Capital to Coast

Lex, Graeme, Chris and Phil

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).
I made it too
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;
Time: 5:14:01
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?
Posted in Fundraising

SEND reforms in England – the next steps

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?

Take action:
  • Parents of young children entering the system for the first time
  • 2015 school leavers
Get accurate information and advice – you will be affected
Be alert
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
check your LA’s timetable in September. If your child is in a transfer group, take action
If you are a young person already in college, you may want to ask for an Education, Health and Care Assessment straight away, particularly if you are not happy with the help you are getting.
Be informed
Check the LA’s timetable for when your child will be transferred. Use the extra time to become well informed and hope that any teething problems will be ironed out.

More information

DSA website – follow us on twitter or Facebook  to get updates
If you need information about the transfer timetable in your area, your local Parent Partnership service  should be able to help
Council for Disabled Children
Contact a Family
Posted in Education

WorkFit: Connecting Employers and Employees with Down’s Syndrome

Jonathan Lowes, WorkFit Candidate
Veronica Mulenga, Employment Development Manager

Jonathan Lowes 1
My name is Jonathan Lowes and I am 25 years old I wanted a job doing Administration work as I done a qualification at Gateshead College doing NVQ Business Administration Level 1 and Level 2. I passed my Administration Level 1 and Level 2 I got a certificate.
I heard about WorkFit which is getting work for people who have Down’s syndrome. The WorkFit team came to Cox Agri and I had an interview which went really well. I had a work trial at the end of the trial I went for a meeting and they were very pleased with the work standard that I have done. WorkFit supported me all the way through the system.
My Job title is Business Support Administrator. My days of work are on a Monday and Wednesday afternoons. My jobs that I do are:
• Making tag Boxes
• Serial Numbers
• Barcoding
• Photocopying
• Scanning
• Typing
and I am learning new things all the time. What I like about Cox Agri is the family basis also I like the work and also like getting pay slips! Other activities that I do are:
• Work with my carer doing Administration Jobs
Also things that I like doing:
• Zumba
• Volunteering with GVOC and Sight Services doing administration.
My advice to people with Down’s syndrome is not to be worried getting out of the house, get information ready for your interview, get useful questions for the interviewers.
My advice to different organisations is to give Down’s syndrome people a chance the same as me.


WorkFit is a direct link between people with Down’s syndrome and employers. Employment opportunities are built around the positive skills of the person with Down’s syndrome. We have work ready candidates looking for meaningful work opportunities in London, Devon and High Wycombe. If you are an inclusive employer looking for talented, driven and committed employees find out how your business can be fully supported through WorkFit or call our Employment Development Manager on 0333 12 12 300.
Posted in WorkFit

Ann’s Flamenco Dancing

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Dancing is in Ann’s blood. She’s been dancing all her life but, ‘til now, had never tried her hand at mystical, magical flamenco. All that changed early last September when she was invited with her mother to a Spanish evening in her home town of Crediton.
The star turn of the evening was a stunning display of flamenco by Aneta, who, with a great swish of her skirt and graceful stamping of her feet, twisted and twirled her way through two dances, all the while using her beautiful slender arms and fingers to carve enigmatic, mesmerising shapes out of thin air.
Ann was captivated and had clearly been watching intently. After a brief interlude given over to birthday speeches and ceremonial cake-cutting, and with the music starting up again, she quietly slipped unnoticed onto the dance floor. Beautifully poised, she began to mimic Aneta’s moves in her own, enchantingly unique, way.
She danced with great feeling and style. But was she dancing purely for herself, delighting in being able to release the deep emotions from within? Or was she also using her dance to reach out, beyond her world, to the other guests? We will probably never know. No matter: the guests were clearly enjoying the display as, one by one, they turned to watch her twist and twirl her way round the floor, until the music stopped.

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Her mother was watching too, amazed and delighted in equal measure. She had seen Ann try many times to copy the moves of other dancers, but with limited success. Now she was seeing her produce an almost perfect copy of the flamenco Aneta had performed just a short while before. It is a memory Ann’s mother will treasure for years to come.
Posted in Stories

