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European Accessibility Act is Under Threat

Millions of people in Europe with disabilities are still excluded from using basic products and services that are taken for granted by others such as withdrawing money from an ATM, entering a bank, a school, a university or any public building, using the underground etc. Europe needs a strong and ambitious European Accessibility Act but currently it's under threat!

European Accessibility Act

Proposed back in 2015, the European Accessibility Act (EAA) hoped to enhance the rights and reduce discrimination across Europe for those living with disabilities in all areas of life; from travel and healthcare to banking and product pricing. Since then much of the proposed Act has been under negotiation with compromises sought on issues such as the built environment, public procurement, transport or the definition of "persons with functional limitations".

Currently proposed amendments water down the Act to the extent that it becomes meaningless.

With the European Accessibility Act under threat we’d like you to join the International Federation of Spina Bifida and Hydrocephalus in engaging your MEP’s, asking them to support the rights of persons with disabilities by substantially amending the Internal Market Committee of the European Parliament's (IMCO) report in the plenary in June and promote a strong and ambitious Accessibility Act.

The final plenary European Parliament vote is scheduled for mid-June so we need to take action now!

Why is the European Accessibility Act relevant to persons with spina bifida and/or hydrocephalus (SBH)?

  • It will enhance their right to independent living as they will be able to manage themselves further in aspects of life such as banking, e-commerce and other services.
  • Thanks to increased cross border trade and mobility, persons with SBH will be able to profit from a more competitive price of products and services
  • more products and services will be accessible and therefore easier to use in the areas of ICT, transport, banking and retail
  • accessibility of transport (infrastructure, ticketing machines, booking processes, information etc) will be improved (if transport stays as part of the EAA), which will enhance the possibility for persons with SBH to travel.
  • accessible transport and therefore increased mobility will improve the participation of persons with SBH in education, labour market and society in general
  • the EAA will provide a framework for accessibility requirements which can serve as a point of reference for persons with SBH when they travel to other countries and want to use services or products there
  • EAA will reduce discrimination of persons with disabilities including persons with SBH in the internal market by providing (certain) accessible products and services

What can you do?

  • Spread the message on your social media channels using the hashtag: #AccessibilityAct
  • Say why accessibility is important for you?
  • Post pictures of inaccessible situations to illustrate what the problems are, curbs, buses, atm machines etc
  • Tag in your MEPs and other government officials.

Want more information?

For even more information please visit IFSBH’s website or visit the European Disability Forum

Bowled away by Lynda Weir Memorial donation

SBH Scotland have been 'bowled over' by the incredibly generous donation from the annual Lynda Weir Memorial Triples Bowling Competition donation of £1062.

Over the years the Bogleha Bowling Club have raised a total of £3,500 and we're very grateful for their continued support which allows us to provide specialist support and information to all those who call us for help.

In their own words,

"Nearly seventy bowlers from across Cowal and beyond travelled to Bogleha' Bowling Club on Sunday 30th April for their annual invitation mixed triples, playing for the Lynda Weir Memorial Trophy. Once again as in previous years, mother nature was very kind on the day as the sun peeked through most of the day before bathing the green in sunshine for the final stages. This popular event acts as the regular curtain raising tournament in the Bogleha' bowling calendar.

The bowls throughout the day was fun and competitive, with all the bowlers engaging in the true the spirit of the competition. The semi-finals and final were keenly contested by all the qualifying teams, with some familiar faces making these latter stages. Indeed Lesley Weir was looking to etch her name on her sister's trophy for a second time, however her and her team came up just short to a visiting triple from Brookfield Bowling Club near Johnstone.

At the close of the day's play, tournament organiser Andy Weir on behalf of his family expressed his extreme gratitude to all those who had supported his sister's memorial trophy once again so early in the new season and hoped that next year's tournament would be a similar success. Andy said how pleased he was to see all the bowlers enjoying themselves, which is exactly the way his sister would've wanted it. He also thanked those local people and businesses who had donated so very generously to the enormous raffle and superb afternoon tea, those who had competed in the 'spider', had thrown loose change into the charity buckets or bought raffle tickets and to those who had assisted with the bar and the catering.

