Order for Second Reading read.
I beg to move, That the Bill be now read a Second time.
I know that all colleagues will agree that there are many things on which a Government can spend money. The list of demands is endless and resources, of course, are finite. Yet we would also perhaps all agree that the most vulnerable in our society deserve special attention. Which groups are more vulnerable and more deserving of support than children who are severely disabled, not through choice or their own neglect or act, but simply through circumstance—more often than not through the accident of birth? Which group deserves our respect more than those parents and families bringing up their severely disabled loved ones themselves?
We have all met those parents in our surgeries over the years. They come to us to explain their circumstances and how much they love their child, but also to tell us that they are at breaking point. They talk of sleep-deprived nights, of other children in the family missing out, of constant pressure, and too often of a broken partnership brought about by the 24/7 treadmill of care. They are not asking for someone else to bring up their child: that is the last thing they want. How impressive is a parent’s love.
The request of those parents is much more modest. Is there any prospect, they ask, of a little more respite care or the occasional short break? One hears oneself screaming inwardly that that does not seem too much to ask. In fact, they are asking not too much, but too little. Surely that must be on offer out there; surely we can deliver on that, can we not? On making inquiries, one then discovers a patchy world of waiting lists and disappointments. Let us be fair and say that things are good in some areas, but in far too many, no real short breaks are available for these families.
Does my hon. Friend agree that, while it is entirely proper to look into the issue of resources, if families are stretched to and beyond breaking point, the likelihood is that if they are no longer able to look after their own children in these conditions, the overall call on public resources because of that collapse will end up being greater than it would have been if they had been properly supported?
My hon. Friend makes an important point, which I will certainly come on to later in my speech. The cost of raising such a child in the state sector is £200,000 a year. The families who come to see us in our surgeries are not asking for £200,000 a year for short breaks, but only for £2,000, £3,000 or £4,000. Do the maths.
These parents are asking for short breaks. Perhaps to the astonishment of some of us, there is simply not enough provision available. The Bill provides an opportunity to create a new right to support for one of the most marginalised and disadvantaged groups in our society: families with severely disabled children. In the month in which UNICEF has ranked the UK at the bottom of the league table of developed countries for children’s well-being, I join the Children’s Commissioner for England in highlighting the fact that if we need to do more for all our children, we certainly need to do much more for disabled children. The Bill is part of that endeavour.
The Bill has been prepared by the Every Disabled Child Matters campaign set up by Contact a Family, the Council for Disabled Children, Mencap and the Special Education Consortium—and I want to pay a warm tribute to all those involved in this really deserving campaign. It is timely and it must succeed. The House knows of your commitment to this campaign, Madam Deputy Speaker, if I am permitted to say so.
The introduction of the Bill has been celebrated by parents, professionals, disabled children and young people throughout England and Wales—not least by the 15,000 supporters of the campaign. More than 2,400 e-mails have been sent by the campaign’s supporters to colleagues in the House, and as a result of that support, 231 Members of Parliament have signed early-day motion 321 in support of the Bill. I was going to do the fingers, but I could not quite manage it, sorry. Early-day motion 321, then, supports the Bill.
Now over the years, I have been powerfully moved by families coming to see me in my surgeries—families caring wonderfully for a severely disabled child and seeking just a little more short-break respite care. I have always done my best, but it never seemed enough. On Tuesday 21 November last year, in the House of Commons, I attended a reception put on by the Every Disabled Child Matters campaign. A young lady called Storme spoke very eloquently at that reception, and what she said grabbed my attention. I decided there and then that, if I were successful in the private Members’ Bill ballot, I would try to introduce this Bill or something like it. That Thursday, 23 November, at about 11 o’clock, my office received a call to say that I had come No. 4 in the ballot, and I did not hesitate.
From the outset, I wanted to proceed on an all-party basis, so I am delighted to have here today such a large number of colleagues from all parties—including the co-sponsors of the Bill, to whom I am extremely grateful. Many of them were involved in parliamentary hearings on services for disabled children last year. Indeed, that important process has been led by the right hon. Member for Coatbridge, Chryston and Bellshill (Mr. Clarke) and the hon. Member for Blackpool, North and Fleetwood (Mrs. Humble). I am sure that they will speak later in the debate if they catch your eye, Madam Deputy Speaker, and I am sure that they will explain more about their commitment to this cause. My hon. Friend the Member for Braintree (Mr. Newmark) has also displayed great interest in this subject since the moment he was elected, and that is greatly to his credit.
