Down2Earth group’s first ever blog post!

Originally posted on Down 2 Earth Group (London):

Hi everyone! Down2Earth group is a focus group of people with Down’s syndrome. We meet every month and talk about different topics. The Down2Earth group helps the DSA make sure the voices of people with Down’s syndrome shape what we do. We also have lots of fun (and cake)! Down2Earth group met on Sunday 7th September. We all hadn’t met for a while so we told each other what we had done over the summer. Lots of people had been holiday or visited friends and family. After a catch up, we talked about self esteem. The first thing we talked about was what makes us happy. The group came up with lots of great ideas of things that make them happy – including spending time with friends and family, Grange Hill, being with positive people and much more!

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Some of the things which make the Down2Earth Group happy

We then talked about our advice…

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Posted in Uncategorized

Update

Originally posted on Down 2 Earth Magazine Editor's Blog:

I  have now gone back to  dancing  and Swimming and Learning

Lots  of  new techniques. I  can Swim over 25 Lengths doing

Front Crawl  and backstroke.

The  Larodina dance group  are practising  modern and Ballet.

The Act too Dance Company we are working towards Dance Awards featuring

Disco fever, and Ballet.

I  go to a Swimming Club called the Dolphins and we have our

Own  Gala’s. I  also go to Feltham which has its own gala, and I  Swim Against Other People.

Also  Last  Saturday  it   was  my Mum’s  75th Surprise birthday Party.

My  Sisters Amy and Lorraine Organised the Party  and guests and my dad

Drove us to  my Sisters  house and mum thought  we Were having a roast dinner

but  we Surprised  her with a lovely  tea Party.

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Mum was really  Surprised  and was really happy  to seeing  everyone. She had a Ball

Mum   had lots of…

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Posted in Uncategorized

Second POSEIDON Workshop in Mainz

By Vanda Ridley, Communications Manager, Down’s Syndrome Association

Things have been very quiet on the POSEIDON front since I last reported on the workshop which took place in Oslo in January. Families and professionals from Croatia, Italy, Slovenia and Rumania came to Oslo to tell us about their lives and the kind of technology that would help them become more independent.
Since then the developers have been looking at all the evidence from the workshop, interviews and questionnaires and using the information to help them develop new technology. Karde our Norwegian partners have been looking at phone apps which will help with money management, Tellu also from Norway have been developing a navigation app, Fraunhoffer have been working on an interactive table which can be used in the home and Middlesex University and been working on virtual environments which will support people to rehearse new journeys in their own home.
The last weekend in August saw us meet again this time we invited families and professionals from Luxemburg, Switzerland, Portugal and the Ukraine. It was an opportunity to meet new friends and try new experiences.
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Printing at the Gutenburg Museum and enjoying a tour of Mainz
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A Tai Chi display from one of our German guests – it was beautiful!    Now which way do I go?
We also worked very hard. There was a a navigation prototype to try. It was set up to guide our guests with Down’s syndrome from the hotel to the Gutenburg Museum and included a bus journey. The navigation app used photographs which popped up to show landmarks along the way. Our guests enjoyed using the app and the general consensus was that the developers were going in the right direction.
On the Sunday morning everyone had a chance to try out an interactive table which could be operated by touch or just movement.
It was clear from discussions which took place over the weekend that there are three main areas where support from technology could make a big difference. Travelling about and having the ability to rehearse journeys, phone apps to help with shopping and general money management and apps to support scheduling and communication throughout the day. This is where the focus will be over the next six months prior to the first pilots. The pilots will take place over the period of a month and involve people with Down’s syndrome and their family, friends and carers using the technology and providing feedback to the developers.
Also discussed at the workshop was the importance of involving as many people with Down’s syndrome as possible. Down’s Syndrome Associations from UK, Germany and Norway have agreed to arrange for focus groups who can meet regularly and give feedback. As Middlesex University are involved from the UK they will be looking to hold these events at national office in Teddington. When there is more information about these events we will post it on the POSEIDON page of the website.
Posted in Poseidon

Jenny Hepton releases single for hospital who saved her daughter

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25 year old singer songwriter, Jenny Hepton from Walkern in Herts is releasing a single in aid of Great Ormond Street Hospital Children’s Charity. ‘Wait for you’ is written about Jenny’s daughter, Jayla, who underwent open heart surgery at the London hospital aged just 12 weeks.
Jenny, who started writing and playing music live only last year, said “Watching your 12 week old baby go through heart surgery isn’t something you expect to experience and as a parent you can feel very out of control. Writing this song was a way of expressing my emotions and feelings at a time where talking can be difficult. So many families go through the same pain and upset, but not all of them get the happy ending that we did. If this song reaches just a few people and raises a few pounds for Great Ormond Street then its worth it”

