Tag Archives: disabled children

“I’ve talked about doing a marathon for 10 years, and this was the catalyst”: #100days100stories

Dan and Mel first shared their story in July 2014. We’re republishing it here as part of Scope’s 100 Days, 100 Stories campaign.

Dan and Mel’s son Oliver was recently diagnosed with cerebral palsy. Despite seeing specialists since a very young age, they had a long battle to get Oliver properly diagnosed, including nine months’ worth of tests.

“Oliver was different to other children, and we couldn’t explain why. Because of the issues and complex needs he had, he would do things like lick the radiator and lick the floor where it was cold. You’d go out into an environment where there were loads of other kids, and it was very obvious that he was different but we couldn’t explain why. You’d put him down on the floor and he would only crawl a little bit and then he would start eating the end of the table. We laugh at it now because we understand what he’s doing and why he’s doing it, but until that point we closed ourselves off and saw fewer people. We didn’t really want to go out – not because you’re ashamed, but you couldn’t turn round and say ‘This is why he’s behaving that way’.”

Dan and Mel's son, Oliver
Dan and Mel’s son, Oliver

Mel explained that it was incredibly hard to get a firm diagnosis, “but as soon as we got one and accepted it, it made us even more proud of him. We knew he had problems, but we didn’t ever dream he’d have cerebral palsy. I even remember saying at the beginning [of the road to a diagnosis], ‘Oh yeah, but it’s not like he’s got cerebral palsy or anything, it’s not so major.’ He doesn’t look like what many people would think a child with cerebral palsy looks like. He can walk and he’s got a voice – he’s non-verbal, but he has a voice and he uses it.”

Oliver’s condition left many paediatricians guessing for nine months, with Dan and Mel persisting that his behaviour wasn’t right. “At first we went to a private paediatrician who told us there was nothing wrong with him at all. It was at a young age, but other things had been picked up by health visitors. I contacted the NHS to get him into the system and the paediatrician we got is fantastic.” Putting Oliver through months of tests was difficult on his parents, and particularly Dan. “It was certainly hard putting him through it, watching him being tested. He was getting to the point where he understood enough to know ‘Oh, it’s another person prodding me.’ He would cry as soon as somebody came near him, because even though he didn’t understand everything, he understood that things were going on. That was quite difficult.”

For Mel, she was determined to get a diagnosis. “It was really important to me. Not that it changed anything – I don’t care if he’s got two heads! But it mattered, and I can’t explain why. The moment we had a diagnosis and it had sunk in, for both of us it felt like a weight had been lifted.” Dan goes on to explain that “there were definitely more tears shed in the run-up to the diagnosis than since the diagnosis. We do not feel sorry for ourselves or wish for different things, whereas before we were searching. Now there’s no need to search – it’s difficult to get the diagnosis, but once you do it’s a lot of help.”

Dan with Oliver
Dan with Oliver

Dan and Mel are clearly both very committed to their son, persisting to ensure he has the best support and stimulation possible including occupational therapy and sensory integration. It’s clear they have an eye to the future but it is still very early days for them in terms of Oliver’s diagnosis. Getting Oliver’s diagnosis was the catalyst for Dan to take on a challenge he’d been talking about for 10 years – the London Marathon – an emotional rollercoaster or excitement and apprehension. “I went through a phase where there was lots of pressure – you just think to yourself, ‘I just can’t let anyone down on the day’.”

The couple chose to support Scope as it captured a charity that helped others with similar needs to Oliver. “It goes to helping people, that’s the main thing.” Thanks to the overwhelming response of friends, family, colleagues and strangers, Dan has now raised more than £15,000. As well as support at work, Mel explained that Oliver’s nursery did a mini-marathon. “All the kids walked round the park – they raised £1,200, and that was just amazing. I think it makes a difference that it’s his first time running, and we’ve just had the diagnosis. For us, it’s been wow! We didn’t dream we’d get anywhere near this.”

