Tag Archives: support

“Just because Barry’s got a set of wheels doesn’t mean his ears don’t work!” – #100days100stories

55-year-old Barry got a new lease on life when, with Scope’s support, he moved into his own home. Scope’s Stories Officer Nick Duquemin met Barry and his Support Worker, Judy, at Barry’s home in Hereford.

Here, as part of Scope’s 100 days, 100 stories campaign, Judy and Barry discuss life, changing attitudes and Barry’s beloved Hereford United FC. Barry has cerebral palsy and has complex mobility, learning and communication difficulties. 

Barry and Support Worker Judy smiling in his home
Barry and Support Worker Judy smiling in his home

Judy: Barry will have lived here 15 years this year. I’ve worked for Scope for 16 years – it’ll be 17 years this year. I was a support worker when Barry moved to Hereford. I wasn’t on Barry’s team, but I have known you since you moved to Hereford.

Barry: In 1999.

Judy: Barry has his own tenancy now. It’s a housing association property, so even if we stopped supporting him – even if Scope stopped existing – Barry would still have a home. He would just need to find another care provider.

He’s got security because he’s got a roof over his head, which he wouldn’t have if he were in registered care.

Barry: It [Grangewood] was a big place. Too big. This is smaller. Day-to-day activities.

Barry: Going to the Courtyard.

Judy: You like to go to the Courtyard [a theatre / café nearby], which is really handy for where you live. What do you do on a Saturday, when they’re playing at home?

Barry: Football.

Judy: Hereford United football ground is literally just across the road. Barry likes to go and watch the football, even though they’re not doing very well.

Barry: Yes.

Judy: You’ve got a t-shirt and a scarf – you’re a proper Hereford United supporter. You go to every home game.

Barry: [Unless] I’m on holiday.

Judy: Yes, you missed one because you were on holiday.

Barry: [My holiday was to] Southampton.

Judy: You use Revitalise holiday company. They provide supported holidays, so Barry doesn’t have to take staff with him; he gets supported there. So it’s a true holiday then – he gets to have a break from us and his housemates.

It’s really a holiday if you’re away from everybody. What else do you like to do? You love music. You go to a music workshop. Where did you go this morning?

Barry: Yam Jams [a music/rapping group for disabled people].

Judy: Barry goes to two music groups every week. You go to Yam Jams on a Tuesday and a music workshop on a Wednesday. You do get involved in lots of different things – you do different things with Echo [an organisation which runs activities for disabled people].

You’ve been swimming recently with the learning disability team – the learning disability team [at Hereford Council] have a physio and on a Thursday they organise activities to help with posture. You do trampolining as well with them, don’t you? Rebound therapy, they call it.

Barry: Yes.

Judy: It’s whatever takes your fancy really, isn’t it? Barry’s not really one for set routines, so it is whatever just takes your fancy at the time. You go and see shows at the Courtyard if there’s something on you like. Sometimes it’s just going out for coffee. There’s a lot of flexibility.

Barry

Flexibility

Judy: If there’s something you want to see at the Courtyard, you just ring me up or get the staff to ring me up and say, “I want to go and see this on this day”. When I’m writing the rota I can move the one-to-one staffing around to accommodate that.

So it’s Barry who’s in charge – Barry says when he wants the time, which is something he wouldn’t have had when it was residential care.

Changing attitudes

Judy: I think people are more aware and more accepting – they see you every day, don’t they Baz? And I think that’s definitely got to help the general public’s awareness. Seeing individuals rather than seeing people en masse on their weekly trip into town – a convoy of wheelchairs going down the street.

Whereas Barry can go into town whenever he wants to. It’s just him and his support worker and there’s no fuss.

I think it’s a lack of understanding. Sometimes people just don’t know how to cope – they see somebody in a wheelchair and they don’t know how to talk to that person.

I’ve said this often – just because Barry’s got a set of wheels doesn’t mean his ears don’t work, but people suddenly talk louder and slower. That’s better when people get to know you, but you still see it sometimes.

It’s frustrating if I’m out with Barry and someone talks to me rather than asking Barry. “What does he want to drink?” I don’t know, ask him!

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

Scope’s 2014 highlights

2014 has been a really exciting year for Scope – full of awkward, nostalgic, sexy and some just Breaking Bad moments. We’ve rounded up a selection of just a few of the most memorable. Let’s hope 2015 is just as eventful!

