Will other political parties follow the Chancellor’s lead?

Yesterday I was at the Conservative Party Conference in Birmingham when George Osborne set out plans to eliminate the deficit if the Conservatives win next year’s election.

The debate, as summed up by one commentator, ‘was George Osborne’s speech yesterday: bold – or just reckless?’

It’s clear opinions are divided.

The Chancellor announced £25 billion of further cuts over the next 5 years, much of which will come from a further squeeze on welfare budgets.

There are cheers, even calls to go further. Charities – and indeed some members – are concerned about the impact on vulnerable people.

It’s easy to focus on the headlines, and frame his speech as playing to the right.

But as ever there’s more to the speech.

Two small, yet crucial mentions of disability perhaps reveal a desire to bring more than just the usual suspects with him.

The Chancellor promised to protect disability benefits.

Could this recognition be an attempt to start building bridges with disabled people?

Life costs more if you are disabled. Buying a wheelchair, higher energy bills, higher insurance premiums. Scope research shows all this adds up to an extra £550 per month. Some costs can’t be avoided, but too often disabled people continue to pay over the odds for everyday items and services. Too many of these markets don’t work for disabled people, there is insufficient competition and disabled people pay over the odds.

The disability benefits Osborne pledged to protect are the financial life-line that disabled people rely on to help meet these costs.

The wider benefits freeze will unquestionably affect disabled people.

A million disabled people who are not fit to work will see their income support frozen, as will the quarter of all jobseekers who are disabled. Scope has always been clear that disabled people will be hit hard by the cumulative impact of cuts to out of work benefits, housing benefit and other support.

Nevertheless, a decision to maintain the value of extra costs payments is extremely welcome. And if the Chancellor can find room in his speech to ‘protect disability benefits’, it’s now time for all of the political parties to do the same.

Caring for my two sons as a disabled mum – #100days100stories

Emma has two children and works for a publishing company. She also has cerebral palsy, and she shared her experiences of pregnancy, childbirth and bringing up her children with us in September 2014. We’re republishing it here as part of our 100 days, 100 stories campaign.

I work full-time for a publishing company in London and am mum to two perfect little boys – Oscar, aged five, and Henry, one.

Emma and her sons smiling

I was diagnosed with cerebral palsy at the age of six months. It affects only my left side but I can walk quite easily unaided (better if I wear my splint).

It affects my gait, balance and the fine motor skills in my hand. I tell people it means I can only carry one cuppa at a time!

Having children

It didn’t even occur to me that I would have any difficulty having children. I had been brought up to believe – quite rightly – that I could achieve anything, so it was just the logical next step after I married my wonderful husband, Matthew.

My first pregnancy was fine until six months, when I developed symphysis pubis dysfunction (SPD). Suddenly walking was incredibly painful. Whether my condition played a part in developing SPD I’ll never know, but it didn’t make it any easier to cope with.

Emma's husband and son in the parkMy CP means I have a curved spine and because of this an epidural was ruled out. On top of this, Oscar was in the breech position so I had to have a caesarean section, but I recovered quickly and with no side effects.

During my second pregnancy, my CP affected me quite badly. I noticed that my balance was affected from quite early on, and I tripped a lot. I had four falls in my last eight weeks, and it was terrifying. But again, I had another healthy boy by c-section.

Looking after my boys

Caring for two active little boys is hard work for any mum. I don’t think about my CP every day – I just get on with things – but it does make life a little tougher.

Breast and bottle feeding was always my biggest challenge. When we were at home I could always find some way to get comfortable, but out and about I would need help.Emma with her sons

With Henry I breastfed exclusively until four months, but he then got too heavy and I found I began to favour one side over the other due to my physical limitations.

As they got bigger, I found it hard to carry them for long periods of time. I found this very hard emotionally, but I gradually realised that we could be close in other ways. I also think it helped them to be a little more independent.

“Mum’s cranky leg”

As my eldest, Oscar, got older, he started to notice and understand Mummy’s condition. He refers to it as my ‘cranky’ hand or leg!

He knows there are some things I find hard or will take longer to do, but he just accepts it as the norm, which is wonderful. There are few disabled children in his school and the teachers often comment on how considerate he is.

The age gap between my children, although not intentional, is a godsend – my elder son is such a help. I make sure I don’t ask too much of him, but he is more than happy to fetch and carry for me, and gets a real satisfaction from helping.