There are still places available to run this year’s Brighton Marathon for Scope on Sunday, 12 April.

Find out more about the 100 Days, 100 Stories project.

Cheap and cheerful holiday activities

Your Easter budget might not stretch to Disneyland, but our friends at Netbuddy (now part of Scope) have come up with some great ideas for entertaining kids on a shoe string. Please add your own suggestions to this list and share nicely!

Treasure hunt

I enjoy going on a treasure hunt with my kids. The other day we collected sticks to make a pretend camp fire. Other times the ‘treasure’ has been stones or daisies. It’s a good, inclusive activity they all enjoy.

Glitter party

Poppy has very little fine motor skills and struggles with most art and craft activities. So I stuck some wrapping paper to the wall and we made hand-prints on it. Then we covered in glue and threw glitter at. Messy but great fun!

KnittingKnitacise

Knitting is great to exercise hand writing motor skills.

 

Rubbish instruments

Raid the recycling and make some musical instruments. Fill jars and plastic containers with rice to make shakers, elastic bands over a box can make a great guitar and balloons stretched over tubs for some bangin’ drums!

Make a den

My daughter loves it if we put a sheet over the dining table and make a den. I bring some of her sensory lights in and we all sit underneath. Her non-disabled brothers think it’s great too!

A real catch

A velcro ball and catch mitt set has been fantastic for my son who is unable to catch a regular ball. Great for fun, cause and effect and coordination. Ours was under £5 from eBay – check out ‘Spordas No Miss’.

Deflated balloonsFun with balloons

Fill two balloons (one inside the other) with sand or flour for a fun, sensory activity.

Retail therapy

A great free activity for a rainy day … the Argos catalogue! Harris and I poured over the pictures. Lots of opportunity for conversation, it was a bit like retail therapy except, since Harris doesn’t understand the concept of shopping, so no money was spent.

Electronic sounds

Electronic instruments are great for people who like making a lot of sound (banging furniture etc). They can make as much noise as they like with the head phones on and no one else has to hear it! You can get drum kits /keyboards etc.

Cheerio necklace

Try threading cheerios on a liquorice lace to make an edible necklace.

Strawberries, blackberries and bluecurrantsBerry tasty paint

Squash strawberries, blackberries, rasberries, blueberries etc to make a tasty paint.  Mix together the colours and tastes.  Great messy fun!

Word games

We’ve been using words on the back of paper-clipped paper fish with a magnetic fishing rod to make a game out of reading.

Matching pairs game

Use a digital camera to make your own cards for this game. you can photograph your own matching pairs ie your dog, your home, family, etc You’ll need two of each.

Make some thunder

“Thunder makers” are brilliant. I got mine at Hawkins Bazaar for around £8, you just give it a shake and it sounds like a low rumble of thunder, the harder you shake the louder it gets. (Be warned though they are addictive!)

Feeling art

For visually impaired people, try adding things likes sand or beads to enable them to feel their artwork. Be consistent and stick to the same textures for colours: sand for yellow, smalls beads are green etc.

pastry brushFind the alternative

Sal finds it difficult to hold small objects, so I gave her pastry brushes instead of small paint brushes for painting.

Rice is nice

Fill a bin with rice and let your child plunge their hands deep into it. Hide some toys and measuring cups for added fun. Dried beans also work well.

Make your own

I made my own 3-D letters, numbers and words in colours that Margy likes best to teach her to read. You can laminate or cover in plastic so they last longer.

Activity frame for wheelchairs

The frame from a small child’s swing makes a great frame to hang stuff from to go over a wheelchair as it is stable and can be folded for easy storage.

BlackboardDrawing wall

Stick some blank paper on a wall somewhere and turn it into a ‘graffiti wall’. You can also paint a wall with blackboard paint or put up a big white board for graffiti fun.

Home skittles

Use guttering to make a chute to play skittles.

