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)

Budget announcement on a new tax relief for social investment

Guest post from Tom Hall who is Scope’s Director of Philanthropy and Corporate Partnerships

As we digested what it meant to be an ‘aspiration nation’, another Budget announcement flew under the radar. The Chancellor has revealed that the Government will be consulting on introducing a new tax relief for social investment.

This is good news for charities and the people they work to support. Especially as so many are finding it increasingly difficult to generate the same level of donations from traditional sources

Scope has pioneered social investment because we think it will help charities and social enterprises like us grow efficiently and become more sustainable in the future.

Scope investment bond

We launched our Bond back in 2011, successfully raising £2 million at 2% repayable after three years.

The money has been invested in expanding our network of shops, with each new shop bringing in about £30,000 a year to support our work with disabled people and their families. We’ve also used it to encourage 10,000 more people to regularly donate to Scope. All this will give us sustainable unrestricted income to fund our key work, supporting disabled people and their families through programmes like our network of parent befriending groups.

We have already paid our first interest payment (these are to be paid twice a year) and were delighted to win the Sustainable City Award for sustainable finance this week.

Having successfully launched the Bond and accessed finance in this way, we are now looking at other enterprising activities that give investors the chance to see their money make a difference to the lives of disabled people.

Whilst our bond was a success we felt that it would have been even more successful if our investors could have received some form of tax relief on their investment. There is currently no tax relief available for investors who choose to lend to charities and social enterprises through products such as the Scope Bond Programme.

We believe tax relief would help charities to overcome the barriers they face around being about to pay fully commercial returns and would incentivise investors who want to see social as well as financial return on their investments.

Tax relief on charitable lending

A tax relief on charitable lending, for example of 5% per annum on the amount invested, could significantly raise the financial return and therefore appeal of social investments, helping encourage more people to invest in delivering social impact.

For example a tax relief of 5% per annum would have turned the a 2% return from Scope’s bond into a 4.5% return for the investor, allowing it to compete more favourably with traditional products on the market, whilst having the additional benefit of supporting families with disabled children.

Whilst we don’t think that charities can become reliant on investments secured through loans or bond issues and that these products can only ever be part of a charity’s financing, we believe that there it is necessary for charities to explore more creative and efficient uses of funding, particularly in the current economic climate. Tax relief will help charities and investors move in this direction, become more sustainable and deliver greater social impact.

World Down Syndrome Day – Meet Sarah and Philip

Sarah is mum to Philip and lives in Chorley, Lancashire with her husband and their other son Patrick. Philip is a typical mischievous four-year-old; he loves pirates and cars, and is fascinated by animals.

When Phillp was diagnosed with Down Syndrome, Sarah felt isolated and helpless. Although her family and friends were very supportive, she felt unable to return to work, and her self-esteem suffered as a result.

Face 2 Face parent befriending

Patrick, Philip and SarahSarah discovered Scope’s Face 2 Face Befriender scheme when Phillip was a year old. It’s a network of parents with disabled children who support each other through their common experiences. She found that it gave her a safe space to talk about how she really felt. “That was one of the differences that it really made – they were prepared to listen to my darkest fears.”

As her confidence increased, Sarah attended courses on speech therapy and signing, developing skills that she could use to assist her son. Without these and the support from Face 2 Face, Sarah believes that Philip wouldn’t have been able to start mainstream school in September.

Later, Sarah trained to become a befriender herself, passing on what she had learned to new parents so they could “wear the many hats that the parent of a disabled child must wear: physio, speech therapist, playmate and educator” in order to support their child.

A future full of possibilities

Sarah and Philip are now looking forward to a future full of possibilities, thanks to the support of people like you. She told us, “I’m so hopeful for what Philip will achieve now. I know he is going to contribute to the world around him – and I can’t wait to watch!”

Thanks to your support, we’re able to recruit and train more befrienders who can then support many more families with disabled children, meaning that they too can have a future full of possibilities. Thank you.

