Category Archives: Campaigns

Funding the care system

The social care system is in crisis.

The Government’s response – the Care Bill – is being scrutinised in the Lords. It seeks 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.

The benefits of taking action are almost self-evident – imagine not being able to get up, get dressed and get out of the house.

But getting a system that works costs cold, hard cash and in an age of austerity that’s in short supply.

In recent years hard-up councils have tightened their criteria, meaning that disabled people might need more frequent hospitalisation, be unable to continue living in their own home, more likely to experience depression and fall into debt or lead a less healthy lifestyle.

Does that mean we will be stuck with a persistently underfunded system with an ever-tightening rationing of resources? Not necessarily.

Cash on the table

As reported in the Financial Times, five leading disability charities have revealed that the economic benefits from government investment in social care for disabled people are substantial. We can break the downward spiral.

Through advice and support for everyday activities from budgeting, and communication to help in the home the study found we all benefit from preventing disabled people’s care needs increasing and relying on more costly public services.

Earlier this year, the five charities lifted the lid on the scale of the crisis revealing that care for disabled people was underfunded by £1.2 billion. The case for plugging that gap just became even stronger.

Money talks

The debate on how we fund social care has – ahead of the government spending review on June 26 – is a hot topic.

Government plans are backed up by a recent announcement about greater integration between health and social care. The proposals include making joined-up and co-ordinated health and care the norm by 2018 and agreeing a definition of what people say good integrated care and support looks and feels like.

Shadow education secretary Andy Burnham waded in over the weekend when he said, “Labour would invest £1.2bn over the next two years to ease the crisis in social care – tackling a root cause of the pressure on A&E.”

With pressure on A&E’s hitting the headlines, Clare Gerada, chairwoman of the Royal College of GPs said: “And the elephant in the room, we don’t have enough social care beds and social care facilities so patients can be looked after in more appropriate places.”

A recent inquiry comprising a cross-party panel of MPs and Peers, led by Baroness Campbell, a well-known disabled peer, and Heather Wheeler, an influential Tory MP, called on the Government to use NHS cash to help fund social care to fix a system that is devastating lives.

The case for a properly funded social care is gathering momentum.

A Care Bill that does not go hand in hand with extra funding is at risk of failing the millions of people who rely on care in their day-to-day lives. The economic case for action is now as compelling as the human one.

Scope supporters and shoppers show Britain cares

As the numbers of views of the Britain Cares campaign film fly past the 100,000 mark, the photo actions grow each day and the I Care actions get ever more creative, you may wonder if the Britain Cares team could sit back and take a breather. Not for a minute! And now more than 26,000 people have taken part in the campaign.

At this crucial time to influence the Government to ensure that disabled people get the social care they need – the reality is far from relaxing. Over the past few weeks the flurry of energy for Britain Cares has been magnified all around the country, as Scope customers have been signing campaign cards in their thousands across our 235 shops. It’s fantastic to see so much support for this crucial campaign.

For the past two weeks, Scope shoppers have been invited to choose a postcard and send it to their MP. There are six card designs, each representing a different area of life that social care makes possible for some disabled people, ranging from the essentials like getting washed and dressed to being able to leave the house to meet family or go to work. Things that many of us may take for granted, until we consider life without them.

Leslee Welman, manager of Exmouth’s Scope shop, has been busy speaking to customers about the Britain Cares campaign and collecting hundreds of signed postcards. She told us how brilliant it has been to see such a lot of support for the campaign from her customers:

“It’s been really positive so far. It’s wonderful to see our customers so passionate about this issue and able to take action by signing a campaign card. They’re really keen to do anything they can to support the campaign, and of course Scope. I’ve spoken to many of my customers who are personally affected by changes to social care and therefore this is really important to them.”

All the signed cards are now on their way to Westminster, to call on MPs to take action and ensure that social care is funded in the upcoming Spending Review and that disabled people get the right support to live their lives.

If you are one of the thousands of people who have already signed a Britain Cares card in a Scope shop – thank you for your support. Please stay involved, and visit www.britaincares.co.uk for the many ways you can continue to show you care.

Queen announces Care Bill – will reforms help disabled people?

Guest post from Caroline Hawkings who is a Senior Public Policy Advisor for Social Care at disability charity Scope.

When the draft Care and Support Bill was published last July, there was much to be pleased about. For example, for the first time social care law is modernised into one statute. Importantly, there is an overarching principle to promote ‘well-being’, rights of carers are strengthened and there are new duties on local authorities to provide information and advice.

Since July, Scope, along with other charities in the Care and Support Alliance, has been working hard with policy makers at the Department of Health to make changes to the draft Bill, such as pushing for specific provisions for advocacy. The crucial question is will this Bill be a new improved version, or will it merely be tinkering at the edges? We will have to wait and see, but on the key question of eligibility for social care, we won’t have any immediate answers.

