Brighton welcomes our new support network for parents of disabled children

Guest post from Amanda Mortensen, Scope Face 2 Face Coordinator in Brighton & Hove.

On Wednesday we launched a new Face 2 Face parent support network for parents of disabled children in Brighton and Hove.

Group photo of befriends with a cake

Over 40 people attended the launch including many local parents who welcomed the service as a new source of support for families. The day celebrated the achievement of the 12-strong team of befrienders who have really bonded over the past two month’s intensive and innovative Face 2 Face training programme. Russell Evans, Area Manager, Scope South East, presented training certificates to the new team of befrienders.

Many professionals also attended including local authority leads for children’s disability services and Sue Shanks, lead councillor for children and young people in the city. Susan Brown, from the funders The People’s Health Trust also came along and said that the launch really brought the idea of Face 2 Face “to life”.

Diana Boyd, one of the new befrienders and mum to two sons with speech and language difficulties and epilepsy, said that she had really gained a lot from the intensive training programme and felt excited about being part of a team of befrienders offering such a special service to parents new to the process.

Fellow befriender Reza Ataie, dad of severely autistic twin girls added, “What a nice day! Such a big turn out and what a fantastic reunion.”  And befriender Sara Wilson, mum to a little girl with cerebral palsy added: “Fantastic launch, so proud to be a part of it.”

The launch was preceded by a free legal workshop from solicitors firm Pennington and barristers 7 Bedford Row. The legal team gave presentations on medical negligence and education.

The service is now open for referrals and the team will also be working on setting up bespoke parent-led groups over the coming months.

If you’d like more information please contact me by emailing or calling on 07436810608.

Six talking points from the Spending Review

Young disabled man outdoors with personal assistant

1. Do you want the good news or the bad news first?

Good news? Okay… the Chancellor has announced a £3.8 billion investment – including £2 billion of new money – in social care: the support disabled people get from their council to get up, get washed and dressed, and live independently.

The official document says, “This shared pot includes an additional £2 billion from the NHS and builds on the existing contribution of around £1 billion in 2014–15, with the aim of delivering better, more joined-up services to older and disabled people, to keep them out of hospital and to avoid long hospital stays”.

Here’s why this cash is welcome. The social care system is on its knees. Cash-strapped councils have been upping the bar for support eligibility, with 83% of councils now setting the threshold at a higher level. According to London School of Economics 69,000 disabled people have been pushed out of the system.

At the same time councils are squeezing the support for those that are in the system. A Scope survey found almost 40% of disabled people who continue to receive social care support are not having their basic needs met including eating properly, washing, dressing or being able to get out of the house.

Take away the preventative support and people fall into crisis. Have a listen to Angela Murray explain why social care is so important to her.

2. The ‘how’ is really important

Given that we now also know that councils are facing a further 10% cut in their budgets, a crucial piece of detail is how the cash gets to frontline social care. ADASS have said that previous injections of cash have instead disappeared into the black-hole of council budgets.

The documents talk about pooled budgets and NHS money being made available to councils through ‘local health and care systems’, which – in an exclusive for the HSJ – Jeremy Hunt explains will be achieved through Health & Wellbeing Boards. A cross-part panel of MPs and Peers recently argued that this would give it a better chance of reaching the people that need it. The official document explains that the Government is “putting £3.8 billion in a single pooled budget for health and social care services to work more closely together in local areas, based on a plan agreed between the NHS and local authorities”.

3. Britain Cares about social care

Today’s spending review announcement follows six months of campaigning. The innovative Stephen Fry-backed Britain Cares campaign, has seen over 25,000 people contact their MP about social care for disabled people – a thousand of who have sent personalised photos to show they care.

At the same time a young disabled woman from Luton – and former volunteer of the year – Angela launched a petition on which has received more than 45,000 signatures. She handed it in to 11 Downing Street on Monday.

4. But don’t celebrate just yet

The crucial question is now who gets care and who doesn’t. The announcement comes as the Care Bill is debated in the Lords over the coming week. The reforms seek to tackle the crisis in care by introducing a cap on costs, a new means-testing threshold and national eligibility to end the postcode lottery in care.

But under the current  plans – reiterated in the Spending Review – the Government will raise the bar for eligibility to social care to a level which London School of Economics (LSE) says will leave 105,000 disabled people with significant needs outside of the system altogether. They need that support to live independent lives. Without it, they are left isolated and in crisis.