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Jayla, now 2, also has Down’s syndrome. When talking about her daughter’s short, but very eventful, life to date, Jenny said: “Jayla started her life in our local hospital’s Intensive Care Unit. She had problems breathing while feeding and then spent weeks in heart failure before her surgery, as well as having further investigations and treatments for stomach issues. The last two years haven’t always been easy, but Jayla has brought incredible light into our lives. When she smiles, the medical history all melts away. To see Jayla now, you’d have no idea of the journey she’s been through, she’s happy, healthy and running around with her big brother. Our family wouldn’t be the same without Jayla and we are incredibly grateful to our friends, relatives and charities such as Great Ormond St and the Down’s Syndrome Association for the help and support they have given us.”
‘Wait for you’ , Jenny’s debut single, was released on Monday 6 October 2014. The track is now available to pre-order from iTunes along with a music video on Youtube at http://youtu.be/pTfbECfVi3Q which tells the story of Jayla’s journey.
For more on Jenny Hepton, including more music and live dates, visit www.jennyhepton.com.
facebook.com/jennyheptonmusic | @jennyhepton | 07772 022481
Posted in Stories

New DSA Journal and Down2Earth Magazine

Journal 130  D2E 42
Cover photographs by Mariana Melo Lima

The DSA Journal 130 for Autumn  / Winter 2014

The DSA Journal 130 for Autumn  / Winter 2014 has now been mailed to our members. The Journal is sent out twice a year to all our members. It contains news, resources, information on benefits, features, profiles of groups, research, stories by our members and book reviews. If you would like to contribute to a future issue of our Journal please contact the Editor Ian Jones-Healey: ian.jones-healey@downs-syndrome.org.uk To join the DSA and receive our journal click here
CONTENTS OF JOURNAL 130:
Letter from the Chief Executive | Staff at the DSA | Awareness Week | My Perspective Photographic Competition | Morgan Lovell Transform the DSA Offices | Wales News | Information Exchange Days | All Change for SEN Legislation | Visual Resources for Social Inclusion
RESEARCH: Alzheimer’s Disease in Down’s Syndrome | Dual Diagnosis Forum | Poseidon Project
HEALTH: Health Update | Neck Instability
MEDIA: New Look for the Down 2 Earth Magazine | Shhhhh…it’s all on Shmedia
BENEFITS: For those claiming ESA
NEWS: The Mental Capacity Act | In Memoriam: Harry Whitaker
FEATURES: Prisca | Who really decoded Down’s syndrome | The LGO and you
TRAINING: Training at the DSA
WORK: WorkFit
SPORT: DSActive
IT: Using a Smartphone
OUR MEMBERS: My Son Oliver Hellowell | Aim for the Moon… that way you’re bound to reach the Stars! | Esmee
BOOK REVIEWS: Gross Motor Skills for Children with Down Syndrome | I Love You Natty | The Essential Guide to Health Care | KILLA
OBITUARY: Peggy Fray

Brand new look Down2Earth Magazine!

Down2Earth Magazine, the magazine for people with Down’s syndrome, by people with Down’s syndrome, has a brand new look this September. To keep things fresh and exciting for our readers, we have completely designed the magazine – and we hope you like it as much as we do! Highlights of the latest issue include interviews with people with Down’s syndrome, including the actress Sarah Gordy and wildlife photographer Oliver Hellowell, stories, artwork, poems, activities, reader’s recipes and much more.
The latest Down2Earth will be hitting the doorsteps of DSA members soon – so if you would like a copy and you’re not a member, now is the time to join! It’s easy to become a member – find out more on our website here. Remember, people with Down’s syndrome can receive FREE DSA membership for life.
Posted in DSA Journal

New Term – New Law

by Lesley Black (Information Officer – Education)
Any blog readers with school aged children will probably be aware of the change to the legal framework for special educational needs and disabilities. Part 3 of the Children and Families Act came into force on 1st September.
For a longer overview of the new Act, there’s an article in the latest copy of the DSA journal which will be hitting DSA members’ doormats shortly. Below are a few points that it will be helpful for parents to be aware of now.

