Not being able to access public transport restricts people’s freedom and limits their opportunities

Guest post from Conrad Tokarczyk. Conrad and double Paralympic gold Medallist Natasha Baker MBE are both from Hillingdon in London. Natasha is supporting Conrad’s campaign to make all their local tube and train stations accessible to disabled people within five years.

In the aftermath of London’s 2012 Paralympics, awareness of disability issues is supposedly on the rise. But access to public transport still remains a major obstacle for disabled people. The effect this has on people’s lives is not being taken seriously.

The term “public transport” by definition suggests that it is a service for everyone. But as many people reading this will know, many stations have large flights of stairs leading to the platform and no lift. This makes it impossible for wheelchair users and people with mobility issues to get around.

In my home borough of Hillingdon in London the majority of tube and train stations are inaccessible to wheelchair users like me, so I’ve launched a petition calling on decision makers to improve access.

Why it it such a big problem?

Conrad at foot of train station stairs
Conrad at the foot of train station stairs

I’ve had to turn down certain jobs which I couldn’t get to using public transport. And it’s not just about work. Many people miss medical appointments, trips out with friends, and have difficulty getting to college – all the normal everyday things they want to do.

Driving is sometimes an option. I drive, and I have a Blue Badge, which should help with parking. But in London journey times can be nightmarish, twice as long as public transport, and parking in central London is difficult and expensive. Taxi rides are also incredibly costly.

Many generations of disabled people have been prevented from leading fulfilling and independent lives as a consequence of poor access to public transport. Politicians need to take action now to improve the accessibility of our transport network. If they continue to dither on the issue, yet another generation of young disabled people like me will miss out.

Where will the money come from?

Politicians often cite a lack of funds as the reason improvements can’t be made, which is why our petition is also asking decision makers to publish the costs of making the UK transport network accessible.

In January this year politicians spent £250,000 on portraits of themselves; last year MP’s spent £13,000 refurbishing the House of Commons Strangers bar; and in 2012, politicians spent £400,000 of taxpayers’ money renting dozens of trees to decorate their offices! I think it’s unfair that the purse strings are tighter when it comes to spending on issues that could improve the lives of disabled people.

If, like me, these acts of self indulgence make your blood boil, please take a moment to sign the petition calling for decision makers to take the views of disabled people seriously.

My little sister, who happens to have Down’s syndrome

Agi Kolaczynska (11) has been making films about her little sister, who has Down’s syndrome, since she was eight. Here she talks about film-making, changing attitudes about Down’s syndrome and what sparked off her ‘My Little Sister’ project.

I have been an enthusiastic filmmaker since I got my first camera on my sixth birthday, and have taken it everywhere with me ever since, filming and taking photographs of everything – and I mean everything.

When I was eight, my mum found a great new website called Netbuddy (which is now part of Scope) who were running a short film competition. She suggested I make a film about what it’s like being Magdalena’s sister. The deadline was that night, so I engrossed myself in editing a year’s-worth of footage I’d taken of me and Magdalena. I called it My Little Sister (who happens to have Down’s syndrome) and uploaded it to Netbuddy.

My film won the competition, and I started getting lovely messages and feedback from all over the world. People were asking me “when is the next one coming out?” and I thought wouldn’t it be be fun to make this into a lifelong project. So, I made a website and started blogging about our lives together. The film – which now has 23K views on YouTube – became the first episode of “My Little Sister (who happens to have Down’s syndrome)”. It now has ten episodes in total, with more to come.

Changing perceptions of Down’s syndrome

From the feedback I was getting, I could see my films were changing what people thought about Down’s syndrome. They were encouraging other families to feel good about the future. As I got older I experienced some of the stereotyped ideas people have about Down’s syndrome, and how hurtful these could be to Magdalena and the people who loved her. This made me want to make more films to show the world all the magical moments we shared, and the parts of Magdalena’s character they would see if they looked beyond the Down’s syndrome.

