Tag Archives: disabled children

Keep Us Close reaches Parliament

Guest post from Megan Cleaver who is the Parliamentary Officer at Scope.

The Children and Families Bill, which sets out the biggest changes to support for children with special educational needs (SEN), has reached a critical stage and is currently being debated by a committee of MPs in the House of Commons where they have the opportunity to put down amendments in order to improve the Bill.

Committee stage

In the Committee, MPs from both the Labour and Conservative Parties have supported a number of Scope’s key asks as part of our Keep Us Close campaignto improve the support available for families with disabled children and children with SEN and stop the battles they face in accessing this support.

The Shadow Minister for Children, Sharon Hodgson, herself a mother of a disabled child, spoke passionately about the challenges that families face and made explicit reference to Scope’s ‘Keep Us Close’ report detailing the lack support available to families in their local area. Sharon sought changes to the Bill which would ensure that positive family relationships and the participation of children and young people and their families in local community activities are actively promoted; and that services are located nearer to where families live. This would send a strong message to local authorities that improving the quality of life for families is, and should be, a priority and ensure that support for children with SEN is available in their local community.

While the Children’s Minister Edward Timpson praised Sharon for her ‘insightful and excellent analysis’ of the weaknesses of the current SEN system, unfortunately the Government did not accept this amendment.

In order to ensure parents get the support they need in their local area, Scope is also calling for systems to be put in place so that families are able to hold local authorities to account if they cannot get the support they need. This is supported by Conservative MPs Caroline Nokes and Robert Buckland who both spoke powerfully about the importance of this change given the battles families face to get even the most basic support- leading them to feel powerless and overwhelmed by the need to wrestle their way through seemingly endless bureaucratic hurdles.

The ‘Local Offer’

Scope’s amendment would ensure that if a ‘Local Offer’ (which sets out the support available in each area) is deemed not good enough; a local authority has a duty to revise it until it meets the needs of local families and young people.

This would create a situation where local authorities are working together with families, school governors, children’s centres, nurseries- all with the common aim of making support the best it can be.

So far the Government have been unwilling to introduce this mechanism to strengthen the hand of parents; we feel this is of such importance for parents with disabled children and children with SEN that we will continue to work with MPs so that much needed accountability is introduced into the system.

These are the biggest reforms to SEN provision in 30 years and Scope, with your help as part of our Keep Us Close campaign, we will keep on fighting to make them the best they can be and ensure that disabled children are given the support they deserve.

 

Children and Families Bill

Jane Raca, parent and author of Standing up for James, has written the following open letter to the Children’s Minister, Edward Timpson about the Children and Families bill. If you would like to find out more about the bill, and the SEN reforms it proposes, please visit: mencap.org.uk/campaigns

 
Mr Edward Timpson MP
Parliamentary Under Secretary of State for Children and Families
Sanctuary Buildings
20 Great Smith Street
Westminster
London 
SW1P 3BT
 
11 March 2013
 
Dear Mr Timpson
 
I am a lawyer and author with a 13 year old disabled son. James has cerebral palsy, epilepsy, learning disabilities, challenging behaviour, and is severely autistic.
 
I am writing to you because there is desperate suffering going on all over the UK, which the Children and Families Bill currently before Parliament fails to remedy, even though it was intended to help.
 
I refer to the plight of families with severely disabled children, who are caring for them 24 hours a day from birth. These children have extensive, specialist needs. They may wake for hours in the night and need supervision or postural change. My son smears his faeces around the bedroom and sometimes attacks the person trying to clean it up. My friend’s autistic child is regularly up at night endangering himself and others. On one occasion he flooded the house and on another he climbed onto the roof. 
 
There are parents trying to survive for years, raising these children on little sleep, with no breaks and no help. They are suffering from depression, exhaustion and marital breakdown. Some have killed themselves and their children because they cannot face another day. 
 
This is happening despite the fact that local authorities are under a statutory duty to support these families from birth. Councils are relying on the ignorance of parents about their entitlements, and the use of delaying tactics, to avoid the considerable expenditure which is needed.
 