Foil play mat

We use a foil emergency blanket as play matt for Matty –   it is great for sensory stimulation as it is shiny and makes nice sounds.

Black and white photo of family watching TV in 1950sCinema Club

Turn your house into a cinema. Choose a DVD together (bought or borrowed from the local library), make tickets, posters etc. Invite friends if you’ve got the space and then make popcorn, close the curtains and enjoy!

Paint with smells

I like to do ‘smelly painting collages’ with my daughter.  Using mint sauce, coffee, chocolate, sherbert etc.  We’ve also tried making a pulp from grass by adding a bit of water to it.  My daughter is visually impaired so it really helps bring the world to her.

Weighted toy

Weighted blankets and objects can exert a calming influence on some people. Try taking an old favourite stuffed toy and filling its paws and tummy with curtain weights, nuts and bolts or other heavy items. Great for sitting on people’s laps when they’re feeling jumpy.

Sensory album

We made our own sensory scrapbook. We stuck sensory bits and pieces alongside our own photos in an album to make it personal.

Make your own film

Use your camcorder to make a ‘film’ of a favourite book. We did The Tiger Who Came to Tea, using a toy stuffed tiger, shots of our table set up for tea, empty food packets, and a homemade cardboard claw peeking round the front door. You can do lots of voiceovers to explain what is happening, or do it documentary-style and interview the Mummy, the child, the cafe owner, Daddy, the Tiger etc.

Dance competitionChild dancing wearing hat

Put on the music and have a dance competition.

Toy libraries

Toy libraries are great for borrowing special needs toys and equipment. Much cheaper than buying. To find a toy library near you, contact the National Association of Toy and Leisure Library’s Helpline Services: tel: 020 7255 4616 or email: helpline@playmatters.co.uk

 Sensory flour games

I mix cornflour and water together and it makes a great sensory play tool. Also put flour into a plastic bag and seal it with some food colouring. As it gets squished round it will change colour.

Fluorescent images

We have installed a UV light in our dark hallway and use fluorescent cards with shapes cut out to stimulate Ruby who is visually impaired. As she gets older we are turning shapes into letters, words, numerals, books.

Enticing smells

Put good smells in paint or playdough to make it more interesting.

We’d love to hear your cheap ‘n cheerful tips for Easter. Please share your own ideas in the comments box below.

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.

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.

Attitudes to disabled children: the good, the bad and the change needed

We held a survey with MumsNet this week. It found 6 out of 10 parents of disabled children find activities – like play groups, youth clubs and leisure centres – shut out their son or daughter.

What’s shocking is that it’s not about access or specialist equipment. It’s about the attitudes and understanding of other parents and people running the activities. These make the biggest difference to whether disabled children have the chance to play and mix with other kids.

Thanks for sharing your experiences on our blog, Facebook and Twitter.  Here’s some of what you said — and how we can make a change.

The good

It’s encouraging to hear great examples of local activities welcoming disabled children, and how there seems to have been a change for the better over recent years.

“I help on a Scout camp for Scouts with special needs who may find camp with their own group difficult. I have been going for more than 25 years. When this was first set up, integration was virtually unheard of. Thankfully young ones are in their local Scout groups having fun with their peers and going camping without problems now.” – Dawn

“My daughter has an autism spectrum disorder. Our local gymnastics club has been brilliant. The club is now looking to expand and have more facilities and classes for children with additional needs.” – Mandy

“I always go to local groups with my disabled daughter! No one blinks an eye. We do live in a village where everyone knows everyone so they all know me and my daughter. We’ve never had a problem and I count myself very lucky.” – Charlotte

“My son had been made to feel very welcome by the Scouts and is loving it. Apart from development delay and an autistic spectrum disorder, he also had epilepsy. They are happy to have extra training on how to deal with a seizure. Very impressed. The children have been completely accepting of my son which in itself is great.” – Susan

The bad

We heard of many local activities shutting out disabled children. This echoed the findings of our survey with MumsNet.

