. Financial Review Policy on reserves................................................................................................................ Declaration_.........................-................................................-............................................... ANNEX.. FEEDBACK........................................................................................................... ANNEX. STRUCTURE....................................................................................................... 11 Charity Details Charty Name." Downright Perfect Registered charity number 1200893 Registered office". 38 Russel Road. Boumemouth, tk)rs&t. BH10 7HD Bankers." C(Foperalive Business Bank Structure. Governance and Management Downright Perfect was registered as an unincorporated association in 2014 registered under numter 1159214. An application w35 made to convert the Charity lo a CIO Foundation and on 2 November 2022 a new charity number 1200893 was registered, il is govemed by a Constitution. On 5 April 2023 the assets of charity 1159214 were transferred to new CIO number 1200893. The accounting period for the old charity. 1159214, ran from 28 Juty to 27 Juty. The xcounb'ng period for the new charity, 1200893, runs from 1 April 10 31 March. The current trustees a￿-. Emma Louise Cross Gillian Mary Clark Patience Margaret Saunders Claire Oakley The board meets as and when required durin9 the year bul Communicates regulady eteclronically lo discuss matters be￿een meelin9S. All of the Iruslees give their voluntarity and none received any benefit other than that which any other beneficiary would receiv8. Alongside the trustees the Charity has day lo day support from a volunteer, Katherinè Clark Sevilha, who acts as the Charities Clerk to Trustees assisting with all mallers including administration. The Charity has also built up a team of volunteers who assist at events and a volunteer who makes baby blankets for our New Parent Hospilal Packs. The trustees are continuousty seeking input from ils beneficiaries lo help in their decision making and have done this through seeking feedback and idea$ in different formals such as social media, evaluat￿￿ forms and general discussion at events such as the re9ular Pre-SchooleTS groups. The trustees remain flexible in their planning and have adiusled the focus of their efforts throughout the period as the needs of the Charity's beneficiaries have become apparent. An example of this is the ¢Jevelopmenl of parenvcarer onty events as the need for parents lo build Telationships wrth each other in an environment where they were not also canng for theii children became apparent. Charitable objectives The object of the CIO Js to rel￿Ve the GhaNiable need5 of children and young people with Down's Syndrome and their families and earers in Dorset and the surrounding areas by the provision of, bul not limrted lo, advice and support reCreatIc￿￿1 and srKial events and facilitsling access lo therapies and resources. Public Benefit Statement In considering its strategy. aims and objectives, Oownright Perfecys trustees have pard due regard to the Charity Commission's general guidance on Public Benefft. The tsustees are satisfied that through its prrmary activities the charity provides Klenttfiable benefits consistent wrth its charitable objects. The trustees do not consider that these actrvib.es kY0dU￿ any rdentifiable detriment or harm. The trustees are satisfied that any private benefit is incidental to its public benefit activity. Aims Downright Perfect's aim is to support children and young people wth Down's Syndrome and their families in Dorsel and surrounding areas. As our understanding of the needs of our members has grown, the trustees have developed a structure to maintsin locus on the areas of supportthe Charity has identified and agreed to support. This structure has also helped us to identrfy where our focus for strengthenin9 our support should be_ A Gopy of our structur& can be found at Annex A. Achievements and Future Plans Parent Support.. Hospital Packs Hospital packs continue lo be distributed by the matemty units at BoumemouthlPoole, Dorchesler and Soulhamplon and we have had a numberof new rrEmbers join the chanty as a re5uII of having received these packs which demonstrates lo us that they are an effective means to reach out to parents when they have their baby. This year we have been working very hard lo build our partnership with University Hospitals Dorset and one of the results of this has been an increased awareness affKtng stsff of the Hospilal Packs which ensures that they are been properly dislribuled. Over thè next year, we will be exploring how was can strengthen out relationships with the matemity ils in Southampton and Dorchesler which will in turn ensure that packs are being given out by staff. Parent Support.. Infonnation sessions & Peer Support Workshops Inlfodijced this year, we have held a second online session on early intervention and support with a focus on speech and language development presented by Downs Syndrome Education International attended by 34 parentslprofessionals. In October 2024 we ran our second parent onty peer support evening which look place in a ceramic painting cafè. 11 was attended by 12 paienlslcarers and provided an opportunity lor attendees lo tslk, connect and seek advice in a calm environment when they were not also caring for their