National Down Syndrome . Policy Group CHANGINGTHE NARRATIVE Natlonal Down S ndrome Pollc Grou Annual Re ort forthe eriod 1 Oth Au 2024 ust 2023 to 31 March
National Down S ndrome Polic Grou Contents Twslees. Reportforlhe perlodonded31 March2024...............................,,.,..........,.,,.,... Independent Examiner's Report........,.......,..,.....,,,.,..,,.,.. Recelptsand Paym8ntslortheperiodended 31 March 2024....................,..,..,..,.,..,,,... Slalemenlol Assets and Llabllilièsforihe yearend&d31 March 2024............................................,. Notes lo the FInancl Slatsmenls lor the period ended 31 March 2024...................
National Down S ndrO Pollc Grou Truslees, Re ort and Financial Statements eriod ended 31 March 2024 Introductlon We are pleased to produ¢9 the inaugural annual reports and accounts for the National Down Syndrome Policy Group INDSPGI- Although the group has been in operation for several years now, we appli8d lor and were granted charitable status in August 2023. The past two years in partlGular, have been very busy for the NDSPG following the enacbment ol the Down Syndrome Act In 2022 and many ol our rnembers and Iruslees have bean engaged with policymakers about the lom and content ol the guance that underpins the Act. Th8 recent Parliamentary e18ctions hav8 created a temporary pause of that wo, but we look fOard to engaging with the new rninislers lo ensure the successful publlcalion ol tho guldance. Wg contlnue lo eyand our Advisory Group fieorkS and are delighted at the formation of dedicated groups in Cheshire and Cornwall., we look lomard lo the creation ol addillonaS groups elsewher9 in the UK. This report prOV8S details on our aims and highlights some of tho aclivilies undertaken lo achieve them. In addition, a5 Chair, l am hugely grateful lor the dedlcaled and passlonate Work carried out by all of our group members, who tlrelossiy work to improve lh8 INes ol people with Down syndrome. Objects To reliev8 the needs ol people wllh Down syndrome, their parènts, lamilbs, and carèrs, in England. Scotland and Wales, In particular bul not exclusively by.. Al The provislon ol forums to lacS1itale discusslon beeen p80ple with Down syndrome, organlsalions that represènt them, and organiSatn9 that provlde support, care, or seNices to people with Down syThJrom&, 81 The Gollalion and dlssemlnation of Inlonnailon and best practlce In the support ol people whh Down syndrome in accessing 88rvlce8, In paillcular, but not exclusively, in matsrnity care, healthcare, educadon, housing, soclal care and employment, Cl The provlslon ol support to Local Support Groups to facilitate closer neOrkIng and hdp Improve knowlèdge and skllls wlih Ihg alm of helping them be more effective in the work they do. Actlvltles We are delighted ihat the work of tho NDSPG has b88n supported by over 125 Down syndrome TegEonal and national organisalions and thousands ol Indlviduals. The NDSPG Is lurther supported by an Advisory Group consistlng of over 120 members who meet regularly and actively leed into tsur work. Thls Is the only pollcy group led by people with Down syndrome In Ihg UK. Over fts tlrst year as a ¢harltablo organlsatEon, the NDSPG has created addllional Advlsory Groups across the UK. Adwsory Groups dlreclly address the Ilrsl of our objects, and Ihey develop forums for adults with Down syndrome to galher-eilher in person or onlinAo disGUSS a wide range ol IopiGS. We have been actively working with Ministers, the Department ol Health and Social Care and the Department of Education to create guidance for the Down Syndrome AGI, whiGh is disGUSSed in more detail below. The NDSPG is th8 Secretariat for the All-Paty Parliamentary Group on Down Syndrome IAPPGDSI. The APPGDS continu8s to enjoy cross-paty support. Meeting$ were held in September 2023 and January 2024. Minutes ol the meetings can be found al h s'.Ila s.o Irninulesl. Topics rovered included the case for including Down syndrome within the education census, progress on the guidance lo the Down Syndrome Act, DS-spe¢rflc training, and inleraciions with the Integrated Care Board lead on Down syndrome. Membèrs ol the Advisory Group of the NDSPG presented at these meetings. Pagè 1