“My daughter was thrown out of Brownies for being too disabled and asked to wait for a group that was more ‘disabled friendly’. Still hurts today and that was 12 years ago.” – Trina

“Find it hard to find play facilities, such as swings in parks and so on, that cater for children in wheelchairs.” – Dorren

The change needed

It’s clear from what parents say, that many local activities need to change so that more disabled children can take part.

Here are a few ways you’ve dealt with the challenges yourself.

“I offer to stay in the next room, so she gets her independence at the group but so I’m in the vicinity should she need me or should they need advice. Local drama group were very supportive.” – Emma

“Persistence! Our daughter with cerebral palsy is in Rainbows – part of the Girl Guides. It wasn’t easy finding a group who could take her. Then there was a lot of red tape and medical forms to fill in. In the end it was all worth it.” – Shelly-Ann

“I was careful to choose clubs that weren’t too busy. We chose Beavers because the leader said, “Why hasn’t he come with you – go and get him!” when I went to enquire.” – Adele

It’s great that some parents have found ways to deal with the problems or started their own activities, but the obstacles shouldn’t be there in the first place.

The Government is writing new guidelines on how councils should make sure disabled children can take part in local activities. We want them to support organisers and be clear on how activities should be run.

Everyone must play their part. We need commitment at every level to making sure disabled children can play, just like any child. As someone from the US Department of Education tweeted when they heard about our survey:

Negative attitudes hold disabled children back during half term #ThisisMyChild

Children playing

Today is the first day of half-term. For so many parents and children across the country, the half-term holidays are a time of playgroups, and football matches, Brownies, swimming and seeing friends.

But for too many parents of disabled children, school holidays are a time of stress and anguish at not being able to access the activities that so many children take for granted.

“My child feels frustrated when he can’t participate in the same clubs that his friends and sibling attend. It can be quite alienating and makes socialising with peers from school difficult at times.” (Joanne, Bristol)

“It not only affects my disabled child but also my other children who feel guilty for accessing mainstream activities and sometimes restricted from accessing them due to their sisters’ needs.” (Carly, Bristol)

“My daughter has missed out on lots of experiences that other kids take for granted: making new friends, trying out new things, becoming independent, etc.” (Helen, London)

Mumsnet survey

We joined forces with Mumsnet, the UK’s biggest website for parents, to survey parents of disabled children on their experiences trying to access after-school activities such as youth clubs, sports clubs, Brownies and Scouts.

And the results were astounding…

Six in ten parents of disabled children say that local activities are not open to their son or daughter because they are disabled. This means that four in ten parents of disabled children say that their children ‘rarely’ or ‘never’ have the opportunity to socialise and mix with children who are not disabled. This experience of being turned away from clubs has left them and their children feeling isolated and desperate.

“It makes my son feel excluded and very aware of the fact that, although he’s in mainstream school, he’s not ‘like’ the other children, which has really impacted on his self-esteem.” (Sarah, Canterbury)

“We were made to feel like outcasts sometimes due to behaviour issues and his bowel disorder. Staff would always refuse to help him. This was deeply upsetting.” (Tracy, Northfleet)

“Parents even in this day and age seem to think my son is a leper with a contagious disease yet he has cerebral palsy.” (Helen, Surbiton)

“It makes us feel awful, unwanted, isolated and alone. It puts additional pressure on us as parents as we feel we’d like to do more, but are so exhausted at trying to help him fit it.” (Mary, Ely)

Justine Roberts, Co-Founder and CEO of Mumsnet, said:

“One of the motivations for our This is My Child campaign is to show people that social inclusion of children with additional needs is crucial to their quality of life. With a bit of organisation and planning, children with disabilities can happily take part in all kinds of extra-curricular activities.”

The survey also revealed that 7 in 10 parents believe that more positive attitudes and better understanding of disability amongst staff and organisers would enable their child to be included. For them, this was far more of an issue in enabling their child to access after-school activities than inaccessible venues, for example. It is the people, not the buildings, that need to change.

