parkingbay

“Want my space? Take my disability!”

Guest post from Chris Welch who is campaigning for the law to be enforced to stop people using disabled parking spaces when they shouldn’t.

I am registered disabled and I use crutches or my wheelchair to get around. I am married and have five children aged 3 to 10 years. If it wasn’t for my car, I’d never get out anywhere, especially when winter comes. But let’s backtrack a bit.

Have you heard of the spoon theory? It rings true with a lot of disabled people, including myself. The idea is that you’ve 12 spoons per day and each spoon represents part of your energy allowance for the day. A lot of people with disabilities have a very limited amount of energy, so everyday activities are a huge challenge.

Going shopping

My nearest superstore is a mere five minute drive away. I get up and get dressed and take my medications and my wife kindly fixes me some breakfast; out of the 12 spoons I had at the start of the day I have used at least three already.

I drive over to the supermarket from my house. I arrive to find that not one of the disabled drivers parking spaces is free. I search for a space near enough and without any other vehicles near it so that I can park my car and get my wheelchair out with the help of my wife. The whole car park is on a slight incline, not enough to notice in a car, but you notice it when you’re pushing a full trolley and even more so when you are attempting to get to the shop in a self-propelled wheelchair.

On my way to the shop I notice many of the cars parked in disabled spaces do not have the necessary blue badge displayed. I am already exhausted from the short trip across the car park when the driver bounds back to his car. “Excuse me, do you realise that this space is reserved for the disabled?” I ask. “Yeah but I was only a few minutes getting some cash out mate” responds the offender and he gets in his car and drives off. His ‘few minutes’ just happened to coincide with my attempt to find somewhere to park.

I had to do something about it

The extra exertion to get from my car to the shop means I cannot immediately join my wife shopping, so she has to leave me in the coffee shop. Whilst I am sat there I feel the waves of fatigue pressuring me to sleep. I sip my coffee and then I begin to feel something else. Anger.

I was sick of hearing “I’ll only be five minutes”, “I’m just getting some cash out” or the one that really annoys me “I’m waiting for someone” – as if that makes any difference! Why is it that people feel it is okay to park in our spaces?

After speaking to other disabled drivers, locally and online, I realised I was not alone. Disabled parking is so often abused it has become the norm for those with disabilities to put up with.

So I created a Facebook group called “Want My Space? Take My Disability!”  for the disabled drivers fed up with the situation, their partners and carers, from all over the UK. The group has become a place for sharing experiences, ideas and friendly conversation.

Petitioning the Government

As the numbers in the group grew I began to realise just taking pictures of offending cars and posting them to the group to embarrass the offenders was not enough. We started a petition with the aim of getting the law changed, to protect those who view these spaces not as a perk but as utterly essential.

There are a few aspects to the petition, but basically it calls for the UK Government to enforce the law and stop disabled parking space abuse. The petition also calls for changes to be made to ensure the facilities provided meet a minimum standard.

This is a national problem and the Government needs to realise there are a lot of disgruntled disabled drivers who’ve had enough of the selfishness. At the time of writing the petition stands at over 1100 signatures and the group has over 500 members.

We are even on Twitter @Spaces4Disabled! It is of course early days yet, but I am confident as more hear about it, the group and the signatures will grow.

Then we can tackle something else!

I hope you’ll join the group, sign the petition and follow us on Twitter. After all, the more people the louder the voice!

Photo by Elliot Brown.

Dionne and Jayden at home

The best future for my son: watch Dionne’s story

I was fortunate enough to meet Dionne and Jayden when we were making Scope’s latest short film about the Scope Helpline, and wanted to share a bit more of their story…

Dionne was in her first year at university in London when she became pregnant with Jayden, now aged seven. He has cerebral palsy, epilepsy and global development delays and isn’t able to walk, talk or sit up.