As I heard other people’s stories and experiences of how hard it had been for people with Down’s syndrome in the past, I felt even more strongly about the need to stand up for my sister and other people with Down’s syndrome. I started getting messages from people who knew nothing about Down’s syndrome or had had a completely different view before they had watched my films. Others started asking questions about Down’s syndrome. People were writing to me from all around the world and featuring my films on their blogs in Spain, America, Morocco and loads of other places.

The National Youth Film Festival Awards

Last Autumn I submitted my films to the National Youth Film Festival Awards and was amazed when, a few weeks later, I received a phone call saying I’d been shortlisted for the ‘Ones To Watch award.’ This award was to honour young people with “exceptional talent and ambition in film.” It felt amazing to be recognised for doing something I loved.

An invitation followed to attend the Gala Award Ceremony at the Vue Cinema in Leicester Square. So we trooped down to London, not really knowing what to expect. It was very glitzy, like the Oscars, with actors and producers and golden envelopes with the winners names in. As the winners walked on stage to be presented with their award, their images were blown up huge on the cinema screen.

To be honest, I felt overwhelmed as I had never experienced anything like it before. I didn’t expect to be called on stage, as I didn’t expect to win, but suddenly I heard my name called up, and I had won! Jim Carter from Downton Abbey presented me with my award and I really enjoyed meeting the other young filmmakers, hearing about their projects and asking people what films they liked watching.

Winning the award has made me determined to learn more, and this year I am going to think about how to get access to better equipment, training and a better website. Most of all, I will carry on enjoying spending time with my sister and making movies.

Check out Agi’s blog and website  See Agi on YouTube and follow her on Facebook

A letter to my mother, my brother’s carer – #100days100stories

To mark Down’s syndrome awareness week, we’re publishing this story by Emma Sterland, who works on Scope’s online community. It was first published in the Guardian, and we’re sharing it here as part of our 100 Days, 100 Stories campaign.

You knew something wasn’t right before anyone else did.

You kept calling the nurses over, but he was always asleep when they came. You wanted them to see his eyes, but he always had them closed. They smiled and put it down to new-mum nerves, but you knew.

“Your son is a congenital idiot,” were the doctor’s carefully chosen words. They are as sharply etched now as they were 54 years ago. “Best to wipe the slate clean and start again.” You were young and newly married. This was 1956 and mental institutions were still the norm. No one expected you to take him home. But you did.

You had to feed him round the clock, he was so slow to eat. It took him a long time to reach the milestones other parents took for granted – rolling over, sitting, holding a spoon – but you knew he’d get there. And you delighted in his achievements, no matter how small they might have seemed to others.

He was “ineducable” but you taught him to read and write. You showed him how to keep a diary and encouraged him to write thank-you letters. He was a little clumsy, but he loved to help. You’d give him a big bowl of peas to shell or have him rolling socks into pairs.

Having a child with Down’s syndrome was nothing to be proud of then. But he was your firstborn and you were proud of him. When a friend asked him to be the page boy at her wedding, you wrote an article in this newspaper about it.

He was seven when I was born. By then, you’d learned to ignore unkind remarks, so when a neighbour peered into my pram and said, “See you’ve got it out of your system then,” you just smiled.

You say he adored his baby sister and was always eager to hold me. He was the perfect play companion – patiently returning toys I’d chuck out of my cot. I have happy memories of camps he and I built together under the dining room table.

When my younger brother was born, your family was complete. You had three of us to look after, each with our own separate needs. You made it look effortless, but I realise, now, how much work you put in.

I didn’t really mind people being curious about my brother. I never felt ashamed of him. Even as a sensitive teenager, I wouldn’t flinch when he wore his Batman costume to the beach or stood up in the cinema to wave at his favourite characters. I took my cue from you. It made him happy – where was the harm?

But sometimes I just wanted to be like everyone else. You gave me the space to do that. Somehow you made us all feel special and important. I know, from hearing other people’s experiences, how hard that can be in families with disabled children.

You taught me some of the most valuable lessons I’ll ever learn. You showed me that everyone has their own contribution to make, whatever their ability. You taught me about tolerance and compassion. And, above all, you showed me how to get on with life, even when it throws you the unexpected.

