Down Syndrome Association December 2009 ISSUE NO. 36 NEWS & VIEWS Newspaper Post The Association Indirizz mill-President

G˙eΩieΩ membri u ˙bieb, tag˙na huwa li ntejbu l-˙ajja u s-servizzi ta’ wliedna. G˙aldaqstant hemm bΩonn li ninbidlu The Association promotes the interests, Din hija r-raba’ pubblikazzjoni tal-magaΩin u nimxu maΩ-Ωminijiet. Jin˙tie© li jkollna miri developments and inclusion in society of persons News & Views li permezz tag˙ha qeg˙da tajba u sodi u mhux biss, imma fuq kollox biex with Down Syndrome. nwasslilkom il-messa©© tieg˙i, illum b˙ala na˙dmu fuq dawn il-miri tag˙na biex naraw u l-President tal-G˙aqda. n˙ossu r-riΩultati tag˙hom g˙all-uniku skop – g˙all-benefiççju ta’ wliedna li g˙andhom Tajjeb tkunu tafu li fl-a˙˙ar AGM saru xi emendi Down syndrome. services: fl-iStatut tag˙na fosthom dik li l-G˙aqda

45, South Street, titmexxa minn President u mhux iktar minn Il-grupp biex iwettaq dawn il-miri u biex • Parental Support Valletta VLT 1101, Malta Chairman/Chairperson. jag˙mel il-brainstorming hemm Tel: 2123 5158 qieg˙ed – huwa l-Kumitat. Imma • Speech Therapy (by appointment) http://www.dsa.org.mt e-mail: [email protected] Il-bidliet jg˙inu ˙afna – dan kemm- dan wa˙du ma jistax i©ib ir-riΩultati • Aerobics, weekly il darba l-bidliet isiru g˙all-a˙jar. li nixtiequ a˙na lkoll. Intom membri Founded 1981 • Mass and Tombola, First Friday of month F’dan iΩ-Ωmien li ilni fil-kariga g˙andkom irwol kbir fi ˙dan Member of the se˙˙ew bidliet mhux ˙aΩin – kemm l-G˙aqda – li tissapportjaw lill- • Social activities: three times yearly bidliet fiΩiçi fil-premises tag˙na (u Kumitat, li tressqulu sitwazzjonijiet, • Talks and fora hawn in˙e©©e© lil dawk li g˙adhom informazzjoni u su©©erimenti ma rawx it-tibdil li sar fiç-Çentru sabiex ikun jista’ ja˙dem fuq issues • Christmas Party and Disco Federazzjoni Maltija ta’ l-Organizzazzjonijiet Persuni b’Dizabilita (F.M.O.P.D.) biex ti©u personalment taraw il-frott li direttament jolqtu lil uliedna. Din • Book, audiotapes and video library tal-˙idma tal-Kumitat fir-rigward, l-istedina mhijiex l-ewwel darba Associate Member of g˙all-benefiççju tag˙na lkoll) kif ukoll bidliet li smajtuha ming˙andi u l-anqas ser tkun • “News & Views” magazine: yearly o˙ra b˙al per eΩempju fl-iStatut – emenda li l-a˙˙ar darba. Jiena nemmen li lkoll g˙andna • Members Newsletter saret f’dan id-dokument kien li issa wliedna li g˙al qalbna lil uliedna, li lkoll nixtiequ naraw g˙andhom 16-il sena u aktar ser ikunu mniΩΩla tibdil g˙all-a˙jar f’dak kollu li jolqothom, li lkoll PATRON fir-re©istru tag˙na b˙ala membri (full members) nemmnu f’uliedna. G˙alhekk huwa mportanti H.E. The President of Malta f’isimhom stess. Dan huwa pass u bidla kbira ˙afna li a˙na stess, a˙na l-©enituri, nifhmu MEMBERSHIP: HON. PRESIDENTS u mportanti ˙afna g˙all-Assoçjazzjoni tag˙na. kemm flimkien nistg˙u nwettqu ˙afna, kemm Mary Runza Minn hawn nirringrazzja lill-avukat tag˙na Dr flimkien nistg˙u niksbu riΩultati g˙al uliedna. John L. Peel Full members: Robert Tufigno li ˙adem biex iffaçilita’ u g˙enna Ejja ma n˙allux dan il-kompitu f’idejn ˙addie˙or. Annual: €2.50 Life: €25 PRESIDENT biex inwettqu din il-bidla. Ejjew ilkoll flimkien ning˙aqdu ferm aktar u Marthese Mugliette nag˙tu l-kontribut tag˙na mill-ewwel u f’waqtu. Associate members: SECRETARY GENERAL U xi ng˙idu g˙all-pass kbir ie˙or li g˙amilna In˙e©©e© lil dawk li mhumiex membri tag˙na Annual: €5.00 Life: €35 Antoine L. Gauci meta, g˙all-ewwel darba, irnexxielna biex jissie˙bu mag˙na ˙alli l-bidliet li nixtiequ nibbenefikaw minn fondi Ewropej? Dan il-pass naraw, ise˙˙u fl-inqas Ωmien possibbli. TREASURER Anthony Wetz g˙andu jitqies b˙ala l-bidu ta’ bidla – bidla li ©©ieg˙elna nibdew na˙sbu u nimmiraw biex Nixtieq nag˙laq billi nirringrazzja lis-Sur Alister MEMBERS noffru opportunitajiet diversi u diretti lil uliedna Cachia, li g˙al ˙afna Ωmien kien l-Editur ta’ dan EDITORIAL CONTRIBUTIONS: Pio Fenech, Helen Mifsud, Patrick Umanah, Charles Vassallo, membri li g˙andhom Down syndrome. Dan il- il-magaΩin. Grazzi g˙al tant xog˙ol li wettaq Esperjenzi, artikli u ittri mill‐qarrejja g˙al dan il‐ Joe Borg Bonello bidu seta’ jsir grazzi g˙alikom iΩ-Ωg˙aΩag˙ u fir-rigward. Nirringrazzja wkoll lis-Sur Saviour magaΩin huma dejjem milqug˙a. (rep. of the A/Members) intom il-©enituri li ssapportjajtu dan il-pro©ett. Dimech li g˙al din l-a˙˙ar sena u nofs ta CHIEF ADVISOR (Araw aktar informazzjoni dwar dan il-progett l-kontribut tieg˙u fi dan il-Kumitat. Experiences, articles and letters from our Dr Isabella Borg fil-pa©ni segwenti). readers to this magazine are always welcome. MD,MSc(Clinical Genetics)(Lond),PhD(Cantab), G˙an-nom tal-Kumitat nixtieq lilkom ilkoll, MMCPath, MMCFD, RGN (Lond) Consultant Medical Geneticist and Head Bidliet ... miri ... Ωmien ... riΩultati! X’inhi ˙biebkom u familjari tag˙kom Milied ˙ieni u Association Contacts: Clinical Genetics and Cytogenetics Unit Assoçjazzjoni volontarja b˙alma hi sena mimlija kuntentizza u sa˙˙a. [email protected] LEGAL ADVISOR l-Assoçjazzjoni tag˙na? Wa˙da mid-diversi Dr. Robert Tufigno tifsiriet tg˙id li G˙aqda Volontarja hija grupp ta’ Tel: 21 235 158 individwi li, fuq baΩi volontarja, jid˙lu fi ftehim SPIRITUAL DIRECTOR: Rev. Fr. Emmanuel Borg Bonello biex jiffurmaw grupp biex iwettqu g˙an. L-g˙an