I pay genuine tribute to all colleagues who have been campaigning on the issue for so long. I recognise that, compared with them, I am a Johnny-come-lately to the issue, but the deeper I dig, the more convinced I am that we need to do better. Any Member involved in those hearings or who has read the report of those hearings will be left in no doubt of the urgent need to improve the support that we offer to families with disabled children.
I want to pause to congratulate the Economic Secretary to the Treasury, the hon. Member for Normanton (Ed Balls), who when a Back Bencher, introduced a ten-minute Bill that contained many of the same provisions as those that I now wish to introduce. We all know that he is, and will continue to be, a high-flyer in British politics, but he genuinely cares about the plight of disabled children and their families. I acknowledge his vital work in the field.
The Bill is intended to create a new right to short breaks from caring for families with severely disabled children.
I am grateful to the hon. Gentleman for those questions. I certainly have had discussions with the Economic Secretary two or three times over the past two weeks, and I attended a meeting at which he spoke very eloquently this week. He was able to announce the Government’s commitment in the comprehensive spending review—about which I will say more later, and I hope that the Minister will say much more about it—and he was able to say a little more about the Government’s commitment to this cause. Again, the Economic Secretary must take a lot of the credit for instigating that review, but those discussions are under way.
There is no question but that the duty that we anticipate in the Bill requires a funding package behind it. We all know that local councils throughout the land are hard pressed. It would be wrong for the House to hand down a duty without the money to go with it. The conversation with the Government about that funding is ongoing, and my hon. Friend will want to address that in his remarks later.
I may be in danger of pre-empting some of my hon. Friend’s comments, but does he not feel that there would be great economic advantage in the Government investing in the issue, given the savings that would be secured in defending the mental well-being of the families who have such caring responsibilities and the financial savings that would come from avoiding many of the family break-ups that arise from the stresses and strains of those caring responsibilities?
It would be wise of the Government to make that investment, but I want to step back for a second and make a wider point. Frankly, all hon. Members of all parties should reflect for a moment on why we have not collectively put in place a better system of support for families caring for their disabled children over the years and the decades.
I had a dinner in the House of Commons last night with some colleagues who started work at the same law firm as I did 30 years ago—hard to believe—which is the largest law firm in the country. We meet from to time. They are, like me, very brilliant people, and unlike me, very high-earning people. When I shared with them what I would do today and explained what we are discussing, to a person, they could not believe that such a system of support was not already in place. They could not believe it. They asked me, “Why aren’t you doing that already; why hasn’t this been in place for decades?” These families deserve our support, because they are the most vulnerable in our community.
I am sure that I will be lured and enticed from time to time by my colleagues to make a point attacking the Government on the failure to put money up front today. I will not do that, because all of us could have done more over the years. I am concerned only about looking forward and saying that, in the next 12 months or two years, we must do an awful lot more.
The hon. Gentleman is making a very powerful case for the Bill, which I strongly support. What estimate has come from his consultations on the Bill about the scale of resources that we are talking about for respite care, taking account of the powerful points that have been made by some of his colleagues and others about the savings of avoiding family breakdown and long-term residential care, when people cannot continue to look after disabled children?
I am grateful to the right hon. Gentleman for that invitation: the estimate—I think that the calculations have been done by the Government, but the Minister will share that information with us later on—is that between £150 million and £190 million a year would be the cost of implementing the duty that the Bill contains, with the quality of short-break packages that we want. That is before we even take into account the savings, so a lesser figure would be involved. Personally, if it were up to me, I would make it a priority, and I would find the extra Government money from somewhere. I understand the Government’s difficulty—I am not here to nit-pick with them—but I urge them to agree that those are the kind of numbers that we need to find in the comprehensive spending review to make this work.
I will come on to talk about best practice in a minute; this is not just about money but about what we do with it and the kind of short breaks that we provide.
When we are considering that £200 million-odd, we must also bear it in mind that these are among the least favoured and poorest families. Although I represent a very affluent part of the country, what is obvious to me when those parents come to my surgeries is that they have not a bean left, because they have had to extend their mortgages to adapt the house. Given the conditions of having to provide 24-hour care, their incomes are very limited. However articulate and well educated they are, they are living on very limited incomes.