What can a parent do, if their local authority refuses respite and home help, as initially happened to us? The only answer is to complain to the Local Government Ombudsman, who requires that you first exhaust the council’s internal complaints procedure. This all takes months, even years. The alternative is to apply to the High Court for Judicial Review of the council’s decision. Neither option is a realistic or acceptable solution.
 
If life for these families is to improve, they must be able to turn to a fast, independent forum for redress. Such a forum already exists in the Special Educational Needs and Disability Tribunal. That Tribunal hears appeals from parents about their children’s special educational needs. A parent can appear without legal representation and have a hearing within 4 months, in front of specialist independent judges. 
 
Why can’t that Tribunal also rule on social care and health provision for these very disabled children, whose complex needs are so often inseparable from each other?  
 
The Children and Families Bill misses a golden opportunity to remedy this injustice. It proposes that these children’s education, social care and health needs should be viewed together, and is introducing combined plans to replace the current education-only statements. However, the right to appeal to the Tribunal will not apply to the social care and health contents of the new plans, only the education provision. So parents will be left in the same situation as now. 
 
The Government’s Green Paper, which preceded the Bill, said, ‘This Green Paper is about …families – who have consistently called for better support for their children and themselves. Families of the most disabled children who are providing 24 hour care from birth… ’.
 
If the Government really mean this, then the Bill must be amended to allow a right of appeal to Tribunal in relation to all elements of the new combined plans. New statutory duties alone will not be enough, as local authorities (and health services) may still try to get around them. If parents with the most extremely disabled children can’t get proper care provision, then a situation which belongs in a Dickens novel, not 21st Century Britain, will remain unchanged.
 
Yours sincerely
 
Jane Raca

MPs speak out on the Children and Families Bill

This is one of those good times when I can tell you your voice is starting to get through to the politicians on something so important.

For the first time earlier this week, MPs debated the Children and Families Bill – what could be the biggest change to support for disabled children in 30 years. Their families are tearing their hair out because they can’t get the support they need in their local area, that’s why over the past few months we’ve been asking for your help as part of the Keep Us Close campaign.

And what you did is starting to work.

Two-thirds of MPs who spoke in the debate talked about disabled children. Nearly half of these raised the issue of local support, some mentioning our campaign specifically.  It’s brilliant and it gives us hope to see all these MPs speaking up for disabled children and their families.

So much of this progress is because of you and more than 20,000 others around the country who’ve spoken up: parents of disabled children, children themselves, friends and relatives, and so many others who care. Whoever you are, thanks so much for taking on this cause.

Our campaign isn’t over and we’ll need to keep pushing.  Sadly, although we have a number of MPs behind us, the Government isn’t doing enough yet. We’ll continue to work with MPs as the Children and Families Bill goes through Parliament and I might need to ask you to do more over the next few weeks or months.

For now, I thought you might like to hear a few highlights of what they said in Parliament – please see below.

Paul Maynard, MP for Blackpool North and Cleveleys, who has cerebral palsy:
“I know from my own life story how important it is to get this right. I was one of the children whose parents had to fight to get me into a special school, and then fight again to get me back into a mainstream school a few years later… When I was in the mainstream school, my parents had to fight to get the speech therapy I needed to make the most of being in that mainstream school.

It was with some distress and dismay that when I first got elected, I found that the first three cases of my very first constituency surgery were all about parents fighting for their children to get the special educational help they needed from their schools. Thirty years on, nothing much seemed to have changed.”

Angela Smith, MP for Penistone and Stockbridge:
“At the heart of the struggle faced by families with disabled children and those with Special Educational Needs is the unacceptable lack of support for these families close to home… This situation is getting worse, not better, with local authorities now facing cuts of up to 30% of their budgets.

Many councils are therefore being forced to cut services for disabled people, making an already bad situation worse. For example, more than half of councils have cut spending on respite breaks for families, and 77% of local authorities are either making cuts or efficiency savings in services for people with a learning disability.”

Sir Tony Baldry, MP for North Oxfordshire:
“As a Member of Parliament for three decades, I have too often met parents who have felt that they have had to battle for the support they need. They have been passed from pillar to post, and bureaucracy and frustration have faced them at every step.”