Name change

We celebrated 20 years since we changed our name
from The Spastics Society to Scope, with a Parliamentary reception. We also looked at how life has changed for disabled people in that time.

The extra costs of disability

The Price is Wrong game show bannerCan an adapted BMX for a disabled child really cost four times the amount of the average child’s bike? Well yes, it can – and that kind of shocking fact is why you all got so involved with our Price is Wrong campaign and 550 challenge, to raise awareness of the extra costs that disabled people and their families face for everyday items.

Top films

Man bending over to talk to a wheelchair userOur End the Awkward adverts featuring Alex Brooker got almost 10 million views! They helped us to raise awareness of the fact that 2/3 people feel awkward when talking to a disabled person, mostly because they don’t want to offend or are scared of coming across as patronising. But we can all get over it!

Disabled model taking off his clothes in Scope charity shopThis year, our Strip for Scope film shocked everyone with a cheeky play on the sexy Levi’s Launderette advert, featuring disabled model, Jack Eyers. It was our most successful stock campaign –  we received over 1.2 million donated items to our shops.

We also created a film featuring disabled people talking about what the social model of disability means to them, the confidence and liberation it gives them – and how it can encourage everyone to think differently about what an inclusive society really looks like.

Face 2 Face befrienders

Two parents talking in a kitchen over a cup of teaWe were delighted to open new Face 2 Face befriending services in Oxford, Coventry, Lewisham, and three London locations – Islington, Waltham Forest and Redbridge, and Newham and Tower Hamlets. It means loads more parents with disabled children can get the vital emotional support they need, so they don’t feel like they have to cope alone.

Support and information

Our helpline staff have expanded on their lead roles in specialist areas, so they can give more thorough advice to people who need it, and share their knowledge within the team. The areas cover cerebral palsy, social care, welfare benefits, finance and housing, disability equipment and provision, early years, employment, and special educational needs. We also launched a new online community to reach even more people.

Get on your bike

Not only did over 4,000 people take up an events challenge for Scope this year, but we were thrilled to find out that we’ll be the official charity partner of the Prudential RideLondon–Surrey 100 for 2015. It’s worth a whopping £315,000 to Scope and means we have over 600 places for Scope participants.

New friendsRJ Mitte posing for a photo with a young disabled girl in wheelchair

And last but not least, we were very chuffed to welcome RJ Mitte, aka Walt Junior from the hit US drama Breaking Bad to Scope. He has cerebral palsy, but he’s never let it hold him back. He spoke to some young disabled people who are currently on our employment course, First Impressions, First Experiences, to tell them how he started his career.

What have we missed? If you’re part of Scope – what have been the highlights of your year?

‘I was so stressed about my son’s autism that my hair fell out’

Heather was struggling to find the support she needed for her son Nicholas and was under a huge amount of stress, then she posted a message online asking other parents for help, and a woman called Jane got in touch.

New research from Scope just found that two-thirds of parents have had difficulty getting the support and services they need for their disabled children, and as a result are left feeling frustrated, stressed and exhausted.

Like many other parents with disabled children – this comes as no surprise to me whatsoever!

Heather and Nicholas
Heather and Nicholas

My 13-year-old son Nicholas has severe autism and learning disabilities and I’ve had endless issues getting the support I need for him. We’ve had to fight every single step of the way.

We even had to fight to get him a diagnosis in the first place – neither of the local hospitals wanted to take him on! Presumably because of the cost implications…we got passed from pillar to post and had to get our MP involved in the end.

But one of the worst times for us as a family was when Nicholas was placed in a school that wasn’t right for him.

It wasn’t the right environment for him at all. It got to the stage where he was doing nothing but lying on the floor each day and lashing out because he was so frightened. It was so upsetting.

We kept saying: this isn’t good enough! Over and over again. But nobody would listen.

I was so stressed about it all that I lost a lot of weight and got alopecia and my hair fell out. I saw my GP and he suggested anti-depressants but I didn’t want to take them.

In the end the school wanted to expel him because they couldn’t cope – but they still couldn’t find a school for him. So I got him signed off sick and took him out of school altogether.

In desperation I put a post on an online forum asking for advice from other parents of disabled children about finding the right school for Nicholas.

By chance a woman called Jane who lives in my area got in touch. She described her own son and it was like she was describing Nicholas.

She let me know that her son had just got a place in a brilliant school nearby, a school which I’d never even heard of.

Jane was amazing and helped me through how to get Nicholas a place there – it was a battle but we did it.