children. This partieular event worked well with nkHny attending asking when the next one will be and those who could not allend expressing interesl. After the success of our parent onty peer suppNt workshop and the interest expressed by members in this type of event. this year we are exploring other parent only events including a parents wellness day, Parent Support.. Counselling Grants Over the last couple of years, the need for formal counselling support for parents has be¢ome increasingly apparent. The waitJi$1s for services through the NHS are extenslve and the cost of private therapy is prohibitive for most. Accordingty, we have launched a Program￿ of grants lo assi51 with the costs of accessing counselling. A grant from Co-op Community Grants has been received for this purpose and is Irealed as reslrrcted lunds. Events: Pre-schoolers Oui Pre-schoolers groups are a fundamentsl part of the seNices Downright Perfect provides creating opportunities for parent peer supFKtrrt community building and for children to benefit from playing with each other Is a safe and judgement free environment. Attendance al our groups varies between 6 to 20 children including siblings and most attend regulafty. We have run 19 Pre-schoolers sessions in this period. These sessions allow an hour of free play where children can play together and parents can provide each other with peer SUPFX)rt. We then have half an hour of more slnJclured lime when we do a group story wrth visual aids and song lime where each child gets to choose a song for the group lo sing using a props representing nursery rhymes. Events.. Day trips This year we held our summer trrp at Highmead Communty Fami attended by 40 people and Saturday Club sessions_ These sessiorTrs noTmalty lake p￿ce during schLK)I holidays andlor at weekend5 SO that more people can attend including Dads who we are finding attend S￿n[fiCantIY less than Mums. These days out are intended to create opwrlunities whth are member5 may not othe￿iSe have or struggle wFth. Next year we will continue lo explore differer¢l types of events as we learn what works besi for our members. We will also repeat the events that we have done previously that have worked well as we know that familiar venues and set ups are beneficial lo our members. Events.. Friends & Family We believe that il is important lo involve wider famity and friends in our events where possible. We are aware of srtualions where the chikl's diagnosis has not been widely accepted within the wider family and where issues around language and understsnding of Down's Syndrome has caused problems within families or friendships. It is our intention that by inviling wider farnily members and fnends lo attend some of our even15 11 will help promote inclusion and understanding across all of the adults and other children in their lives. In this period we have held our annual Chnstmas party and a 14Vorld Down's Syndrome Day party in partnership with Shine21. TTuslee$ have decided not to run a large Wortd Down's Syndrome Day paty in 2026 to enable the trustees lo expk)re opportunities for engagement with schools and medical settings around the day. Community Engagement & promoting inclusion: Education & Imder Community Before the start of the Autumn school term in 2023 we launched a 'School Book Pack, project which involved our members nominating their child's school to receive a pack of fiction books which feature characters with Down's Syndrome. The aim of this projecl was lo ensure that there are books available in all of our members classrooms with characters like them and to provide teachers with a basis on which to discus$ Down's Syndrorrt with other pupils. With the pack we also prOV￿ed leaflets on the importance of using the correct language around Down's Syndrome and a poster for their stsff room on the same. We also included a letterwith an offer for us to deliver a talk to staff on key 155ues surrounding Oown's Syndfome. In March 2025 we were delighted to be asked lo go inlo a local secondary school. who had chosen us as one of their charities od the year, to give a talk in an assembly lo students about Down's Syndrome and the charity. The brief talk was well received and the opportunity to raise awareness of what life today with Down's Syndrome is like to pupils with no knowledge of the facts around the condition felt like a wonderful engagement opportunty. We plan to explore ways that we can do rn0￿ in this area. Community Engagement & promoting inclusion: Medical At the end of our last period we oblained a commitment from the Head of Midwtfery al University Hospilals Dorsel for them to engage with us and for us to provKle training to staff on an annual basis. Over the last year we have completed a numbers of Walk rounds, of the UHD malemity unit as an opportunty to meet stsff and raise awareness of the charity so that they know they can 5ignposl new parents lo us. We are extremety proud to have deliveted 2 very well attended training session to midwives at UHD which are going lo become an annual session foi new wives. These 5ession5 discuss language, ouldaled views on lrfe wrth down's syndrome and a parents perspective of receiving a diagnosis. On 21st March (Worfd Down's Syndrome Day) we featured on BBC South Today for our partnership working with UHD. This year we have also done a walk around of the paediatric unit at Poole hospital and a talk to SouthamptOf7 Hosprtal