Keep calm

The move to Education Health and Care plans will take place over several years. Children with existing statements may not be transferred to an EHCP for a while and until then it will be business as usual for this group. Annual reviews for example will be under the old system.
The groups that will definitely be affected in 2014/14 are:
• Children new to the system – for children with Down’s syndrome that will mainly be young children of preschool age who don’t already have a statement
• Children with existing non statutory EHCPs – that will affect those in pathfinder local authorities
• Young people leaving school and moving to college
For some more details of how the transitional arrangements will work, see the blog post from July http://downssyndromeassociation.wordpress.com/2014/07/21/send-reforms-in-england-the-next-steps/

Look out for

These are some changes at the local authority level which should be in place now:
• Local Offer – your LA must publish from Sept 2014 a local offer of provision they expect to be available for children and young people with SEND in their area. Some LAs are a bit behind on this – keep checking your LA’s website.
• Transition Plan – your LA must publish from Sept 2014 a transition plan setting out their timetable for transferring children and young people to the new system. Check this to find out when your child will be affected.
• Information advice and support – all LAs have a duty to make impartial information and advice available to parents and also to young people in their own right. Some of this is already provided through existing parent partnership services. The government has also made additional funding available for Independent Supporters to help families through the new system. Demand for support is likely to be high and it does not mean that every family will get their own Independent supporter.

Be informed

More details on the new legal framework will be on the DSA website shortly and we are working to produce some downloadable resources for families. In the interim we recommend the following sites:
IPSEA – http://www.ipsea.org.uk/ comprehensive information on the new SEND system
Summary flowcharts from Special Needs Jungle http://www.specialneedsjungle.com/new-send-system-flow-charts-together/

Seek advice

Not all the information you may have seen in the media about the new system is accurate. It is vital to seek proper advice. You can ring the DSA helpline 0333 1212 300 to speak to the Information Officer for Education or email us on info@downs-syndrome.org.uk
Posted in Education

WorkFit: Growth Leads to More Opportunities for People with Down’s syndrome

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WorkFit is a programme designed to improve access to mainstream employment and other meaningful activities for people with Down’s syndrome. The programme officially launched in 2012 and it is dedicated in supporting employers in creating work opportunities for people with Down’s syndrome and providing bespoke support to each organisation and prospective jobseeker throughout the UK.
The website www.dsworkfit.org.uk acts as the central hub connecting employers and prospective jobseekers. Through the website, employers can request profiles of available candidates looking for work, advice and guidance on developing roles and resources and aids. It also showcases various employment videos which bring to light the possibilities for employers seeking to employ an individual with Down’s syndrome and the dedicated support provision available. Prospective jobseekers have immediate access to employers who are offering jobs, information about how to get in work support and information on their welfare benefits.
Since its inception, we have worked closely with employers taking them through our bespoke support service. The training gives each employer a detailed insight into how to work effectively with people with Down’s syndrome making sure that each placement is sustainable and offers future development.

Best image of Ann in Starbucks     10 Bronagh Shifting Perspectives

Our unique approach has led to high praise from our employers, who have said:
A very good positive impact – I now have a lot of knowledge and understanding that I never had before. This was a great session that has given detail in all aspects of how to work with this group of people. Omega Training Services
Very positive and renewed my commitment. Travelodge
Thought I knew a lot about Down’s syndrome but opened my eyes to the importance of work in their lives – and the extent of their aspirations. I feel that it is very positive and after initial implementation it can be very positive for employer and employee. Cardiff University

Calling All Inclusive Employers

WorkFit is making a real and measureable impact to employers and people with Down’s syndrome. With two new Employment Development Officers based in Wales and North of England, we are looking to expand our reach and create more work opportunities for people with Down’s syndrome. We are currently looking for employers in the following areas; South East Wales, Manchester, Newcastle upon Tyne, Durham, London, Devon and High Wycombe. Register through the website www.dsworkfit.org.uk and receive a free WorkFit assessment.
I think all employers that have a suitable position for a person with Down’s syndrome should sign up to the WorkFit programme. Any concerns or worries they may have shouldn’t be a problem as the process of employing Jenny has been simple and it’s changed our work place for the better. Everybody deserves the chance to work if they want to. Supervisor Morgan Richardson Ltd
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Our end goal is to provide a smooth transition from education into employment for people with Down’s syndrome. WorkFit has the interest and aspirations of people with Down’s syndrome at its core. We want employment opportunities to be built around the positive skills of the individual.
For more information visit the WorkFit website www.dsworkfit.org.uk or contact the Employment Development Manager 0333 1212 300
Posted in WorkFit