I’ve had cerebral palsy since birth so of course I have no other frame of reference, but I’m pretty sure any parent feels a little out of their depth sometimes. All I can say is that I feel very blessed to be mum to two healthy and happy children.

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

The Lesley Finley Awards

Scope supports the DIAL Network, an independent network of local disability information and advice services, run by and for disabled people.

Every year the DIAL Network helps over a quarter of a million disabled people. Melanie Close, Chief Executive of Disability Equality North West (DENW) talks about an awards ceremony they recently held to recognise the contribution that Disabled People make in the community.

lesley finlay
Lesley Finlay taking part in a march

It was with great shock and sadness that we found our Chair, and friend Lesley Finley had passed away last year.

Lesley, who used to be a nurse, was registered blind at the age of 25 caused by the diabetes which she was diagnosed with at the age of 10.

She had two kidney transplants as well as two pancreas transplants and was also a bilateral amputee – not many people realized that Lesley wore two prosthetic legs.

But despite her health issues, Lesley was a good friend and hardworking colleague of Disability Equality NW for over 10 years. Starting as a volunteer, she went on to become a Trustee, Company Secretary, Vice Chair and then Chair of the organisation. Lesley had a passion for supporting and enabling Disability Equality to support local disabled people and where necessary would actively challenge service providers to ensure equality of access for all. Lesley was a quiet person who worked extremely hard, she would do what needed to be done, without making a fuss or telling everyone she’d done it; Lesley never sought gratitude or acknowledgement – she just wanted to make the world a better place for disabled people.

We wanted to celebrate Lesley’s life and the contribution she made to our organisation and decided to hold the first Lesley Finley Awards ceremony. The award highlights and recognises the amazing work done by disabled people in Lancashire, to improve the lives of other disabled people. The awards were also a tribute to Lesley – to the hard work and commitment she showed in helping others

We plan to make the award on an annual basis to a disabled person who has made outstanding achievements and contributions in the areas of disability rights, welfare and support of disabled people and the promotion of independence and the principles of the Social Model of Disability.

The award was sponsored by Community Gateway, Prestons largest social housing provider.

Seven people were shortlisted for the award, all who had made an outstanding and varied contribution to the community.

The winner of the award was David Hinchliffe for his role as a volunteer at the Harris Museum and Art Gallery, helping to make exhibitions and projects accessible for people with visual impairments and hard work in assisting a group to be independent and continue to meet after project funding came to an end.

We’re looking forward to next year’s awards and seeing all of the great work that is happening in our community.

Celebrating prized possessions

Post from Sanchia, Gifts in Wills Fundraiser at Scope.

Today is the beginning of our annual gifts in wills week! This year we are celebrating prized possessions because gifts in wills are Scope’s prized possessions.

No matter how big or small, we all have a prized possession in mind we would like to pass on to someone special one day; maybe some jewellery, a treasured heirloom or even a wish to leave a gift in your will to make the world a better place.

Did you know that gifts in wills generate a quarter of our income each year? These gifts help us achieve our vision to support disabled people and their families.

This week, we would like you to reflect on what’s important to you.

Don’t miss our next blog this coming Wednesday to read about unusual bequests.

Photo by Jen Chan

Interested in delivering disability equality services?

At Scope, we’re sometimes asked if we can provide disability equality training (DET) or consultancy services to companies we work with. Since 2010, we haven’t provided these services, recognising the excellent work of disabled people’s organisations (DPOs) and disability consultants in this area.

In future, we’d like to use these occasions to introduce companies to DPOs and disabled people who are consultants that can deliver DET or other services the companies want.

So we’re inviting expressions of interest from organisations and individuals interested in joining our list of trusted providers.

Any work would be negotiated between the DPO and the client, but we want to offer companies some assurance on the quality and type of delivery, for example:

  • We’d expect any DET training to be delivered by a suitably qualified disabled person who has sound knowledge and understanding of the social model of disability.
  • We’d not expect a DET training programme to include any simulation training.
  • Any technically oriented service, like access auditing, would require evidence of technical competence.

What’s in it for me?

  • Opportunities to work with big companies and build new client networks.
  • Payment for your services.

What happens next?

  • If you are interested, please email Graham Findlay, Relationship Management Executive (Disabled People’s Organisations) graham.findlay@scope.org.uk as soon as possible.
  • We’ll send you more information on how the scheme works  and a list of criteria we expect you or your organisation to meet.
  • If you meet the criteria, we will add you to our list of trusted providers.