David Blunkett, MP for Sheffield Brightside and Hillsborough:
“Above all, the emphasis should be not just on education and skills but on skills for life that enable people to live independently on equal terms and to be self-reliant… we must ensure that the child’s needs are paramount.”

Peter Aldous, MP for Waveney:
“The Bill is to be welcomed, because while there are examples of good practice, the current system is not fit for purpose. I have been advised of examples where young, vulnerable people and their families have been let down; there are cases in which children have been excluded from activities, such as sports days and swimming, and in which schools have failed to provide support for a child until a medical diagnosis has been received, despite accepting that the child was struggling to access the curriculum.”

Sarah Champion, MP for Rotherham:
“The care system is often disjointed and baffling. Families routinely deal with more than 30 professionals from education, social care, health and other services. It was standard for families to tell me how frustrated they were that they had to say the same thing over and again to different professionals because the information was not shared between departments, let alone between other agencies.

Communication between agencies is generally inadequate, leaving families burdened with the stress of having to navigate their way through an uncoordinated system. All that happens at a time when many families are overwhelmed by their child’s situation. Unfortunately, that experience is common among families of all disabled children. As one constituent said: ‘Unless you shout and fight you don’t get anything. And, to be honest, I’d rather be spending that time with my child instead of battling the system that should be helping us.’

Michael Gove must stop ignoring families with disabled children – tweet #GoveUsABreak today!

On Monday, for the first time MPs are debating the Children and Families Bill – this is the biggest chance to improve support for disabled children in 30 years. For the 700,000 disabled children across the country, it could be a day full of anticipation.

But the reality for these children is that the Bill is bitterly disappointing. The proposed changes will make little difference to thousands of families, or ease the pressure on parents seeking support for their disabled children.

I spoke to Heidi last week, whose daughter has Down’s Syndrome. Like many parents, she feels let down by such a wasted opportunity. She said the Government don’t understand just how “time-intensive and emotionally draining” it is to be the parent of a disabled child.

“You feel like you’re continually battling to get services and support, just to try and get your child to be part of society.”

Heidi worries that her daughter is very socially isolated. Even the support she does get, like speech and language therapy, is under threat. Heidi has to fight to ensure her daughter keeps even this basic support. And shockingly, therapists are put under pressure by local councils to tell parents that their children don’t need their support.

We know Heidi is not alone. Every day, we speak to parents who tell us of an on-going battle and the constant feeling that their child’s needs are less important than council budgets.  Sharon, whose son has Asperger’s, feels the current system is “impossibly difficult”.

For Mums like Heidi and Sharon, and their children, we must make the Government see how important support for disabled children is.

Michael Gove MP is the Secretary of State for Education, it’s his responsibility and he can’t ignore families with disabled children any more – so let’s get his attention!

Join us and tweet using the hashtag #GoveUsABreak. Share a personal experience if you have one, or just say how you feel about families with disabled children being neglected, and encourage your friends to do the same.

Here are a couple of examples:

‘You win one battle, then onto the next. It’s never-ending.’ Disabled children’s families need Children&FamiliesBill to do more #GoveUsABreak

I’m stunned at how tough it can be for parents of disabled children. Why doesn’t the Children&Families Bill do more? #GoveUsABreak

We must tell Michael Gove to do something now for families with disabled children. Join us and together we can show the Government that they must give families with disabled children a break.

If you’re not already part of our Thunderclap action – please join now! On Monday we can make sure MPs know how valuable local support is for disabled children.

Keep Us Close Family Memories delivered to MPs in style

“What on earth are all these?!” As I piled up five large cardboard boxes filled with almost 300 memory boxes on the counter of the Westminster post room, the disgruntled security guard seemed quite confused. I could have given him the long answer: “This is a collection of over 700 fond family memories, shared by Scope supporters. They’ve written to us, to share memories of sunny holidays and close Christmases, because they believe in the importance of family time together. We have sorted these, and wrapped them beautifully in memory boxes. They want their MP to unwrap this box, read their memories, and remember how much family time together matters, before they go to make important decisions on the Children and Families Bill. Really, what’s in these boxes, is pretty amazing.”

In the end, I decided to just tell him they were simply ‘message to MPs’ – he appeared to be in a bit of a rush. He accepted this, and all the boxes, and now they are on their journey through the corridors of Westminster to land on MPs’ desks.