It is a school specifically for children with autism and it’s brilliant, he loves it. The change in him as been incredible.

If I’d never posted that message I would have never met Jane – and we’re still in touch now.

Scope has launched a new online community where parents of disabled children and disabled people can share their experiences and get guidance and practical tips from other parents and disabled people.

I’ve agreed to be one of the ‘online champions’ for the site and hope to be able to help people out when I can, like Jane helped me.

But I don’t have all the answers – and I expect I’ll be looking for more advice myself too at some point.

Chatting online to other parents certainly isn’t going to solve all your problems.

But at the very least it can be a huge relief to vent, and have some contact with other people who understand what you’re going through, instead of bottling things up.

Please do get involved in Scope’s online community. Because as well as asking for advice and tips you might be able to give it too.

And I know from experience that as well as getting support, it can be really rewarding to be able to say to someone who is struggling – I’ve been in that situation, I’ve dealt with that, and I’ve come out the other end.

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

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

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

IMG_0010_NEW

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

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

The Special Parent’s Handbook

The Special Parent's Handbook

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

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

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

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

The response so far

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

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

Find out more about the book:

A million futures: halving the disability employment gap

Today we published a new report exploring disabled people’s working lives. The report – ‘A million futures’ – shows that last year alone, 220,000 more disabled people fell out of work than found a new job.

We wanted to explore why disabled people are struggling to stay in jobs.

Our new research with hundreds of disabled people found that a lack of flexibility in the workplace is a critical issue.

“I, like thousands of others, fall into the grey area of too disabled to hold down a job without health implications, yet not disabled enough to get help from the Government.” – Sarah, Isle of Wight

Nearly half (48%) of the 700 respondents to a Scope survey said that flexible working time and practices could have helped them stay in work.

Many disabled people told us that a key benefit of flexible working is that it can allow them to manage changes in their lives related to disability, or to manage a fluctuating condition, or recover from treatment.

Yet our survey found that only one in three had been offered the flexibility they needed.

“If I’d been given the opportunity, I could have sat down with them and said ‘look, this is what I’m capable of doing, this is what would help me get back into the workplace” – Jane, West Midlands

As a result, too many disabled people and their families find themselves relying on taking sick leave to manage this need for flexibility – often against their wishes.

Over half (60%) of those on long-term sick leave are disabled people. Once in sick leave, it can be very difficult to return to work.

Providing better support for disabled people must be a priority for Government and employers – and can bring benefits for everyone.

For those disabled people who are able to continue working, it means they can continue working, contributing, and taking home a pay packet.

Employers are able to keep hold of the knowledge, experience and contacts that often experienced disabled people can bring.

Crucially, better in-work support can bring benefits to the Government, by rebalancing spending on expensive programmes back to supporting those in work.

For more details, see the full report.

Find out more about our previous reports:

Undiagnosed Children’s Day 2014

SWAN UK (syndromes without a name) estimate that 6,000 children with undiagnosed genetic conditions are born every year. Today’s Undiagnosed Children’s Day has a mystery theme to highlight the fact that many undiagnosed children are medical mysteries. They’ve also created this fun video for the day:

Last month, Lauren Roberts from SWAN UK wrote a blog for us about the practical reasons why a diagnosis can be so important – Why do you want to label your child? We had a big response online to the blog, with many people agreeing with Lauren that without a diagnosis getting the right support is incredibly hard:

“If you don’t get a diagnosis your children don’t get the help they desperately need or deserve from the medical profession.” – Pam

“My daughter is a SWAN and hardly gets any help what so ever, anything that could actually help her that costs money she’s not considered for using her non diagnosis as a ‘one day she might’.” – Kathleen

“From experience I know this is extremely difficult and no offers were made before diagnosis, only after.” – Andrea

Read more of the responses on Facebook.

SWAN UK bring families together through an online community and family fun days.

Emotional support from Face 2 Face: Danielle’s story

“It’s hard when you’re on your own, and I felt like it was always going to be just me.”  Danielle

When I speak to parents of disabled children, there’s one theme that comes up again and again – so much of the time, there’s no one to talk to when things are tough.Danielle

Not long ago I met Danielle, who spent years struggling with her six-year-old son Aaron’s challenging behaviour. He was eventually diagnosed with autism, but for a long time nobody could tell her what was wrong.

“I can’t even emphasise how dark it was,” says Danielle.

“I’d go to work and I’d cry, I’d come home and I’d cry, I’d go to bed and I wouldn’t sleep for crying.