page 2 page 3 Contents Editorial

Dear Members, the Committee of our Down Syndrome The Association...... 2 Association, Malta, is working hard to make It is both an honour and a pleasure for Indirizz mill-President...... 3 it a reality here in our society. me to be appointed the editor of this Contents...... 4 renounced magazine of our Association. I I have every confidence in our Association’s would then like to thank all the members united efforts together with all members’ Editorial...... 5 of the Committee for this opportunity given contribution; we will be able to move to me and promise that together, we work forward like other countries, work in “One Youth For All” continually to ensure a better and fulfilling collaborations with Ministries concerned Pro©ett Iffinanzjat minn Fondi Ewropej...... 6 future for all persons who have with Education and Employment Il-Punti li ˙ar©u minn dan il-pro©ett...... 8 Down Syndrome. to see that there are special work programmes designed for adults Anything is Possible– Lara’s Story!...... 9 As one of the proud and happy who have Down syndrome; so parents of Rachel, I am used to that they can hold regular jobs. L-Opinjoni Tieg˙i … il-Vot Tieg˙i...... 10 the phrase “Children who have Down Syndrome” which has In this sign of the times, I would Memorandum...... 11 become one of the house hold like to invite all parents of children Mill-Kalendarju tal-Assoçjazzjoni...... 12 object in our Maltese society. who have Down Syndrome to NEWS&VIEWS On a positive note, the same register in the Association so that is a bilingual Publication: Ringrazzjamenti...... 14 society has become fully aware in one voice and movement, we mouthpiece of the Down Syndrome Association of the cause of this genetic disorder and take all the needed learning programmes Malta. It is issued twice yearly and is distributed AIWA...... 15 free. supports the sterling work done by our on board to see that our children and adults Down Syndrome Association. are living their life to the fullest. Pubblikazzjoni bil-Malti u bl-IngliΩ, ma˙ru©a mill- Luttu (bereavement)...... 16 G˙aqda Down Syndrome Malta, darbtejn fis-sena u mqassma b’xejn. Eugenio Galea...... 18 As we all know, the primary aims of our Finally, as faithful parents of these gifted Association are among other related ones: children, let us help them to learn what they EDITORIAL BOARD Imfakkar il-Jum Dinji tad-Down Syndrome...... 19 working hard for the implementation of live. If a child lives with encouragement, Patrick Umanah High-level Action Plan and Strategy of he learns confidence. If a child lives with Marthese Mugliette Diskors Amministrattiv tas-Segretarju John L. Peel seeing children who have Down Syndrome praise, he learns to appreciate. If a child Ìenerali April 2009...... 20 to be accorded the same legal rights of lives with fairness, he learns justice. If Views expressed in this magazine may not necessarily eduction, employment and independent a child lives with approval, he learns to be those held by the Editor or by the Down Syndrome Association. living like their peers. like himself. And when a child lives with acceptance and friendship, he learns to L-artikli u l-veduti mi©juba f’dan il-magaΩin mhux bilfors juru l-opinjoni ta’ l-Editur jew tal-G˙aqda Down Today, in some countries, for example, in find love in the world. Syndrome. the U.K, an increasing number of adults

REPRINT PERMISSION who have Down Syndrome live semi- Happy Christmas and a Happy New Year, The Down Syndrome Association (Malta) gives independently in community group homes permission to reprint original material printed here. where they take care of themselves, Mr. Patrick Umanah Please credit thus: “Reprinted from ‘News & Views’, M.A, B.ED (HONS), B.A (HONS), B.A. DSA, Malta. Permission to reprint other material participate in household chores, develop must be solicited from the original source. friendships, partake in leisure activities, FRONT COVER and work in their communities. This is what One Youth for All participants

PRINTING Down Syndrome Association Bestprint Co. Ltd. Ûurrieq Road, Qrendi 45, South Street, Valletta VLT 1101, Malta Tel: 21680789 Tel: 21235158 http://www.dsa.org.mt

page 4 page 5 “One Youth For All” – Pro©ett Iffinanzjat minn Fondi Ewropej

Il-parteçipanti membri Ωg˙aΩag˙ tag˙na li ˙adu sehem fil-pro©ett ‘One Youth For All’ kienu: Mary Jo Abela : Gail Borg : David Cauchi : Redeemer Chetcuti : Christine Farrugia: Daniela Farrugia: Aaron Fenech : Anton Gauci : Maria Gauci : Ben Grech : Etienne Grech : Maria Mifsud: Mary Rose Mifsud: Gayle Mugliette : Nichole Muscat : Saviour Pace : Rachael Umanah : James Vassallo : Steve White Dawn kienu meg˙juna mis-Sinjuri Marthese Mugliette - President, Pio Fenech - PRO, Helen Mifsud - membru fil-Kumitat u Rita Fenech - nurse.

L-Assoçjazzjoni Down Syndrome, r-responsabbilitajiet. Uliedna li g˙andhom ibbenefikat mill-pro©ett ‘One Youth For All’ Down syndrome, flimkien maΩ-Ωg˙aΩag˙ ta˙t il-programm ‘Youth in Action’. l-o˙ra, qag˙du g˙ar-regoli li kien hemm, ipparteçipaw fil-workshops, t˙alltu mal- F’dan il-pro©ett li sar bi s˙ab mal-Malta o˙rajn, Ωammew mal-˙inijiet mg˙otija, kielu Girl Guides, ˙adu sehem madwar 20 ©uvni flimkien, g˙addew il-˙in liberu tag˙hom u tfajla membri tal-Assoçjazzjoni Down flimkien, ˙adu gost flimkien u fuq kollox Syndrome flimkien ma 20 tfajla mill-Malta ˙adu ˙sieb tag˙hom infushom wa˙edhom. Girl Guides. L-g˙an ta’ dan il-pro©ett kien Il-Girl Guides kellhom responsabbilità o˙ra biex immexxu ‘l quddiem is-sehem attiv taΩ- – dik li jg˙inu lil s˙abhom il-˙in kollu. Ωg˙aΩag˙ fis-soçjetà, biex niΩviluppaw is- Il-live in sar fil-Porziuncola Retreat House, Dan il-live in g˙allimna ˙afna – g˙allimna solidarjetà u biex in˙e©©u t-tolleranza fost L-E.T. il-President ta’ Malta Dr. George Ba˙ar iç-Çag˙aq mit-3 sas-7 t’Awissu kemm huwa mportanti li ng˙atu çans lil iΩ-Ωg˙aΩag˙. Biex nil˙qu dawn l-g˙anijiet Abela, li huwa l-Patrun tal-Assoçjazzjoni 2009. Fil-workshops iΩ-Ωg˙aΩagh tqassmu uliedna jesperjenzaw ˙ajja ndipendenti, ©iet ippjanata ©img˙a live in. Dan il-pro©ett tag˙na, onorana biΩ-Ωjara tieg˙u waqt dan fi gruppi b’abilitajiet differenti. Fis-serata g˙allimna bil-kapaçitajiet ta’ wliedna, kien mg˙ejjun kontinwament minn erba’ il-kamp. Din iΩ-Ωjara tal-E.T. il-President ta’ li ttellg˙et fl-a˙˙ar ta’ dan il-kamp u li uriena li hemm bΩonn li nibqg˙u noffru ©enituri ta’ persuni li g˙andhom Down Malta ferr˙et ˙afna lill-parteçipanti kollha g˙aliha attendew il-©enituri taΩ-Ωg˙aΩag˙ esperjenzi simili g˙al uliedna. Uliedna sydrome (wa˙da minnhom nurse), flimkien b’mod partikolari lill-membri Ωg˙aΩag˙ li ˙adu sehem fil-pro©ett, mistiedna tal- wkoll tawna u wrewna l-fehma tag˙hom mas-segretarja tal-Malta Girl Guides. tag˙na. L-E.T. iltaqa’ personalment u kellem Assoçjazzjoni Down Syndrome u tal- dwar din l-esperjenza – kollha kemm huma individwalment lil kull wie˙ed u wa˙da minn Malta Girl Guides flimkien ma’ membri ˙adu gost ˙afna f’dan il-live in, ˙add G˙al kwaΩi l-membri kollha tal- dawk preΩenti. L-G˙aqda Down Syndrome parlamentari, erba’ Ωg˙aΩag˙ miΩ-Ωew© minnhom ma wera x-xewqa biex imur d-dar Assoçjazzjoni tag˙na, din kienet l-ewwel u l-Malta Girl Guides apprezzaw ˙afna gruppi qraw ir-riflessjonijiet li l-grupp kollu f’nofs il-live in u lkoll kemm huma wrewna esperjenza tag˙hom li g˙addew daqshekk Ω-Ωjara tal-E.T. il-President ta’ Malta liema kien ipprepara flimkien. s-sodisfazzjon u r-ringrazzjament tag˙hom Ωmien ‘il bog˙od mid-dar u mill-familja Ωjara g˙enet ˙afna biex din l-attività ©iet g ˙ a l d i n l - e s p e r j e n z a . tag˙hom. F’dan il-kamp kul˙add kellu jerfa’ irrappurtata fil-media. Pio Fenech PRO

page 6 page 7 Anything is Possible One Youth for All – Lara’s Story!