I really believe that when MPs open their memory boxes, after some curiosity, they’ll be pleasantly surprised. We have been quite touched by the small insights into the family lives of Scope supporters. It’s difficult to not feel that family really is central to many people’s lives after reading the collection of memories that have arrived. When MPs read about their constituents’ day trips to the zoo, their sandwiches on the beach, or their first Christmas with their grandchildren, I hope they too will be reminded that the closeness of family is something to treasure – and is so important for families with disabled children.

It’s now down to them to take this feeling, and turn it into action when the Children and Families Bill goes through the next stages in the coming weeks. For Scope campaigners, it’s good to know what we hope will act as the final reminder, is safely on the way.

Thank you to everyone who has contributed by sharing their family memory, your support has been overwhelming. We’ll keep you updated on the progress of the Children and Families Bill, and the Keep Us Close campaign.

Children and Families Bill debate

Scope has been inundated with support from across the country for our campaign for better local services for disabled children and their families.

Thousands upon thousands of emails, letters, postcards, wish stars and memories have been sent to MPs calling on them to take action as part of our Keep Us Close campaign. And they have a real opportunity to do so with theChildren and Families Bill, poised to enter Parliament in a matter of weeks.

However, the impact that this support is having inside Westminster is not always so easy to see.

On Wednesday this week, a debate is being held in Parliament specifically on why the Government must improve local services for disabled children and their families. Tabled by Angela Smith MP, this gives MPs who have a strong interest in supporting disabled children and their families a chance to quiz the Government on their proposals – and tell them why they must be strengthened.

Local services for disabled children

Scope has been calling on the Government to improve inclusive and accessible local services for disabled children and their families by strengthening something called the ‘local offer’ which is contained in the Government’s proposals.

Currently, the ‘local offer’ is too weak to really make a difference. We want to see a ‘local offer’ that gives parents with disabled children a clear promise of the support that they can expect to receive locally – and the right to hold their local authority to account so that they receive this support.

The families we speak to have to battle too hard, too often, to get this support – and when they do, they have to travel far too far away to get it. That’s just not right.

Children and Families Bill debate

The debate is being held in the ornate Westminster Hall, and will be one of the final chances that MPs have to ask the Government Minister, Edward Timpson MP, what he is doing in the Bill to improve local services for disabled children and their families. The Bill is due to enter Parliament imminently at the start of its passage to become law, and we know that MPs from all across the House of Commons – and from all political parties – feel very strongly that the Government must get the reforms right.

But main reason they feel strongly that this must not be a wasted opportunity is because they know how important an issue this is for their constituents – the people they represent. For months now, their postbags and inboxes have been filled with Scope supporters telling them they can’t let this opportunity pass.

Alongside the support of all our campaigners, we are working with MPs to turn up the pressure on the Government to make sure they get the reforms right, and Wednesday afternoon gives them a real chance to do so.

You can watch the debate at 4.30pm on Wednesday 20 January.

Your Christmas Wish Stars tell MPs to keep families close

It was around 9 in the evening. A group of us were gathered late, sorting through the hundreds and hundreds of Christmas Wish Stars we’d received — more than 1,300 in all. And that was when I saw this message written on one star:

“I was a disabled child and felt abandoned and I’ve only recently got over that 30 years later.”

I read it out to the rest of our Scope team who were there, and for a minute we all stopped what we were doing. It was an incredible reminder of why our Keep Us Close campaign is so important, to get better local support for disabled children and their families. Here’s another that’s really powerful (and crazy to hear!):

“We are having to consider moving 400 metres into another council boundary to receive the help we can’t find in our council area. How can this be right?”

Last Monday we were so pleased to be able to take your messages into Parliament on International Disabled People’s Day. We wanted to bring them straight to MPs who will be deciding on the Children and Families Bill that could change the future of services for disabled children.

We’ve had good news recently as the Children and Families Minister, Edward Timpson, has made an important new promise: families will have more say in the support they get and councils will have to listen when they decide which local services they provide for disabled children.

This is a great step in the right direction. But listening isn’t enough of course. What hundreds of thousands of families really need is a guarantee that councils will actually provide the support they need in their local area. It’s a vital missing piece and we believe we can get it. Now we need to keep the pressure on.