“I had no problems during the pregnancy, the problems started during labour,” Dionne says. “Jayden stopped breathing and had to be resuscitated at birth. He had seizures when he was just a day old and ended up in the special care unit. Doctors had no idea what was wrong with him.”

“I just had to get on with it”

Dionne had planned to go back to university to finish her degree, but Jayden’s care needs and many hospital appointments ma de that impossible.

She also faced a huge struggle getting any support for Jayden. He was born in one London borough but the family lived in a different one, so neither council wanted to take responsibility – and in any case, services were overstretched. Dionne and Jayden were living alone in a mother and baby unit, with no outside support.

“For the first three years of Jayden’s life we had nothing. No equipment at home, no physiotherapy other than a sheet of paper with instructions, and no real support. Everyone was talking but most people were not doing. I had so much hope in care services but time after time I was let down.

“I was 21, terrified about the future and extremely depressed. There were days when Jayden cried endlessly and didn’t sleep at all. We were both exhausted. I was always on standby for something to go wrong with my son and I hated feeling helpless. I was very critical of myself, and so were the people around me.”

“I go back time and time again”

Dionne originally contacted the Scope Helpline for advice about physiotherapy. She was put in touch with Vasu, a Scope regional response worker, who visited her at home to discuss the kind of support she needed.

Since then, they have worked together to tackle a huge range of issues relating to Jayden’s care, health and education. Vasu wrote to social services pushing them to take notice of Dionne’s case, and this led to Jayden finally being offered a physiotherapist.

Dionne says: “Vasu has sent me so much information about sources of funding and the latest treatments for cerebral palsy. He emails me application forms and sends them in the post as well just to make sure I receive them! He rings me unprompted to give me advice and see how I am. He’s even offered to send job opportunities my way.”

RS3249_DSC_0014Vasu also introduced Dionne to a solicitor to pursue a successful negligence
case against the hospital where Jayden was born, which will be a huge help in providing for his needs in the future.

“Out of all the organisations I’ve been to, Scope’s the only one that’s stuck,” Dionne says. “It’s an organisation I go to time and time again because things actually get done.

“Jayden is so aware and so intelligent. No matter what he goes through, even a seizure, he still has a smile for me. He just needs decent support so he can gain the independence he craves. I want Jayden to enjoy being a child, without restrictions, and I want to enjoy being a mum.”

Watch Dionne’s story on Scope’s YouTube channel now.

Scope’s helpline receives more than 18,000 calls and 6,000 emails a year from disabled people and their families. Call 0808 300 3333, or email helpline@scope.org.uk

Alice Maynard on her six years as Scope Chair

In October Scope’s Chair Alice Maynard steps down after six years.

Over the coming months we’ll be marking some of the big changes she has overseen.

We kick off today with Alice describing in her own words the highs and lows since 2009.

We are also launching a new video in which disabled people, including Alice, explain how thinking differently about disability changed their lives.

In her own words…

I’ve been Chair of Scope since 2008. I’m stepping down this year after two terms.

I’m most proud about how we’ve been able to turn the organisation around financially. Scope wasn’t in a great place. It was struggling to be sustainable. But we turned it around. That has given us the strong foundation to develop a bold, unambiguous strategy, and build an organisation ready to deliver it. We want disabled people to have the same opportunities as everyone else. Everything we do – from our care homes to our campaigns – has to reflect how ambitious we are when it comes to disability. But we have to be financially sound to be able to do this.

My background is in the private sector. Hopefully I’ve helped bust the myth that the commercial and voluntary sectors have nothing to learn from each other. We need to keep breaking down the barriers between the two and bringing learning across the divide.

Our relationship with Disabled People’s Organisations has improved. We’ve put time and effort into being an ally. I was privileged to have the launch of DisLIB as my first public event. If you want to see how far we’ve come, you just have to watch our new video on the ‘social model’. We’re a platform disabled people can use to explain in their own words to the public why thinking differently about disability makes all the difference.