Andy was delighted to announce that an unbelievable £1062 had been raised over the course of the day, and thanked the bowlers and spectators for their extreme generosity. As usual this sum would be donated to Spina Bifida Hydrocephalus Scotland, where the money is put to good use to improve the lives of those affected by both conditions. This now brings the total raised for the charity over the past six years to over £3,500."

And the winners of the day were:

All change - the move to Personal Independence Payments (PIP)

DWP PIP payment logo

The move from Disability Living Allowance (DLA) to Personal Independence Payments (PIP) is causing a lot of uncertainty for many people aged 16 to 64. The SBH Scotland Financial Support Team have been dealing with our members who are currently affected; working to support them through a system which has remained largely unchanged for a great number of years.

This can be a scary time for many who are unsure of what the changes to benefits will mean for their individual circumstances, so we’ve written some top tips and dedicated a web page as a simple guide to PIP, how to apply or to appeal but most importantly to reiterate that we are here to help and advise all those people in Scotland affected by spina bifida or hydrocephalus.

Email us or call the SBH Scotland Helpline on 03455 211 300.

Top Tips:

  • For all SBH Scotland Members, the SBH Scotland Financial Support Service are here to offer comprehensive advice for PIP applications, at any stage in your PIP process. They can help you to complete your forms, offer advice on your assessments and support you with mandatory reconsiderations and appeals.
  • For those who are not members of SBH Scotland other agencies like the Citizens Advice Bureau should be able to assist you with your application.
  • Before filling out the form please read the assessors guidance so you’re giving the information they now use to assess for PIP rather than DLA.
  • Please keep copies of all documents you send away. This is useful if documents are lost in the post or if a reconsideration is requested. If you have no access to a photocopier you could use a camera or mobile phone to take photos of your documents.
  • When you go to your assessment, take along a friend or relative who knows you well for support and to take notes.
  • In your assessment it’s important to talk about the things you have difficulty with or can’t do at all. The assessor probably won’t know anything about you so it’s important you go over everything, even if you've already told them on the form.

For more information visit our Simple Guide to PIP

Airspace EK take one giant leap for SBH Scotland

Staff fly through the sky at Airspace

A Team of eleven employees from Airspace East Kilbride, have pledged to raise thousands of pounds for Spina Bifida Hydrocephalus Scotland (SBH Scotland) by taking part in a jump of a different kind! On Sunday 26th March they’ll be following their motto of ‘living life adventurously’ by swapping trampolines for bungee cords as they jump 132ft from the bridge at the Pass of Killiecrankie in Perthshire.

The Airspace team got involved with the specialist charity when they heard that over 700 people are affected by the lifelong, complex disabilities of spina bifida and/or hydrocephalus in Lanarkshire alone and that the funds they raise would directly go towards the support of these families.

Chris Rome, Marketing Manager for Airspace EK said, “Our ethos at Airspace is that everyone has ‘space to fly’ and we’ll certainly get that on this exhilarating challenge. The 50 mile per hour jump will be worth it if we can raise lots of money for SBH Scotland.

He continues, “We’ve got counter boxes in our café and at reception and we’re very grateful to everyone who’s donated so far. This charity receive little statutory funding and rely on fundraising to continue vital work in our own community so it’s important to us that we raise as much as we possibly can.”

SBH Scotland offer a lifetime commitment of support and information to all those in Scotland affected by the spina bifida and/or hydrocephalus. Established in 1965, the charity now supports over 3,500 children, young people, adults, their family members and carers every year in Scotland.