Our Christmas reception in Speaker’s House in Parliament was a brilliant way to bring your voices from all over the country to the politicians – and we got to put them on a giant 20-foot Christmas tree! We were hosted by the Speaker of the House of Commons, John Bercow MP, and joined by comedian and actress Sally Phillips. Families came from all over the country to meet MPs and talk to them firsthand.

Check out our short film to find out why the MPs featured are supporting Keep Us Close and if you haven’t yet emailed your MP please contact them here orsend your own Christmas Wish Star. We are now posting on every single one of the stars we’ve received to tell MPs they must help keep families close by providing better support.

Sign up for our Campaigns Network and we’ll let you know what happens next!

Scope shop customers call on MPs to Keep Us Close

As I write this I am surrounded by postcards, piles of envelopes and spreadsheets with long list of numbers, the aftermath of a busy three weeks of campaigning in our shops.

The numbers on the spreadsheets are unexpectedly exciting, telling me that over 15,000 petition postcards have already been sent to MPs, asking them to guarantee better local services for disabled children and their families. The postcards come from Scope customers, who have been hearing all about the Keep Us Close campaign from the hardworking staff and volunteers in our shops.

The Keep Us Close campaign aims to get better local services for disabled children and their families. Families have been telling us about the huge amounts of pressure they’re under. Disabled children often need extra support, in addition to education and health care. But parents are struggling to find the services they need for their disabled child, such as speech therapy or suitable playgroups. Even if families can find good support, it will often be miles from home. Frequent travelling to appointments and often having to fight hard to get the appropriate support is putting pressure on parents.

Children and Families Bill

We hope that if we can show MPs how much support there is for the campaign, they can use the upcoming Children and Families Bill to make life easier for families. And Scope’s customers have certainly proved that the campaign has a lot of support, and have got Keep Us Close off to a flying start!

Spending a day with the wonderful staff at the Scope shop in Nantwich confirmed the rumours; Scope shop staff are very skilled campaigners. Few customers left the shop without signing a petition postcard, and were pleased to find out more. And while Marian, who has been volunteering for Scope for years, worked hard to persuade them of the value of their signature, I did my best to persuade customers how photogenic they were. (Which was actually more difficult!)

For those who could be persuaded, their photos will go alongside messages of support for the campaign in an album, that will be handed into Edward Timpson, the Minister responsible for the Bill, who is also the local MP for Nantwich.

Jo and Marian told me why they were so keen to support the campaign:

MPs’ visits to Scope shops

In the past three weeks, many shops have actually hosted a meeting with their MP. The staff in Alton, Beckenham, Bromley, St Albans and Wimbledon did a fantastic job of telling their local MP how their customers supported the campaign, over a cup of tea. Many shops also gained some local media coverage, promoting the campaign even further.

The Eccles shop took the cup of tea to a whole new level when they put on an entire tea party, complete with eccles cakes of course, for the Shadow Education Minister Sharon Hodgson, Scope supporter Sarah Kiley, who has a disabled son and was keen to share her experiences, and Richard Hawkes. The day proved to be a great success, and gave Sarah the chance to talk about the difficulties she has faced as the mother of a disabled child.

She explained that ‘the frustration comes from the possibility of services being made easier. The facilities are already there, such as local children’s centres. Specialist facilities, such as hydro pools, are there, but are out of my reach.’

The hard work and enthusiasm from Scope shops over the past three weeks is a crucial step along the journey to making sure that mothers like Sarah no longer have to deal with such frustrations.

You can support the campaign by emailing your MP today.

Keep Us Close campaign update

After almost a month, our Keep Us Close families campaign is continuing to go from strength to strength. Scope supporters have been busy emailing their MPs, calling on them to ensure that disabled children and their families have better local support.

Hundreds of emails have been sent, adding to the thousands of campaign postcards and petitions that have been sent from our shops in England and Wales. Our customers have been so keen to support the campaign that many shops ran out of campaign postcards!

Six MPs have visited their local Scope shops to collect the postcards and hear about the importance of the campaign. The Labour Shadow Minister for Children and Families has supported Keep Us Close, as well as other organisations, including Save the Children and the Family and Parenting Institute.

