Countdown to Down’s Syndrome Awareness Week 2015

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In the weeks leading up to Awareness Week we will be publishing a series of blogs about the lives of adults with Down’s syndrome today. We hope that they will inspire you to ‘Get Active and Get Involved’.

Dan says ‘Just be normal’. Dan is 25 and he lives in a shared house with support to lead an active life and to do the things that he chooses. Dan and his support worker plan his activities and his household chores for the week ahead. ‘I want for myself I decide, up to me to make my own choices’.
Dan spent a couple of enjoyable years at Fox’s Academy learning about catering and hospitality. He now uses his knowledge of catering and cookery at a social enterprise co-operative for people with learning disabilities. He also works with a caterer helping with deliveries, cooking and washing up.
‘Always learning things’. ‘Meeting new people’. ‘Learning with new people’
For one morning each week Dan helps out at a charity shop. ‘The staff are so kind to me and I try to be helpful’. ‘Helping people makes me feel good’.
Dan is a big sport fan and he keeps himself very active. He supports Chelsea and he regularly goes to watch his favourite rugby team ‘Harlequins’ with his dad and friends.  At the weekend a support worker takes Dan to play football and basketball with friends. He is also a mean snooker player! ‘Good to be in a team’.
Dan has learnt how to ‘keep safe in the community’. He uses what he has learnt to travel on the bus to the shops.  He enjoys walks, sometimes on his own, because they are ‘healthy exercise’.
Dan has been on some fantastic trips to the O2 arena to see the ‘X Factor’ Tour, Wrestling and ‘Take That’. He is looking for forward to going back to the O2 with his family to see ‘Mrs Brown’s Boys’. Dan’s support worker accompanies him and his friends to see films at the cinema.
Dan says that keeping busy helps him to ‘stay healthy, positive, confident and happy’.
If you want to try new things Dan’s says: Tell people what you want’ .‘You want people to listen to you’.
Dan now wants to meet new friends and be more independent.  He says ‘ask for help to meet your friends and to meet new people’.
A final piece of advice from Dan ‘try cooking!’
Posted in Awareness Week

A Non-Random Act of Kindness by Kerry Fender

A NON-RANDOM ACT OF KINDNESS

One day, soon after I brought Freddie home from hospital, I went to collect my daughter from school. I saw another new mum; she was relaxed and smiling, surrounded by a crowd of cooing admirers. Though we had been due at about the same time, her baby was weeks younger than Freddie, having been born bang on time and healthy, not premature and sick. I did not envy her ‘perfect’ baby, but I did envy her freedom from worry.

On the way home we popped into the corner shop to buy milk. As I was negotiating the narrow aisle with the pram a voice called out: ‘I’ve been looking out for you.’ I turned around to see a lady I knew vaguely by sight from the school, either she, or her sister (I was never sure which), was mum to a boy with Down’s syndrome who had been in my daughter’s nursery class.

‘I heard on the grapevine that you’d had a baby with Down’s syndrome,’ she said. ‘I didn’t know anyone else who’d got a child with the condition when I had my boy, and I just wanted to say this to you: the scary times — when they’re little and they’re poorly — they do get better.’ She cooed over Freddie and we swapped stories, not the usual half-joyful-half-exhausted tales of birth, night-feeds and nappies, but of the moment we first realised, of sobbing into our Christmas dinners because our baby was miles away in hospital. She told me how her son was growing up now that the ‘scary’ baby days were over, and explained that he wasn’t with her that day because he was away on a week-long school trip in the Lakes — the most ‘normal’ of activities for a lad his age.

So, thank you, Marina. Thank you from the bottom of my heart. I don’t need to tell you how much that conversation meant to me, you knew before you even spoke.Non random act of kindnessKerry’s blog,  ‘Extra-Ordinary: Down’s Syndrome, family life and me’ is available at: https://kerryfender.wordpress.com/

Posted in Stories

Supported Living

Choosing where to live is a big decision. More and more adults with Down’s syndrome are deciding to move out and live in their own home with support. This is called supported living.

Many families have contacted our helpline for information on supported living, including what supported living is, what their options are and how to get started. To help you prepare, we have just launched a series of short films on life in supported living. The films follow the stories of Dan, Pippa, Ruth, Anna and Karen, 5 adults with Down’s syndrome who enjoy life in their own home. Each video focuses on a different perspective: a parent, support workers and people who live in the house themselves.
We hope these videos will help parents, carers and people with Down’s syndrome who are thinking about leaving home come away with a greater understanding of what life in supported living can be like and how to plan ahead to make the move a success. We will also be producing an Easy Read booklet aimed at people with Down’s syndrome with stories from the people in the videos.
In addition to the Supported Living videos, we have created a series of factsheets for families. We have information and factsheets on:
We also have a guide specifically aimed at professionals working with people with Down’s syndrome who are moving into or currently living in a supported living setting.
We hope these resources will help people with Down’s syndrome and their families understand more about life in supported living and how to get there. Whilst supported living isn’t always right for everyone, more and more people with Down’s syndrome are deciding to move into their own home and doing so successfully. We encourage people with Down’s syndrome and their families to take a look at our resources and make a decision that’s best for them.
If you or someone you know is considering supported living, or is already living in supported living and would like some more information, please call the DSA Helpline on 0333 1212 300 or email info@downs-syndrome.org.uk.
Where to find further information:
Posted in Supported Living