My hon. Friend makes a very powerful point. Again, let us reflect: what are they asking for? They might be asking for one night a week when they can be a normal family—their own words, not mine—so that they can take the other children out to the cinema, or one night a week when they do not have to get up three or four times during the night to tend to their child. Are they asking for the world? They are not.
I, too, fully support the Bill and have added my voice in arguing that that must be a high priority in the Government’s comprehensive spending review, but I want to draw to the hon. Gentleman’s attention a point made to me by one of my constituents with a disabled child who is now a disabled adult. Although the parent, who is of retirement age, fully understood the need for care to be provided now for younger children, which she did not receive when her child was that age, she made the point that the needs of older parents of those children who remain disabled as adults also need to be taken into account. That poses the difficult problem when we are talking about spending priorities, that that group is also a high priority for additional support, and no Government can fund everything.
I agree with the hon. Lady. Indeed, parents also come to us—do they not?—when they are looking after their 40 or 50-year-old child, for whom they have been caring for 20 or 30 years or more. An additional question in their minds is what will happen to their son or daughter when they die. That is a problem. I would be happy to put the provisions in place as a first instalment—it is a matter of huge priority—then, we have to build on that. I agree with her and, if money were no object, we would do that immediately.
I seek a little clarification about some of the language that has been used so far. Much has been said about parents. Does the hon. Gentleman accept that, in many cases, it is either a parent who is bringing up a child with a disability, or quite often a grandparent or a relative in a wider sense? Often, there is an even greater strain in the case of some of those other relationships, when such an intense level of support, help and care for a child with a disability is needed.
The hon. Gentleman speaks with obvious expertise on the subject. What he describes is indeed the case. In many situations, siblings also carry some of the load of caring. I want to talk about the Bill in more detail, lest the House should be less fully informed as to its contents than it might be.
I wonder whether my hon. Friend can help me on a matter of procedure. In comparison to some in the House, such as my hon. Friend the Member for South Staffordshire (Sir Patrick Cormack), we are still comparative newcomers. It seems that the only issue will be money. Everyone seems to agree that if the cost were between £150 million and £200 million, that would be money well spent. However, we all know from previous Fridays that there is a temptation for the Government Whips to encourage people to speak for a long time. Am I right in thinking that there is absolutely nothing to stop the Government business managers allowing the Bill to go into Committee and to pass, and then bringing forward a money resolution at a completely different time? I want to be clear that there is absolutely no excuse for the Government to turn the Bill down on arguments about money, because the money resolution could await the outcome of the comprehensive spending review. Have I got that right?
My hon. Friend is absolutely right. What he describes is my deepest wish. I have made that representation to the Government over the past few weeks. Although it might not happen, the Minister could still spring to his feet later today, having had a death-bed conversion, to announce the joyous news that the Bill will be allowed to go up to Committee, whereupon further negotiations will take place.
I am sorry to disappoint the hon. Gentleman at this stage, but he will be well aware that the disabled children’s review, which is taking place at the moment in harness with the comprehensive spending review, is not just about money.
I appreciate that, but let us get on to the detail of the Bill. That is what the House is waiting for. The right that we seek to introduce in the Bill takes the form of specific duties on local authorities and health agencies to provide a suitable level of short-break care to families who provide a substantial level of ongoing care to their disabled child.
The following key principles inform the need for the Bill. First, severely disabled children require an intensive level of care, and that care is most often provided within the family. About 90 per cent. of severely disabled children in this country are cared for by their families. Secondly, families want to care for their children, but providing that amount of care without a break can take a toll on the main carer and on relationships in the family. To me, that is just obvious. Thirdly, short-break services can and do provide disabled children with new opportunities, while also giving carers a break. Fourthly, short-break services are currently provided at the discretion of the local authority and are not based on an entitlement related to need. Fifthly, funding pressures and a lack of availability of appropriate short-break services across the country mean that the majority of disabled children and their families do not get the support that they need and deserve.
The current legal position on short breaks is that disabled children are entitled, under section 17 of the Children Act 1989, to have their needs assessed and services provided. Carers have a range of entitlements to assessments, services and support from the raft of carers legislation passed since 1995. However, as yet there is no clear legal entitlement to legally enforceable short breaks for families with disabled children. Nor are there specific duties on local authorities or health agencies to provide breaks.