Early this year, among the many CV’s we she was talking about. We discussed the Il-Punti li ˙ar©u minn dan il-pro©ett received, we had an application from Lara hours and she was completely flexible. We Dimech. Her application was smartly printed explained the tasks we had in mind for her 1. 3. and her covering letter told us that Lara had and took her down to see the workplace in a disability. With admirable determination, Agliolio for her to better understand where F’dan il-kamp tg˙allimna ˙afna affarijiet, Dan il-Kamp tana ç-çans li niltaqg˙u hawn she attached certificates of all the she would be working. She fosthom biex ikollna ˙ajja attiva u b’sa˙˙itha. flimkien u niddiskutu l-affarijiet li jolqtu lil courses she has attended. Her smiled so enthusiastically and Dan nistg˙u nag˙mluh jekk l-ewwel u fuq kull wie˙ed u wa˙da minna. Tg˙allimna li CV was more impressive than just asked when she can start. kollox, nemmnu li g˙andu jkollna ˙ajja b˙ala çittadini ta’ Malta u ta’ l-Ewropa, a˙na most CVs we received from 17 attiva u b’sa˙˙itha, kif ukoll billi na˙dmu g˙andna kemm drittijiet kif ukoll dmirijet, u year olds looking for job. Her determination was admirable. g˙al dan il-g˙an. li ta’ kul˙add huma l-istess. B˙ala drittijiet, So we concluded the details semmejna fost affarijiet o˙ra, li g˙andna What also struck us is that Lara and planned her induction, after Huwa mportanti ˙afna li kul˙add ikun d-dritt li nkunu a˙na nfusna, li ng˙ixu had attended a specialised which she immediately started aççettat fl-istess soçjetà. Hu min hu, hi ˙ajja kuntenta u fil-paçi kif ukoll li na˙dmu ITS program called Pathway to work and during our busy time of x’inhi l-kulur tal-©ilda, hi x’inhi l-abilità tal- flimkien. B˙ala responsabbilitajiet, Independent Living, covering the the year, July. Lara is scheduled Lara Dimech bniedem u hu x’inhu t-twemmin ta’ dak li semmejna wkoll li g˙andna dejjem basic skills to start a job in an now for regular shifts and is there jkun. nirrispettaw u ng˙inu lil xulxin, naççettaw F&B-related area. Before meeting Lara, we when the restaurant is at its busiest to help lil kul˙add u nkunu persuni responsabbli. decided to meet ITS to understand better the service team with all the preparation Kul˙add g˙andu jkun aççettat. how Lara can fit in our hotel and we were required including polishing of crockery, Dan jista’ jkun suççess jekk ilkoll flimkien 4 reassured that with the right support Lara cutlery and glasses. She takes on one nibnu u nibdlu s-soçjetà ta’ madwarna. can easily settle into the Food & Beverage task at a time until she is ready to be given F’dan il-grupp tg˙allimna dwar l-ambjent Department. another task and today she knows clearly u kif g˙andna nie˙du ˙siebu u nibΩg˙u 2. what is expected of her and has become a g˙alih. Huwa mportant li kemm jista’ jkun Following a discussion with the hotels’ valued member of the team. Her presence Fid-dinja mhux kulhadd huwa l-istess. ner©g˙u nuΩaw l-istess affarijiet g˙al aktar GMs, we assessed the various areas brings warmth to the people around her G˙andna in˙arsu lejn id-diversità u ’l minn darba b˙al per eΩempju, container we could place Lara, keeping in mind and colleagues enjoy taking that extra little bog˙od mid-diskriminazzjoni. It-tag˙lim tul tal-©elat nuΩawh biex inkabbru pjanta fih that we needed to ensure a very safe time and care to mentor and assist Lara. il-˙ajja jibda mit-twelid u jispiçça ma’ l-a˙˙ar u b’hekk ukoll inkunu qeg˙din insebb˙u environment, and also one which is not too nifs tal-˙ajja tag˙na. Il-˙ajja hija tag˙lim l-ambjent. Nistg˙u wkoll nirriçiklaw big or confusing and where she would be As a Group, IHG does take pride in kontinwu g˙al kul˙add bla ebda distinzjoni. l-affarijiet li narmu b˙al per eΩempju minflok continuously coached and supervised. supporting such initiatives, not just because Tista’ tkun tabib, pilota, beautician, ˙ajja narmu l-qxur tal-frott fiΩ-Ωibel, nuΩawh of a social obligation to do so but because We settled on Agliolio as the right vokazzjonali, mastrudaxxa, cleaner u biex nag˙mlu l-kompost. B’hekk inkunu we really believe that the little extra effort environment, as it is a casual a la carte o˙rajn. It-tag˙lim mhuwiex biss fis-snin qeg˙din, b˙ala çittadini Ewropej, inwettqu we put in can really make a difference in restaurant within Golden Sands. Agliolio’s edukattivi tag˙na, imma jmur ˙afna aktar d-dmirijiet tag˙na. people’s levies. We look forward to Lara back of house area would provide the minn hekk. Anke waqt ix-xog˙ol a˙na and of our other employees with special secured environment we thought Lara nkunu qeg˙din inkomplu niΩviluppaw u needs enjoying a long future working with would be comfortable working in and being nibnu ma’ dak kollu li nkunu tg˙allimna fil- us and we congratulate them for having such a busy operation, we could easily passat. achieved so much more than some may identify various tasks for her which would have expected from them. Where there’s be of value to the team. a human spirit to achieve, anything is possible. Finally, we set a meeting with Lara and her father. Lara brought with her all the Christina Galea workbooks used during her training with Group Human Resources Manager ITS and proudly took us through what Human Resourses Department she had done to show us she knew what Island Hotel Group

page 8 page 9 L-Opinjoni Tieg˙i... Memorandum il-Vot Tieg˙i

L-Equal Partners qed ta˙dem fuq dan il- pro©ett Ewropew, L-Opinjoni Tieg˙i L-Vot Lill- Onor. Ministru Tieg˙i, flimkien ma’ ˙ames pajjiΩi o˙ra mill- Ministru g˙all-Edukazzjoni Ewropa. Dawn il-pajjiΩi huma l-Italja, li qed Onor. Evarist Bartolo MP tikko-ordina dan il-programm, l-Irlanda, Kelliem Ewlieni tal-Partit Laburista fuq l-Edukazzjoni Spanja, id-Danimarka u l-Ungerija. L-Equal Partners stiednet lill-Assoçazzjoni Down Mill- Assoçjazzjoni Down Syndrome Syndrome biex tipparteçipa flimkien mag˙ha fl-attivitajiet li ser isiru f’Malta. Su©©ett: L-Edukazzjoni u Wliedna Dan il-pro©ett hu pro©ett tal-Grundtvig u huwa pro©ett edukattiv g˙all-˙ajja. L-iskop Data: 5 ta’ Novembru, 2008 ta’ dan il-pro©ett huwa li jg˙ati le˙en lill- persuni b’diΩabilta’ intelletwali biex ikunu Is-Sinjura Louisa Grech waqt il-programm edukattiv jistg˙u jie˙du sehem attiv f’dak kollu li qed ji©ri fil-pajjiΩ, fil-politika u fl-elezzjonijiet. jipparteçipaw fil-politika. Persuni b’diΩabilità “L-Edukazzjoni mhijiex preparazzjoni g˙all-˙ajja; l-edukazzjoni hija l-˙ajja nnifisha” Jg˙in lill-persuni b’diΩabilità intelletwali biex intelletwali g˙andhom ikollhom l-opportunità jg˙id John Dewey, filosofu, psikologu u riformatur fl-edukazzjoni Amerikan. jiΩviluppaw opinjonijiet u jie˙du deçiΩjonijiet biex jipparteçipaw fil-˙ajja u d-deçiΩjonijiet fuq baΩi ta’ informazzjoni dwar l-elezzjonijiet politiçi u dan il-pro©ett jag˙tihom dik l-g˙odda Uliedna li g˙andhom Down syndrome ukoll g˙andhom il-˙ajja tag˙hom, ˙ajja li b˙alna u referenda, b˙al kull çittadin ie˙or Ewropew. baΩika biex ikunu jistg˙u jag˙mlu hekk. lkoll, jixtiequha u jriduha tkun ta’ suççess u sabi˙a. L-edukazzjoni hija ˙ajjithom u g˙alhekk G˙an ie˙or tal-pro©ett huwa li ninformaw u huwa mportanti ˙afna li l-edukazzjoni ta’ wliedna ting˙atha l-attenzjoni mmedjata u n˙e©©u dawk il-persuni f’poΩizzjoni li jistg˙u L-ewwel parti ta’ dan il-programm edukattiv mixtieqa biex titjieb professjonalment. j˙affu dan il-proçess biex persuni b’diΩabilità sar minn April sal-bidu ta’ Ìunju, sewwa sew intelletwali jkunu jistg˙u j˙addmu d-drittijiet qabel l-elezzjonijiet Ewropej. Il-programm Dan jista’ jkun possibbli kemm il-darba : politiçi tag˙hom. g˙enhom biex isiru jafu iktar dwar l-Ewropa, dwar il-gruppi politiçi u dwar dak li kienu 20 persuna b’diΩabilta’ intelletwali mill- qieg˙din jg˙idu dawn il-gruppi. Óadu sehem 1. il-kurrikulu edukattiv ikun verament iwassalhom g˙all-“iΩvilupp s˙i˙ tag˙hom inkluΩ Equal Partners u mill-Assoçjazzjoni Down ukoll f’konferenza stampa li g˙aliha attendew il-˙ila g˙ax-xog˙ol” (l-Att dwar l-Edukazzjoni) Syndrome ˙adu sehem f’kwestjonarju fejn ukoll xi politiçi. F’din il-konferenza stampa 2. fir-rigward ta’ wliedna, is-sistema edukattiva tintrabat bil-li©i li g˙andha tibqa’ ©ew mistoqsija jekk qattx ivvutaw u kif huma ppreΩentaw ittra li kienu kitbu. Dan responsabbli g˙all-edukazzjoni tag˙hom aktar mill-età ta’ sittax-il sena. Dan g˙aliex ˙assewhom dwar dan. Lil dawk li ma kienux il-programm edukattiv ser ikompli fix-xhur li meta bijolo©ikament uliedna jkunu ta’ sittax-il sena, il-mentalità tag˙hom tkun g˙adha ivvutaw sarulhom ukoll mistoqsijiet dwar jekk ©ejjin u din id-darba ser ikollu aktar affarijiet li ˙afna iΩg˙ar u g˙alhekk ikun g˙ad fadlilhom aktar x’jitg˙allmu. jixtiequx li jkollhom id-dritt biex jivvutaw. Il- huma prattiçi g˙al Malta. 3. uliedna, b˙al s˙abhom l-o˙ra, ikunu jistg˙u jibbenefikaw huma wkoll minn edukazzjoni persuni li ˙adu sehem apprezzaw li huma adulta professjonali li tkun addattata g˙all-˙ti©ijiet u l-abilitajiet tag˙hom. Min jixtieq jie˙u sehem ma’ dawn iΩ- parti minn dan il-pro©ett. Ser jer©a’ jkun 4. uliedna wkoll ikunu nkluΩi fil-pjanijiet tal-Life Long Learning – edukazzjoni tul il-˙ajja – Ωg˙aΩag˙ jista’ jçempel kemm lil Louisa hemm kwestjonarju ie˙or f’Novembru 2009 u bla skossi, bla waqfien u bi professjonalità u rispett li tixraqilhom. ie˙or g˙an-nofs is-sena d-die˙la. Grech tal-Equal Partners fuq 21250400, jew lil Marthese Mugliette tal-Assoçjazzjoni Dawn l-istess persuni ˙adu sehem ukoll Down Syndrome fuq 21235158 / 99229418. Filwaqt li l-Assoçjazzjoni Down Syndrome tirringrazzjakom g˙all-interess tag˙kom fl- f’programm edukattiv. Dan il-programm Tistg˙u tmorru ukoll fuq il-websajt tal-pro©ett edukazzjoni ta’ wliedna, tittama li tkun involuta f’diskussjoniiet u f’deçiΩjonijiet li jittie˙du jg˙in lill-persuni b’diΩabilta’ biex jg˙arfu li www.myopinionmyvote.eu biex tie˙du iktar fir-rigward g˙all-benefiççju ta’ wliedna. anki huma jistg˙u jkollhom ideat u opinjonijiet informazzjoni. u li dawn g˙andhom dritt li jesprimuhom. Grazzi. Jg˙inhom jg˙arfu li anki huma jistg˙u jkollhom Louisa Grech opinjoni dwar il-politika u g˙andhom dritt Fondazzjoni Equal Partners Marthese Mugliette Chairperson