Moving into Adulthood Workshop

Vanda Ridley, DSA Communications Manager and Lesley Black, DSA Information Officer (Education)

photo 1

Last Saturday, Lesley Black, our Education Information Officer, and I travelled up to Hull to present a workshop for parents whose children are moving into adulthood.
This can be a difficult and confusing time and the aim of the day was to provide a timeline of when things should happen and to give parents some tools to help them plan for the future.
Discussion on the day covered a wide range of issues, including year 9 reviews, further education, adult social care assessments, supported living, the Mental Capacity Act and work. As there was a huge amount to cover in a day, we made sure that everyone went away with a pack of useful information and resources so they could continue investigating.
The pack included all our Factsheets on Social Care Assessments, Mental Capacity Act and Supported Living, which are all available to download from our website. The key message of the day was ‘Be Prepared’, start early and consider how person-centred planning and circles of support can help you plan to ensure you get the right support and services for your son or daughter as they move into adulthood.
Parents were very interested in the information about WORKFIT, our employment project. They thought it was a very positive thing and were keen to see it developed in their own area. We explained that we currently only have one person to run the project in England but are hopeful that this will change in the near future.
Lesley and I are very grateful for the help of Gillian from Downright Special who helped us find the venue, organise the catering and was there when we arrived to say hello and sort out IT issues. She was fantastic and so welcoming! A big thank you also to Gary and his wife who set up the room for us and made sure everyone was fed and watered throughout the day. Lastly thank you to everyone who attended for being such a supportive audience, we had a lovely day.
Posted in Transition

General DSA News June 2014

Kate, steve, dress 2a 1 Cover photo Luna a
Photographs: Mariana Melo and Eva Snoijink
New Gallery
We are in the process of creating a new gallery of contemporary images by and about people with Down’s syndrome and other learning disabilities. The gallery should be completed by the end of June. The gallery is being created by our Photographer in Residence Mariana Melo whose work on couples with Down’s syndrome who are in a relationship also features in the gallery. Mariana recently conducted a photography project at the Bethlem Museum. For her contact details and other work see Behance
Portrait of a Young Man with Down Syndrome
A father reflects on his son’s search for employment.
The Actor with Down’s Syndrome Tackling Dickens
An actor with Down’s syndrome plays the title role in BBC Radio 4′s new classic serial, Barnaby Rudge.
BBC page | Listen
Why is it OK for politicians to ignore people with learning disabilities?
Driven by his own experience, Gary Bourlet created People First England to give a voice to others with learning disabilities. Guardian article
Advice on staying safe online – for people with learning disabilities, and those who support them.
My Perspective Photography Competition
Gabrielle Shann shortlisted in Down’s Syndrome Association photography competition My Perspective
Talented Sevenoaks man with Down’s syndrome short listed for international photography award
Museum Newsletter June 2014 image
Langdon Down Museum Newsletter
June 2014 Monthly newsletter about the museum
Smarttourism – ‘Easy-read’ travel guides
Are you going on holiday? Smarttourism has some travel guides to different cities around the world. Here are guides to different cities that you can download:
Rome, Italy | Venice, Italy | Valetta, MaltaPrague, Czech Republic
Budapest, Hungary | Dublin, Ireland | Lisbon, Portugal
Looking after my mental health guide for people with learning disabilities
Posted in General

Young People with Down’s Syndrome – Moving to Adult Life

By Lesley Black, DSA Education Information Officer

Claire & Ben and flowers
Photograph by Mariana Melo
On Saturday 17 May, one of the warmest days of the year so far, 15 parents and a handful of DSA staff withstood the lure of the sunshine to explore the issues facing families with young people entering adulthood. It was a packed day, so much so in fact that we didn’t have time to cover everything we wanted to.
Parents came from a variety of London boroughs and had sons or daughters aged 14-19; some were at the beginning of the ‘transition’ process and others had young people already in college and maybe looking towards getting into work or moving out.
Veronica Mulenga, gave a brief introduction to our Workfit programme, which links employers with people with Down’s syndrome who want to work. She then introduced Tara Davis, an articulate and poised 24 year old young woman with Down’s syndrome. Tara told us about her college course, her volunteering and her work experience at Donna Karan in the West End. She is quite the fashionista!
Lesley Black, Education Information Officer, covered some of the options for young people leaving school and tried to lead people through the maze of a changing system as we move from statements and learning difficulty assessments to education, health and care plans. Everyone shared the frustration at the fact that the government has still not published the final version of the SEN Code of Practice and regulations. This meant that we couldn’t be as specific as we would have liked in giving information about the new system.
One of the aims of the day was to get parents thinking about planning for the future and involving their sons and daughters in decisions. Vanda Ridley, Communications manager, demystified the Mental Capacity Act, explaining how families must still be involved in any decisions made on behalf of their young person by others.
Participants were able to make good use of the information table where they could pick up further literature to take away with them, including the latest DSA factsheets on supported living as well as information on community care assessments.
Further workshops
We have received specific funding to hold further events in Hull and London. We’ll be running a transition workshop in the Hull area on 21 June. BOOK NOW to avoid disappointment.

The London workshop will be repeated later in the autumn.

If you know of a young person with Down’s syndrome who wants to work or get work experience, find out more about how Workfit can help.


Posted in General