What can we do?

Scope and Mumsnet are calling on local councils to do more to make local leisure activities, groups and play centres inclusive to disabled children. We believe that the Government needs to set the tone for a culture change in how local groups and centres are planning and run, so that they are accessible and inclusive for all local children and their families.

In the meantime, this half-term, we are also asking parents of disabled children to share their thoughts and tips on how to deal with the negative attitudes of staff at local activity centres.

Have you every experienced negative attitudes from staff at an extra-curricular activity in your area?

How have you challenged these attitudes to encourage them to include your child?

If you’ve been able to overcome these attitudes, we’d love to hear from you and will compile your suggestions into a short guide to help other parents during the holidays.

10 tips for a stress-free day out this half-term

Netbuddy have created a fantastic pack full of tried and tested tips from parents and carers who are supporting children and adults with complex needs this half-term. Here are just 10 of the great tips from the pack:

  1. Prep for outings – When attempting a new activity or outing, e.g. horseriding, theme park etc., prepare in advance by showing pictures, books, leaflets & talking about it. We have found YouTube invaluable as most venues & activities are in video form. Also many attractions have apps you can use.
  2. Take a camera – We went to Nymans Gardens recently and my son Toby walked so quickly that we couldn’t enjoy the beautiful surroundings. In his head, a walk means a walk to somewhere. Half way round we gave him our digital camera and he slowed down to take loads of photos. We will now always take a spare camera with us!
  3. Separate outings bag – I keep a separate outings bag always packed and ready to go with a change of clothes, pads and wipes etc. I just need to add snacks and off so then I’m not flying around at the last minute when going out.
  4. Reserve a parking spot – Lots of places have reserved disabled parking in their staff car parks. Phone ahead and try and book yourself a spot.
  5. Just ask! – Most attractions offer disabled discounts, special access, carers-go-free solutions, but carers often don’t ask for it. Please do ask whenever you are visiting any facility as it can save you a small fortune.
  6. Remembering days out Make it easier to communicate about days out – use a camcorder or camera phone and scrapbook to record special moments that you can look at together at the end of the day. Use a scrapbook to tell other people about favourite days out.
  7. Planning ahead – I think it’s important to always have little snacks and toys when you go on an outing. John loves his special Mary Poppins back pack where we keep his favourite things which I use to comfort and calm him if it all becomes too stressful or noisy for him. I put in his Nintendo, a toy, a book, drink, snack/treat and also a walkman so he can listen to a story or music.
  8. Transporting medication – If we are going to be out of the house when my son’s evening meds are due, instead of taking the bottles with us, we measure the meds out in a syringe and pop them in one of his old glasses cases to transport them (it holds 2 syringes perfectly!)
  9. Radar key – Get a radar key. These cost just a few pounds and are usually available
    from town halls and tourist information centres. They save us from queuing at public toilets, and are often cleaner and of course more spacious.
  10. Getting lost – If you are going to a theme park, and are worried about loosing the person you are caring for, when you get there take them to the guest services and introduce them. Also write your contact details on a piece of paper and put in their pocket.

We hope they will help you plan a harmonious half-term holiday!

Download the complete pack

What are your top tips for caring for children and adults with complex needs this half-term? Let us know in the comments below.

Making independence and inclusion a reality

Post from Scope’s Chair Alice Maynard.

The anniversary of the Paralympics has sparked a nationwide debate about being disabled in 2013. The Government’s hope that the games would improve attitudes to disability has rightly come under scrutiny in the media. I’m just one of a diverse bunch of activists, experts, writers and sportspeople who’ve been touring the studios warning that the divisive scrounger rhetoric undermines any positivity from 2012.

In this blog I wanted to pick up on something that hasn’t had quite the same air space over the last couple of days… the Government’s ambition to get more disabled people involved in sport and the community more widely.