We can be proud of ourselves and what we’re trying to do once again. We have helped people understand what it means to be disabled and the positive contribution we can make to society when properly supported (for instance, in managing the extra costs of being disabled).

The Olympic and Paralympic effect which, though patchy and in some ways hard to hang onto, has changed what people think is acceptable – for instance in access provision in the transport system.

In many ways, life for disabled people in 2008 was easier than it is now – it was just before the financial crisis, laws that demanded disabled people should be treated equally were being strengthened. The impact of the recession and austerity on disabled people and their families has been disastrous, taking away dignity and independence.

I think the future is a challenging place. But there are causes for optimism with the advances in technology that help people communicate, and manage their lives in innovative ways. There are real opportunities with the improvements in the built environment. But we are in danger of losing those opportunities if we don’t actively seek to capitalise on them.

People undervalue disabled people. You can see the impact from hate crime at the extreme end, to just not getting jobs because of unconscious bias at the other.

Scope in five years’ time. Stronger, louder, prouder! You can have as many Chairs in an organisation as you like, but without the volunteers, staff and supporters, nothing will happen.

A piece of advice for the new Chair of Scope? Look after Scope well – it’s precious. Keep it true to its mission in everything it does, use its resources wisely, and you can’t go wrong.

The Great Scope Bake Off

If you’re anything like me you’ll have been watching the Great British Bake Off wishing you could enjoy some of the treats on offer.  So what’s your favourite?  A chocolate brownie?  A red velvet sponge?  Or maybe it’s even a sausage roll?  Whatever it is, there was plenty to choose from during the Great Scope Bake Off this week.

The delicious entries were all for our new campaign – the 550 Challenge.  The campaign is all about raising awareness about the £550 extra costs that disabled people face, on average, every month and what better way to do it than to get people showing off their creativity in the kitchen.

The task was simple: bake something with 550 in it.  And the competition was fierce, with everyone vying for the title of Scope’s number one baker!

Our creative bakers certainly got people talking.  Check out some of the great creations:

What will your 550 Challenge be?  Could you create a delicious treat like our bakers?  Or maybe you want to do something completely different.  Whatever it is, it’s really easy to take part.

Just simply:

Take a photo or video with 550 in it.

  1. Share it on Facebook and Twitter and include #550Challenge and scope.org.uk/550.
  2. Email it to us at 550Challenge@scope.org.uk

Let’s get people talking together.  You can check out all the entries we’ve had so far in our gallery for some inspiration too.

T-shirt making day launches 550 Challenge Campaign

Life costs £550 extra a month for disabled people. It is time to get Britain talking about it. In this film Office actress Julie Fernandez launches our 550 Challenge campaign with a t-shirt making day.

If you’re looking for inspiration for your own 550 Challenge check out the gallery to see some of the Challenges that people from across the UK have been coming up with.

Remember to send your Challenge to 550Challenge@scope.org.uk or share it on social media with #550Challenge to see your picture on our gallery.

Living Costs: My Disability Shopping List

A guest blog by Martyn Sibley

I have been what is known as “disabled” my whole life. Oh, how we love labels! I have a genetic condition called Spinal Muscular Atrophy, which means I’m about as physically useful as a chocolate teapot.

On top of this potentially dire situation, let’s look at my disability shopping list:

  • Accessible housing: Very difficult to find, never cheap and usually requiring ramps and adapted bathrooms/kitchen after moving in.
  • Equipment: Electric bed (for comfort and pressure sores), electric wheelchair (for independent mobility), a hoist (to lift me), shower chair on wheels (to not smell), kitchen gadgets (a Kettle tipper, for example), and much more.
  • Social care: The recruitment, training and salary costs of employing people for my independent living needs. Tasks include; dressing me, personal hygiene, house chores, using the toilet, going to work, seeing friends and turning me at night. Plus their additional costs when on shift (food, accommodation, travel, leisure).
  • Health: Physiotherapy and swimming are very important. Prescriptions for antibiotics are required more than average in winter.
  • Other living costs: Higher utility bills to stop winter colds, charge electric equipment and for higher water usage. Costs of servicing equipment. Accessible transport is often more expensive than inaccessible options (see London’s tube map). Accessible holidays have a higher mark up too.

