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Keep up-to-date with what's happening at SBH Scotland.
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!
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
All change - the move to Personal Independence Payments (PIP)
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
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
SBH Scotland win National Charity of the Year
Spina Bifida Hydrocephalus (SBH) Scotland, has been named National Charity of the Year by a host of judges and scooped up three other accolades at this year’s Charity Champions Awards.
The awards, which are judged by an independent panel who include the Office of the Scottish Charity Regulator (OSCR), were set up to recognise and reward the country’s charitable sector and they announced the winners at the Marriott Hotel, Glasgow, during a glitzy ceremony.
Charity Champions CEO Warren Paul and event organisers at Paramount Creative said,
"We are delighted that Spina Bifida Hydrocephalus (SBH) Scotland, have won National Charity of the Year. They do such an amazing job and work tirelessly for their cause and that is why we are so honored to celebrate their hard work."
SBH Scotland were awarded four awards in total including the top gong, National Charity of the Year. Its chairperson, Dr Margo Whiteford, was awarded the Lifetime Contribution Award for her dedication to raising awareness of disabililty over the past 50 years.
A group of SBH Scotland fundraisers in Peterhead also won Volunteers of the Year, for their continued support and unique fundraising efforts.
Finally, SBH Scotland was announced as runner-up for Disability Charity of the Year.
Deborah Roe, fundraising director at SBH Scotland, said: “We’re honoured to win National Charity of the Year, as well as recognise Margo for all her achievement and commitment to improving lives over three decades. She inspires us daily and is a driving force behind everything we’re able to achieve.
“Our Peterhead ladies are also well deserving and we are grateful to everyone who sponsors, donates and volunteers to help us on our mission.
“We’ve just celebrated the 50th year of SBH Scotland and it’s amazing to see how far we’ve come in half a century and we’re proud to be recognised for the specialist work we provide across the country.”
If you would like to support SBH Scotland, call 03455 211 600, email or visit our web for more details.
Baby Bella inspires family to raise £1,500 in Kiltwalk
A Banchory dad, whose three-month old baby daughter, Bella, has spina bifida and hydrocephalus, is part of a team which raised nearly £1,500 for our specialist charity to help other babies with the same condition.
Martin McDonald, along with Bella's aunt and uncle, Anna and Grant, were sponsored to complete the 26-mile walk Aberdeen Kiltwalk from Duthie Park to Portach Green.
Spina Bifida occurs early in pregnancy and Martin’s daughter Bella was born in April with the condition which led to two operations in her first week of life, one to close the hole in her back, and one to fit a medical device to drain fluid which had built up in her brain as a result of Hydrocephalus.
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