Lynsey Hamilton, SBH Scotland Fundraiser says, “The bungee jump at the Pass of Killiecrankie is going to be a fantastic event with over 50 people jumping for SBH Scotland. We’re very excited that Airspace East Kilbride are getting involved, their support will make a direct difference to the lives of children that we work with.”

To take part in the Bungee Jump yourself please contact Lynsey Hamilton on 03455 211 600 or email lynsey.hamilton@sbhscotland.org.uk. To support the Airspace EK team pop in to give a donation or donate via their online sponsor page at www.justgiving.com/fundraising/AirSpaceEK Full details at www.sbhscotland.org.uk/bungee-jump

CBE for SBH Scotland Chair, Dr Margo Whiteford

Spina Bifida Hydrocephalus Scotland are delighted to announce that their Chairperson, Dr Margo Whiteford, has been awarded the title of CBE (Commander of the British Empire) as part of the 2017 New Year’s Honours List for her services to charity and health.

Dr Whiteford was diagnosed with spina bifida at birth and is paralysed from the waist down. Despite spending most of her life in a wheelchair, she has dedicated her time to charitable causes, taking particular interest in organisations that support lifelong conditions.

Dr Margo Whiteford

A longstanding member, and now chairperson, of Spina Bifida Hydrocephalus Scotland (SBH Scotland) Dr Whiteford is also a board member of the International Federation for Spina Bifida and Hydrocephalus and was elected president of the organisation in 2013. She is also chair of a global expert panel which looks to improve treatments for people with spina bifida on a worldwide scale, and she works closely with the Global Summit for Food Fortification in Tanzania.

Dr Whiteford dedicates her efforts to raising awareness of the complex conditions. In 2002 she took part in the Great North Run, where she not only completed the 13-mile event in her wheelchair, but managed to convince fellow competitor, Gordon Ramsay OBE to become an honorary patron of SBH Scotland. Since taking up the role in 2005, the TV chef has raised thousands of pounds for the organisation. In 2009 Dr Whiteford added to her long list of fund raising achievements when she completed the London Marathon, raising £15,000 in the process. She has also completed the Great Scottish Run on four separate occasions and most recently has zip wired across the River Clyde.

Chief executive of SBH Scotland Andrew H D Wynd MBE said, “I would like to offer my congratulations to Dr Whiteford whose support over the past 30 years has been indispensable to SBH Scotland. She is an incredible woman whose achievements demonstrate that physical disability does not have to be a barrier to success.

“As a voluntary member of organisations like ours, Dr Whiteford utilises her spare time to attend meetings and seminars across the world. Her dedication to improving the lives of those affected by these complex conditions is irrefutable and she is truly an inspiration to all of us.

He continues “Her parents were part of the original group that founded SBH Scotland back in 1965 with the aim of providing support to those affected by the condition. It is incredible that just 50 years later we are seeing their daughter being recognised for her own contributions to this cause. She is a tireless campaigner and the team at SBH Scotland could not be happier for her latest achievement.”

In her professional career, Dr Whiteford continues to break stereotypes, proving that being in a wheelchair does not preclude her from working in challenging environments. Originally graduating from the University of Dundee with a BSc in Pharmacology, she went on become a qualified medical practitioner. Today, she works as a consultant clinical geneticist at the Queen Elizabeth Hospital in Glasgow, where she has diagnosed, and supported hundreds of children and adults who are affected by genetic conditions.

The final word comes from Dr Margo Whiteford herself,

"I'm just glad that my parents are able to witness this after the gloomy picture that they were given about my future when I was born. To all parents of children with spina bifida never give up dreaming about what might be achieved."

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Our latest news

European Accessibility Act is Under Threat
European Accessibility Act is Under ThreatAccessibility for all is under threat across Europe, we look at how this has happened and what can be done

Bowled away by Lynda Weir Memorial donation
The annual Lynda Weir Memorial Triples competition raises £1062 for SBH Scotland.

All change - the move to Personal Independence Payments (PIP)
Moving from DLA to PIP - it's all change but we're here to support you.

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