Tag Archives: Children and Families Bill

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.

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…


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.

Exmouth cropped photo

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.


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.

all_soap (350x263)

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.

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
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

Will new health duty benefit all families with disabled children?

Edward Timpson, the Children and Families Minister, has announced that he will strengthen the special educational needs (SEN) provisions in the Children and Families Bill by placing an additional duty on the new clinical commissioning groups (CCGs). This will force them to guarantee health care services agreed as part of the new Education, Health and Care Plans (EHC Plan).

So does this mean that parents will no longer need to battle to get the health support their child needs?

Not exactly – although it is certainly a big step towards removing some of the battles that parents tell us they face in getting the right support for their child. It should mean that any child or young person who has an EHC Plan will be guaranteed access to health services such as speech and language therapy if it will help with their education and it is included in their Plan.

But, as is always the case, it is the detail that is important. We have yet to see exactly how this new duty will be included, but as this part of the Children and Families Bill remains education focused, the duty will only be enforceable if health care is needed to support learning. So the battles over deciding such things as whether help to eat lunch, or occupational health to improve posture are health or educational needs will remain.

Currently 87% of children with SEN do not have a Statement. They are unlikely to be eligible for the new EHC Plans. A quarter of disabled children have health or social care needs but do not have special educational needs. They will not be eligible for an EHC Plan either. So how will the duty on CCGs help this group – which contains the vast majority of children, young people and their families, all of whom will be reliant on universal services for support?

Parents have told us that they battle to get specialist services, or a Statement for their child because local provision such as childcare, leisure facilities or schools do not meet their needs.Or because it is the only way they can access health care such as physiotherapy. Neither the new duty on CCGs, or any of the existing ones in the Bill will change that – the Local Offer is simply a directory of services that a local authority ‘expects to be available’ in the local area. It is the equivalent of a SEN Yellow Pages. It will not guarantee help for families.

In other words, the battles that most parents face now will remain, even with the additional duty on health.

Scope is working hard to improve the Local Offer through our Keep Us Close campaign. We want all disabled children, young people and their families to benefit from the Children and Families Bill. We are asking the government to ensure that local authorities promote provision of inclusive and accessible universal services that all families can use. We are also fighting for enforceable duties on local agencies to improve the Local Offer where it is just not good enough and where families still battle to get the support they need.

Visit our Keep Us Close campaign to learn more.

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.’