WorkFit Candidate Gary

By Alexis Brown
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DSA Member and WorkFit candidate Gary lives in Sunniside, a village on the outskirts of Gateshead, situated in the North East of England. 

Gary likes to keep busy and attends college three days a week where he is learning gardening skills.  In his free time Gary plays football and attends a local gym.
During his vocational assessment with the Employment Development Officer, Gary said that he was keen to work and to help people.  His hope was that WorkFit would support him to find work that would give him an opportunity to help people.
Gary wanted to work because he had seen his Mum Saacha successfully manage her own hairdressing business for a number of years.  Gary’s brother and sister are also in employment which was another inspiration for him.
Gary was flexible about types of work, but he was keen to find an active job rather than a sedentary role.
Following a meeting with Dougal Reed, owner of Sunniside Garage, a work placement was organised.  WorkFit training was delivered to Mr Reed and another staff member who was identified as a natural mentor for Gary.
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The following feedback was given after the WorkFit training:
“It has made me more informed”.
“We treat Gary and people with learning difficulties with the care and support that everyone needs”.
In December 2014, Gary began a twelve week placement at the garage.  Working closely with his mentor, Gary has developed the skills required to valet both the interior and exterior of cars in preparation for sale.  This is important work as the cars must always look their best for potential customers.
Gary’s mentor said: “There is a lot to learn, but Gary is a good learner; thorough in his work and keen to develop new skills”.
The day I visited Gary it was bitterly cold, with snow just beginning to fall, but Gary was quite happy to be working outside as this picture shows!
Gary said: “I like working outside and I love the job”.
The transferable skills that Gary is learning during his placement at Sunniside Garage will help him to gain paid employment locally.
WorkFit supports young people and adults with Down’s syndrome to access meaningful work opportunities that can benefit the rest of their lives. We need your local knowledge and your on-going support to help us achieve this. Do you know of inclusive employers?  Do you know employers who are currently or who have the potential to support people with Down’s syndrome? We are guessing that for every young person with Down’s syndrome there is a working parent or relative or friend who could potentially ask at their place of work? Are you an employer that can help?
Tell us who the employers are by contacting the WorkFit team on 0333 12 12 300 or email us on dsworkfit@downs-syndrome.org.uk
For more information visit the WorkFit website www.dsworkfit.org.uk
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Posted in WorkFit

WorkFit Wales: Connecting Employers & Employees with Down’s syndrome (14-25)

By Simon James, Wales Employment Development Officer
Daniel Selway at work 1a

I first met Daniel and his mother Katrina in October last year. When I met Daniel he explained that he was looking for more variety in his week and would like the opportunity to try some work experience.

He had some experience working in a café environment, but felt he would like to try something else. Over the course of the next 2 meetings (and several phone calls) Daniel expressed a desire to work in his local library. He was a regular visitor to the library and enjoyed his time there doing his work on the computers or borrowing his favourite books and DVD’s. He already knew some of the library staff who seemed very kind and welcoming.
We discussed the various potential roles at the library and Daniel felt he had so much to offer as an employee. Daniel is a very polite young man who takes great pride in organising his many files in his home filing systems. He is also a great communicator and loves to engage with the general public.
I agreed to speak with the library and arranged a meeting with the library manager. The managers at Caerphilly library were very open to the idea of offering Daniel a work experience opportunity. They knew Daniel from his many visits and agreed that he would be a real asset to their library. I met Daniel and supported him with his work experience application forms and also his DBS check. Once the forms were submitted we had to wait 6 weeks for them to be processed.
A meeting between the library staff, Daniel and me was organised at Caerphilly library. It was an opportunity for the staff to meet Daniel properly and explain the role in more detail including all the various tasks involved. Daniel really enjoyed this experience and it was agreed that he would start work the following week. I spent time with the library staff explaining how to manage the placement. I explained the importance of planning Daniel’s work in advance. I also explained how Daniel best learnt new tasks and the need to break tasks down.
Three weeks ago, I attended the library for Daniel’s first day and he looked very smart and was ready to begin his new placement. He attends the library with his support worker who helps him learn and master his new tasks. Daniel has a variety of different tasks at the library such as sorting out books and DVDs to put back on the shelves, cutting out pictures for the children’s group to colour in, helping put up library display stands, shredding old paper and photocopying.
Daniel is learning new skills and is really enjoying his work experience at Caerphilly library. Daniel enjoys spending time with the library team.
WorkFit Wales supports young people aged 14-25 years with Down’s syndrome to access meaningful work opportunities that can benefit the rest of their lives. We need your local knowledge and your on-going support to help us achieve this. Do you know of inclusive employers? Do you know employers who are currently or who have the potential to support people with Down’s syndrome? We are guessing for every young person with Down’s syndrome there is a working parent or relative or friend who could potentially ask at their place of work?
Tell us who the employers are by contacting the WorkFit team on 0333 12 12 300 or email us on dsworkfit@downs-syndrome.org.uk
For more information visit the WorkFit website www.dsworkfit.org.uk
Posted in WorkFit