Cardiac unit Supporting Development.. Financial Grants Another key element of our support services is the offer of finanaal grants to wembers to assist wrth the costs of accessing specialist ￿SoUr￿ and therapies. In this period the trustees agreed to a sum of £300 per grant and 8 grants have been given in this period. This year we intend lo continue offering these grants which help parents to support their child's development and are incteasing the sum per grant lo £350. Trustees will review the level of grant and ¢oTrsider if the level can be maintained or increased. Supporting Development: Early Development Groups We eontinue lo explore options as to how we can better support our members development, especially around speech and language. Our trustees do not have the necessary experiencel qualifications lo lead these groups themselves and we conlinue to seek a professional partner to WOTk with to increase the support we offer around earty develOprr￿t. Feedback We continue lo invrte our members to give up feedback on the service we provide and invite input on ways we can increase the support we offer. Some examples of the feedback received this year can be found at'Annex'. Feedback,. Financial Review The accounts filed are for the period 1 April 2024 to 31 March 2025. en deciding upon the financial strategy for the year, the tnJstees reviewed the feedback received Irom members, the types of support that we want lo ensure that we can continue to provide and th& ways in which we want to increase or improve our $er¥ices. Having regaid to the above considerat￿n$, the trustee$ set a budget set 8 budget antscipating a c.£7k loss", however, our acltjal loss has been £1k. The trustees have been delKJhted that income of £11k which has been a result of a number of successfvl grant applicatK>ns and the generosity and support in ftjndraising efforts from the charities benef￿larieS. Policy on reserves During this year the Charty has maintained a Reserves Policy explaining that reseNes of £18,400 are kept being the basic costs of providing our core services for 12 mnths. The Charity is currently holding £28,292 being £9,892 more than our cu￿nI Reserves Policy. In view of our plans to improve our development support, wh￿h will involve set up costs and costs of regulady paying professional Iherapisls. the trustees have taken a ¢on¥erYative approach to SK)ending in anticipation of these increased costs. Once the trustees know what these costs will be. the Reserves Policy will be reviewed to reflect these increased operating costs and the reserves position reviewed generally. Declaration The Iruslees dgclare that they have approved the trustees report above on 7th July 2025. Signed on behalf of the chanty's trustees.. Signature.. Signature.. FLtII namÈ.' Emma Louise Cross Full name" Patience Saijnders Position.. Chair of Trusteeg Date.. 7" aols Posrtion.. Trustee ANNEX: FEEDBACK What do you believe the charity is doing well and what could the charity do differently to better support your child? Excellent at raistrng the prolile ol the ¢harrty and educatsng medleal staff Also great at organising Special events and PToviding a wide ran9e of activities. Parttcularly sknjod al supwting ￿￿nger ehildren with DS Perhaps covld provide a few more activities for oldef children The regular preschoolér groups are a great chance to meet with other parenis. $upport and develop friendships The btg events. like the Christmas party and WDSO party ère Intredible- you put so much effort In to make sure Ihèy are smooth, accessible and alfofdablt. DP are gupporting local famil￿$, tspec1811y wilh having the preschoolws group to welcome families when baby Ilrst aifives and also advoealin9 lor change heallh care profes$ionals. A lot is happening and I don't know how you all do Jt! I like that the charity support¥ matefnily servic•s w+ih the dellvery of 8 dlagnosii. And would love It If théy could branch ¢)Ut to offèr support lo Paediaeirics Lols of support and help for new paierts ol babie> btyn with Oowns Syndrome. Lots of went$ fw more able ¢hll¢ren with Oowns charlty is very ereatlve and forward thinklng- it W￿ld bt nice ¢0 try and get old* children iogethw ltsr e¥eThl$ Wwking Wrth midwives and $ocl•l evènts for all ages and everythln9 els• viorkln9 With rnidwSvès and social events for all a9e$ and év•rything els* What would you like the charity to focus Its time and funds on? (select max of 3 answers) PaTEnl Icarer thrrnalion wor*... Parenll CarerOn￿ ano¢w... Fath￿y stth?l ever PiovkJiTrJ financkil gr8nts to me... Enwomeni IoGal medKal... Ellga9emeni wnh educab... Pre-5chrKJlers woups 21222%) o (0%) 616e.7%1 3133.3%) 4 IM.4%1 168.7%) 3133.3%) 1111.1%) What type of paronu carer only events do you p￿fer7 {select all that apply C￿lne InfO￿n8￿C￿ th8hops 6 ieA.7%1 In pgrson Intor￿lI￿ *tykshops 7 In.8%1 SO¢￿ evtnls whh in￿Mil QppMU￿1l•s to 181k to olher ￿... I'm not Inierestefj In ￿re￿￿(are1 6 ie6.7% Cw) never attend 8ny ewiis 8S 1111.1%) What has been your favourite event the charity has run? (select max 2 asnwers) Clrl*trnos D￿￿,$ Syndrm Diy P... Foreli S¢*￿1 ai Upton Ctyjnlr... Hwnithd Pwm Par¢niicarer Wllery ￿nun0W... Cminn Dano Saknd8y gro... prtv•￿ ￿mIng gessw 8t... WeWn8ts Pr¢fSue Bu EHCP 3137.5%> 2 IZ5%1 .oio%i 4150%) 2 (25%) o (0%) 1112X%I o io%) What type of events do you prefert (select all that apply) Indthi e¥Ènls -5 re2.￿) 81100%) Large part￿$￿1th ¢ntW*th) 3(37.5%1 Srn811 of