page 10 page 11 Mill-Kalendarju tal-Assoçjazzjoni

Il-President Marthese Mugliette flimkien mas-Sur George Borg, Direttur Student Services Department, waqt il-laqg˙a li kellu mal-©enituri s˙abna l-G˙awdxin fil-preΩenza tal- Kav. Frank Gatt, Prinçipal tal-Kulle©© t'G˙awdex. Din il-laqg˙a ©iet organizzata mill- L-Onor. , Segretarju Parlamentari G˙aqda Down g˙aΩ-Ûg˙aΩag˙ u l-iSport: is-Sur Mauro Pace Syndrome. Parascandolo, Direttur EUPA: Marthese Mugliette, IΩ-Ωg˙aΩag˙ tag˙na jiççelebraw u jie˙du gost President waqt l-g˙oti tal-kuntratt tal-pro©ett ‘One flimkien waqt id-disco tal-Milied 2008 li sar fis-sala Youth for all’. tal-Patrijiet Fran©iskani l-Belt Valletta. mix-xellug is-Snja Helen Mifsud - Kumitat, Maria Mifsud, Gayle Mugliette, is-Snja Marthese Mugliette, President waqt l-attività organizzata Ir-rappreΩentanti tal-AIWA milqug˙a fiç-Çentru tag˙na mill- mill-Fondazzjoni Eden fil-5 ta’ President tal-G˙aqda flimkien ma’ w˙ud mill-membri tal- Novembru 2008 fl-Awareness Week Kumitat u l-familjari tag˙hom. Ir-rappreΩentanti tal-AIWA tad-Down Syndrome ng˙ataw informazzjoni dwar il-˙idma tal-G˙aqda tag˙na u wkoll ©ew ippreΩentati bil-Pakkett Informattiv g˙all-Ìenituri li qieg˙ed jitqassam fl-iSptar Mater Dei lill-©enituri ©odda li jkollhom wield li g˙andu/ha Down syndrome. Waqt il-konferenza stampa li saret dwar mix-xellug fuq quddiem Gayle Mugliette, James Gauci (fuq il-pro©ett ‘L-Opinjoni Tieg˙i L-Vot Tieg˙i. wara) is-Snja Marthese Mugliette - President DSA, is-Sur G˙aliha kienu mistiedna u attendew il- Antoine Gauci - Segretarju DSA, is-Snja Kirsty Hignet - Raffle President tal-G˙aqda Marthese Mugliette, Co-ordinator AIWA, is-Snja Anna Marie Awad - President il-persuni politiçi Dr Kyrill Micallef Stafrace, AIWA, is-Snja Irene Burlinson - Corrisponding Secretary Dr Arnold Cassola membri tal-Kumitat AIWA u s-Sinjuri Rita Fenech, Carmen Umanah, Judy Gauci, tal-Assoçjazzjoni Down Syndrome u Helen Mifsud - Kumitat u s-Sur Joe Borg Bonello - Kumitat l-parteçipanti u l-familjari tag˙hom.

Il-Kumitat iltaqa’ mal-E.T. l-President ta’ Malta jidhru (fuq quddiem mix-xellug) Joe Borg Bonello, Pio Fenech PRO, Alexia Wetz, Rachel Umanah, Joseph Vassallo, l-Eçç. Tieg˙u l-President ta’ Malta Dr George Abela, Marthese Mugliette – President, Gayle Mugliette, Ms Marthese Mugliette - James Gauci, Maria Mifsud, President DSA, Mr Antoine Helen Mifsud. Gauci - Secretary DSA, Ms (fuq wara mix-xellug) Anthony Anna Marie Awad - President Welz – TeΩorier, Charles AIWA, Ms Irene Burlinson Vassallo – Viçi President, - Corrisponding Secretary Saviour Dimech, Lara Dimech, AIWA, Ms Kirsty Hignett - Antoine Gauci – Segretarju, Raffles Co-ordinator AIWA Judy Gauci, Rita Fenech, Carmeline Vassallo.

page 12 page 13 Ringrazzjamenti AIWA

Is-Sinjura Kirsty Hignett, Raffle Co-ordinator AIWA The American International Women’s tippreΩenta d-donazzjoni tag˙hom lill-G˙aqda. mix-xellug is-Sinjura Marthese Mugliette - President Association (AIWA) celebrated DSA, is-Sur Antoine Gauci - Segretarju, is-Sinjura its 40th anniversary with a coffee Kirsty Hignett - Raffle Co-ordinator AIWA morning at the Intercontinental Hotel in February. Mrs Catherine Gonzi was the guest of honour at the event. In her speech she emphasized the importance of the ‘union of diversities’ represented by AIWA which today has 170 members from 30 different nationalities.

The American Wives Club was Lill-KMPG li ta’ kull sena jivverifikaw il- Lit-Times of Malta li tirriklama b’xejn founded in 1969 as an exclusively kotba u l-kontijiet finanzjarji l-Assoçjazzjoni tag˙na. American association for the wives of the men working in the oil fields in Libya. The intention was for the Lis-Sinjuri Mary Runza u Jessica Curmi families based here, who were u lill-grupp kollu g˙all-g˙ajnuna u without husbands and fathers for Lill-Commanderjay Music s-sapport kontinwu tag˙hom. FiΩ-Ωmien long periods at a time, to provide tal-Milied dawn ©entilment ˙adu ˙sieb Entertainement g˙as-servizz li dejjem friendship and support for each jag˙mlu fundraising g˙all-Assoçjazzjoni jag˙tuna kull u meta jkollna bΩonn other. As the number of American ming˙ajr ˙las. tag˙na. families in Malta dwindled towards the end of the 1970’s ladies of other nationalities were included in AIWA’s members during one of the activities held to celebrate the membership. By 1981 almost their 40th anniversary. Lil Ms Doris Bonello, li mg˙ejjuna minn half the members were British; the Ms Charmaine Xerri, volontarjament taw rest were Americans and Maltese with a The name has now changed to the lezzjonijiet tal-posture lill-grupp membri Lill-Kumitat Qlub ÌeneruΩi fi ˙dan il-Kumpanija Trelleborg Sealing sprinkling of other nationalities. In 1992 the Association of International Women tag˙na. Solutions Malta g˙all-g˙otja finanzjarja name of the group changed to the American in Malta but the dual purpose of the tag˙hom International Women’s Association. association remains the same – to provide friendship to women of all nationalities who It was at this time that the association are living in Malta and to help, through our started to support local charities. Initially the Lill-American International Women’s fundraising efforts, those less fortunate “Lill-Middlesea Valletta Life Assurance beneficiaries were the various orphanages Association (AIWA) li ˙allsu l-ispejjeΩ than we are. Company Limited li anke din is-sena on the islands. Today AIWA supports a kompliet tag˙tina l-appo©© permezz ta’ g˙ax-xiri ta’ 20 si©©u. diverse array of charities but causes that ˙las tal-polza tal-assigurazzjoni tag˙na.” benefit children are still in the forefront.