The Government’s independent evaluation points to small increases in participation in sport and the community. But there’s a bigger picture here. As Tanni Grey-Thompson argued recently if you can’t get out of bed or get washed in the morning, you can’t take part in sport and you are not going to be involved in the community. In 2013 there is a crisis in living standards for disabled people. Nearly one in five (16%) disabled people say they cannot keep up with rising costs of living. Disabled people are three times more likely to take out high interest, high risk loans to pay the bills. Yet the Government has stripped away £28.3 billion of financial support for disabled people. Meanwhile 100,000 disabled people are being pushed out of the social care system, with many struggling to get support they need to get up, get dressed and get out of the house. That’s why our Britain cares campaign is calling on people across society to tell the Government they really are concerned – they care – about this issue.

It’s not just adults. At the same time parents across the country tell Scope that too often local services segregate rather than provide support for greater independence and inclusion. The Government must take the lead. And it has two big opportunities: the Care Bill and the Children and Families Bill (which has been the focus of our Keep Us Close campaign), both of which are being debated this autumn.

If the Government wants disabled adults and children better included in sport and the wider community, it needs to end the squeeze on local care and place duties on councils to make local services more inclusive. Scope is one of many organisations making the case for a tougher legislation. But legacy is not just a job for Government, though they have a crucial leadership role to play. We all have to play our part in helping to realise a world where stereotypes and attitudes don’t hold disabled people back, and where inclusion and opportunity is a reality for everyone. Our actions must speak at least as loudly as our words; not always something that comes naturally to charities.

People rightly ask what we’re doing on the ground to create a society where disabled children and adults are better included in their local community. We’re proud of some our new services that are doing just that. Scope is running a pilot where parents of disabled children are supported to pool personal budgets from the council to buy accessible activities within their communities. And we’ve just brought out a toolkit for teachers to support them to better include disabled children in mainstream education.

At the same time we are transforming the more traditional local services we run so that they promote greater independence and inclusion. For instance, we have changed or closed a number of residential care homes in the last few years. This is absolutely crucial, but it’s not something that can be done without a great deal of consideration as it is often hard for the disabled people, families and staff involved. So when we make changes like this, we do our best to do it sensitively and respectfully, supporting everyone affected to understand what the changes mean and what choices are available to them. Where it is no longer appropriate for us to provide support for people, we want to work with the relevant authorities to help ensure that those people’s needs can be properly met elsewhere. We know that many disabled people find the pace of change frustrating and we know that a number of groups will be making this point as part of the ‘Reclaiming our futures’ week of action from Monday. But for organisations like Scope, there’s a real balance to strike between taking the time to manage change properly whilst not using this as an excuse to change too slowly.

To bring it back to Paralympics legacy. Although attitudes underpin everything, I hope we can debate how we better include disabled people in the community. The Government has to take a lead. But charities like Scope can’t simply shout from the side-lines. We have to make sure that we develop our services to embody inclusive education and independent living, however difficult that may be. When we get challenged on this, we must welcome that challenge and use it to help us make progress.

5 unexpected tools for the keen campaigner

Petitions, letter writing, provocative slogans on t shirts…the essentials when campaigning on social change. Throw in a few media stunts with over-sized props and you’re looking at a campaign win. Maybe…? Here at Scope we’ve been trying out some tactics that aren’t as common when campaigning – and learning a lot along the way.

As we’re recruiting for a National Campaigns Officer, we’ve been reflecting on some of the unexpected tools we’ve used so far…

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1) Glitter

Arguably a useful resource to have around whatever you’re doing, last Christmas we proved that glitter can also be a powerful campaigning tool.  Also essential was glue, and over 1,800 stars with wishes for better support for disabled children. In December we found that glittery wish stars could be the magic ‘thread ‘ so often sought by campaigners – tying together a key policy ask with a media- worthy action that resonates with the public and all while catching the attention of decision-makers.