N tional Down S ndrome Polic Grou Trustees, Re ort and Financial Statements eriod ended 31 March 2024 How our actlvities deliver public benelit All our charilable activities focus on relieving the needs of people wlth Down syndromè, thèir parents, families, and Car$ in England, Scoland and Wales. We were pleased to see the successful enaclmenl ol the Down Syndrome Act in 2022, whlch r8ceiv8d Royal Assent on 28 April 2022, 10 improve access to serceS and lil& outcomes lor peoplè with Down'8 8yndrome. The A¢1 requires the government to develop and consult on guldance that aulhorStles must have rggard to when provIng specific health, social Care. educatk)n and housing services. Th8 NDSPG has been working with the civil service lo shape the formulation of the guidance to the A¢1. Represenlalves of the NDSPG have participated in a formal worklng group led by the Department of H8alth and Social Car8 IDHSCI. Worklna In collaboration with th8 DHSC, the NDSPG also created severai online and in-person forums lor adults wtth Down syndromo lo help shape the content for guldan¢e. The dlrecl Snvolv&menl ol people wlth Down syndrome in the discussk)ns around the guidance's shape IS essential lo ils success, and we are dellghled lo have faoilllaled Ihls. Below. we provide more d81ail on th8 sp6cillos of our aehiev9menL Th8 first y8ar as a charltable organlsallon has been a busy one. The followlng highlights actlvities of the charity and Ihg Advisory Group.. Ai leasl weekly meetSngs were h8ld b8een civll servants and NDSPG trusl88S, With addlllonal ad hoB meetings regardlng the oonlent and progress ol the Down Syndrome Act guldance and other relevant polky, Regular update meetlngs were held wllh re18vanl Mlnis18rs regardlno the progress of the guldance, tho school census and other relevant pollcy. Regular meotings were held with the All-Paty Parliamenlaiy Group on Down Syndrne Chair Slr Liam Fox, regarding the adminislralion and agendas lor the APPGDS me8lings. The Policy Advisory Group had seven gUlar monthly meetings and nine meetlngs of the lacililalors, forum. Th8 av8rag8 number of attendees was 20 people with Down syndrom8 and 12 supporters16 and 6 al the la¢llltators' meolingsl. We collaborated In fomilng tsvo local groups that meet monthly In person, both wilh DS lead6rshSp, in Choshire (Sept 231 and Cornwall (Feb 24). We met l¢e onllng wh the National Down Syndrome Soc¢ety's Ambassadors Group to compare UK and United Stales pollcy Ini(ialivos. We partnered with the Books Beyond Words team with Baroness Hollins lo create a new book on 'Brain Health and DemenlKa Awareness lor people wilh Down syndrome,. The team continues to seek funding lor this project. Page 2
Natlonal Down S ndrome Polic Grou 'Re ort and Financial Statements eriod ended 31 March 2 24 The chair ol Ihe Advisory Group gave presenlatlons about our work at multiple conferences, including a self-advocacy galh8ring in Birmingham. Down Syndrome UK in Leamington Spa, online with Disability Rights UK, and others in Bellasl, Brussels, Utrecht, Copenhagen and VBnna. He was also interviewed about our work on multiple radio shows and podoasts. In November. we co-hos18d the ICB leads me8tlNJ In London with the NDSPG and the DHSC, with both th8 Secretary ol Slate and th8 Under Secretary ol Slate lor Health and Social Care in attendance. Th8 symposium was dgemed a success with 26 IC8s represented. Local ICB offlcer asked two of our members lo help establish Down syndrome Stakeholders Groups. and further connections were established wf(h local groups. We sent two represenlatlves to the DHSC Down Syndrome Slatsjlory Guldance Advlsory Group, which IldeS most people with Down syndrome. On behalf of the