5. And the really bad news…

The Government was briefing that there would be no further cuts on welfare. But that’s exactly what a cap on so-called Annually Managed Expenditure could mean. AME is Government spending which includes welfare and state pension bills. The Government is capping about half the budget. The Chancellor confirmed this will definitely include benefits for disabled people.

This means that regardless of how many disabled people need financial support, if the public finances take another nose dive, the Government could pull the plug on support for disabled people just when they really need it. This is ludicrous. Some disabled people will always need financial support. It doesn’t make them scroungers or skivers.

6. But let’s end on a positive note

The Chancellor committed to continue to spend £350m on employment support for disabled people. This mainly funds Access to Work and Work Choice. This support is especially important when you consider the growing consensus that the Work Programme (not linked to this funding) isn’t effectively supporting disabled people and ESA claimants. This will come to a head when the DWP publishes performance statistics for the Work Programme on Thurs June 27th.  It’s becoming ever more clear we need new solutions for getting disabled people into work.

With every Spending Review there’s is a lot to take in. But at a time when the Government is bringing in £11.5bn of cuts, an investment of £3bn into local support for disabled people is certainly good news.

The social care system is on its knees

Wednesday’s Spending Review provides the Government with an opportunity to start solving our care crisis. Scope’s chief executive Richard Hawkes asks on the New Statesman blog: what is the Chancellor going to do?

“Properly funded social care is now a ‘no brainer’.

By acting decisively the Chancellor can go a long way to solving the social care crisis, protect A&Es, and save cash across government departments. It’s a triple win.

But the Government will only be able to claim that it’s solved the social care crisis once it has decided who is in and who is out of the system.”

Read the full blog post

National Transplant Week

Guest post from Lauren Britton

Andrew and LaurenSix months ago my husband caught a virus which slowly destroyed his heart leaving him unable to lead a normal life.

The last six months have been extremely difficult for us to come to terms with his disability after being so fit. The Scope website was extremely helpful in offering advice on financial help and benefits, and support for myself as a career.

He now needs a lifesaving transplant.

Being an organ donor saves lives. Three people a day will die waiting for an organ.

National Transplant Week runs  from 8 – 14th July and the NHS have launched a campaign to encourage people to register for organ donation.

It’s also really important that people talk about their wishes with their family.  Research shows that without this conversation only 40% of families agree to the donation should they be in that situation, but with it 90% of families agree.

It is very easy to become a donor, and only takes a few minutes you can text DONATE to 62323, call 0300 123 2323 or go to the Transplant Week website for more information

To help the campaign I have made a film to raise awareness about organ donation.

Orchard Manor electric art exhibition

The young people (aged 18-26) at Orchard Manor Transition Service in Cambridgeshire will be exhibiting their UV art work from 4-14 July (Thursday to Sundays) in the Tavern Gallery, Meldreth.

Orchard Manor artists
Orchard Manor artists

This is a first for Orchard Manor and a real opportunity to let the community see some of the residents’ inspiring art work.

Art is used at Orchard Manor as a basis for skills development, providing an excellent tool for self-expression and choice-making. The young people have been involved in a variety of projects including set design (for films created in drama sessions), planning and creating a sculpture trail and making cards and bags for fundraising.

Over the last few months, the young people have been involved in UV art sessions. The studio has been fitted with Ultra-Violet lighting, which is especially beneficial for visually impaired people.

The artists are encouraged to experiment using UV paints. This includes people walking on, wheeling over, throwing objects at and pulling string along the surface of a large sheet of canvas placed on the floor.

The young people also looked at using different methods to create a painting and used large chunks of ice, which they rubbed salt into and made holes in before pouring paint over and leaving out in the sun. The finished pictures are beautiful marble-effect paintings like the one below.

UV artwork
UV artwork

Video of the week: Looking for a great charity running team?

Looking for a great charity running team for your 10k race, half marathon, marathon or Ultra?

If so, look no further than Scope because whatever your charity event, running for Team Scope means awesome team spirit and an amazing cause to support. But don’t take our word for it.

This new video features some of our runners from the last couple of years talking about why we’re the best at events like the London Marathon, Brighton Marathon, Royal Parks Half Marathon and Ultra.

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.

Being a volunteer

Guest post from Sam Best

I began volunteering just over 10 years ago when I was asked by a friend to become a Homestart volunteer. This is an organisation which provides support to mothers with young children. Having been a young mother with four children, I knew how much I would’ve liked such a service. I still volunteer for Homestart and support a family now.

Making time to volunteer for others is no hardship and when I was asked if I would like to take part in Scope’s Our Generation project I saw it as a great opportunity to support my local community.