The Down Syndrome Association has benefitted a lot from AIWA. Lill-Forestals li dejjem sibna l-g˙ajnuna Lill-kumpanija Krea Malta Ltd g˙all-g˙otja tag˙hom meta jkollna xi problema b’xi ta’ wall unit li tikkumplimenta l-imwejjed u Thanks to their generosity computer mg˙oti lilna mill-Ministeru tal- s-si©©ijiet mixtrija. our premises has seen a significant changeover. Informatika. Thank you AIWA for your precious support.

page 14 page 15 Luttu (bereavement)

irritazzjoni, biki, dwejjaq u sens li ©ejt dak li huma kellhom. Hemm drabi li jaqg˙u Dak li mhux Veru abbundanat. f’dipressjoni kbira. Dan hu riskju kbir g˙al xi w˙ud min˙abba li dawk, li wara l-mewt Persuni Down syndrome ma j˙ossux sog˙ba (grief). FiΩiku: Sintomi b˙all-u©ieg˙, aptit, qtug˙ ta’ xi ˙add g˙aΩiΩ jibdew jie˙du ˙sieb ta’ ta’ nifs u mard. Il-persuna Down syndrome dawn l-u˙ud, ma jindunawx bis-sinjali Persuni Down syndrome ma jg˙arfux jew jifhmux telfa. li g˙andha nuqqas ta’ abilta’ li tikkomunika tal-bidu tad-dipressjoni. G˙andek titlob verbalment, jista’ jkun li tesperjenza u turi l-g˙ajnuna meta dan id-dwejjaq itawwal sintomi fiΩiçi ta’ sog˙ba. g˙al Ωmien twil. Hawnhekk g˙andha tintalab l-g˙ajnuna professjonali. Fil-mod kif igib ru˙u (Behavioural): Fatti g˙andhom Down syndrome probabilment Ótie©a akbar li torqod, hyperactivity, tibda ikollhom bΩonn l-g˙ajnuna. tevita u turi nuqqas ta’ nteress f’attivitajiet Kif ng˙inu persuna li g˙andha It-telfa ta’ xi ˙add li t˙obb hi probabbli soçjali li normalment tag˙mel. Down syndrome tg˙addi mil- wa˙da mill-aktar esperjenzi tal-˙ajja li Óafna persuni Down syndrome isibu luttu? tfarrkek. Wara l-mewt ta’ xi ˙add li t˙obb, kwalunkwe tibdil diffiçli biex jaççettawh u Mentali: KonfuΩjoni, illuΩjoni, ˙olm t˙oss li g˙andek tg˙amel luttu. Ftit tas-snin jg˙ixuh. Madankollu, hi l-esperjenza tan- ikrah, tfittex lil dik il-persuna li mietet, Dejjem ag˙ti l-a˙bar ta’ mewt b’onesta’ ilu kien hemm luttu li s-soçjetà tin˙tie©, nies li g˙andhom Down syndrome, li nies konçentrazzjoni fqira, telf ta’ kapaçità u b’mod li ti©i miftiehem mill-individwu. waqt li llum, g˙alkemm ˙afna minn dan o˙ra jie˙du r-responsabilità g˙alihom (skills) u insecurity. Mhux g˙ax is-sistema ˙admet fuq persuna, spiçça, xorta l-individwu j˙oss li jag˙mel u sa˙ansitra j©ieg˙luhom jag˙mlu li ta˙dem fuq o˙ra. G˙alhekk hu mportanti li xi rit ta’ luttu. Din is-sog˙ba, u g˙alhekk jg˙idulhom. Tkun taf li s-sog˙ba qed ti©i g˙all-a˙jar, persuna li taf sewwa lill-persuna li g˙andha il-luttu, jista’ ji©i me˙tie© wara t-telfa ta’ xi meta dak li g˙addej mil-luttu jibda ja˙seb Down syndrome tkun preΩenti meta familjarji, ˙bieb tal-qalba u anke ‘pet’, barra Kif na©ixxu normalment meta f’dak li miet ming˙ajr u©ieg˙ jew rabja u persuna o˙ra tag˙ti l-a˙bar. L-a˙bar tal- o˙rajn. nkunu sog˙biena jista’ jiftakar f’memorji sbie˙ flimkien. Din mewt m’g˙andhiex tinΩamm mill-persuna it-triq mhijiex dejjem kontinwa jew b’mod Down syndrome biex tipprote©iha. Donnu fejn jid˙lu persuni li g˙andhom Kemm jekk persuna li g˙andha Down dirett. Tista’ tkun li tie˙u ˙afna Ωmien. Down syndrome, kul˙add kien ja˙seb li syndrome u kemm jekk persuna o˙ra, in- Tajjeb li tkunu tafu li mhux kul˙add jg˙addi Toqg˙odx iddur mal-lewΩa. UΩa lingwaçç dawn ma jafux kif juru s-sog˙ba, g˙ax nies ja©ixxu b’mod individwali meta jkunu minn dak kollu li hemm miktub, jistg˙u dirett u li jiftiehem mill-persuna Down neqsin mill-kapaçità biex jag˙mlu hekk. sog˙biena. Imma ˙afna nies jesperjenzaw jkunu ftit, kollha jew xejn minn dawn. syndrome, biex tevita li din tit˙awwad. Illum dawn il-persuni jg˙ixu ˙afna iΩjed u affarijiet komuni waqt il-luttu. L-a˙jar li ma tuΩax idjomi kif sirna nuΩaw min˙abba f’hekk ˙afna qed jesperjenzaw Dipressjoni (depression) : Hemm illum b˙al “m’g˙adux mag˙na; telaqna; il-mewt ta’ ˙biebhom, familjari, kif ukoll G˙all-bidu jkun hemm sens ta’ qatg˙a dawk id-drabi li s-sog˙ba twasslek g˙ad- mar g˙and il-Bambin…”. Kunu diretti u tal-©enituri. Meta persuni Down syndrome (shock), ma temminx li ©rat, kif ukoll wie˙ed dipressjoni u ovvjament dan jista’ jse˙˙ tibΩg˙ux issemmu l-mewt. ikollhom telfa u jkunu g˙addejin mill- ma jaççettax dan it-telf. Dan akkumpanjat lill-persuna li g˙andha Down syndrome proçess tal-luttu, ˙afna drabi, il-mod kif b’sintomi fiΩiçi b˙al nuqqas t’ener©ija, b’modi mhux mistennija. G˙alkemm Il-persuna Down syndrome g˙andha jirreja©ixxu mhux qieg˙ed jiftiehem. problemi fil-konçentrazzjoni, f’li tiftakar u f’li id-dipressjoni kultant ti©i minn barra ting˙atha l-g˙aΩla jekk tridx tie˙du sehem tag˙mel deçiΩjonijiet, u jista’ wkoll li jkollu minn hawn, ˙afna drabi ti©i mibdija minn fil-funeral jew xi ritwal li g˙andu x’jaqsam Kif wie˙ed juri s-sog˙ba, il-lum aktar minn ener©ija barra minn hawn. Ja˙seb li jixtieq esperjenza tad-dwejjaq b˙al ng˙idu a˙na mal-mewt. Jekk il-persuna mhijiex kapaçi qabel, hi xi ˙aga ndividwali u personali. Il- / tixtieq tmut u b’xi mod, ma jemminx li din l-mewt ta’ xi ˙add. Xi darba jew o˙ra dawn tiddeçiedi wa˙edha, g˙andha xorta, kemm persuni kollha g˙andhom il-mod tag˙hom se˙˙et verament. is-sitwazzjonijiet ta’ dwejjaq jaffetwaw jista’ jkun, ting˙atalha l-possibilta’. Ritwali kif jesprimu lilhom infushom. Il-persuni persuni Down syndrome f’˙ajjithom. li nsejj˙ulhom ‘non verbals’ b˙al ng˙idu Down syndrome, b˙all-popolazzjoni Wara li x-xokk jg˙addi, l-impatt tal-mewt / Madankollu mhux kul˙add ji©i depressed. a˙na xemg˙a mixg˙ula, fjuri quddiem xi kollha, jg˙addu mill-istess proçess. telfa jistg˙u j©ibu dawn ir-reazzjonijiet: ritratt tal-persuna mejta. Imma, il-proçess tas-sog˙ba jista’ jie˙u Xi drabi dan it-telf jitrasferixxi fuq episodji ˙afna iΩjed fit-tul u turi lilha nfisha li mhux Emozzjonali: rabja mal-mejjet u ma dawk o˙ra li qed ji©ru - ng˙idu a˙na, wara l-mewt Hu mportanti li l-persuna Down syndrome dejjem ting˙araf. Normalment persuni li temmen li setg˙u waqqfu l-mewt (tabib tal-©enitur jidda˙˙lu f’dar residenzjali. Dan ting˙atha l-opportunità li ΩΩomm xi o©©ett o˙rajn jistg˙u ja˙dmu fuq episodju ikrah jew anke Alla), ˙tija, anzjetà, biΩa’, paniku, ifisser li mhux biss tilfu lill-©enituri jew lil li tnissel memorja tal-mejjet. Dan jista’ jg˙in f’˙ajjithom u b’xi mod jaççettaw. Nies li tibdil ta’ burdati, dwejjaq, disperazzjoni, min jie˙u ˙siebhom imma wkoll darhom u biex jiffukaw u jo˙or©u dak li qed i˙ossu.