At 78, you’re still caring for my brother. You take him to his clubs and his horse-riding, and you massage his arthritic feet. You’re still proud of him after all these years. You show me things he’s made at his day centre and tell me funny things he’s said. You should be taking it easy now, but you’re still a full-time mum.

I know there are many others like you, who’ve had a lifetime of looking after their sons and daughters – a lifetime of putting someone else’s needs before their own. I salute you all.

Find out more about 100 Days, 100 Stories, and read the rest of the stories so far.

 

A budget for savings, a resilient economy: what does that mean for disabled people?

On budget day, every interest group in the country will be sizing up the Chancellor’s words to see who are the winners and losers. Today, the two themes of Osborne’s 2014 budget are of real importance to disabled people: savings and resilience. But what impact will today’s announcement have on people’s lives?

Savings

Disabled people pay more for all kinds of everyday things, from taxi fares to work, to disability equipment, to higher energy bills – on average £550 per month.

The extra costs of disability prevent people from building up any sort of financial buffer against the unexpected. Research shows 85% of disabled people saved nothing in the past year; disabled people are three times more likely to take out doorstep loans than non-disabled people.

So a focus on savings is welcome, but before disabled people can benefit from what is on offer, we need to make it possible for disabled people to build financial assets.

20 years ago the Government brought in DLA to help disabled people meet the additional costs they face. It’s crucial that the Government protects this financial lifeline. But the cap on Annually Managed Expenditure (AME), which sets a limit on the amount government spends on welfare, could start to break the link between people’s need for financial support and the value of that support.

The Chancellor announced today that the cap would be set at £119billion in 2015-16 – equivalent to the value of the Office for Budget Responsibility’s forecast for the coming year’s expenditure. This suggests there will be no additional cuts to the welfare budget in the coming year. But the devil will be in the detail. The way the cap works means that if spending on one benefit goes up – say housing benefit or Employment Support Allowance, there will be pressure for hasty policy decisions about how other spending an be limited to keep to the government’s target. We can only watch and wait to see how this plays out and what affect that will have on DLA/PIP over the years ahead. You can read more about our position on the welfare cap here.

Resilience

Today George Osborne talked a lot about resilience – building into the recovery some sort of protection against future risk. What does resilience mean for disabled people? It’s more than just the money in people’s pockets.

People’s ability to take up all of the opportunities life presents is based on a number of things – their income, yes – but also their family and friends, having a rewarding job, having access to services that meet their needs. Today there was recognition of the need to help people manage household finances through support for energy bills and fuel costs. There was the promise of 1.5 million extra jobs over the next 5 years – we have to push for those jobs to be available to disabled people. The missing link is investment in the infrastructure that is so key to many disabled people in building their resilience – funding for social care.

If we are to build a resilient economy, it has to be one in which everyone can play their part. Disabled people have an important role to play in the recovery – but today’s budget showed we still have a long way to go.

Budget 2014: How the Chancellor can put disabled people at the heart of the recovery

At the start of the year the Chancellor was clear that the economy is not out of the woods yet – ‘it’s far too soon to say: job done’. The Budget gives him the opportunity to put some meat on these bones and deliver one of the most important speeches in the long election campaign.

As he reveals what this ‘year of hard truths’ will entail, the focus will be on his ‘strategy for growth’.

There is a huge opportunity for disabled people to be part of this strategy. Scope has called on the Chancellor to put disabled people at the heart of the economic recovery to meet his own aspiration of making a ‘strong and fair economy’.

We will be looking for his red box to contain some of the following to make this a reality:

A Commitment to covering the extra costs of being a disabled person

Disabled people’s ability to pay their way and be financially secure is hampered by various extra costs. The Personal Independence Payment (PIP) is designed to help meet some of these costs.

  1. We want to see the Chancellor protect the value of PIP by taking it out of the new cap on Annually Managed Expenditure.
  2. The Chancellor can tackle these extra costs head on by announcing an innovation fund that looks to drive down the extra cost.

Action to get disabled people into work

By 2020, there will be an increase in the number of disabled people looking for work. Following reassessment of Incapacity Benefits claimants, between March 2011 and March 2013, there are at least 650,000 more disabled people are seeking work.