It was all part of the Keep  Us Close campaign, aiming to ensure that disabled children and their families  get the support they need close to home. The Wish Stars were displayed on a 20ft Christmas Tree at a Parliamentary reception, and then sent onto MPs afterwards – from whom we got many positive responses: “the stars have pride of place in my office in Westminster”. They even made it onto the Guardian.

Why it works: Creative delivery and meaningful messages, together with a clear destination for campaign actions (a Parliamentary Christmas tree, say) should never be underestimated.  Neither should the power of glitter.

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2) 236 till points

Charity shops. Great places to pick up a bargain, and maybe leave with a warm glow knowing you’ve donated to a good cause. A place to lobby influential decision makers? To learn about key issues affecting disabled people today? Surprisingly yes – the charity shop till point ranks highly as one of the most important tools for a Scope campaigner.

In the past year, Scope customers have sent over 43,000 campaign postcards to MPs on key campaign issues. The shops dedicated a month each to Scope’s key campaigns in October and again in May, with posters throughout the shop and staff and volunteers encouraging their customers to sign campaign postcards that were sent to their MP – and they did, in their thousands. And with the card-signing came valuable conversations. MPs also visited the shops, showing their support for the campaign and encouraging local media coverage.

The response from Scope customers to the campaign issues was overwhelmingly supportive. Speaking to our customers about our priority campaigns makes sense – it allows them to learn about the issues facing disabled people today, and how they can play a role in improving the situation.

Why it works: MPs often need to hear about an issue from a large base of people, and shop staff want a way to engage with their customers and share more about the work that Scope does. The perfect match. And there’s potential to do a lot more.

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3) 300 flat pack boxes

Searching for reasonably priced flat-pack ‘fold at home’ gift boxes online is a tricky business. There is a surprising array of colours, dimensions and sizes available.

Why was I searching for a suitable ‘memory box’? It was January. We wanted a campaign action that wasn’t ‘make a new year’s resolution for change’. MPs needed to hear a strong, memorable reminder that family time together was precious. The Children and Families Bill was about to go into Parliament, MPs had already received emails, shop-postcards and wish stars on the issue.

Asking people to share a fond family memory with their MP turned out to be a good decision. We had a brilliant response in just three weeks (even in January!) and the memories people shared were heartfelt and meaningful – from sandwiches on the beach with Nan to long car journeys and Christmases together. Some people even shared photos. We packaged these memories into the freshly-folded boxes, tied them up with string and hand-delivered them to MPs.

Why it works: Often supporters have meaningful messages to add to a campaign, you just need to ask. Create an interesting space for people to make their actions unique and then do the message justice with creative delivery. And remember that MPs want to hear personal stories.

4) “Hi, my name is…”

Okay this one seems tentative, but bear with me. Meeting other people isn’t that radical – but finding campaign allies can often be overlooked as a priority. In the past year, we’ve had great success building relationship with others – across Scope departments, and with other organisations – and we need to keep at it.

Scope donors now regularly support our key campaigns. They’ve received emails, postcards, and even their own pre-made wish stars – so they can support Scope not only with their generous donation, but also with their influencing power.

We’ve worked with our Scope service Activities Unlimited on the Keep Us Close campaign (involving a Fun Day with a LOT of glue and glitter). We’ve introduced MPs to parents of disabled children via our Face to Face service. All of these activities depended on building a good relationship – and making an effort to understand the aims of others and how working together can strengthen them. And there’s always more to do.

Why it works: Working with others isn’t new – but is it essential. Our supporters won’t pigeon–hole themselves – so neither should we. Shop customers, parents, donors – they can all take part in a campaign, so it’s our job to work together and make it possible, and keep learning to make the partnerships better and better.

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5) A bar of soap.