Information on the provision of short breaks is not comprehensive, but the scraps of information that we have paint a picture of a highly inadequate situation. The Commission for Social Care Inspection reports that only 6 per cent. of all disabled children are in receipt of regular support from social services. That figure tells us nothing of the quantity or quality of the short breaks received by the children and it does not give us any information about their needs. The provision of short breaks at the moment is a lottery. A handful of disabled children get the support that they need; a few get some support, but not enough; and the majority get no support at all.
By imposing a tightly defined specific duty to provide short breaks to children with a certain level of need, the Bill would put in place a system to improve the allocation of short breaks to disabled children, based on need. The Bill also amends the Childcare Act 2006 to require local authorities to ensure that there is a sufficient supply of short-break services in their area to meet the needs of their population of disabled children. It is not, of course, that local authorities need to deliver all the services themselves. I will talk about best practice in a moment and the visit that I made yesterday to Enfield with Lord Adonis. Partnerships with the voluntary sector and with specialist providers can bring tremendous relief to families.
In the Bill, short-break care means a service provided to a disabled child in order to give the person with caring responsibility a break from caring. Breaks must be regular, reliable and predictable so that carers can plan how to use their time. The extra cash announced by the Government on Wednesday was helpful and I certainly welcome it, but it will never provide the kind of short-break service that such families need. Indeed, I think that the Minister would acknowledge that it was never intended to do so. It is intended to provide only emergency respite care.
Families with disabled children need a service that they can rely on to give them a regular break. Naturally, parents of disabled children, like other carers, will need emergency breaks when they reach breaking point. The Minister could provide useful reassurance today that the funding that was set out this week in the new deal for carers will also cover parents of disabled children and that the Government will consult Contact a Family and other leading organisations in the field when deciding how to allocate the £25 million for emergency respite care that was announced this week.
In a powerful speech on Tuesday, the Economic Secretary, who I suppose is in danger of becoming something of an icon in this debate, although he is not present, described the experience of one of his constituents, who was desperately looking forward to her only annual holiday—one week away from her 24/7 caring role for her severely disabled loved one. I think that she was going to leave on the Saturday, for one week, with the rest of the family. She had been looking forward to it all year, only to have a phone call on the Friday to say that, owing to staff shortages, that week’s holiday had been cancelled. We need to put ourselves in the shoes of that person and to imagine that soul-crushing disappointment. She had been depending on and looking forward to that break. We cannot treat the most vulnerable people in our country in that way.
Short breaks are to be seen as an additional service that needs to be offered to the family as well as, not instead of, services provided to a disabled child to help them get their own rights, including the right to play. However, it is a key principle of the Bill that short-break services must be of a quality that ensures that they deliver benefits to both disabled children and their carers.
My hon. Friend is making a powerful and balanced case. Will he acknowledge that, even if the Government agree that these services should be funded and that there should be a statutory responsibility, there is a dire shortage of carers available to provide respite care? There is a 10,000 shortage of foster carers. It is also a fact that, in the Childcare Act 2006, which the Minister and I dealt with, the Government neglected to make any special provision for disabled child care places. Special provision is needed for children with the sort of disabilities for which my hon. Friend is asking for these services to be provided.
My hon. Friend, who has a great deal of expertise in this matter, makes an important point. I was not aware of the extent of the shortfall of carers, and no doubt the Minister will want to comment on my hon. Friend’s powerful point in his speech.
Members of every family, even mine, need a break from each other from time to time. Disabled children and their families are no different. Actually, I want to make something very clear: I do not need a break from my wife. I would like to see more of my wife. I was making a generic point, lest there be any misunderstanding and my weekend is ruined.
A recent study that formed part of Mencap’s “Breaking Point” report found that seven out of 10 families of disabled children provided 15 or more hours of care a day. It also found that five out of 10 always provided care during the night. Those children thus need constant support and care if they are to enjoy a full life, and their parents and carers are providing that care. It is obvious that providing such support day in, day out, will take its toll on the family, family life and the health of the primary carer. Mencap’s survey found that eight out of 10 families of disabled children had reached, or come close to, breaking point and had felt that they could not continue. Families throughout the country are struggling to support their children and need regular short breaks that allow a break from caring. Many children are denied the opportunities that short breaks allow.