To help them find jobs, the Chancellor needs to:

  1. Make regional growth strategies work for disabled people.
  2. Give disabled people personal budgets to spend on back to work support.

Social Care

The Care Bill has completed its passage through Parliament – but one crucial issue still remains: funding. The Care System remains chronically underfunded, and for the Bill to be the legacy legislation that the Government intended, it needs to be matched with the right investment.

  1. The Government introduced the ‘Better Care Fund’ in June last year. The Chancellor needs to commit to extend this Investment every year.
  2. Piloting a community budget approach to care integration for disabled people – bringing together care, health and employment support.

The Minister for Disabled People, Mike Penning, will be in Manchester on Wednesday as part of the Government’s Disability Confident Campaign – and I hope the Chancellor’s Budget gives him every opportunity to say just how the Government will make sure that disabled people are at the heart of the economic recovery.

I’m frightened of needing the loo: #100days100stories

Angie first shared her story with us in March 2014. We’re republishing it here as part of Scope’s 100 Days, 100 Stories campaign.

How would you feel if you couldn’t have a drink of water, because there was no one to help you get to the loo?

That is the situation I have been in for the past few months.Angie

My name is Angie. I am 65; I have cerebral palsy and use a motorised wheelchair. For many years I have lived in my own flat in London.

My care was provided by a charity – their support workers were based in the flat above and gave me support when I required it, 24 hours a day.

It was exactly what I needed. I have always been very active in the community – at church, in campaigning for disabled people, in volunteering. I also cared for my mother until she died at the age of 95.

With the care I was getting, I could come and go as I pleased. I had control over my own life.

But in October 2013, the charity went bust. My local authority was only given 48 hours’ notice, and I was placed under what is called “emergency care”.

My life has changed completely. Now, care workers from an agency come to visit me at set times, four times a day.

Sometimes I’ve never seen them before – I have had at least 12 or 13 workers in the past three months. This is very stressful, as they are helping me with personal care including washing and going to the toilet.

If I need to go out to a meeting, or to church, I cannot eat or go to the toilet until my next visit. I have to stop myself from drinking, because I’m frightened of needing the loo.

I have overnight care, but during the day, care workers are only allowed to stay for their allotted time – 30 or 45 minutes. If the slot is up, they have to leave, whether I am ready or not.

Personal care takes a good half hour, so there’s often no time to eat properly. I had a slice of toast for lunch today, and I do almost every day. I’m often hungry.

My advocate and I are working with social services to get me a new care package, but the personalised support that will give me some choice and control over my life is hard to find.

At the moment I feel like my whole life has just stopped. I’m trying to keep things going, but it’s really hard.

It hasn’t been the fault of the care workers, or social services – it is the fault of the system.

Care staff need to be better paid and better trained, and care needs to be tailored so it’s right for the individual, not the other way round.

Everybody has the right to freedom, disabled or not: freedom to come and go as we please, and to live in the community as an equal.

At the moment, I do not have that freedom.

The care many disabled people receive is so basic that you can’t have any ambition, because there is no one there to support you.

So many disabled people will never reach their full potential, and that is a disgrace.

Since this story was first published, Angie’s 24-hour care has been restored, but she has continued to have problems getting the personalised support she needs. 

Find out more about Scope’s 100 Days, 100 Stories campaign, and how to get involved.

Better sleep for disabled children

Guest post from Emma Sweet from Scope’s sleep team.

Emma holding a sign which says - Desperate for a good night's sleep? Ask me anythingThanks to everyone asked questions during our sleep question-and-answer session on Facebook. We had a big response.

We run workshops which cover all the basics in addressing sleep problems and provide a toolkit to address your child’s sleep problems. Our workshops are for 10 professionals and 10 parents. If you’re interested in booking, email sleep@scope.org.uk.