“I didn’t want to be here anymore. As awful as it sounds, if it wasn’t for Aaron I wouldn’t be here. I just kept saying to myself: he’s got nobody else.

“It was just an absolutely atrocious time. I wasn’t even leaving the house – I’d take Aaron to school, go to work, come home and we would stay in every night.”

Things changed for Danielle when she got involved in Scope’s Face 2 Face scheme, which matches parents with a trained befriender who has a disabled child, or children, of their own

Danielle’s befriender, Julie, offered unconditional emotional support – and a chance to talk, without fear of judgement, to someone who had been there already.

“It was having somebody for mDanielle and Aarone. When Julie comes round, she doesn’t turn round and say, ‘How’s Aaron doing?’ She says, ‘How are you doing, what’s going on with you?’ I think sometimes you need that,” Danielle says.

Julia, a Face 2 Face Coordinator, says some parents don’t always realise they might need emotional support.

“They’re doing all right, ‘why do they need it?’ It’s seen as a weakness: ‘I’m fine, I can manage’”, she says.

Julia’s 18-year-old daughter is disabled, and she was supported by the scheme herself before becoming a befriender and later, a co-ordinator.

“It (Face 2 Face) really supported me, having that place to go where I could talk about how painful things were, things I couldn’t say to anybody close to me, and that my friends couldn’t possibly understand. I’m mindful of that when I meet familiesDanielle and Aaron now,” Julia says.

For Danielle, it was the practical as well as emotional support from her befriender which made a difference. From her own experience as a parent, Julie suggested places Danielle and Aaron could go, and services on offer.

“Aaron and I go places now – we’ll go to farms, we’ll go to play centres and things like that, which I would’ve never have done before”, says Danielle.

“I never left the house, I was stuck with Aaron 24 / 7. Now I have a social life, Aaron’s got friends – I’m just a different person.”

What do people want from an online community?

Back in October we announced that Netbuddy was joining Scope. We’ve spent the last few months talking to members of the Netbuddy and Scope communities about what they’d like to see on the new joint community. We’ve done this through an online survey, emails, phone calls, Skype and face to face interviews.

Here are the common things people told us they wanted from the online community:

Shared experiences

Two women talking over coffeePeople spoke about the desire to connect with people in a similar situation, in a variety of different and changing ways. Some people came to the sites looking for emotional support, for others it was about getting practical advice – but the common need was to find people “like them”. We want the new community to help people make these connections.

The ability to help others

It’s not all about receiving support – people also had a strong and genuine desire to help others through their contributions online. We want to make it easy for people to ask for and give help by letting people discover areas of expertise, find people who need support and enable people to acknowledge when content has been useful.

Immediacy and timeliness

Neon sign which says - open 24 hours
(photo by Leo Reynolds)

With sites like Twitter and Facebook, immediacy has become the norm.

The people we spoke to expected immediate responses when they posted online so an online community can’t just run 9am – 5pm, only on weekdays! People expect their posts to be sent out immediately and be notified if anyone responds straight away. We will need to make sure people can access advice from the community whatever the time or the day.

Ownership

People felt strongly about the need to belong to the community. This might mean that staff will occasionally need to take a step back, and give people in the community more control over how it’s run and how it develops. Doing this research and involving people from the community in the process is the first way we’re doing this, and we will involve the community in anyway we can as we progress.

Users of the Netbuddy site told us how much they valued the site champions and experts, so we hope to continue these roles and grow the number of champions supporting people to use the community.

A safe and trusted space

(photo by rightee)
(photo by rightee)

Whilst people wanted ownership and immediacy, they also wanted to be able to use the community to suit their personal situation. This might mean discussing sensitive personal issues, not suitable for sites like Facebook, without fear of abuse or prejudice.

We’ll work closely with the community, champions, experts, and staff to make the community as safe, welcoming and friendly as possible.

Thank you

Thank you to everyone who has taken part in the research so far. We’ve learnt so much over the last few months and we will continue going through all the feedback as we build the new community.

We’ll be posting more updates here on the blog and we’ll share any opportunities to get involved. Our focus for the coming months will be on building and moving across the forums from Scope and Netbuddy onto the new Scope community. If you are part of the community – we will be in touch. Later in the year we plan to start moving the tips and events content into the new community.

Thanks also to Sam Menter and Ant Mace for conducting the research with us and providing their fantastic insight and expertise.

If you have any questions, please comment below or you can contact me by emailing community@scope.org.uk.