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

Encouraging children who struggle with reading

Guest post from Rose-tinted World – a parent of a family affected by Irlen syndrome and dyspraxia. She blogs to raise awareness of these condition and to share information with others affected.

World Book Day is an annual celebration of books and reading. This year World Book Day falls on 7 March. World Book Day offers a great opportunity for children – it allows everyone to find something to enjoy about literature. This seems quite obvious but it is a point worth making. Not every child is a natural reader and all develop as confident readers at their own pace. Some, like my daughter, have to contend with a learning difficulty that makes independent reading more difficult.

How wonderful to have day where everyone can talk about their favourite books and fictional characters. At my children’s school the children are allowed to dress up as their favourite character for the day. This makes all the children equal. Nobody has to read out loud, or show how slowly they read or even say how many books they have read themselves. They only have to share their love of their favourite book with their peers.

We have always read to our children. This proved particularly helpful when my daughter’s problems with reading started. We were able to read her far more complicated books than she could read to herself. This enabled her to listen to chapter books and to develop an understanding of more complex narratives and extended character development. This also allowed her to continue to build on her love of literature.

Come World Book Day two years ago she chose one of the characters from the books we had been reading to her. This was one of the fairies from the ‘Rainbow Fairies’ series of books by Daisy Meadows. She loves these books and has collected many of the series over a number of birthdays.

Son dressed as dinosaurLast year my daughter dressed as the witch from the ‘Worst Witch’ by Jill Murphy. My son dressed a dinosaur from ‘Dinosaurs and all That Rubbish’ by Michael Forman. We also attended the book fair that was put on at the school. My children love this event – All the children love this event and it is always a pleasure to see children so excited by books.

Last year both my children chose books and we went off to meet a friend for dinner. Our friend was running a little late and my daughter took out her book and asked if she could read it. At this point she had only managed to read picture books but I didn’t point this out as she happily held up the chapter book she had chosen. My friend arrived and we started nattering not really noticing how quiet my daughter was being. My daughter read all through our visit with our friend and then went off to her room when we got home. The next morning my daughter announced she had read the book and it was great. I was amazed that she had managed to do this and a bit confused about where this sudden breakthrough had come from. So I asked her how come she had read the whole book and she answered quite simply – because she had picked it up from a shelf that said ‘read it yourself’.

"Read alone" sign

I always remember this moment with warmth. We had had so many struggles in the years before this – fraught home work sessions and frustrated reading practices. We had also had uncertainty about where progress could come from. It made me laugh that my daughter had taken a sign so literally and that this has enabled her to take a massive leap in her own development.

We are always happy when World Book Day comes around. We have always had the belief that the joy of literature can communicate itself and that there are many ways to appreciate books (listening, dressing up, drama etc). We enjoy World Book Day because it gives us the perfect opportunity to remember all of these things.

Find information on World Book Day
Ideas on World Book Day costumes

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.

Looking ahead

There can be no doubt that 2013 is already proving to be another tough year for many disabled people. Welfare and social care reforms continue to gain momentum and we’re already seeing an impact on quality of life for many families and individuals. We are particularly concerned that disabled people are being overlooked in the discussions about changes to the social care system and are part of a major campaign across the disability sector to address this. And locally, we know that cuts to care packages and the rollout of the Work Capability Assessment continue to cause anxiety for a huge number of people.

Against this backdrop, I am more aware than ever about the need for Scope to move with the times. The strategic direction we launched last year is all about creating a better society for disabled people and their families. We are now beginning to turn this direction into action. At the start February, we spent a valuable day with our Scope Assembly members discussing the strategic theme of ‘Living independently in the community’. We gathered some very useful ideas. One of the things we know we need to address is how we support people with the most complex needs to gain greater independence, ensuring that they have access to all the support that they (and their families and carers) need to achieve this.

It’s important that we think about all of these things. We have to respond to what is happening now, influencing decision makers and helping to ensure that disabled people’s voices are heard. At the same time, we need to look to the future, being willing to ask the big questions and take bold decisions. We will continue to do both of these things throughout 2013 and will continue to keep you updated.

Thank you, as always, for your support.

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.’