Tips for tackling sleep problems

Boy sleepingI hope you can join us for one of our training sessions. In the meantime, here are some of my tips you might like to try for dealing with sleep problems:

  1. Certain foods can help at bedtime – 1 hour before bed – like bananas and warm milk. Food and drinks with colouring or sweeteners can affect a child’s ability to settle at bedtime.
  2. Some children use bedtime as an attention seeking exercise, attention, good or bad, is all attention to a child. Children are clever, and find some amazing distraction techniques to avoid going to bed.
  3. Some children are lacking a routine at night time or haven’t learnt appropriate behaviour at bedtime. Visual clues and consistency are key for all children. Children with learning difficulties may not understand why or when they need to go to sleep.
  4. Addressing sleep problems is exhausting for all the family, but given time, patience, and support they are many approaches that will help.
  5. Older children and teenagers naturally experience a shift in their body clock, meaning they want to go to sleep later and get up later. Modern technology impacts on this even further.
  6. Many disabled children need moving and repositioning in the night, if you do this near the time of one of their natural night wakings they are more likely to wake up. You need to work out when they are in a deep sleep so if you do it then they are less likely to wake.
  7. If your child suffers with anxiety, the physical symptoms of anxiety will impact on their sleep. Try doing anxiety exercises at the beginning of your bedtime routine.
  8. Many people think sleep problems are linked to a child’s impairment. This is not always the case – there are many causes of sleep problems which need to be explored.
  9. Research has shown that using a behavioural programme to address sleep disorders can help almost all children. However it can take longer to see improvements if a child has a neurological condition.

More about Scope’s sleep support for families and professionals.

George Osborne has to support vital care in next week’s budget

Do you get annoyed at how long it can take to get things done sometimes? Simple things like trying to reach someone at a helpline or waiting in busy traffic can be pretty frustrating – never mind something as important as trying to make sure everyone who needs care gets it.

Ema - a young woman using a wheelchair, holding a dogOn Monday MPs had just that chance during the latest stage of the Care Bill. The Care Bill is an important new law looking to improve social care for people like Ema, to make sure she can live her life the way she wants to.

It’s been a long road to get to this point. There’s still a lot to be done to make sure everyone who needs care gets it, but thanks to the great support for our campaigns – MPs know now more than ever just how important this vital support is.

From the 25,000 people who contacted their MP by sending them a postcard in one of our shops, to the people who sent in photographs that we hand delivered to Parliament, it showed MPs just how important social care is. We even asked people to Speak Out for Care and send their own message to their MP on giant speech bubbles, and to go one step further and record a message for one of our speaking cards just a few weeks ago.

But there’s still more we need to do.

The decisions about the specifics of who will be able to get care have still to be made. A consultation is going to run over the next few months ahead of another vote by MPs in the autumn.

In the meantime we want to make sure that the proper funding is in place to pay for this vital support for disabled people. So when MPs go to Parliament for the Budget next week, we want to send them a clear message that they need to invest in care.

Do you want to add your voice? Join with people from across the country and send the Government a message on Facebook or Twitter to fund social care.

Become a young campaigner

The Trailblazers have been very successful in highlighting the issues which affect young disabled adults, including access to higher education, employment and improved transport. Recently Sulaiman Khan the London Ambassador for the Trailblazers came to talk to staff at Scope about the successful campaigning activity he has been involved with.

I delivered the first training sessions on campaigns and advocacy to the Trailblazers and have followed their progress over the years with great interest.

I recently attended a Trendsetters workshop and was inspired by meeting the Trendsetters and hearing what they had to say. This got me thinking that Trendsetters could be campaigners too!

We’d like to offer training to younger disabled people in their teens to help them build up their campaigning skills so that their voices may be heard in their communities.To achieve this the Community Campaigns Team will be holding training sessions in London over the coming months.

These first sessions will be held in London but we will be delivering a similar programme later in the year in other parts of the country.

The training sessions will give you the chance to learn new skills and tools and to hear from other people who have been able to make life better for disabled people and others in their community.

The events will be held from 10.30 – 3.30 on the following dates:

Saturday 26 April
Saturday 10 May
Saturday 24 May
Saturday 7 June

Address:
Scope
6 Market Road
London
N7 9PW

If you’re a young disabled person aged 10 to 18 and you  want to change people’s attitudes towards disability and improve the way disabled people can get involved in the life of your community, please come along.