I could go on and on…

Funding

Fortunately, parts of this are covered by government funds. I get support in certain areas because I’m more “disabled” than average, because I understand my rights, and in some ways because I’m “lucky” with the postcode lottery we play.

If anyone narrow minded goes crazy to you about the costs of disabled people on the government, please tell them this: Unless death or social isolation is your thing, investing in us is not just right, but also better for everyone.

From being independent we are healthier and happier, saving future costs of hospital admissions and GP time. We can work, spend our money in the economy, contribute tax and share our skills/knowledge/experience for others to use. We also employ people with the social care money who also spend in the economy, pay tax and are valuable assets to society.

Despite the government funded support, there is a lot of costs not covered. Granted the Disability Living Allowance is in recognition of our extra costs. Unfortunately the maths still shows that we struggle to break even. And when we do succeed, the system takes it back again.

Other costs

For me there are mental and emotional costs of all the bureaucracy too. The form filling, meetings, reassessments, employment responsibilities, silly rules, threats of budget cuts and actual cuts. All on top of trying to just live a “normal” life.

Finishing on a positive note

Beyond the social stereotypes we face, and partly because of the support I have; I attended mainstream school, had non-disabled and disabled friends, did everything my family did, went to university, got drunk, lost my virginity, learnt to drive, graduated, worked in Human Resources and as a fundraiser for Scope for 6 years, went onto co-run Disability Horizons, travel the world and change it in my own little way.

On the one hand I hope my experience shows what is possible with the rightful funding, resilience, and a positive attitude. Equally I want to show the unnecessarily difficult reality of being disabled in 2014. Furthermore the possible regression we are facing going forward with policy suggestions. Only next year am I given big fears, doubts and worries about my personal finances and disability support package once the Independent Living Fund closes.

I’d love to hear about your life ambitions, hurdles you’ve overcome, your higher costs of disability, and achievements despite the struggle.

Martyn

What are your experiences of extra costs? Let us know in the comments below or find out about the Extra Costs Commission.

Two women and a man holding two big 5s and a bike wheel to make "550"

The 550 Challenge – on your marks, get set, go!

Ride more than 80 miles on a bike. In the pouring English rain. With no breaks.  Sounds exhausting, right?! What could be an even bigger challenge than that?

Yesterday thousands took part in Ride London, cycling the distance from the capital to Surrey and back, to support causes including Scope. It’s a tough challenge but after they’d passed the finish line we asked them to go one step further…

The 550 Challenge

Ride London participants were some of the first people to take part in a new awareness-raising campaign – the 550 Challenge. What’s it all about?

Life costs more if you’re disabled. From speaking to disabled people around the country, we’ve found it costs an extra £550 a month on average. Those extra costs could be anything from transport and taxis to get out and about, to an adapted knife and fork so you can eat.

As you can imagine, being that much out of pocket is having a big impact on people’s lives. This has to change – and it starts with getting the word out.

We want to raise awareness of the £550 extra disabled people are having to pay – that’s the big challenge. To do it we’re asking people all around the country to take a photo or a video of themselves with “550” in it and share it on social media. Together we can get Britain talking.

The tired cyclists at Ride London did a brilliant job of getting the ball rolling! Here are just a few of our favourites:

Two women and a man holding two big 5s and a bike wheel to make "550"

A man holds two big 5s and a bike wheel to make "550"

Man holding two big 5s and a bike wheel in vertical row to make "550" Two women holding two big 5s and a bike wheel to make "550"

A woman and three men hold two big %s and a bike wheel to make "550"

Are you up for the challenge too?