page 16 page 17 Imfakkar il-Jum Dinji tad-Down Syndrome

Ippruvaw kemm jista’ jkun li tevitaw tibdil Hemm nies li ng˙idulhom ’normali’ li ma©©uri f’dan iΩ-Ωmien ta’ u©ieg˙ u ta˙wid. jibqg˙u j˙ossu t-telfa g˙al xhur jekk mhux Il-persuna Down syndrome tista’ ssib snin. Matul dan iΩ-Ωmien il-persuna Down kenn fil-˙ajja ta’ rutina normali u f’post li syndrome g˙andha tasal biex tiftakar fuq mdorrija fih. G˙andek tg˙in lill-persuna li iΩ-Ωminijiet sbie˙ mal-persuna li mietet, qeg˙da f’luttu biex iΩommu kontinwità u ming˙ajr ma’ tkun imdejqa. Jista’ jkun konnessjoni bil-˙ajja ta’ qabel, biex tg˙in mbag˙ad li f’okkaΩjonijiet kemm ta’ lill-persuna Down syndrome ti©i f’tag˙ha. anniversarji jew festi, i©ibu memorji tal- mejjet/mejta. Imma dan ma jfissirx li ser Dejjem ag˙ti lill-individwu li g˙andu Down tkun imdejqa g˙al Ωmien twil ˙afna. Il- syndrome spazju u Ωmien biex ikun jista’ memorji huma mportanti u jista’ jkun li jesprimi dak li qed i˙oss. Jekk dik li jg˙inu lill-persuna Down syndrome G˙ar-raba’ sena konsekuttiva, mietet hi tal-familja, tajjeb li n˙alluhom biex titkellem fuq il-mejjet. Meta ji©u xi l-Assoçjazzoni Down Syndrome jesprimu lilhom infushom ma nies mhux anniversarji, tajjeb li nag˙mlu l-istess kif fakkret il-Jum Dinji tad-Down neçessarjament tal-familja, li normalment kien isir mal-persuna li mietet, kif ukoll Syndrome (World Down jift˙u qalbhom mag˙hom. tie˙duhom f’postijiet li kienu assoçjati mal- Syndrome Day). okkaΩjoni. Ftakru li kull min g˙andu Down syndrome Il-Jum Dinji tad-Down Syndrome hu differenti. Jista’ jkun li jdumu ma jifhmu Eugenio Galea ji©i mfakkar fil-21 ta’ Marzu. Din id-data ©iet Din is-sena dan il-jum ©ie mfakkar billi ©ie li l-persuna li mietet mhix ©ejja lura. G˙al M.GER; Dip.Ger; Dip.Appl.Soc.Stud(SW) mag˙Ωula g˙ax g˙andha rilevanza mat- organizzat disco g˙all-membri tag˙na, xi whud ji©u f’sikkithom mill-ewwel. Fi Trisomy 21 (3/21). Il-persuni li g˙andhom ˙biebhom u g˙all-familjari tag˙hom. Kienu studji li saru barra minn Malta, juri li dawk G˙al aktar g˙ajnuna tista’ tniΩΩel minn fuq l-internet il-kundizzjoni Down syndrome g˙andhom l-istess membri tag˙na li, wara s-suççess li kienu ppreparati g˙all-mewt tal-persuna publikazzjoni tal-Assoçjazzjoni Down Syndrome tliet (3) kromoΩoma 21 minflok par kif li kellna bid-disco tal-Milied, urew ix- ingliΩa b’xejn fuq il-web site tar-Royal College of suppost ikun hemm. B’hekk il-©urnata 21 xewqa tag˙hom li jer©a’ ji©i organizzat u g˙alhekk ˙admu qabel fuq kif ser Psychiatrists (www.rcpsych.ac.uk) i˙ossuhom meta tasal il-mewt, meta tasal ta’ Marzu – il-21 kromoΩoma u Marzu, li disco ie˙or – attività li tintg˙o©ob ferm il-mewt imorru a˙jar u Ω-Ωmien ta’ niket huwa it-tielet (3) xahar tas-sena. ˙afna miΩ-Ωg˙aΩag˙ membri tag˙na. U jonqos. kien g˙alhekk li l-Kumitat ˙aseb li jkun ferm sabi˙ u addattat kieku l-Jum Dinji tad-Down Sydrome, il-jum iddedikat g˙all-membri tag˙na, ikun iççelebrat minnhom u mag˙hom permezz ta’ disco – attività Eugenio Galea ferm mixtieqa u ma˙buba minnhom ilkoll. Kwalifika b˙ala Social Worker fl-1989. L-istudju li ppreΩenta kien fuq Familji bi Tfal Ûg˙ar li G˙andhom Down Syndrome.

Fl-1997 ikkwalifika fil-©erontolo©ija. L-istudju ppreΩentat kien fuq proçess ta’ luttu g˙all-anzjani. Fl-2004, b˙ala riçerka g˙all- Masters fil-Ìerontolo©ija, ippreΩenta studju fuq kif ir-reli©jon tg˙in lill-anzjani fl-a˙˙ar ta’ ˙ajjithom. L-aktar li ttratta kien fuq il-mewt ta’ xi persuni sinifikanti u kif i˙arsu lejn il-mewt tag˙hom.

