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”

Hepton 3  Hepton 2

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

My Experience as a DSA Volunteer

By Emma Payne, DSA Volunteer

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I had the opportunity to start volunteering with the DSA in April.  I had been made redundant and I wanted to start giving something back to my community.  The only contact I’d previously had of anyone with Down’s syndrome was when my colleague at work gave birth to a boy with Down’s syndrome, Matthew.  She was in her early twenties and it was a complete shock to her and her family.  When Vicky bought Matthew into the office, he was gorgeous and just as cute as any other baby.  That was around 15 years ago and in the days before Facebook. I’ve sadly lost contact with Vicky and I always wonder how Matthew is.  So when I realised that the DSA was based in Teddington, just a few miles from where I lived, I contacted them to see if I could help while I was between jobs.
They were brilliant. Amy and Vanda put their heads together and suggested I work with Kate Powell to provide support while she writes her blog each week.  Kate has Down’s syndrome and is in her mid-30s.  She has been working for the DSA for 14 years and is Editor of Down2Earth Magazine.  She is passionate about representing people with Downs Syndrome in a positive light  Kate is also full of confidence – she has given presentations to all manner of conferences – something that I hate doing in the working world.  She’s definitely taught me to not worry about what other people think.
It’s been a perfect 3.5 hour a week job for me.  It’s been a real joy getting to know Kate.  She’s a bundle of laughs and her family have helped to fill her life with activities, friends and events – there has never been a dull moment.  I’ve been privileged that Kate has built a trust in me and on a weekly basis we have shared our news with each other.  Kate is very diligent with her blog, she writes it all out on paper first.  Kate is the creative side of the blog, and I’m supposed to make sure the spelling is good and the grammar is good enough to make sure it’s readable.  I didn’t mention to Amy at my interview that spelling and grammar were never my forte!  Kate has given me some really challenging words to spell too (I’ve had to look a couple up to check I’ve advised her correctly).  I am now paranoid about my own grammar too!!  My favourite blog has to be the week she went to the Harry Potter Experience, I was actually so jealous!  – and of course the week I had an honourable mention as we talked about what she does on her work day with the DSA.
The DSA office is a lovely place too, having recently been chosen as the beneficiaries of a charity refurbishment by Morgan Lovell. All the decor and desks are sparkling. There is a kitchenette area in the basement with a pool table and I have to say the DSActive team play a mean game of pool at lunchtime.  Every Wednesday I’ve had lunch with Amy and Kate before we’ve got stuck into the blog.  That has to be the first lunch-hour I’ve ever had since I started working full time and I’ve thoroughly enjoyed the experience.
Rather sadly, I have secured a job, which won’t allow me, at this stage to continue to work with Kate and the team, and I am really going to miss them all.  I hope in the future to be able to work with them maybe on a more permanent voluntary basis, but for now Kate and Amy will have to struggle on without me!  I shall look forward to reading Kate’s blog every week and she’s promised me we can stay in touch!
Posted in General, Volunteers

DSActive Newsletter: July 2014

DSActive National Festival 2014!

Cardiff Trophy
The DSActive National Festival took place for the fourth consecutive year on Sunday, 29 June  2014. The event, which brings together DSActive football teams from across England and Wales, took centre-stage at the wonderful St George’s Park in Burton-upon-Trent. A record 16 DSActive teams took part in a fiercely contested and high-quality contest, with over 150 players battling it out to be crowned champions! The tournament provided an exciting spectacle for the several hundred coaches and family members watching from the sidelines. Click below to read the full article!
DSActive National Festival 2014! | DSActive – Football

DSActive Players Complete FA Level 1!

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It’s 4 July 2014 and six adults with Down’s syndrome from across the UK are proudly holding certificates above their heads and congratulating each other on an amazing four weeks. These six people, all regular participants in football sessions with DSActive, three from Cardiff City DSActive Bluebirds, two from QPR Tiger Cubs and one from Fulham Badgers, have just completed their FA Level One Certificate in Coaching Football. The course, which was the first coaching course adapted specifically for the needs of people with Down’s syndrome was delivered by experienced tutors from the Birmingham FA in Oldbury. Click below to read the full article!
DSActive Players Complete FA Level 1!
Posted in DSActive

Volunteer to help people with Down’s syndrome

Connecting employers and employees with Down’s Syndrome

25 Picture 061  Andyatwaitrose

WorkFit is a service which turns the ‘supported employment’ concept on its head. It’s a tailored service dedicated to training employers about the Down’s syndrome learning profile. Finding the right employment opportunities, for the right people.
Supported employment is not an end destination but a stepping stone in a career pathway. The DSA want to move away from the concept of ‘giving people something to do’ to an approach which progresses employees towards new outcomes, through training, confidence building and skills development.

We currently have two WorkFit Volunteering Opportunities.


Role: Employment Project Volunteer

Where: Teddington Office
When: Up to 4 hours per week
Ideal time commitment: Minimum 6 months commitment
Your responsibilities: As an Employment Project volunteer you will provide project admin support in the development of employment opportunities for people with Down’s syndrome. You will be responsible for maintaining the database of local supportive employers, local provisions/ agencies and statutory organisations.
What you will gain from the role : You will gain an in-sight into the charity sector with hands on experience of project management. This is an opportunity for a graduate or person to develop experience volunteering for a national charity and make a difference to our organisation.
Your skills: Computer literacy: Microsoft Office Suite. Meticulous eye for detail. Good organisational skills. Flexibility and ability to work unsupervised.
Your personal qualities: Commitment to equality of people with Down’s syndrome. Excellent oral and written skills. Interests in the charity sector and building relevant experience within project management.

Role: Volunteer Website Editor

Where: Teddington Office / Home Base
When: Initially to come to the office for 1 to 2 hours a week but later the work could be done at home
Ideal time commitment: Minimum 6 months commitment
Your responsibilities: As a Website Editor you will play an important part in improving our online content in order to provide up to date information to our key stakeholders. You will be required to update our website on a weekly basis and provide reports and recommendations on the website activity.
What you will gain from the role: You will gain an in-sight into the charity sector with hands on experience of on-line marketing, reporting and analysing digital activity using Google Analytics. This is an opportunity for a graduate or person to develop experience volunteering for a national charity and make a difference to our organisation.
Your skills: Good IT skills and able to work on websites. Excellent writing styles, with a meticulous eye for detail. Flexibility and ability to work unsupervised.
Your personal qualities: Commitment to equality of people with Down’s syndrome. Interests in the charity sector and building relevant experience within digital marketing.

How to apply

Please complete our Volunteer Application Form and send to Veronica Mulenga, Employment Development Manager at Veronica.Mulenga@downs-syndrome.org.uk
Posted in Volunteering Vacancies, WorkFit