Improving disabled people’s living standards at the Labour Party Conference

This year’s political conference season is an important one. With just eight months to go, the outcome of the next general election is far from certain, and this annual political set piece provides a chance to energise supporters and cut through to the electorate.

Scope continues to push for every political party to make improving the living standards of disabled people a central part of their election manifesto. Arriving in Manchester for Labour Party conference on Sunday, we had a packed agenda to get through.

A big part of Scope’s activity revolved around improving the social care support that enables disabled people to live independently. We are members of the Care and Support Alliance (CSA) – a coalition campaigning for increased investment in the social care system. The CSA had an interactive exhibition stand in the main hall, which allowed politicians to understand the numbers of disabled people who use social care support in their constituency and that the public support an investment in the social care system.  Talking to MPs, Councillors and Shadow Ministers -the stand was very popular – amongst dozens of others we had Liz Kendall MP, the Shadow Care Minister visit us.

Richard with Liz at the stand

The CSA also hosted a panel debate with Liz Kendall MP who was joined by Peter Kellner, the President of YouGov, Caroline Abrahams of Age UK and Anushka Asthanta, Political Correspondent at Sky News to debate how social care can decide the outcome of the General Election. It was a packed room and a high quality debate.

Full room facing a panel of speakers

Social care was a big theme of the Labour Party conference, reflected by the number of meetings and discussions we had. Scope had a further three roundtable discussions on the topic alongside high profile national organisations and MPs. The final day saw the Shadow Health Secretary, Andy Burnham MP, deliver a passionate speech about his determination to improve the care system. It was notable that the Labour Health Spokesperson placed such a strong focus on social care – not just the NHS – and it looks as though the Party will seek to make social care a general election issue.  Whilst this is encouraging, we must make sure that any changes to the system include the adequate funding to enable disabled people to live independent lives.


Room with panel of speakers sitting at the front

Scope also worked in partnership with other important organisations. Speaking alongside Labour’s Disability spokesperson, Kate Green MP and Employment spokesperson, Stephen Timms MP, our Chief Executive Richard Hawkes launched Scope’s work with the think tank, the Centre for Social Justice (CSJ), whose Director, Christian Guy, was also on the panel. Despite the early start the session was packed, and focused on how to improve the number of disabled people in employment. As part of the session both Kate and Stephen spoke about how they wanted to devolve aspects of ‘back to work support’ from central Government to cities and regions.  This is something that Scope has been working on, and we were delighted to hear about this commitment.

Kate Green MP also attended a launch event for a series of essays on ‘The Future of Disability’, published by the think tank DEMOS. The event focused specifically on the essay contributed by Scope on the extra costs of disability. This was a high level private meeting, and everyone left clear about the importance of tackling these extra costs and the work that Scope is doing.

In between we had meetings with a number of important MPs, including with the Shadow DWP Secretary of State, Rachel Reeves MP. We outlined the importance of protecting DLA and PIP in the next Labour manifesto as well as improving the employment opportunities of disabled people, and will continue to push for this.

Finally, Richard Hawkes appeared on a panel to discuss Scope’s experience in social investment with Labour’s spokesperson on the voluntary sector, Lisa Nandy MP. Richard’s contribution got picked up in Civil Society… see why…

A busy and very productive few days in Manchester. Now attention turns to next weekend and the Conservative Party Conference…

Help create a new pond for Ingfield Manor

Post from Alan Stechell, School Manager at Ingfield Manor School.

Volunteers excavating for the pond

Ingfield Manor School could receive up to £3,000 in Lloyds Bank community funding.

Ingfield Manor, a Scope school for disabled pupils aged three to 19, has been shortlisted by the Lloyds Bank Community Fund as one of four groups in their area who will get some money.

Money raised will go towards the school’s Woodland Project – a new development also funded by The Friends of Ingfield to create an extensive outdoor learning area for pupils at Ingfield and other local schools. The restored pond will be used by the students in their studies of wetlands and bio-diversity.  We are hoping to construct decking and pontoons, to allow access over the water. Permanent fencing is needed to complete the project.

How to vote:

  • On-line – follow our unique link: https://lly-cf.com/LPJ
  • Text: VOTE LPJ to 61119
  • Twitter: #COMMFUND LPJ
  • In a Lloyds branch: Ask for a voting token

And please help us spread the word!