page 18 page 19 Diskors Amministrattiv tas-Segretarju Ìenerali April 2009

Wasal iΩ-Ωmien wara sena o˙ra ta’ ˙idma G˙alhekk ˙adu l-21 b˙ala l-©urnata u t-tielet Min˙abba li l-G˙aqda kienet ©iet mog˙tija din l-attività mhix tant popolari iΩjed u forsi li ni©u quddiemkom biex nag˙tu rendikont xahar tas-sena Id-DSI u EDSA kienu talbu lill- tmien kompjuters ©odda mill-Ministeru tal-IT l-membri jridu xi tibdil fil-forma, biex forsi tax-xog˙ol li twettaq mill-Kumitat g˙al ©id membri tag˙hom biex kull sena jiççelebraw ta’ dak iΩ-Ωmien, il-Ministru Dr , l-interess jer©a’ jqum. tal-G˙aqda u l-membri kollha. Is-sapport din il-©urnata dinjija f’pajjiΩhom. il-Ministru responsabbli g˙all-Infrastruttura, u l-g˙ajnuna tal-membri kollha huwa ferm Trasport u Telekommunikazzjoni u s-Sur Servizzi tal-G˙aqda importanti biex l-Kumitat ikompli ja˙dem g˙all- G˙al din is-sena, g˙all-Jum Dinji tad-Down Philip Micallef, Chairman ta’ l-Awtorita tal- benefiççju tal-persuni li g˙andhom Down Syndrome, is-Sibt 21 ta’ Marzu 2009 il- Kommunikazzjoni Maltija fet˙u uffiçjalment il- L-ispeech therapy isir kull ˙mistax fiç- syndrome. L-appell lill-membri ma jonqosx Kumitat ˙aseb biex jorganizza Disco Party Komputer lab fiç-Centru, wara diskorsi wkoll Centru nhar ta’ Tnejn mill-professjonisti Rita biex ˙add ma jibqa’ lura milli jressaq xi fis-Sala Parrokkjali tal-Furjana, sabiex a˙na u miç-Chairperson tal-G˙aqda g˙all-okkaΩjoni. Micallef u Joe Agius. Dawn is-sessjonijiet su©©erimenti jew problemi li jolqtu lill-persuni wliedna niççelebraw din il-©urnata mal-bqija huma importanti ˙afna fl-iΩvilupp tat-tfal u li g˙andhom Down syndrome u li l-membri tad-dinja. Dan il-post intg˙azel g˙ax seta’ jigi Fil-23 ta’ Lulju 2008, g˙all-attività tas-sajf, huma mezz kif it-tfal jitg˙allmu jikommunikaw, j˙ossu li l-Kumitat jista’ ja˙dem fuqhom. milquh minn kul˙add u ma hemmx problemi kienet ©iet organizzata ©urnata fl-iSplash ja˙sbu, u jie˙du deçiΩjonijiet li jistg˙u jolqtu kemm tat-trasport kif ukoll tal-parke©©. Id- and Fun Park. Id-domanda g˙al din il-˙ar©a lilhom innifishom. It-t˙abbil ta’ ras biex jin©abru fondi biex disco kien ta’ DJ Commander. Il-prezz li kien dejjem kienet tkun popolari bil-membri li jitwettqu l-pjanijiet tal-G˙aqda ma jonqsux, ta’ ˙ames Ewro ©ie ssussidjat g˙all-membri jattendu jie˙du ˙afna pjaçir. Sfortunatament Keep-fit classes li jsiru kull nhar ta’ Erbg˙a imma ma’ nistg˙ux ingergru g˙ax sal-lum, li g˙andhom Down syndrome b’Ewro kull din l-attivta’ t˙assret min˙abba n-nuqqas ta’ fl-iskola Guardian Angel School. Dawn is- pass wara pass, imxejna u l-G˙aqda g˙adha wie˙ed. interess li din is-sena kien hemm g˙aliha. sessjonijiet li huma ssussidjati mill-G˙aqda, miexja ‘l quddiem u l-ittran©ar taç-Çentru huma miftu˙a g˙all-membri kollha tag˙na: g˙adu sejjer g˙all-benefiççju tal-membri Fl-4 ta’ Mejju 2008 ©iet organizzata ˙ar©a Il-party tal-Milied sar fil-Lukanda San Antonio Ωg˙ar, kbar, subien u bniet. kollha u g˙al dawk li jag˙mlu uΩu miç-Çentru ta’ ©urnata, li kienet tikkonsisti f”quddiesa Bu©ibba fil-19 ta’ Diçembru 2008, bil-muΩika biex jippartiçipaw fis-servizzi offruti. fil-Paradise Bay Resort Hotel fiç-Cirkewwa. f’idejn DJ Andre’. Din is-sena ma’ tqassmux Lezzjonijiet fil-Computer Wara l-ikla buffet fl-istess lukanda sar log˙ob rigali tal-Milied minn Father Christmas Nag˙mlu appell lill-membri kollha biex nuru tat-tombla, waqt lit-tfal u anke l-kbar, kellhom min˙abba l-poΩizzjoni finanzjarja tal-G˙aqda li L-G˙aqda kienet ibbenifikat minn g˙otja ta’ aktar interess fl-G˙aqda, nipparteçipaw aktar l-opportunità li juΩaw l-indoor swimming pool. mhijiex daqshekk tajba. Sfortunament l-unika tmien computers ©entilment mog˙tija minn fi ˙danha u fl-okkaΩjonijiet li jkollna, biex B˙as-soltu l-©urnata spiççat bit-te jew kafe ©bir ta’ flus li tag˙mel l-G˙aqda hija l-lotterija tal- dak li qabel kien jissejja˙ il-Ministeru tal- b’hekk nag˙tu kura©© akbar u rieda soda u biçça cake. Il-membri li g˙andhom Down Milied u min˙abba n-nuqqas ta’ konkorrenza Informatika. Bil-g˙an li l-membri jit˙arrgu fil- lill-Kumitat biex ikompli fil-˙idma tieg˙u ˙alli syndrome ©ew issussidjati u ˙allsu biss li jkun hemm biex jinbieg˙u l-biljetti, ma’ computers inbdew lezzjonijiet tal-computer l-G˙aqda tkompli tikber. ˙ames Ewro. konniex f’poΩizzjoni li nissussidjaw ir-rigali. hawn fiç-Çentru. L-IT teacher huwa ipprovdut Minflok il-Kumitat ˙a d-deçiΩjoni li l-G˙aqda mid-Dipartiment tal-Edukazzjoni. L-g˙an ewlieni tal-Kumitat ta˙t id-direzzjoni L-G˙aqda kellha ntrojtu minn lotterija t˙allas il-party tal-Milied g˙all-membri kollha taç-Chairperson kien u g˙adu li na˙dmu organizzata b’risq il-Lions Club ta’ Malta (Host). li g˙andhom Down syndrome. It-Talent Group fuq problemi li jolqtu direttament lil uliedna, L-G˙aqda ©iet mag˙Ωula biex tipparteçipa fil- li wie˙ed jista’ jg˙id huma diversi u komuni bejg˙ tal-biljetti tal-lotterija mal-membri kollha Attività o˙ra f’dawn iΩ-Ωminijiet tal-Milied F’dan il-grupp qieg˙ed ji©i mg˙allem kif mal-ma©©oranza tal-membri. tal-G˙aqda. Permezz tal-parteçipazzjoni tal- kemm popolari mall-membri huwa d-disco iΩommu l-poΩizzjoni tag˙hom u kif jimxu fuq membri fil-lotterija, imma mhux daqs kemm g˙at-tfal li sar fit –30 ta’.Diçembru 2008 fis- catwalk. Il-klassijiet qeg˙din isiru kull ˙mistax Attivitajiet wie˙ed jixtieq, l-G˙aqda, mill-bejg˙ tal- Sala tal-Paroçça ta’ Santu Wistin, il-Belt. ta˙t u jalternaw ma’ l-ispeech therapy. Il-Kumitat biljetti, ©iet mog˙tija 4 Ewro minn kull pakket il-knisja. Barra d-disco kien hemm ukoll jispera li dan il-grupp ji©i ukoll mg˙allem L-G˙aqda organizzat diversi attivitajiet g˙all- ta’ 5 Ewro li nbieg˙. Wara l-ispejjeΩ u sehem riçeviment Ωg˙ir. Il-muΩika g˙al din l-attività drama, aktar ‘l quddiem benefiççju tal-membri kollha. il-Lions Club, l-G˙aqda spiççat b’€458 li kienet f’idejn DJ Commander. Ukoll g˙al din jinkludi donazzjonijiet ta’ €27. Grazzi mill- l-attività l-Kumitat ˙a d-deçiΩjoni li l-persuni Il-programm ‘Reach’ Fis-sitt SimpoΩju Internazzjonali tad-Down qalb ta’ l-interess u l-g˙ajnuna tag˙kom f’din Down syndrome ma j˙allsux. Syndrome, il-Bord tad-Down Syndrome il-lotterija. L-adulti li g˙andhom Down syndrome fl- International (DSI) u dak tal-European Down Barra minn dawn l-attivitajiet, wie˙ed ma jridx edukazzjoni tag˙hom qeg˙din jiffaççjaw Syndrome Association (EDSA) iddeçidew li Is-Sibt 17 ta’ Mejju 2008 kienet ‘The World jinsa’ l-Quddies ta’ kull l-ewwel Ìimg˙a tax- problema. Fil-preΩent, wara li jispiççaw il-Form l-21 ta’ Marzu g˙andha tibda tissejja˙ b˙ala Telecommunications and Information Society xahar fiç-Centru, fejn wara wie˙ed ikun jista’ 5 fl-iskejjel regolari, uliedna li g˙andhom Down l-©urnata tad-Down syndrome. Il-©urnata u Day’ im˙addna mill-ITU – International jie˙u l-kafè u pastizzi u jilg˙ab it-tombla. In- syndrome mhumiex maturi biΩΩejjed u, aktar x-xahar intg˙aΩlu hekk g˙ax il-kundizzjoni Telecommunications Union. It-tema ta’ dik nuqqas ta’ attendenza g˙al din l-attivita, minn hekk, g˙ad m’g˙andhomx dawk il-life tad-Down Syndrome hija assoçjata mat-tliet il-©urnata ©iet iddedikata g˙all-mezzi ta’ imma prinçipalment g˙aç-çelebrazzjoni skills me˙tie©a g˙all-˙ajja adulta. L-G˙aqda (3) koppji tal-kromoΩoma 21 (trisomy 21). kommunikazzjoni g˙all-persuni b’diΩabilità. tal-quddiesa, t˙asseb lill-Kumitat li forsi temmen li preΩentament l-iStat ma joffri