Online, our new Keep Us Close animation is still very popular, and the campaign has been a hot topic on our Facebook and Twitter pages.

The campaigns team is busy planning the next stage of the campaign, so look out for how you can get involved next month.

In the meantime, please don’t forget to email your MP, and tell all your friends about this essential campaign for disabled children and their families.

Why go to party conferences?

As a new political year gets underway, another season of party conferences comes to an end. The effects of three consecutive weekends away from home and the combination of too many late nights, meetings and caffeine begin to take their toll. But why do charities go to conferences in the first place? And why a charity CEO?

There’s a whole host of reasons for people to attend conferences. Some may want to use it as an opportunity to stake their claim for party leadership, or to apologise, others may choose not to go for fear of becoming a distraction from the key issues at play.

For me, party conferences have a real buzz around them and as a neutral observer, I find it fascinating to watch them unfold; from the excited new party intake soaking up their first conference, to the name-dropping competition amongst old hats and especially the collective swivel of heads as a high-profile minister casually wanders by.

But it’s not just as a casual observer that Scope attends these conferences. These are extremely difficult times for disabled people and their families. They are being hit by a double whammy of seeing their financial support and local services falling away at the same time as the cost of living spirals out of control. And if we want to realise true social change on these issues, we need to be influencing decision makers.

That’s why my colleagues have the season blocked out in my diary as soon as the dates are announced and they are right to do so. The opportunity of new introductions, spontaneous discussions and chance encounters make it a crucial part of my annual calendar, so that I no longer need convincing that it’s worth the time away from the office (and home).

Conferences present a unique opportunity for us to talk to a whole host of influential people, from MPs and Councillors, to journalists and bloggers, to hear their views about what’s important to them but equally to tell them about the crucial changes taking place now that are affecting disabled people and their families.

They provide us with a unique opportunity to test and refine our arguments from all angles and learn what resonates with different audiences. What makes them lean forward, and what sends them resting back in their chairs with their arms crossed? Who are our allies on the issues we feel are important? Who will oppose us and why?

It’s the type of intelligence that you can only obtain when you have numerous conversations, with countless different individuals with different beliefs, backgrounds and interests about the same issue in a short space of time.

Keep us close – our focus this year

This year our approach tied in with the launch of Keep us close, our new campaign about getting better local support for disabled people and their families.

This is a huge issue for families with disabled children. Currently we know many families have to fight long and complicated battles just to find an appropriate school or therapy for their disabled child and in many cases, the support can often only be found far away from their home; this has a huge impact on family life.

Crucially, there is currently a piece of legislation beginning its passage through parliament with the intent to overhaul the support families with disabled children or special educational needs (SEN) receive. Yet despite this being the window to make real changes to this bill that would enable families to be better supported, it’s not really at the top of the political agenda.

From our perspective, it needs to be higher up the agenda. It has the opportunity to make an enormous difference to families’ lives and for us there is quite a simple solution that politicians of all colours can get behind.

And so our conference journey starts and ends with conversations about families; with myself and my colleagues grabbing every available opportunity to talk to existing and new contacts, at all levels, about the problems that families with disabled children face and why it’s so critical that we seize this opportunity to make a genuine difference.

We gather intelligence along the way that allows us to ensure we are ready and can take advantage of every opportunity available to us to make a real and genuine difference to the lives of thousands of families with disabled children.

The power of a charity shop

And finally, my most memorable moment during this year’s conference season ironically wasn’t even in the conference but five miles down the road from the Labour conference.

It was the two hours I took out of a packed conference agenda to take Sharon Hodgson, MP and Shadow Minister for Children and Families, to the local Scope charity shop in Eccles so she could meet the mother of a young disabled boy and hear about her everyday experiences and the real challenges her family face getting the right support they need locally.

It was about taking time out to talk to our shop volunteers who between them talk to six million customers every year about the issues we want them to get behind and how they play a crucial role in helping us spread the word.

And ultimately it’s about recognising that real social change can equally take place in a charity shop as it can from the platform of a conference hall.

Join our campaign and help get better local support for families with disabled children.