If they can do a great “550” photo after riding all day in the pouring rain, you definitely can too! There are loads of easy ways to take part.  You could:

  • Draw a 550 sign
  • Decorate a cake with 550 icing
  • Set yourself a 5 minutes 50 seconds challenge (or 550 metres or even 550 miles!)
  • Or whatever you like that’s 550 – get creative, get active, get together with friends or colleagues!

Then simply:

  1. Take a photo or video.
  2. Share it on Facebook or Twitter and include www.scope.org.uk/550 and #550challenge
  3. Email it to us campaigns@scope.org.uk

We’re looking forward to seeing what you can do! See more 550 pictures, find out more about the 550 Challenge and our extra costs campaign.

550 Challenge Gallery

Life costs £550 extra a month if you’re disabled – we want to get Britain talking about this with our 550 Challenge.

If you’re looking for inspiration for your own 550 Challenge check out the gallery to see some of the Challenges that people from  across the UK have been coming up with.

Remember to send your Challenge to 550Challenge@scope.org.uk or share it on social media with #550Challenge to see your picture here.

 

“I never want another parent to feel as desolate and as frightened as I did”

Guest post from Yvonne, author of The Special Parent’s Handbook.

When my children were little, one by one they were each diagnosed with devastating disabilities. I was overwhelmed with emotions, I was exhausted and lost. It got even worse when two of them were also diagnosed with additional life-threatening illnesses which lasted for several years. I really didn’t think I was going to cope – I knew nothing about disability or how to support a child through serious ill-health.

IMG_0010_NEW

Now, all three of them are on the brink of adulthood, they all survived, in fact they have done a lot better than mere survival. We pulled together, we muddled through, and we learnt to laugh a lot too.

I never want another parent to feel as desolate and as frightened as I did. So I’ve written the book I wish someone had given me in those bleak early days.

The Special Parent’s Handbook

The Special Parent's Handbook

It’s a comprehensive parenting manual for families like ours. It’s packed full of all the tips, tricks and strategies we learnt – the things we discovered and invented along the way as we stumbled from one crisis to the next.  It has lots of quirky solutions nobody else would ever think of unless they also have children like ours.

A doctor can tell you how to manage your child’s condition but this book shows you how to care for your whole family. It will help you get through those long hospital admissions that are often part-and-parcel of having a serious disability. It will talk about how to cope with those days when you feel like you’re drowning in a sea of negative emotions. It also has lots of ideas to make sure your other children don’t miss out, and real-life solutions to things that most people wouldn’t even understand. I’ve written extensively about how to get the best outcomes for your child from all the meetings, appointments and funding decisions which cause so much frustration and heartache.

It’s also a story of our family growing up. If you read it, you’ll get to know Francesca, Toby and Adam along the way too. I’ve used dozens of things that really happened to illustrate ways of getting yourself out of the tightest of corners.

I’ve shared all the things I learned the hard way. It’s the “dos and don’ts” guide to steering your way through – and I’ve also passed on some of the mistakes I made!

The response so far

It came out in June, and the response has been better than I could have possibly wished for. Dozens of parents have contacted me to tell me how much easier things are for their families since reading the book. GPs have told me that they have adopted new approaches when seeing patients with a learning disability because of what they have learnt from it. Great Ormond Street Hospital liked the book so much that they have ordered a copy for every ward so that all their parents have easy access to it. The reviews on Amazon can’t seem to praise the book enough. I even received a very special letter this week  from Nicky Morgan, the Secretary of State for Education, who praised the book.

If you do read it, I’d love to know what you think, your feedback will be really helpful! Lots of people have already asked me to get started on another book – so anything you tell me will help me know what I should write about next!

Find out more about the book:

Julie Fernandez

What’s your experience of Access to Work?

Guest post from Julie Fernandez, star of ‘the Office’ ‘Eldorado’, producer and craft shop owner. Access to Work is a government scheme designed to give disabled people the support they need to find and keep a job, but after a reassessment Julie’s been told that the support she’s getting to run her craft business and to help with her media career is under review, and might be withdrawn.