The social care soap may take the prize as the most unusual tool so far. But if you’re intrigued, there are plenty of soap bars still being decorated to send to MPs as part of the Britain Cares campaign. And socks. And cards.  So you can join in! Again, it’s about being able to show MPs that this is an issue their constituents really care about. But this time the creativity doesn’t come from Scope – it comes from the crafter themselves – who adds their ‘I care’ message in their own way. While they’re busy stitching, gluing or carving into soap, they automatically invest time in their message, and can contemplate what they’re saying and why. Increasingly we hear that MPs need to know the messages they receive are meaningful– so creative campaigning seems to have a very important role to play.

Why it works: It’s fun, it can be therapeutic, it creates a personal message and catches the attention of MPs with its uniqueness. What’s not to like?!

There are plenty of tools that didn’t make the final 5 – telling a story with animations or compelling case-study films, working with partners from large corporates to local groups. And there are still more tools to be discovered for the next, and most ambitious campaign that Scope has planned. The possibilities are open.

Maybe you could be the one to create them…?

You can apply for the Scope National Campaigns Officer role here.

MPs keep up the pressure to keep families close

Families at breaking point

On Tuesday MPs debated changes to support for disabled children in the Children and Families Bill for the final time.

Scope launched the Keep Us Close campaign last October after our research showed that almost two-thirds of families with disabled children can’t get the support they need in their local area. Essential services such as schools, playgroups and leisure services aren’t inclusive and accessible, denying disabled children vital support.

Parents of disabled children have told us heartbreaking stories of being pushed to the limit by the lack of support. All around the country people have been moved by this issue and more than 22,000 people contacted their MP calling on them to take action.

MPs respond

So what happened in this important debate?

There was great news that MPs from both Labour and the Conservative Party supported Scope’s two key amendments to improve the Bill. The first change we wanted would force councils to ensure that the local services we all rely on day to day are inclusive and accessible for disabled children and children with special educational needs. Our second amendment would enable parents to properly hold local authorities to account – to give them a voice ensuring the support they need is available in their local area.

Many MPs spoke passionately about the battles that parents face in getting support. They recognised the need to ensure that disabled children and their families are at the heart of decision-making when local authorities are developing services.

A once in a generation chance

The Children and Families Bill is a vital chance for the Government to address the struggles these families are facing. In the debate Graham Stuart MP rightly said that this is “a flagship bill” with the potential to change the lives of children with Special Educational Needs – just as the 1995 Disability Discrimination Act transformed support for millions of disabled people.

Conservative MP Robert Buckland spoke of the struggles that families face to get the support they need, largely due to the “assumption… that disabled children and young people…will not want to access mainstream services”. He also emphasised that there must be a complete “transformation” of local support for disabled children to make them more inclusive.

It was also particularly encouraging to hear the Chair of the Education Select Committee, Graham Stuart MP, pushing that he wanted the “power and role of parents enhanced by this legislation, not diminished”.

And the Children’s Minister Edward Timpson responded directly to our campaign.

He made a point of saying he understood how important local services are for disabled children and their families and mentioned our campaign specifically.

He hasn’t made a firm commitment yet, but said he’s hoping to ensure that the regulations accompanying the Bill include a duty – to ensure that councils promote services which are “responsive to the needs” of the local community, such as listening to children with Special Educational Needs and their families.

This could be a huge step forward but there is still a lot more to do.

Will they deliver on their promise?

The Government has made some welcome changes in the Bill, particularly support for children with the most complex needs. But for the nine out of 10 children with Special Educational Needs who do not qualify for a statement (or Education, Health and Care Plan under the new reforms), their future still remains uncertain.

And despite a small number of committed MPs working hard to improve the Bill in Parliament, wider interest from MPs has been disappointingly low – despite the importance of this issue.

The Government promised parents a transformation in the way support is provided for families with children with Special Educational Needs. But the reforms currently in the Bill are not good enough. The Bill will now be passed to the House of Lords. Parents deserve better local support and Scope will be doing all it can to ensure Peers in the House of Lords improve the Bill so it meets the high expectations families have.

Find out more about the Keep Us Close campaign.

Join our Campaigns Network to keep up to date.