The events are free to attend and we will provide you with lunch and cover the cost of your transport.

To find out more about how you can take part and book your place please email YourCampaigns@Scope.org.uk or phone me, Rosemary Frazer, on 0207 619 7718.

We’ve got to act on the Children and Families Act

“I cry every day because there is no hope and no one cares. If I had just a little help we could live a more normal and fulfilling life.”

Mum and disabled son playing in the part

This is just one of the heart-wrenching stories we’ve heard from parents of disabled children around the country during the past 18 months of our Keep Us Close campaign, fighting for better local support for them and their families.

It’s an important day for a new set of changes that many parents around the country have been waiting for. Today the Children and Families Bill will be passed in Parliament, becoming an Act (that means it’s now decided – well, almost all of it – see below).

The Government promised this would be a once-in-a-generation change to how support is provided to children and their families “stopping the ‘agonising’ battle many parents fight to get the support for their families, as they are forced to go from ‘pillar to post’ between different authorities and agencies.”

The Bill hasn’t gone as far as Scope and many parents, groups and other organisations would like, but there are some important changes that are good. And now the focus is on what needs to happen next.

What is not so good?

There is uncertainty about how much of a difference the reforms will make.

The original intentions behind these changes were definitely aspirational and felt like families’ experiences had been listened to. The Children and Families Bill hasn’t lived up to all the promises set out by Government, leading to some parents and experts asking what will actually be different?

Scope’s Keep Us Close campaign asked the Government to to ensure that local authorities promoted inclusive and accessible universal services that all families can use. This was an ideal opportunity to bring in transformational change that would mean that more families with disabled children would have access to the support and advice that they need in their local community. This hasn’t happened and feels like a missed opportunity.

What’s good?

Families should know what local support is available – and have a say in it. 

One of the big changes the Children and Families Bill will bring in is a new “Local Offer”. Your local council will have to publish details of all the relevant services that are available if you have a disabled child or young person, or if they have a special educational need. This is meant to help end the struggles parents face to know what support they can even access.

But just providing a fairly empty “yellow pages” won’t help. Parents know what support they and their children need. One of the good changes the Government has promised is that families will have more of a say in what services are provided. This is meant to address an issue many parents complain of – not being listened to – and it’s one of the biggest issues Scope has been campaigning for.

All disabled children should be included when councils plan services. 

When councils consider what support to provide in their local area as their Local Offer, they should also plan for disabled children as well. At one stage it was only children with Special Educational Needs – if your child was fine at school but had other needs, they were effectively left out of the new system.

Disabled children from birth should benefit from more joined up support.

Early years settings, such as children’s centres, and professionals like health visitors will now need to be better at identifying disabled children who need additional help right from birth and put in place the support they and their families need. And young people, right up until they are 25 could benefit from a more joined up approach to their learning and preparing for adulthood, removing the cliff edge where support falls away at age 16 to 18 at present.

What’s next?

The Bill is being passed today, but it’s just one step along the journey to change support to meet children’s and families’ needs.

The Government

Right now the Government is making the final changes to the ‘Code of Practice’ – the important practical details about exactly what will happen and when. This will be the guidance that local councils, early years settings, schools, colleges and health agencies will use to understand what they need to do next so that the reforms make a difference for disabled children, young people and their families.

How will families have a say in improving local services? How will local services work together better in practice as promised? How quickly will the changes happen? It’s vital to get the answers right to these and more issues.

Local councils 

Local authorities will play a massively important role in putting the Bill into practice. How will they make the new ‘Local Offer’ work in practice? How can they change the culture that’s leading to lots of disabled children being excluded because of negative attitudes? How else can they make sure local services are inclusive? The commitment to include families in planning and evaluating local provision is absolutely crucial to the success of the Local Offer and local authorities must really get this right.

Charities like Scope

We all need to play a part in getting support right for disabled children and their families. So much needs to improve and we’ll do all we can to help by continuing to work closely with local councils and the Government. Please check back on our blog in the coming weeks – when we know the important details of what happens next we’ll be talking about what the changes mean for parents. And if you want to at any time, please get in touch for support to families with disabled children.