The training was a weekly session with a small group of other volunteers, held over a few weeks. I really enjoyed the training; it was fun, informal and without a lot of academic jargon.

Volunteering – “a hugely rewarding experience”

I find volunteering a hugely rewarding experience. To know that a small effort on my part can make a big difference in someone else’s life is extremely satisfying.

Currently I am matched with a lady I visit once a week who has little local support from friends or family, and whose health is not very good. She always looks forward to my visits and welcomes me warmly. Sitting, talking and getting to know each other is enjoyable for both of us. Although it’s early days, I can already see the impact this support is making and I’m excited about getting her more involved with her local community.

I would recommend volunteering to anyone who has yet to experience it. It is a wonderful way to make a difference and there is definitely a ‘feel good’ factor in doing something for someone else.

Will comedy be the next Paralympics?

Guest post from comedian Francesca Martinez

Congratulations to Jack Carroll, the very talented young comedian in the final of Britain’s Got Talent 2013. The audience loved him and so did the judges – David Walliams described him as the next Peter Kay. Jack is funny and likeable. He also happens to have cerebral palsy. He ended his set with a quip about donating to the disability charity Scope – then gave himself £20 to cut out the middle man!

I bet Jack’s jokes have also helped a few people think differently about what it means to be disabled. Like me, Jack uses humour to challenge attitudes to disability, much in the way that Britain’s Paralympians did with their amazing achievements last summer. A year on from the games, it’s got me thinking: could comedy be 2013’s Paralympics?

As a child growing up wobbly (I prefer the term to ‘cerebral palsy’), I used humour to disarm bullies and to deflect people’s pity. I thought that if I was cheeky or funny, people would respect me. I loved saying the things everybody thought but nobody dared to say.

Fifteen years later, when I discovered comedy, it was a revelation. I’d found something which let me stand in front of people and challenge their prejudices and stereotypes. So if the audience feels sorry for me when I walk out on stage because I’m wobbly, I use humour to question why. By the time I walk off, I want them to see the person behind the wobbles.

A lot of my material questions the lazy thinking behind what’s seen as different and as normal. I think disability is normal – it has always existed. It’s not abnormal because it’s part of life. Of course it brings struggles, but many of those struggles come from society’s inability to deal with difference.

Comedy lets us tackle ‘difficult’ subjects in a light-hearted way. It lets you by-pass the discomfort that bubbles up when people worry too much about what to say. I try to turn people’s fears into jokes, because I find that people are more receptive if you make them laugh. And, do you know what? Disability can be funny! Some people think I’m talking about an issue, but I just talk about my life, which is what every comic does.

It’s a difficult time for everyone right now, including disabled people. Attitudes towards disabled people and the ‘vulnerable’ have worsened. We need the power of comedy now, more than ever. If I can say things that need saying and change attitudes for the better, it gives a deeper meaning to the job I love.

It’s wonderful to see Jack Carroll doing so well and I hope he has a great future ahead of him. The more that difference is represented in the media, the more people will accept it as a natural and invigorating part of life. But Jack and I are not the only ones using laughter to change the way people think: there’s a host of great disabled comedians out there. My friends at Scope, who work to remove barriers so that disabled people can lead full and productive lives, have collected some clips .

Volunteers Week: Layla’s story

I started working in Scope six years ago in the summer of 2007 and have never looked back. The reason I chose Scope is that I noticed my friend was working as an assistant manager in the store and I thought it would be fun to work with her.

After starting volunteering at the store I found that it had a good volunteer base who were all friendly and easy to work with.

NVQ in Retail

Through volunteering I have gained a lot of experience and an NVQ in Retail – I am now a key volunteer which will further me in my retail career.

As part of being a key volunteer for Scope I have run the shop on occasions and train new volunteers on the till and in other areas like steaming and tagging the clothes before they are put out on the shop floor.

With the 20% discount on all donated stock for volunteers as well as paid staff, you will often see me buying clothes and other items for both me, my family and friends.

Making customers happy

One of the things I love the most about being a volley for Scope is the customers and making them just that little bit happier for the day. For example, there was a young woman who spotted a pair of new rock boots in the window and after she had bought them she was so happy she skipped out of the shop.

In the future I would like to be the manager of a charity shop as I enjoy working in the charity shop environment and believe in helping others to help themselves.

I would encourage others of all ages to consider volunteering in Scope for the experience and qualifications you can gain and the friendly atmosphere you will always find in this environment.