Secondary Transfer

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By Lesley Black, Information Officer (Education)

All around the country year 6 children and their parents will be awaiting national offer day on 1 March to find out whether they have a place at their preferred secondary school. However for children with statements or education health and care plans, the important date is two weeks earlier, on 15 February.

This is the date by which your local authority must issue an amended statement or an education, health and care plan (EHCP) naming the secondary school your child will go to. Other necessary amendments to the statement should also have been made by this date. If you haven’t received the amended statement or the EHCP, then contact your local authority and remind them of their legal obligation.
Not happy with the secondary school named?
In most cases things go smoothly and your LA will have named your preference of school, whether that is mainstream or special. In some cases there is disagreement and the LA names a different school or even a different type of school from the one you wanted.
Look again at the school named and arrange another visit. Is this a school that could meet your child’s needs and where they would feel included in the school community? You may now feel this would, after all, be the right place for your child.
If you are still not happy, you have the right to appeal. Appeals for children with statements / EHCPs  go to the First-Tier Tribunal (Special Educational Needs and Disability) not to the standard school admission appeals panels. Tribunal appeals can be lengthy and stressful so it’s important to get the right information and advice. Forms and further information are available on gov.uk https://www.gov.uk/special-educational-needs-disability-tribunal/overview Remember that the deadline for appealing is 2 months from the final statement / EHCP.
Your local Information, Advice and Support service http://www.iassnetwork.org.uk/ (formerly Parent Partnership) may be able to help. You can also ring the DSA helpline or email info@downs-syndrome.org.uk
Preparing for secondary school
Once you know where your child will be going, you can start preparing them for the transfer. Our secondary education page http://www.downs-syndrome.org.uk/for-families-and-carers/education/secondary/ has some information about starting secondary school and links to useful resources. Don’t forget that if your child needs things like additional visits, the secondary school must look at making reasonable adjustments to their usual way of doing things.
Photograph by Richard Bailey
Posted in Education

Having a Voice

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What is ‘Having a Voice’?

We are very excited about our new project, ‘Having a Voice’, which we are launching this year. Having a Voice’ is about giving people with Down’s syndrome a platform to have their say and be heard.

Having the opportunity to have your say and be listened to is important for everyone. We want there to be spaces where people with Down’s syndrome can express their opinions and share experiences. We also want to provide opportunities for people to influence their communities and wider society, as well as our work at the DSA.

What will ‘Having a Voice’ do?

We already run a focus group of adults with Down’s syndrome in Teddington called Down2Earth. Down2Earth have already helped us design our Adult Health Book and new look Down2Earth magazine – take a look at the Down2Earth London blog to find out more.
To reach as many people as possible, we plan to set up several more focus groups like the London Down2Earth in different parts of the country. These groups will inform the DSA’s work and help us develop resources for people with Down’s syndrome, including publications and a revamped easy to read section on our website, We also hope the new focus groups will provide opportunities for meeting new people, sharing experiences and discussing issues that are important to them.

Our plan for this year

In the first year of the project, we will:
• Support setting up three more focus groups across England. The first group will be in the South West
• Invite more people to join our London Down2Earth group
• Ask our focus groups what resources they would like us to create.
• Improve our People with Down’s syndrome web section in consultation with people with Down’s syndrome
• Create more opportunities for people with Down’s syndrome to share their stories on our website
• Review our revamped Down2Earth Magazine and see how we can to improve the magazine for its readers
• Support people with Down’s syndrome to contribute to local and national issues that matter to them
We have information about Having a Voice available on our website and in easy read.
We will be asking more of our members with Down’s syndrome to have their say about what we do. Adults with Down’s syndrome get free DSA membership for life. Why not join online today?
If you want to find out more about ‘Having a Voice’, please get in touch by emailing Amy Deakin at info@down-syndrome.org.uk.
Having A Voice is supported by the Freemasons Grand Charity.
Photograph by Mariana Melo Lima
Posted in Having A Voice