DHSG, we then ran thr8e Lived Experlence Engagomenl locus groups Icheshlre, London, and online). Llved EVer19e Engagement loc$ groups lolalled 60 pe¢wle wfth Down Syndrome. During this perlod, three of our members presented to ihe All-Party Parliamentary Group on Down Syndrom8 me8tlngs, r8p)rtSng to the members on our work. On World Down Syndrome Day, we co-hosted with the Secretary ol State reception 81 10 Downing Sirget, where our work was commended repeatedly in the speech by Mlnister Maria Caulli8ld and by the Chalr ol the APPGDS, Sir Liam Fox. Our patron, a¢lor Tommy Jessop, delivered a speech highlighting the ne8d lor more opportunities lor people with Down syndrom8 Sn all areas of society, particularly employment, which was well received. WSth over 200 guests in attondance from supportina Down syndrome organisalions across the UK, this was the largest galh¢ring in th8 hl8tory of people wlth Down syndrome at the prlme mlnlstsr's resKlenGe. Tho group has continued to elleclively h8ighlen awareness about Down syndrome and learning dlsabilllles. A notable achievement occurred when three mernbers ol our Advisory Group were inleNiewed by Down Street Press and partlclpatsd in an Iconic photo Shoot. Subsequenly, thes8 Individuals were featured on the social media platforms ol both the Prim& MlnTsler and Mrs. Muty, further amplifying our message. Financial revlew The charity opened its accounts wrth a bank balancè of £2,485. Ouring the perM)d urKler review, thè charity accumulated incorng 01 £20,514 and incurred o>pendilure of £2,467. The income comprised £19,974 01 rgslri¢led funds and £540 gengral donations lunreslrlcledl- There wère main items of ewenditure. £1,340 was spent on IT s8rvices relating lo website and email. We held a very successful evont lor World Down Syndrome Day on 21 g March, which 10 Downing Street hosted, and the incidental ¢osls of this event were £1,127. Thè closing balance in the account at the end of Ihe period was £20,532. Pago 3
atlonal Down S ndrome Polic Grou Trustees. Re ort and Financlal Stalements erio Reserves Polloy While we ar8 h8PPy to have been granted funds lo support thè AdSary Group's activlty. we recognise the need to bulld up non-restrtcted reserve&. Given th& charlty'8'Vtrtud' nre, the most gnIfIcant costs rèlate tts updatino the webslte and email communkations. Structure, governan and managamont Th8 NDSPG'$ govoming document Is a loundalion.based constllutkjn, and Ihg organisallon 18 constluted as a Chartlable IneoTP0tal Organbalon I'CIO,). The flrsl charty trustee$ were appolnted vla the ttreatlon of Ihg CIO. Aparttrom the first Chlty Iruslees, every trLtslee musl b8 appoint8d lor three y&ar8 by a re801uUon passed ai a prop8rfy convened meeting of the charity trustee& Th& Iru6le88 mg81 regulady typlcally every other we8k-via Zoom. All truslees are Involved In orklcal deoisions laclng the ¢harty. Declslons reg8rdlng the day-to.doy man89gment ol soclal medla ar¢ delegated to a ¢ommunlcathon8 comrnrlt88. Slmllarly, day.to.day implementalion and fa¢llllatlon of tho Adsory Group ara dglegaled lo a sutgyoup. Refor¢nc8 and admlnlstratlvè delalls Charity nam8.' Natlonal Down Syndrome Poll¢y Group, a180 called NDSPG. Charity numb8r.' 1204298 R8gl8tsrod addre8&,' PO Box 576, Tunbildge Wells, TN2 9WJ Trnstsos in offl¢• for the durntlon ofth• roPQrtlng perlod Peler Brackatt Chalr Ntcola Enoch Vtce Chalr R&Bh&g1 ROBB MBE Co-Trèasurer Ken Ross OBE Co-Trea8urer Or Ellzabelh Corcoran Luclenn$ Cooper Carollne Warfi Exgmptlons frorn dlsclo$ur• No exemptions wèrè appllad lorlhls reporL Fund$ held as cu8todlAn tru5ts9 on bghall ol others. Thls Is not applicable. D?olaratlons Th& trustees declarn thai they have #ppreved thè trustees. report aljove, Slgnod on behalf of the charity's tru8te¢s: Mr K Ross. Trust¢• Page 4