“No Time for Us”, a study of 2,000 families carried out by Contact a Family in 2004, examined the impact of having a disabled child on couples’ relationships. One parent told Contact a Family:
“Any difficulties between my husband and I are exacerbated by the additional stress and time lost to caring for a disabled child. Neither of us gets enough time and attention for us as individuals and neither of us has the capacity to give more to the other.”
Overall, the single most important factor identified by the majority of respondents was a break from providing care for the disabled child and time to be with the partner and the other children—time to be a normal family. Parents say again and again, “We just want to be a normal family doing the things that normal families do.”
Another parent said:
“The reason my relationship has survived is due to the fact that we receive a good respite care package. My husband was on the verge of breaking up due to the strains of caring for our profoundly disabled son when he was much younger ... due to lack of sleep mainly”—
we can all empathise with that. She continued:
“Respite care has been the key to our survival, it has allowed us to charge our batteries and have time for our other children and each other.”
Some 60 per cent. of respondents to the survey said that short-term breaks would have made a difference to their relationships. One talked about
“Having someone to look after both children for an evening perhaps once a month when we could go out and be a couple and properly talk ... not just be carers.”
Disabled children and their families get the same benefits as other families from regular breaks from each other. Given the significant caring needs of many severely disabled children, the benefits of breaks to those families can be even more profound. Families who get breaks describe them as “vital”, “essential” and “a lifeline”. Parents say that short breaks help them to continue to provide the care and support that their children need. Short breaks can give disabled children the opportunity to do things to which they might be denied access in other spheres of life. For the rest of the family, they give time to recharge the batteries, sleep, catch up with housework and spend time doing things that are often impossible to do with a disabled child, such as taking a trip to the cinema or the park, which many of us take for granted.
Short breaks need to be of sufficient quality. Families who submitted evidence to Mencap and the parliamentary hearings talked frequently about a lack of choice in short-break services for their children and services of often poor quality. Six out of 10 families in the Mencap survey said that they either did not get a short break at all, or only one that did not really meet their needs. Seven out of 10 families said that they had never been offered a choice.
Families talk about the lack of availability of the right kind of short breaks to meet their children’s needs. Families often do not have a range of short breaks available to them and have to take what is available, rather than a service that properly meets their needs. Families report breaks that are not long enough, not flexible, or of the wrong type. Others report a lack of confidence in the services to support their children’s needs and say that staff training is not always good enough. Perhaps that touches on the point made by my hon. Friend the Member for East Worthing and Shoreham (Tim Loughton) about a lack of care capacity in some parts of the country.
I bring good news. As part of my discussions with the Government about the Bill over the past few weeks, which have been backed up by the wonderful team from Every Disabled Child Matters, I had the opportunity yesterday to go to Enfield with the outstanding Lord Adonis, the Minister who leads on disabled children. We visited the Cheviots disability service and met several impressive people, including the inspirational Janet Leach, who runs the joint disability service in Enfield. We heard from managers about how the services run from Cheviots provide families with an ordinary life by giving them the opportunity to have the sort of breaks from caring about which I have been talking, which other families take for granted. Crucially, the breaks that the service delivers are planned, predictable and reliable. As Janet Leach said, that reliability gives hope to families and creates a sense of normality that would otherwise be absent from their lives.
All the 300 families getting support from Cheviots have flexible packages that are designed to meet their individual needs. The fact that the centre was set up in the 1970s to provide old-style residential respite for fewer than 20 children shows how far some areas have come in improving the support that families receive. Some of the families are happy with a sitting service of just eight hours a month, while some need, and get, far more. The crucial point is that the service is designed to meet the needs of the child and family.
We heard about a lovely example of that: an activity scheme through which severely disabled children are playing football at Tottenham Hotspur—Liverpool football club would be better, but Tottenham Hotspur is on the doorstep. Such an opportunity would be wonderful for any child, and, of course, the family gets a break at the same time. Meaningful activity for the child and a break for the family is exactly the sort of child-centred approach that we are trying to promote through the Bill. Enfield has managed to put together a series of activity events with the support of local businesses that give children and families access to opportunities that would otherwise be denied to them.
It is evident that the situation in Enfield is not yet matched in other London boroughs. For example, news reaches me that there will be a full vote of the council in Tower Hamlets next week to decide whether to continue respite care at all. The Enfield managers themselves were clear that several challenges remain.
