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With You from the Beginning Through Every Age and Stage

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With You from the Beginning Through Every Age and Stage Annual Review 2017/18 With you from the beginning through every age and stage For more information or to obtain any of our other publications please visit www.dsscotland.org.uk Contents Welcome 03 Support 04-09 Inclusion 11 Information 14-15 Community 16-17 Fundraising 18-19 How we spent the funds 20-21 Looking forward 22 Thank you 23 Welcome to the annual review of Down’s Syndrome Scotland 2017-18 saw the organisation take a momentous leap March 2018 saw the biggest fundraiser to date take forward. As you will read in this report we reached the place. Thanks to the generosity of some of Scotland’s £1 million mark in income which is incredible – thank finest pop artists and our very own Katy Lironi, over you. We also saw the biggest Awareness Week to date 1,500 fans descended on the Royal Glasgow Concert where 6,596,065 people had the opportunity to hear or Hall to help raise £50,000. read about Awareness Week and our Sandfest concert. Thank you to all the keen, energetic and innovative Our Policy work continued to play a key role in helping fundraisers who have raised funds and donated to us achieve our goals. A significant step was achieved in help make 2017/18 the biggest yet. November when we were invited to give evidence to the Excitement continued to grow surrounding the World Health & Sport Committee of the Scottish Parliament as Down Syndrome Congress and I was delighted to see part of their inquiry into clinical governance. the Commissioners Programme coming to fruition with This helped us follow up on the points raised in our the selection of 12 adults with Down’s syndrome who health report Listen to Me, I Have a Voice published the are going to play a key role in the 2018 Congress. I look previous year. We continue to be a major player in policy forward to the year ahead and as Chair, welcoming over Ian Fraser, development affecting learning disabilities and see the 1,000 delegates to Glasgow who will meet new friends, Chairman government as a real partner in our cause. share in experiences from other families and hear about the latest research and some of the best practice out there today. I hope to see many of you there. On behalf of my fellow Trustees, I’d like to thank you for everything you do for Down’s Syndrome Scotland. Responding to the needs of people with Down’s syndrome, their families and carers through every age and stage of their life Family Support – There from the beginning A new workshop was developed this year for parents through every age and stage and carers of adults with Down’s syndrome who have been diagnosed with Dementia to provide them with a Our Family Support Service responds to the needs of good understanding of Dementia and how to positively people with Down’s syndrome, their families and carers support the person they are caring for. through every age and stage of their life. The demand for the Family Support Service continued parents received to increase resulting in the appointment of one more support on a Family Support Service Officer to help meet the needs multitude of issues of all those we support across the country. 998 The Team continued to deliver parental workshops on various topics including, ‘Supporting your Child’s Early families received Years Developing & Learning’, ‘Supporting your Child ongoing support to Learn Numbers’, ‘Supporting your Child to Learn 280 for complex issues* to Read’, ‘Understanding & Supporting your Child’s Behaviour’ and ‘Preparing for Puberty’. 2017 also saw people attended the move towards our first digital support tool which 12 parent and you can read more about on page 14. 100 carer workshops *more than three hours, not including travelling time 04 - Support There from the beginning through every age and stage Sadly I lost my husband to Case study Motor Neurone Disease and Findlay lost his devoted father. He then underwent further open heart surgery Milanyia Harasymiuk-Mackenzie and all the trauma had a huge impact in our lives. Service: Family Support Over the last 2 years, Down’s Syndrome Scotland (DSS) has Jo from DSS has been proven to be an invaluable support to our supporting myself and my family. My first encounter was 5 years ago in 2013 son through a very traumatic and challenging period. at the Loch Fyne Hotel in Inveraray. My husband It began with recommendations of experts who would and I went along with our 2 year old son, Findlay, be able to provide me with guidance and support with to meet other families and members of DSS. regards to my son’s congenital heart condition as well It was an informative meeting and good to know as contacts to support me through his sleep difficulties. that there was an organisation I could turn to for When I was at my lowest she was there for support and that we were not alone. Findlay then began mainstream school and was faced me, day or night, whether it was just to offer with further challenges. Jo was with us every step of a supportive ear or sound advice. Her support I did not realise until 3 years later how important the way. Attending cross functional meetings, supporting is still with us as strong as ever and I would that organisation would become in my life. me over the phone and in person, recommending child not hesitate to endorse such a worthy charity.” bereavement services, making presentations to adults and children on Down’s syndrome and it all proved to be a life line. Support - 05 Year in review... Board members and Commissioners at our Parliament event 04 - Support Three years of friends connecting together through ‘Friends Connect’ Our Friends Connect project was funded for 3 years He now has a lovely group of friends to invite Great friends, great times, new experiences, (August 2014 to August 2017) by The National Lottery to his 21st. At his 18th he had hardly any.” more confident, fab!” through the Big Lottery Fund. The project supported Both [mentees] now go on a bus on their 59 adults with Down’s syndrome to develop friendships I feel like Friends Connect has changed my own, both are now working with the PDSA. with each other and access social and mainstream daughter’s life – it helped her get out, see One is suggesting that he would like to community activities. new things and do new things with friends she made.” live independently. I believe all of this has Members in the Friends Groups enjoyed sharing developed with their confidence and the hobbies and interests as well as participating in new Confidence has greatly improved in all parts/ friendship they have built.” activities with the help of volunteer mentors, to aspects of life throughout the duration support them meeting up, finding out what’s going of Friends Connect particularly in social on in their local areas, using local amenities and circumstances. There has been a significant being better connected to their local communities. boost to self-image in that there is a friend Friends Connect ran Friends Groups in Edinburgh, to go out with, speak to and enjoy each Glasgow, Fife, Dundee and Aberdeen. This was the other’s company.” first project where the organisation recruited and It’s changed my life getting to ken everybody. worked with so many volunteers - 74 volunteers More confident as well.” were recruited throughout the 3 year project. Feedback was very positive and demonstrated that the Amazing! Loved it! Friends, relationships, fun, project was successful in achieving its aims. The most excitement - Thank you Brenda!” important part for the mentees and families has been the friendships developed in the group; ‘making new friends’, ‘meeting new people’ and ‘getting out more with friends.’ Support - 07 Helping Children Communicate with our Achieving Better Communication (ABC) Groups It was a busy year for our Communication Skills We asked those who used the service for feedback on Programme as we reviewed the programme with the the ABC groups. The key findings from our review were: aim of developing the service ahead of the new term. - Close to 85% were satisfied with the service (with Our aspiration is that every young person in Scotland almost half very satisfied) should be able to access support that will help them (and their families) to develop their communication - 79% felt that the service met their needs (very or skills. Thanks to the funding from the Scottish extremely well) Government, Bank of Scotland Foundation and - Almost 80% rated the quality of the service as high BlackRock we were able to continue rolling out the or very high programme to our 6 groups across the nation to provide this vital service. - Over 98% felt that their child’s confidence and communication skills had improved as a result of using the service - Over 55% are not receiving speech and language therapy input from anywhere else. Over the course of the next year we will work hard to improve on the areas highlighted in the survey and develop a service that is the best it can be. In 2017 and going into 2018 there was more demand for our service than we could accommodate. We hope this is something we can rectify in the new term as well as fulfilling our ambition of establishing new groups for Stirling, Kilmarnock, Inverness and Dumfries & Galloway. 08 - Support Our ABC Groups in Focus “ It creates authentic “ I can see the and sustained improvements in my opportunities for “ I think it supports the son’s speech already.
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