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By Emma Payne, DSA Volunteer
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!
DSActive National Festival 2014!
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 Players Complete FA Level 1!
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!
Connecting employers and employees with Down’s Syndrome
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
Graeme Card, BSc, FCIPS, MCMI.
The Capital to Coast is an annual event in my calendar and 2014 would have been my 10th year. I’ve been joined by many riders over the years, but the usual crew of Chris Phil and Mike have been stalwarts throughout. Over the years, we’ve had a few incidents – got drenched one year, Mike got us lost, Phil launched himself over his handlebars, and Chris toppled over on his bike. But I’ve had an easy time of it.
How times change…
This year started off badly when I managed to confuse several key events, like my 25th Wedding Anniversary, Rotary Dragon Boat Racing and double booked myself for the C2C weekend… So, with a choice between the Ride and my marriage, the Marriage had to win. Much apologetic grovelling to my loyal sponsors later, I promised to do an Unofficial C2C later in the year and whilst Chris, Phil and Mike did the ride without me, I merrily sunned myself in Sardinia.
Now as you can tell planning isn’t one of my strong points. So the “AltC2C” was organised for 20th July. The weather looked OK-ish and I had managed to persuade the DSA’s ever helpful Alexa Dizon to join us as “Official Unofficial ALtC2C Photographer”.
Everything was coming together nicely. Alexa joined us at Chez Dingley’s for 9:00 on the Sunday and off we went…
This would be a pretty dull story if nothing happened but never fear, six miles in, those lovely pot holes worked their magic leaving me with a beautifully bent back wheel.
Ignoring Phil’s helpful “Well just remove the rear brake blocks and ride on the front brake”, and after letting the surrounding air turn down from its colourful shade of blue, we called the “Cyclists AA” – The Mem Sahib’s (a.k.a. Rowena & Maggie, Graeme and Chris’ wives). Fortunately we’d parked in a lovely part of rural West Sussex, and tucked ourselves into a seldom used gateway. At least, it was seldom used, until of course, we used it, then the farmer decided he wanted to use it; or was he a poacher? We weren’t going to argue with his 4×4 and rather large shot gun in any event.
This little interaction as aside, we awaited said recovery vehicle which arrived with Mem Sahibs and Chris’s daughter Claire plus Claire’s reliable steed.
So off we go again, with me on the “Ideal” machine…
And that was it really, another 54 miles of gentle cycling across fabulous English countryside with only Devil’s Dyke to face – easy really.
Except for the fact now my new biked decided it was inappropriate for the lowest front gear ring to engage when I needed it most, that is; when going uphill. But hey! I had a bike! Alexa’s bike decided to come out in sympathy with mine, with her chain coming off, every few miles.
These minor inconveniences notwithstanding, we made it to Saddlescombe Farm (about half way up!) only an hour or so behind schedule. After a snack and refills of water we managed to get to the top of the Dyke. Huzzah! The biggest climb now over it, it was all plain sailing from here. Or was it?
A gentle spin downhill into Brighton and we arrived at our usual end point (Crowds, fanfare and music sadly missing).
This is where Alexa left us to head back on the train, you can tell she looks happy to be leaving 3 old codgers behind!
So, all we had was a short 30 odd mile ride back to Horsham, trying to ignore the nagging noise my bike was making, which got progressively louder. Surely it was just the mudguard rattling? Yes yes of course, and what about that bump I kept getting? You know the sort, like you’ve just ridden over a speed hump. Well I was appraised of what that was when we were 10 miles from home and the sound of gunfire rang out. Well OK maybe not gunfire exactly, but it sure sounded like it from my position right on top of it… not only had the inner tube burst but the outer casing. Cue time for air to turn blue again.
I was really beginning to think someone didn’t want me to do this ride now, maybe someone with a wicked sense of irony as I’m sure I’d said something stupid like “well I’ve never had a puncture on the C2C before”, just minutes beforehand.
After a quick patch up we were back on the road – the tyre finally giving out on its “Swish-Bump-Swish-Rattle-Bump” routine just a few hundred yards from home. Phil on the other hand; well we left him just inside Horsham awaiting his rescue car!
Anyway, the unofficial Ride completed, here are the stats;
Elapsed Time: 8:46:00 (yes it took a while to sort out the repairs)
Avg Speed: 12.1 mph
Max Speed: 31.0 mph (the other side of Devils Dyke)
Elevation Gain: 741 m
But the IMPORTANT Stats are here….
Why I do this? My Daughter Emily just happens to have Down’s syndrome
What do I do it for? To raise funds for the DSA along with my fellow riders
How much have the team raised? Well over the years we must be approaching £30,000 now. Generally it’s £3,000 a year there or thereabouts.
This year sponsorship is a bit light, so if you’d like to sponsor us please visit the website. But since Chris and Phil have done the ride twice this year, perhaps their sponsors should double their donations?
Well, it’s been a long haul, from the Government’s original 2011 Green Paper, Aspiration and Support, to pre-legislative scrutiny of a draft Bill, to the Children and Families Bill (now Act) and several drafts of a new Code of Practice. And still it feels rushed…
Part 3 of the Children and Families Act, which introduces the new legal framework for special educational needs and disability (SEND), will come into force on 1 September. A few bits of the jigsaw are still to be placed, in particular the Code of Practice still has to receive final approval from the House of Lords. This is the reason why the Down’s Syndrome Association has delayed in providing information which might change. This has been frustrating for us as well, but our first priority is to give only high quality and accurate information.
The website will be gradually updated over the summer to reflect the changes in the law and the move from Statements of Special Educational Needs to Education, Health and Care Plans.
In the meantime, we are aware that one of parents’ main questions is how far the change to the law will affect their child from September. As the government has now published some transitional arrangements, we can give a broad outline of how this will happen. We are focusing on children with statements as the vast majority of children with Down’s syndrome will fall into this category.
It won’t all change overnight on 1 September
Local authorities have until April 2018 to move all children with statements over to the new system.. For example, if your child is going into year 1 this September, the latest the LA could transfer him would be the spring term of year 4. There will be a shorter, 2 year timetable for young people with learning difficulty assessment (LDAs) in college.
LAs must publish their own transitional plans and timetables by 1st September and there are certain groups that must be transferred as a priority. Some LAs may want to move faster than others. Transfers will happen via a specific transfer review that will take the place of the normal annual review.
For any child with a statement who is not in a transfer group, it will be business as usual. Legal rights relating to the statement remain unchanged. Reviews and appeals will happen according to the old system and code of practice.
Who will be affected in 2014/5:
Anyone who is entering the system for the first time e.g. children in nursery where you haven’t yet asked for a statutory assessment
Young people leaving school and moving to further education or training
Anyone who has been given a non-statutory EHCP as part of a Pathfinder area
Priority groups according to your LA’s transitional plan – these are likely to be children moving to a different phase of education or a different type of school and young people coming up to a transition review in year 9
Can I ask for my child to be transferred earlier than the timetable?
There is no specific right to do this. If your child is in school with a statement you will generally have to wait. However young people already in college can ask for an education health and care assessment from September. They are a priority group as they currently have fewer rights than school pupils.
Will my child lose her statement because of the changes?
No. Existing statements must be maintained. When it comes to transfer, the legal threshold for an EHCP is the same as for a statement so no child should lose out.
What should I be doing in September?
Parents of young children entering the system for the first time
2015 school leavers
Get accurate information and advice – you will be affected
If your child has a statement and is:
in nursery moving to reception in 2015
in Year 6 moving to secondary school in 2015
in Year 9
moving from mainstream to special school or vice versa