One challenge is funding, which we have touched on. I know that the Government plan to address that through the comprehensive spending review. I am looking to the Minister to give us firm assurances in his speech that more funding for short breaks will be available in the next spending round. I invite him to be as specific as possible about that matter.
A second challenge is that of engaging health agencies in providing short breaks. My Bill would put a specific duty on health agencies, working in partnership with local authorities, to provide short breaks for children with complex medical needs. I would welcome assurances from the Minister that the Government will give urgent thought to the carrots and sticks that can be used to bring health decision makers to the table to work with local authorities on a sustainable and systematic basis.
Does my hon. Friend agree that given the shortage of resources that my hon. Friend the Member for East Worthing and Shoreham (Tim Loughton) identified, it is all the more incumbent on all public authorities, whether they are contiguous local authorities, health authorities, or private sector or voluntary providers, to work together to ensure that the available resources, which are stretched, are used to the best possible effect?
My hon. Friend is absolutely right. We need joined-up local partnerships and strong local leadership in every part of the country. The best use must be made of every resource, including the facilities of special needs schools.
I am sure that you will be pleased to hear that I have almost finished my speech, Madam Deputy Speaker. The third challenge that came to light in Enfield was technical—there are other hon. Members in the Chamber with more expertise on this point than me. The Enfield managers were clear that we needed a serious review of the legislative framework around short breaks, especially the situation—I was not aware of this—whereby disabled children who are placed away from home for even one night a year are subject to the full force of the looked-after children regulations. I understand that that involves a mighty amount of bureaucracy. Of course we want disabled children to be safe, but that seems over the top, and a lighter touch is required.
To back up the hon. Gentleman’s case, I point out that an organisation in my constituency, Disability and Self-Help Ceredigion, offers weekend breaks of the kind that he refers to, but it is threatened with closure because of the rigorous stipulations of the Care Standards Inspectorate for Wales. That good scheme, in which the voluntary sector works in partnership with the local authority, is under threat for precisely the reasons that he outlines.
I am grateful for the hon. Gentleman’s intervention, and I hope that the Minister takes that point on board, because we want a change to the sector’s regulatory system. A related anomaly is that disabled children placed in residential special schools for 52 weeks a year are not covered by the looked-after children provisions, and that needs in-depth investigation. I would welcome a commitment from the Minister to consult with the sector and look into how a new framework could be put in place, or how amendments could be made to the existing framework to promote good practice in short-break provision.
On that point, I shall mention a final lesson learned during yesterday’s visit. Colleagues in Enfield and from NCH were clear that commissioning guidance from the Government was needed to help every authority understand the latest thinking on how best to commission and provide short breaks. If every family across the country received the same flexible support as those whom we heard about in Enfield yesterday, life would be so much better for thousands of families. Urgent Government action, with money behind it, is required to spread best practice. I understand that the Government are receptive to that suggestion, and I call on the Minister today to commit his Department to issuing that guidance, in consultation with the sector.
My hon. Friend makes an important point, and I am sure that he in no way wishes to compromise the child protection measures that have rightly been introduced and applied. The recently introduced Safeguarding Vulnerable Groups Act 2006 regulations will apply to a large number of people. Does he agree that we need a deal of common sense when deciding how they can be used for very short-term placements, particularly as they apply to volunteers? If the provisions of the Bill can be procured, a lot of the care can, I hope, be provided by local authorities, but a lot can also be provided by voluntary agencies and volunteers; but if they are subject to regulation that has too heavy a touch, they just will not bother to provide it.
That is right; light-touch regulation and common sense are required, and I am sure that the Minister will announce at the conclusion of the debate that the Government will reconsider the issue.
In conclusion, the duty set out in the Bill would usher in the best possible regime of support for the families of disabled children, and anything less is not quite good enough. However, as we have already debated, the Bill comes with a price tag of perhaps between £2,000 and £3,000 per family, and the Government have said that they cannot support the Bill for that reason. The strength of parliamentary support for the Bill is shown by our early-day motion, and by the number of MPs who seek to contribute to today’s important debate. Politicians of all parties, including a large number of Government Members, want the Bill to succeed. Nearly half of hon. Members have signed up to support the Every Disabled Child Matters campaign. Of course, I recognise that there are costs attached to the proposals in the Bill, but I repeat that they pale into insignificance compared with the costs of family breakdown and full-time residential care which arise when families with severely disabled children are left unsupported.