page 20 page 21 l-ebda servizz jew programm li huwa mfassal ta’ fondi, g˙ax reklami, biex intaffu l-ispejjeΩ Joe Cassar Segretarju Parlamentari fuq Fil-26 ta’ Marzu iç-Chairperson iltaqg˙et maç- g˙all-bΩonnijiet tal-adulti Down syndrome tieg˙u m’g˙adniex insibu. Il-Gvern jag˙ti biss l-impiegi g˙at-tfal tag˙na, wara li di©a’ kien CEO tar-Richmond Foundation Doris Gauci biex ila˙aqqhom g˙all-iΩvilupp s˙i˙ tag˙hom massimu ta’ 700 Ewro g˙all-pro©etti Ωg˙ar. hemm laqg˙at mal-ETC u mal-Fondazzjoni fuq il-bΩonnijiet mediçi tat-tfal tag˙na wara li qabel ma jibdew ji©u ppreparati g˙ad-dinja Dawn il-flus, li l-G˙aqda tapplika g˙alihom Eden fuq l-istess su©©ett. L-Onorevoli Cassar jag˙lqu l-erbatax-il-sena u l-passi li l-G˙aqda tax-xog˙ol. Quddiem dan in-nuqqas ta’ kull sena, imorru biex jit˙allsu l-ispejjeΩ wieg˙ed li jqajjem il-problemi fuq l-impiegi trid tie˙u f’dan ir-rigward mal–awtoritajiet servizzi offruti, l-G˙aqda b’kolloborazzjoni amministrativi. g˙at-tfal tag˙na ndikati ma’ l-Onor. Ministru hekk kif kien issu©©erixxa l-Onor. Dr. Cassar. mal-Fondazzjoni Eden/Razzett qed tkompli . bil-programm pilota li ©ie estiΩ fuq medda Laqg˙at Fit-2 ta’ Marzu iç-Chairperson u Charles ta’ tliet snin b˙ala tranΩizzjoni mis-sekondarja Rigward il-problemi tal-kura medika g˙at-tfal Vassallo kellhom laqg˙a ma’ Nathan Farrugia g˙at-ta˙ri© fl-impjieg. Dan qieg˙ed isir ma’ Ic-Chairperson ˙adet sehem f’dawn il-laqg˙at tag˙na wara li jag˙lqu l-erbatax-il sena Dr. CEO tal-Fondazzjoni tal-Eden u ir-Razzett, numru Ωg˙ir ta’ membri tag˙na fiç-Centru hawn u seminars:- Cassar kien ta l-opinjoni li nifformolaw pjan Manuel Gellel, il-Kordinatur tal-programm il-Belt. Dan il-programm qieg˙ed ji©i ffinanzjat ta’ azzjoni biex ji©i ppreΩentat lill-Kumitat tal- Reach, Alison, Kordinatura tas-sessjonijiet mill-©enituri ta’ min qieg˙ed jibbenifika minn Fil-waqfa tas-sajf iç-Chairperson u Helen Affarijiet Soçjali tal-Kabinet. tal-adulti fi ˙dan il-Fondazzjoni u ddiskutew il- dan is-servizz. Il-©enituri tat-tfal li qeg˙din Mifsud kellhom laqg˙a mal-ETC biex jitkellmu programm ‘Reach’ u l-futur tieg˙u. jattendu dan il-program sejrin dalwaqt ji©u fuq policies tat-training b˙ala mezz biex jinstab Laqg˙a fis-27 ta’ Novembru 2008 mal- ssusidjati mill-G˙aqda grazzi g˙all-fondi li xog˙ol g˙all-membri tag˙na; in-nuqqas ta’ MEUSAC miç-Chairperson u Charles Vassallo Fl-1 ta’ April 2009 iç-Chairperson kienet bbenifikajna mill-iStrina fl-edizzjoni tal-Milied façiltajiet f’G˙awdex; benefiççji li wie˙ed rigward fondi mill-EU u kif wie˙ed seta’ mistiedna g˙all-‘business breakfast’ 2006. jistenna minn dan it-training u meta wie˙ed jaççessa dawn il-fondi. organizzat minn Mrs. Gonzi. Hawn setg˙a jara xi frott minn dan it-training; g˙aliex ˙adet l-opportunità biex tkellem liç-Chief Premises kul˙add ji©i mda˙˙al f’keffa wa˙da. Wara Fit-28 ta’ Frar 2009 laqg˙a pubblika Executive ta’ Mater Dei fuq in-nuqqas ta’ dan il-meeting tkomplew id–diskussjonijiet msej˙a mill-Partit Laburista bit-tema ‘Is-snin nformazzjoni rigward it-twelid tat-trabi Down Il-˙olma tal-Kumitat hija li barra li jkollna Centru mal–Eden Foundation fuq ‘The Employability ta’ l-iskola primarja u sekondarja – kif nistg˙u syndrome, dan wara l-korrispondenza li tag˙na, dan ji©i wkoll irran©at kemm jista’ jkun Skills Training Programme’. ntjebu’. Iç-Chairperson attendiet u g˙amlet kienet di©a g˙addiet fuq dan is-su©©ett bejn malajr biex inkunu f’poΩizzjoni li noffru aktar Ωew© su©©erimenti fuq is-su©©ett. l-G˙aqda u l-isptar u l-pakkett ta’ informazzjoni Settembru 2008 servizzi, u jkun aktar akkoljenti. Ix-xog˙olijiet li ©ie ppublikat mill-G˙aqda u mqassam fl- 1.Team multi dixxipplinarju biex jassessjaw fuq iç-Centru g˙adhom g˙addejien u dejjem isptar ndirizzat g˙all-familji li kollhom trabi Chairperson, Charles Vassallo, u o˙rajn lit-tfal b’diΩabilità u jg˙inu lill-©enituri jag˙mlu jinqalg˙u xog˙olijiet ta’ riparazzjoni. Il-Kumitat Down syndrome. fosthom M. Gellel il-kordinatur tal-programm l-a˙jar xelta biex it-tfal tag˙hom jibbenifikaw kien iddeçieda biex is-si©©ijiet ji©u mibdula, ‘Reach’ iltaqg˙u ma’ David Gauci tal-ADT minn edukazzjoni tajba. KonkluΩjoni g˙aldaqstant qed nistennew 20 si©©u mixtrija fuq teΩi li kien qed jag˙mel fuq it-trasport ming˙and Krea li jikkumplimentaw l-imwejjed pubbliku u kif seta’ jeffetwa lill-membri tag˙na 2. L-g˙aqdiet volontarji hemm bΩonn li jkunu Irrid nie˙u l-opportunità biex insellem lis- li kienu ©ew mixtrija wkoll ming˙and Krea. Dan fl-attivitajiet tag˙hom ta’ kuljum. preΩenti f’Kumitati fi ˙dan id-Dipartiment tal- seta’ jse˙˙ grazzi g˙all-AIWA u l-©enerozità Sinjura Antoinette Peel li wara 27 sena fix- Edukazzjoni fejn policies ji©u diskussi u mhux xog˙ol volontarju fi ˙dan l-G˙aqda, iddeçidiet tag˙hom. Fis-27 ta’ Settembru Iç-Chairperson flimkien biss il-KNPD li huma distinti mill-g˙aqdiet li tirtira mix-xena, u rriΩenjat mill-Kumitat. ma Saviour Dimech ˙adu sehem f’konferenza voluntarji. G˙an-nom ta’ kul˙add nixtieq nirringrazzjaha MagaΩin mtella’ mill-Malta Labour Party, bit-tema ‘ g˙ax-xog˙ol siewi u ˙idma kbira li hija g˙amlet Sena skolastika ©dida, problemi ©odda, sfidi Fid-9 Marzu 2009 iç-Chairperson kienet u l-interess kbir li wriet fl-G˙aqda tag˙na biex Il-magaΩin, grazzi g˙all-Bord Editorjali tkompla ©odda. Iç-Chairperson g˙amlet intervent mistiedna fuq il-PBS fi programm ta’ John dejjem timxi ‘l quddiem. Grazzi Antoinette. b’determinazzjoni kbira. Nixtieq infakkar fil- g˙an–nom ta’ l-G˙aqda rigward il-kurrikulu Bundy. bΩonn kbir li jeΩisti biex nirçievu xi esperjenzi, li mhuwiex addattat g˙at–tfal tag˙na u li Nixtieq nag˙laq billi nirringrazzja lilkom ritratti u jew xi artikli sabiex ji©u ppubblikati fil- Fil-18 ta’ Marzu 2009 ç-Chairperson u Mrs t-tfal tag˙na g˙andhom bΩonn iΩjed Ωmien preΩenti talli ©ejtu llum u lill-membri kollha tal- magaΩin. Jekk ikollkom bΩonn ta’ xi g˙ajnuna, Carmen Fenech (membru) kienu mistiedna biex jitg˙allmu u hemm bΩonn li jibqg˙u Kumitat, u l-helpers g˙all-˙idma tag˙hom fi il-membri tal-Kumitat ikunu lesti jg˙inukom fuq programm fuq in-NET. IΩ-Ωewg programmi aktar Ωmien fis-sistema edukattiva sakemm ˙dan l-G˙aqda. b’xi kitba u/jew intervista, jekk hemm bΩonn ikollhom il-maturità ta’ sittax-il sena ta’ tfal kienu mtella’ g˙all-awareness tal-‘World Down fid-dar tag˙kom stess. Syndrome Day’. normali. Iç-Chairperson sa˙qet ukoll fuq in- Antoine Gauci nuqqas ta’ edukazzjonu professjonali g˙all- Segretarju Il-magaΩin qieg˙ed ji©i ppubblikat b’diffikulta’ adulti tag˙na, u tag˙lim tul ˙ajjithom. kbira u b˙alissa qed jo˙rog biss darba fis- sena. Kull ˙arga nistampaw 1500 kopja. Il-flus 24 Novembru 2008 – Laqg˙a taç-Chairperson biex jit˙allas dan il-magaΩin iridu ji©u mill-©bir flimkien ma’ Pio Fenech ma’ l-Onorevoli Dr.

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