An intimate insight into the world of neuromuscular disorders

Guest post by filmmaker Fay Hart. Fay is creating an interactive documentary which tells the personal stories of disabled people.

I am a postgraduate filmmaker and specialise in documentaries. I also just happen to have Cerebral Palsy and Epilepsy, but rather than seeing it as a barrier to my work, I see it as a storytelling tool.

I am a relatively new filmmaker, having previously got a degree in Graphic Communication. My neuromuscular condition impaired my motor skills and movement, so it became difficult to continue communicating through graphics. I discovered filmmaking as a new way of storytelling and a medium that I could access independently. Filmmaking is also very accessible with so many devices that now facilitate it. I am able to use a range of compact and portable devices; smartphones and digital SLRs. Cameras originally designed for extreme sports can be easily attached to my wheelchair.

How Fragmented Lives began

Having been disabled since birth, there have been many milestones that I have reached in life, both good and bad. The only place I have been able to relate to people online has been through written forums. However these can be difficult to access given my motor skills. Written content also lacks the emotion which contributes to neuromuscular Disorders.

I realised that these emotions can be captured through film but I had no platform to share these in a visual and contemporary way. I also began to recognise that others in similar circumstances didn’t have a platform so Fragmented Lives began to evolve.

I intend for the project to continue to grow by getting as many people as possible to capture and upload their own experiences. The project will culminate in multiple stories with diverse experiences but most significantly, multiple lives.

Why Fragmented Lives is different

Many documentaries about disability, lack the honest and raw emotions which often comes with having a disability. Many only focus on the facts and physicality of everyday life and on the conventional. Fragmented Lives offers a unique and incremental perspective. It’s an interactive documentary which focuses on the emotional impact of disabilities and personal stories.

Given it’s a highly accessible and interactive platform, this project will develop into a place where multiple stories can be shared and viewers have the opportunity to become the filmmaker.

Fragmented Lives has the capacity to become an emotive, collaborative community network. Here are two of the first few stories:

Survival

Jonathan lives though his gaming, which offers a world of normality and agility:

Finding my future

An illustration of the social and emotional implications of my journey of embarking on major surgery:

For the other films and to get involved visit the Fragmented Lives website. You can also follow the project on Facebook and Twitter.

“It’s simple solutions that make all the difference”: Marie’s story

At three foot six and with brittle bone disease, Marie is constantly adapting to looking after her growing baby Mark. And Marie and her husband Dan are finding often it’s the simplest adaptations that make the biggest difference to family life.

Mark is nine months old now and we simply do not know where the time is going. Every day is magical and he brings us so much happiness. Mark has recently started feeding himself finger food and is really enjoying meal and snack times. He will walk over to me when he is in his walker to high five me, a new trick! It won’t be long before he is walking independently and we have already started moving things up, which is where the seat riser in my wheelchair comes in handy.

We recently had some building work done to improve our bungalow. When we bought our place four years ago we were refused any help with adaptations and alterations from the Disabled Facilities Grant.

Marie in a wheelchair, holding Mark, on their outside decking
Marie and Mark on their new outdoor decking

So we have had to save up for this work – and now the back end of our home is completely wheelchair friendly. I can now drive my chair out from our lounge straight onto the decking and then down into the garden, as we now have full level access. To keep costs down we used standard building materials, standard French windows and lots of inventiveness to make it all work. This now means Dan, Mark and I can make the most of the rest of the summer and start planning garden toys and sandpits and things for Mark next year as a toddler!

Also our local Remap charity (who are awesome) made me some ‘steps’ from plywood covered with soft foam and fabric, suitably sized to push up against our sofa. This very simple contraption now means I can climb from my wheelchair onto the sofa and then from the sofa independently get onto the floor to play with Mark. The ‘steps’ are then moved out of the way so Mark can’t climb up and down them, the cheeky little monkey that he is! Being able to get on and off the floor has been really good and Mark enjoys having mummy play on the floor too. Such a simple and elegant solution to one of life’s problems when you’re 3 foot 6 and can’t stand!

Marie sitting on a soft step next to a lounge
Marie on her new soft lounge steps

We’ve always found that it’s simple solutions like this that make all the difference. It just takes a bit of determination and lateral thinking and you can overcome most of life’s obstacles – that’s something having Mark is making me realise more and more.

