Social care is important

Social care is important. Disabled people want to live and do the things that everyone else does.

Sometimes they need support to do so. That could be a personal assistant to help them get up, get washed and dressed.

Most people would agree that this support should be in place, and would probably expect it to be there when they need it.

That means we get the support to choose when we get up, when we eat, when we go to bed, the places we go and who we see during the day.

All too often this doesn’t reflect the reality of many disabled people’s lives. Angie is 65 and lives in London, and she often has to go without a drink of water because there is no one to help you get to the loo.

It doesn’t have to be this way. We can improve the care system and change is happening.

I’m chair of the Care and Support Alliance – 75 leading charities and organisations – who want to improve the care system.

We’ve taken a temperature check of the nation’s thoughts and feelings about social care.

A YouGov survey of more than 4,500 people – one of the largest surveys of its kind – has lifted the lid on how important we think the care system is, and that we want the Government to take action. This is good news.

We are all in this boat together. A third of us have a close family member that relies on care to do tasks as basic as washing or eating.

Sadly, at the same time we fear for the future. Six in 10 people are not confident they will receive sufficient care; that goes up to 7 in 10 for over 60s.

The issue is funding. Councils report that some £3.5bn has come out of the care system. On the front line this means that support is being squeezed, and nearly half a million people have lost out since 2009.

Our findings come as the Government prepares to roll out the Care Act in April 2015, which includes major reforms to care – such as ending the postcode lottery, a commitment to wellbeing and capping care costs.

In the run up to the next election the debate is only going to get more intense. This week the Barker Commission publishes the findings of its inquiry on how to integrate health and care. Recently the Care Minister Norman Lamb reiterated his commitment to bringing the health and care closer together and improving the support people get.

We already have the Better Care Fund, which provides a mechanism to start that process.

These are superb intentions and steps in the right direction.

But let’s not forget, a third of people who rely on locally provided care are disabled people. The big question is how in years to come integration improves the quality of support and lives of disabled people, and helps to realise some of the commendable ambition contained the Care Act.

But, underpinning all of this is the issue of funding. We need a long term commitment for social care by the Government.

Natty

Back to school? Top tips for a new term

The Summer is almost over and for many children that means a new teacher, a new classroom, a new school, or even starting school for the very first time. Hayley Goleniowska from DownsSideUp has a few pointers to smooth the way.

Invest in the transition process

Visit the school with your child as many times as you can before they start, preferably the term before. Read lots of books about school and try some school-related art too. There are loads of books available that can help children get to grips with the idea of school, so sit down with them to read stories together. This can help them learn more about the magic of school and what to expect from their new routine.

Make a transition book

Take photos of key members of staff, teachers and Teaching Assistants as well as important areas of the school such as the dinner hall and the toilets. You can stick the pictures into a scrapbook with the names printed underneath and talk about them during the summer holidays. You could also use a talking book and record you or your child saying each name. Meet up with children who will be in your child’s class for play dates during the holidays if possible.

Let your child make choices about their uniform

Give them controlled choices, perhaps choosing the shoes or school bag or pinafore/trousers from a choice of two. Buy plenty of uniform (I stocked up on cheap second-hand items) so that I never became stressed when it was dirtied, wet, painted on or even ruined. I bought 10s of pairs of cheap pants so they could be thrown away if beyond washing. Leave two changes of everything at school. Ask school if they have a stock of second-hand uniform for sale.

Role play school at home

Let your child dress in their uniform and make a school corner. Make it fun and exciting and tell your child how grown up they are and how proud you are of them. Our daughter loved practising sitting on a carpet for a short story and then getting a star sticker for good listening. We also bought story and sticker books about starting school to share together.

Start at your child’s pace

Every child is different and their physical and medical needs vary. Natty was small and got tired very easily in the first years of school, so we started with mornings only and added one afternoon a week until she was full time. If she was tired at all, I would pick her up at lunch-time or even take a day off.

All SEN children are entitled to be flexi-schooled

This would not suit all children or families, but in Year 1 I chose to educate Natty at home each Wednesday. This allowed a slower, quieter day, where we could consolidate what was being learnt at school, as well as working on life skills such as laundry or grocery shopping. We also had time to swim in the afternoons. We continued this until Natty asked to be at school with her friends every day, but the possibility is there to return to flex-schooling at any point.

Build good relationships with your child’s SENCO, Teacher and TA

Don’t be afraid to voice concerns or worries early on, as they are probably learning as they go along, just as you and your child are. Use a home/school diary to write about the day’s/evening’s events for each other. Use photos to prompt discussion about the weekend.

Don’t be afraid to suggest materials/methods that your child likes working with. Each child has a different learning style. See some of the sites listed below for ideas, or give the list to your child’s teacher.

Ask for an intimate care plan

If your child is not fully continent when they start school an intimate care plan can be vital. This will include where and by which two members of staff they will be cleaned and changed. Changing table and wipes, bags etc. This, along with any requirements surrounding eating, drinking or taking medication should be noted in the Statement.

Enjoy school!

There will be suggestions and exercises from Speech and Language Therapists, Occupational Therapists, Physiotherapists, Educational Psychologists, Doctors, IT Experts… Sometimes it all feels overwhelming, but take what you can and what you think works best for your child and don’t fret about doing it all, all the time. Remember that above all else your child must enjoy school, make friends and learn to be as independent and confident as possible. He or she is your wonderful child and not a case study. Enjoy your time with your child.

Useful resources

Special Needs Jungle is your first port of call for all SEN-related advice.

The Downs Syndrome Association also produces a Primary Education Support Pack for teachers which covers all aspects from Inclusion to Numeracy Skills. It can be downloaded free or purchased on a CD ROM. Their Education Information Page also includes advice for parents, statementing support and SALT advice for children beginning Primary school.

Scope has produced a set of education resources for supporting disabled children in mainstream education, called the Learning Together Guide.

The Down Syndrome Education (DSE) – formerly DownsEd – have developed lots of super materials designed to aid reading, writing and numeracy skills such as See and Learn. Their online shop can be found here. They also stock Numicon sets.

For free, legally-based advice surrounding the Statementing Process, visit IPSEA. They can help with form filling, transport queries and what to do when a Council refuses to assess your child for example. TES SEN produce worksheets and lesson plans for use by teachers working with children with additional needs. More free posters, labels and worksheets can be downloaded from Twinkl.

Amongst other resources, Makaton provide a free Back to School pack of symbols which you can download here. NetBuddy (now part of Scope) run a tips and tricks website. Parents write in with ideas to help with anything from hairbrushing to keeping glasses on or surviving car journeys. Worth a visit if you need advice or have a top tip to share.

ERIC are the childhood continence experts. Their site sells products to help with the toiletting process, whatever stage you are at, from protective underwear and swimwear to sheeting and story books for children to help with understanding. And if your child is making the step to secondary school, the Foundation for People with Learning Disabilities (FPLD) has a useful transition leaflet here.

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.

 

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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