National Down S ndrome Polic Grou Inde endenl Examiner's Re ort to the Trustees on the Unaudited Financial ents of the Nat5onal Down S ndrome Polic Grou I report on the accounts lor the peritxl ended 31 March 2024 set out on pages 6 to 8, Respectlve responslblliiles ot trustee8 and examiner The charity's Iruslees ar8 responsible for the preparation of th8 accounts. The charf(y's truslees ¢on8ider that an audrt Is not required lor this year lund9r SectM)n 144{21 of the Charities AGt 2011 Ilhe 2011 Acll) and that an independent examlnalion Is requlred. It Is my responsbi Ility lo.. ex8mlne the ount$ undèr Section 145 01 the 2011 Act to lollow the procedures lald down In the General Dlrecllons gwen by the Charhy Cornmission (under Section 1451Sllbl ol the 2011 Act); ond to slats whether particular matters have come to my attentlon. Basls ol the Independent examlner's report My 8xamlnalDn was carrled out in accordance with the General Directions given by the Charfly Commission. An examlnation includes a revKgW ol the accounllng records kept by the charlly and a comparison ol the accounts presented wlth those records. 11 also includ8s consideratlon ol any unusual Items or dlsclosures in the accounts. and sgeking eyplanalions from you as trustees concerning any such rnatters. The procedures undertak8n do not PfovSde all th8 8vldenc8 that would be required in an audlt, and consequently no oplnlon Is given as to whether the accounts prgsenl a 'lrLJe and lair v5ew ' and tha report Is Ilmhed lo thos8 matters set out kn the slalements bolow. Independent examlner's statemènt In connecllDn wllh my exAminalion, no matter has com8 to my attenlion: 11 I whlch ge$ me reasonable cause to b91ieve that, In any malerlal respect, lh8 f8qUifements to keep accounling records In accordance with Section 130 of the 2011 AGI,. and lo prepare accounts which accord with the accounting record5 and Ici comply wllh thè accounting rgqulrements of the 2011 Act have not been m6t' OT 121 to which. In my oplnlcn. attention should be drawn in order lo enable a propel urKlerstandlng ol the accounts lo be reachod. Mrs J D Watts FCCA, ACA James T¢)dd & Co 24 LandportTerrace Portsmouth Hampshire P012RG Date.. 9 December 2024 Page S
National Down S ndrome Polic Grou Recei ts and Pa ments lo eriod ended 31 March 2024 Totsl Not8s Unre iicted 2024 Donations 540 540 Grants 19,974 19,974 Tol81 re¢elpl$ 540 19,974 20,514 Eypendrture In furtherance ol the oblo¢18 of the charity Govornanoe and support costs of the Charrt Totsl Payments 1,840 1,127 2,467 1,340 1,127 2,467 Ex¢es8 ol Recelpts over Payments (1,927) 19.974 18,047 Bank accounts at 10 August 2023 Bank accounts at 31 March 2024 2,485 558 2,485 20,532 19,974 Page 6
National Down Syndrome Policy Group Statement of Assets and Llabilitie5 as at 31 March 2024 trlcte 24 Funds at Bank 558 19,974 20,532 Total Funds $58 19,974 20,532 Approvfk by the truste&8 on and 81gned on It8 behall. Ms R Ross - TRUSTEE Mr K Ro88-TRUSTEE Pag& 7
National Down S ndr Noles to the financial stalemenls for the eriod ended 31 March 2024 1. ACCOUNTING POLICIES Basi8 of Preparallon of Accounts The financial statements are prepared on a receipts and payTnents basis and incorporate the resLtIts ol the principal activity which L8 described In the Irusl88s report and which B oonlinuing. The accounts have been pr8par•d kn accordance with ihe Chari11gs Acl 2011, and wllh appliGabl8 Accounting Standards and the Statementof Recommended Practic6. Don8tlons and Grants Donations are recognised in the accounts when they are received. Donations and grants ar8 recognised as reslricled or unreslrlcted as required. Expendlture Resources e>pended are accounted for on a paymènts basls. Govnemance Costs Only those costs specillcally Idenli118d a8 for the admlnL81rallon and management of the charity are Included In thè accounts as 8wh ¢08t8. 2. GOVERNANCE COSTS OFTHE CHARITY Computer costs and subscripllons 1,340 3, RESTRICTED FUNDS Grants r8c$iv•d from.. National Lottery Ccfflmunity Fund 19,974 4. TRANSACTIONS wrrH TRUSTEES The charity's trust&as do not receive remuneratlon or expenses, Page 8