As I have acknowledged, the Treasury is currently conducting its own review of support for the sector, together with the Department for Education and Skills, and I understand that the review has already identified that short breaks are a high priority. That is to be welcomed, and I hope that the conclusions are announced as soon as possible. Extra cash plus best practice guidelines will go some way towards meeting the needs of the sector, but that will not be enough. Ultimately, a new legal duty, as set out in the Bill, will be required.
Many people are watching our proceedings with fervent interest. Families with disabled children have already waited far too long for the support that they need and deserve, and they will be desperate for a sign that the Government intend to act decisively. If we do not make progress with the Bill today, it must be replaced, not by fudge or prevarication, or by warm words only, but by a clear plan of Government action that will advance us towards our end, which is ensuring much more help, especially short breaks, for the heroic families of severely disabled children. Nothing less will do.
It is a great pleasure to support the hon. Member for South-West Devon (Mr. Streeter), who has succeeded in coming high up in the private Member’s Bill ballot, who has chosen an excellent Bill to support, and who has spoken eloquently on behalf of children who desperately need the care, breaks and support that his Bill would give them.
This is an interesting and exciting time for people campaigning for children with disability, because after a long time, debate on the subject has risen to the top of the political agenda, and I want to put today’s debate in the context of that wider discussion. To start off, I shall discuss the No. 10 strategy unit report “Improving the life chances of disabled people”, published in 2005, which said:
“Parental stress resulting from a lack of local support has been given as a reason for children being placed in residential provision.”
It went on to highlight the absurdities that result when local authorities have traditionally invested in residential placements instead of in supporting a child in the family. It gives an example:
“A county council in England provides services to 729 disabled children in its area. But 40% of its disabled children’s budget is spent on 27 children in long-term residential placements. Provision for these children costs an average of £46,336 each per year. The other 702 disabled children receive services from the remaining budget, including outreach, break holiday, portage and short term breaks. Short term residential breaks cost on average £6,082 per child per year. Holidays cost £750 per child.”
The No. 10 strategy unit report highlights the fact that a lot of money is being spent on providing breaks and respite care for children, but it is not always being spent in the best possible way.
I am not arguing against residential placements, because for some children, that is the appropriate response. A lone parent with two children came to my advice surgery, and the elder of the two children was a teenage boy with autism. He had such profound behavioural problems, linked to his autism, that his parent simply could not cope. She and her other child were in danger in their home because of that older boy. I worked with the local council, and that child was placed in a residential setting because that was appropriate for him, but there are many other children who could be supported in their own homes if their families had appropriate short-term breaks.
I cannot recall whether the county council that my hon. Friend mentions is my local council, but it certainly could be. Does she not think that it is important to keep the focus on the fact that the provision of permanent or semi-permanent residential accommodation should be determined by need, and not by finance? From my experience, those who have significant wealth find it somewhat easier to get that accommodation, as they can use their wealth to pay for provision, but those on low incomes are stuck when it comes to making the relevant choices for their child. Given that context, I hope that she is not suggesting that long-term provision, which has proved valuable to a small number of my constituents, should be cut in any way.
My hon. Friend makes a good point which, like the arguments that I shall offer the House, emphasises the importance of looking at the needs of the child within the family. The services that we provide should be based on a thorough assessment of those needs. For some children, a residential placement is the right option, but sadly, for many children, a residential placement is the default position when the family breaks down. If the family is properly supported and, for example, receives short-term breaks, it will not break down and additional resources will not have to be spent on an unnecessary and often inappropriate residential setting. We have to put the needs of the child and the family first, and respond to them appropriately.
My hon. Friend hinted at the point that I am about to make about the appropriateness of residential places. Councils sometimes need to use residential accommodation that is many miles away from the child’s home. Does she agree that that can create far greater problems, because if someone is placed in residential accommodation far from their family and loved ones that only adds to the problems that residential care was supposed to solve?
My hon. Friend makes an interesting point. Specialist residential care is often provided far from the family, because it cannot be provided in every locality. A limited number of children require it, so there is a regional or sub-regional centre to which they are referred. I do not want to become bogged down on the subject of residential care, and I shall simply point out that the No. 10 strategy unit has identified the fact that it can take a disproportionate amount of money out of the local authority budget. If alternative provision is made to support families, the budget could be better spent on responding to individual needs.