Disabled people have repeatedly told us that whether or not they qualify for local authority funded care and support is their overriding concern. The Bill will establish a national eligibility threshold – a national minimum level at which local authorities must provide care and support. This should help to end the current variations between one local authority and another. However, there’s a danger that this threshold, which will be set through regulations, will be set too high. In future, care and support is likely to be available only for people whose needs are ‘substantial’ or ‘critical’, potentially denying social care to thousands of others whose independence will be severely curtailed.

Social care in crisis

We know that local councils have had to cut back on funding for social care, partly by reducing the numbers of disabled people who receive it. The Other Care Crisis (PDF), a joint report from Scope and four other disability charities using research from the London School of Economics estimates that 70,000 disabled people are already struggling to get by without social care and a further 30,000 more will be at risk of losing their support if the Government’s proposals go ahead as planned.

In a Scope survey, featured in the report, four in ten disabled people said that their basic needs, like washing once a day, getting dressed and getting out of the house, were not being met. We heard from people like Joshua who now has to ask strangers for help to put his shoes back on when they fall off and Michelle who often goes without having a shower because she just doesn’t have the energy to manage.

Britain Cares about social care

This is why Scope has launched the Britain Cares campaign to end this scandal. We – along with other charities, groups and thousands of people are calling on the Government to put in place enough funding so that disabled people can get the essential support they need. Crucially, the budget for social care will be decided in the forthcoming Spending Review in June and this is when the regulations setting out national threshold are due to be published.

So, it’s not only May that will be significant in the life of the new Care and Support Bill, but also 26 June when the Spending Review is announced. Although we hope that the new Bill will contain considerable improvements to the first draft, it will be far from ‘job done’. Over the next few weeks, through our campaigning and discussions with parliamentarians and civil servants, we’l l be redoubling our efforts to ensure that disabled people have the vital support they need to live their lives.

Show that you care that disabled people should get essential support to lead their lives.

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.

 

The hardest hit of the hardest hit

Guest post from Claudia Wood, Deputy Director of Demos

It has become clear, since as early as 2010, that radical cuts to welfare spending would be the centre-piece of the Government’s deficit reduction plan. The aim of reducing the benefits bill by £18 billion per year by 2014-15, was supplemented in 2012 by the announcement that a further £10 billion would be shaved off with a new round of reforms from 2017.

The impact of the Government’s plan to cut several benefits in several ways will – inevitably – affect some households repeatedly. The Government’s Impact Assessments only consider each cut in isolation, and cannot quantify this cumulative effect. And so the Government has identified dozens of individual groups who will experience a reduction in income, but has no idea if they are actually identifying the same group over and over again.

We are witnessing the most ambitious reform of the Welfare State since it was created – shouldn’t the Government have a way of assessing its impact which is fit for purpose? This is particularly important for groups most likely to be on the sharp end of multiple cuts. Disabled people, for example, rely on a variety of different benefits and services, few of which have escaped reform in the last three years.

Cuts: calculating the cumulative effect

Supported by Scope, Demos attempted a series of cumulative impact assessments based on the combined effect of 15 disability-benefit related cuts.

We were able to work out how many disabled people would be affected by each, and how much they would lose in monetary terms. We found, overall, that 3.7 million disabled people would experience some reduction of income, and, over the period to 2017 – when the next set of reforms are likely to be announced – they would lose £28 billion in benefits as a group.

That’s a big number, adding together several individual cuts. But of course, they aren’t spread equally. What happens to the hundreds of thousands of disabled people who we found would be subject to up to six welfare cuts simultaneously?

Number of disabled people affected Loss per person by 2018 Total loss as a group
Double whammy  88,000  £15,506  £1.3 billion
Triple whammy  26,600  £17,097 to £23,461  £6.2 billion
Triple whammy  93,366  £6,309  £589 million
Triple whammy  29,484  £18,100  £533 million
Triple whammy 264,600 £6,280 £1.66 billion
Quadruple whammy  16,768  £5,428  £113 million
Quintuple whammy  12,500  £11,517  £481 million
Sextuple whammy  3,000  £23,300  £23-£116 million

At the ‘lucky’ end of the scale, 88,000 people currently claiming contributory ESA (WRAG) will see a double whammy of having their benefit capped by 1% through the Benefit Uprating Bill, and time limited to 12 months. At the other end of the scale – a group we might call ‘the hardest hit of the hardest hit’ – at least 1,000 disabled people (up to 5,000) will experience six separate cuts to their benefits income before the next election. By the time the next round of cuts are due, they will be £23,300 worse off per person – this represents the loss of all benefits recognising their disability (ESA and DLA), and a substantial reduction in housing benefit.