Let us know your experience of Access to Work in the comments below.

We hear a lot from the government slating the minority of people who don’t want to work – who want to ‘sit around’ claiming benefits – alongside a lot of positive talk about how they want to help disabled people who are able to work, and certainly want to work, find a job.

In theory I’m somebody they should be using as a success story. I’m disabled, I work six days a week running my own craft business, and I employ 11 people. I also have a successful media career. I’m only able to do all of this because I get support under the Access to Work scheme – but I’m totally stressed out at the moment because it’s under review and I’ve been told that it might be taken away.

Awards from Access to Work have helped me for a few years now. I have brittle bones disease, I suffer with pain as a result, and I’m a wheelchair user. I use the money to employ a support worker at a cost of £18 an hour to assist me with things I’d find impossible to do otherwise – things like getting around, and carrying and lifting heavy objects.

Every three years you have an reassessment with Access to Work and after my last assessment a couple of months ago I got some really worrying news.

They told me it was unacceptable that my business has been running at a loss for the past two years, and that they don’t think they should give me the money to carry on working. They don’t take into account that with a new business you don’t expect to make much of an income initially.

They also don’t take into account that with my other work – my media career – you tend to have better times and leaner times – and media work doesn’t always pay as much as you might think.

The upshot is I’ve got until the end of August to write a full-time diary of every single job my support worker does for me, and provide three months of accounts, and then then they will decide if I am earning an ‘acceptable’ standard of living. Although they can’t tell me what this acceptable level would be, other than the minimum wage.

I hope I’ll be alright – but I’m really scared and nervous about it all and I’m angry.

I work six days a week – I employ 11 people – how much more do they want me to do? My business pays in the region of £800 per week in VAT. If they stop my Access to Work I’ll have to close my business, make my staff redundant, and claim a whole range of benefits instead.
If they reduce the award I get, I’ll have to make a choice between either the craft shop, or my 20 year media career.

I’m not the only person having problems with Access to Work at the moment.

An acquaintance of mine Jacqueline is the CEO of Universal Inclusion and Chair of Fluidity, the UK Forum for People with Hidden and Fluctuating Conditions.

She recently submitted information to the Select Committee Investigation into Access to Work, which detailed the difficulties Fluidity’s members have been experiencing with the service following its recent restructure. She is also facing challenges personally with the administration of her own award.

The submission highlights how prior to the restructure, people using the service had direct access to a personal advisor, but more recently they have to deal with advisors through call centres.

Fluidity’s members say that since this change they have had to speak to countless people about their awards, and many are asked to repeat their history each time because records haven’t been updated. It’s tough having to repeat personal information over and over again.
They think that call centre staff, while by on large doing their best, are being instructed to say specific things around response times, which Access to Work are then not sticking to. But some have described how they have found the manner of other call centre staff to be ‘upsetting and intimidating’.

Additionally, Fluidity’s members have reported long delays at the application stage, delays with payment for support, and delays when people request additional support due to a change in circumstances.
All of this is leading to – at best – frustration and delay – and at worst – disabled people becoming vulnerable and not supported.
Fluidity’s members are concerned that the focus on cutting costs demonstrated by the introduction of call centres means that there’s a move away from the more flexible and supportive approach that people are used to, to one that’s becoming increasingly cumbersome.

It’s really worrying stuff. Access to Work is a brilliant established scheme – and it makes good financial sense too. For every pound the treasury invests in the programme the treasury get £1.88 back.
It helps lots of disabled people like me find and stay in employment and I just hope that my experience, and the experiences of members of Fluidity UK aren’t warning signs that things are set to change.

What’s your experience of Access to Work? Have you had a negative experience like Julie, or do you have a positive experience to share? Let us know in the comments below.

Scope exists to make this country a place where disabled people have the same opportunities as everyone else. Until then, we'll be here.

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