Marie is blogging about being a disabled mum for Scope, and has been raising awareness by talking to Sunday People, That’s Life! magazine and Disability Horizons.

For simple tips on adapting your home, check out the new tips feature on our online community.

Parents share their stress-busting tips

A major new study published by Scope last week revealed that many parents of disabled children are suffering from extreme stress and isolation.  As many as 80 per cent said they felt frustrated, stressed and exhausted.

Talking to other parents in the same position, can not only provide much-needed emotional support, it can be a really useful way of picking up practical advice and ideas, which is why we have created the tips feature in our new online community.

Below are a selection of stress-busting ideas we’ve picked out from the tips. We’d love to hear yours too, so please add them to the comments box below!

It’s ok to ask for help

Friends and family are often very happy to help, but don’t know unless you tell them. Draw up a list of suggestions you can use to ask friends and family for help, for example school runs, baking birthday cakes, mowing the lawn, helping siblings with homework, being on an emergency rota for overnight hospital stays.

Choose your battles

I have learned the hard way to choose my battles carefully. I have to decide which battles really are important for me to win and which I can leave. The important ones involve safety and health. Some others you have to let slip for your own sanity!

Keep your sense of humour

My husband and I play a game where we place bets with each other which of our three disabled children will wake/ kick off etc. at what times. The ‘winner’ gets a treat from the other partner. Sounds silly, but making light of intensely stressful situations really does help us cope.

Do a happiness audit

Think about what gives you happy feelings and do it as often as possible – whether it’s singing, dancing, laughing, sex or chocolate. Create a ‘Prescription for change’ for yourself, listing the things you need twice a day and twice a week. Then stick it on your fridge.

A positive note

When you have a disabled child, filling in forms can be very depressing as you focus entirely on the negative. So I write on a separate sheet of paper one good point for every negative. I laminate this and put on the fridge so that when things are tough I can read it and remind myself of the fab things about my three disabled children.

Get all the help you can

I would suggest parents try every bit of help on offer – Portage, Child Development Centres,  local libraries, health visitor, support groups, etc. It’s much easier to opt out than to try and opt in later, when your child is older. Referral for specialist services (e.g. portage) can take ages and is worth getting sorted out as early as possible.

Be honest about your limits

Therapists mean well when they give you lots of exercises to do with your child, but sometimes, it’s impossible to keep up with them and still have time to do stuff like eat, sleep and breathe. Be open with the therapists if you feel overwhelmed, or need more ideas for exercises that can be an organic part of your day (say, bicycling a tot’s legs as you change her nappy).

Share the load

Let your partner help when they can. Yes, they may do things differently, but that isn’t necessarily a bad thing.

Face to face

Talking to other parents who are going through the same thing as you is always helpful. Face 2 Face is a one to one parent befriending service, run by Scope, for parents and family of disabled children.

Get plenty of exercise

Exercise is great for your overall mood. I’ve taken up weights, because my son is large and I worry that one day I won’t be able to manage him. Being fit has given me huge confidence in how I manage my son, which in turn has improved his behaviour.

Schedule time for yourself

Try to make a little quality time for yourself each day even if this means leaving the person you care for in front of their favourite DVD or TV program for half an hour. It won’t do them any harm! If you can, try and take half a day a week off – book a babysitter, book your child into a crèche/playscheme, play date, or family – give yourself that time to re-charge.

Organise your home life

Buy two of non-perishable items like washing up liquid, so you always have one in reserve. Have a whiteboard in the kitchen to write on when things run out. Plan your meals for the week – even think about having Tuesday as curry night, Wednesday pasta, Friday fish, etc. to save time thinking. If you can afford to, get a cleaner.

Get a good night’s sleep

Sleep is very important. If you are tired, you will feel even more stressed. Try taking it in turns to get up at night so one person always has a full night’s sleep.

Yoga for you

Take up Yoga to stop muscle injuries especially if you have to do lots of lifting and carrying.

Friends and hobbies

Friends and hobbies are enormously important because they take you out of your role as a carer for a short while. I try and mix with people who aren’t carers too, so I get to focus on something else for a bit.

Time out

I started running after the birth of my disabled daughter eight years ago. It’s my time out – time for me to de-stress, clear my head & take out my frustration on the streets. I come back a happier and calmer person, ready to deal with the real world again. I think we all need time out for ourselves.

Have you got a stress-busting tip to share? If so, let us know in the comments below.

Explore our other tips.