In between these two poles lies the 120,000 who will experience some form of triple cut, and 99,000 who will have a quadruple cut. At best, these represent a loss of £6,309 per person by 2017. But for those unfortunate enough to lose their Disability Living Allowance early on, and who also claim contributory ESA (WRAG), the combined impact of these and the CPI and 1% uprating cap will be a £23,461 loss by 2017.

Disabled people’s spiralling costs of living

For anyone, these are substantial sums of money. But for disabled people struggling with spiralling costs of living, such financial losses are life-changing.

Yet they are also an underestimate. We didn’t include in our cumulative assessments many of the reforms we modelled individually – such as the freezing of child benefit (affecting one million disabled parents), nor the closure of the Independent Living Fund (21,000 disabled people), discretionary payments to the Social Fund (945,000 disabled people), the 10% cut to Council Tax Credit (1.38 million disabled people), or cutting of Local Housing Allowances for private tenants (827,000 disabled people).

We didn’t include these as we felt we were unable to quantify the exact combination of cuts using publicly available data – this is perhaps the ‘too hard’ bit the Government referred to. But the fact we were able to construct seven distinct cumulative combinations covering the primary disability benefits (DLA and ESA) and Housing Benefit, factoring in uprating, time limitations and implementation periods, using public data, suggests that a more comprehensive and ambitious analysis would not be beyond the capacity of the statisticians at DWP.

And it is critical that it is attempted. Individual Impact Assessments are all well and good when making a single policy change here and there, but when dozens of changes are underway simultaneously – 18 Impact Assessments were issued for the Welfare Reform Bill alone – this piecemeal approach is both inadequate and misleading.

Each Impact Assessment identifies a relatively small amount of money shared across a large group. On reading them, one might conclude that the cuts are being widely and fairly spread. But if we were to pile three, four, or more losses onto a single person – would we say the same? And yet this is the case for hundreds of thousands of people across the country. How can we judge the fairness of such a comprehensive package of cuts if we have no real overview over who will be affected, and to what extent?

Table 1 – the headline figures from our analysis (PDF)
Table 2 – how the changes are combining to produce a cumulative impact (PDF)
Table 3 – for more detail on how we calculated the total figures (PDF)

ILF closure: “This is about people’s lives, people’s futures”

“I’m a social worker and I’m trying to start up a community farming business.”

So much of the media and political rhetoric around cuts to support for disabled people focuses on the alleged fraudsters, people who are said to have no ambition but to live off the state. It was such a different story outside the High Court in snowy London today.

“I’ve recently travelled to Spain, Portugal and Thailand and I run my own small travel agency. I can only do it because of the Independent Living Fund.”

These are what I heard from just two of the people I met today. Their stories are of people living their lives, no matter that they have severe impairments. The support of the Independent Living Fund and social care allow them to do that – and it’s brilliant. Talking to them, it was clear they live fuller lives than many non-disabled people I know. They’re people with big dreams and independent lives, as we’d all aspire to be.

But that’s all in jeopardy. Soon, for some of the people who need this support, just being able to leave their house could be a distant dream.

The reason we were there in the snow was to join a vigil protesting the Government’s closure of the Independent Living Fund (ILF), as the High Court was about to hear a case challenging the Government’s consultation about the decision to close it.

“What kind of country are we? What kind of country do we want to be? Closing the ILF would isolate many disabled people, making them invisible. This is unacceptable in Britain in the 21st century.”

“This is not just about us now, it’s about the future too.”

These were the words of two of the eloquent and moving speakers, spelling out what it would mean to lose the support of the ILF. I believe passionately that we in Britain do care about being a fair society where everyone should be free to lead their life. But the danger now is that we backtrack 30 years to a horrendous vision someone today described as “a ‘feed and clean’ culture in which disabled people are forced to lie in bed in incontinence pads and eat sandwiches”.

Read some of the stories that people have shared recently about what the ILF means to their life and you can’t help but feel the importance of the ILF and social care.

Freedom. Independence. Dignity. These can feel like grand, empty words — until you hear the heartbreak of the everyday realities when care and support is taken away. Having to go for days without a shower; having to make your six-year-old son care for you; simply not being able to get out of your house and do what you want to do, as Scope and four other charities detailed recently. You and I wouldn’t stand for it: no-one should have to.

It’s no wonder pressure is growing on the Government to deal with the crisis in social care for disabled people. As one activist wrote today, “even in these difficult times, can the Coalition rise to this vital challenge, or will the life chances of disabled people be destroyed for a generation?”

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

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.’

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.