It is not a question of becoming bogged down, because it is essential to look at that issue in the Bill, especially given the question of finite resources. Does my hon. Friend accept that residential care, including care in specialist regional or sub-regional settings, includes residential education? Some of my constituents cannot access residential education because of budgetary pressures. We must consider the needs of the small number of children who would benefit from expensive residential care/education, quite apart from the benefit for their families, otherwise there is a danger—
Thank you, Madam Deputy Speaker. I hope that I have made it clear that I agree with my hon. Friend. It was obvious in the case of the parent who approached me that she and her child needed expensive provision. I argued with my local authority on her behalf, and succeeded in obtaining a placement. The family is now settled. The mother and her younger child are safe in their home, but they can visit their son and brother in the residential placement, where he receives education.
By the end of the debate, my hon. Friend the Minister will have received a long shopping list of requirements, as we have highlighted the fact that the short-term breaks for which the Bill makes provision are only part of the issue. I shall come on to the parliamentary hearings that I held with my right hon. Friend the Member for Coatbridge, Chryston and Bellshill (Mr. Clarke), in which we learned about the full extent of the needs of children with disability, including general social care needs. First, however, I wish to point out that although the existing legislation places a general duty on local authorities to respond to the needs of children with disability, including assessing whether they need short-term breaks, there is no duty on them to provide those breaks. Such provision is a key feature of the Bill introduced by the hon. Member for South-West Devon. The importance of short-term breaks was highlighted in the parliamentary hearings that I was pleased to undertake with my right hon. Friend. We were pleased that the Chancellor of the Exchequer made the needs of children with disability a key part of the examination that he undertook before the comprehensive spending review and we, and many other colleagues, responded positively. We contacted Members on both sides of the House, who joined us in a series of hearings that were supported by the consortium of children’s charities that back the Bill.
We were pleased, too, that eight Ministers across five Departments attended our hearings. Many of the 308 oral and written representations that we received dealt with the subject of short-term breaks. Parents gave powerful testimony in which they said that they wanted regular, reliable, flexible, enjoyable and frequent breaks of sufficient quality to provide more disabled children and their families with valuable opportunities to enjoy more time together, as well as more time apart. Traditionally, a short break is a break in a residential setting but, as the excellent Library research paper on the Bill points out, a wide range of short breaks is available. The Shared Care Network has provided a definition of short breaks:
“Short breaks provide opportunities for disabled and other vulnerable children and young people to spend time away from their primary carers. These include day, evening, overnight and weekend activities, and take place in the child’s own home, the home of an approved carer, or any other community setting.”
There are therefore many ways in which we can fulfil the requirement in the Bill to help families. The traditional break is a facility-based overnight short break, in which children are looked after in a home in their town. In a family-based overnight short break, approved carers come to the family home, and day care is another option. Short breaks are not necessarily overnight breaks—it is just as important for a family to have a break during the day, and sitting services are offered in some parts of the country, in which the sitter goes to the child’s own home. There are overnight sitting services, and befriending services, in which volunteers befriend a child and their family, and engage in activities with them. Community and leisure activities, too, are arranged by various organisations.
What distinguishes a short break from a service to a child that may coincidentally provide time off for their carer? First, the decision to provide the short break should be based on an assessment of the whole family. The assessment should address both their personal and social needs, and the short break should occur on a regular and planned basis. It should be part of a support package that is regularly reviewed. When my hon. Friend the Minister reviews these services and short breaks, he should consider the full spread of short breaks so that families are offered choices and can select the kind of break most appropriate to their needs.
Sadly, we found in our parliamentary hearings that there was an insufficient spread of breaks across the country and a lack of choice. A study by Mencap in 2006 found that seven out of 10 families of disabled children had never been offered a choice of short break services. Furthermore, six out of 10 families said that they did not get a short break that fully met their needs. There is no clear entitlement to legally enforceable short breaks for families with disabled children, nor are there sufficient duties on local authorities or health agencies to provide breaks. That has led to unacceptable variations in service provision and has prevented families from accessing the breaks that they need in order to continue to function.
As a direct consequence of the shortage of short breaks, rates of costly placements in residential care settings for seriously disabled children, often miles away from their families, as we said earlier, continue to rise. As one parent told the family hearings,
“It doesn’t take a rocket scientist to work out the savings if my authority provided me with one night a week respite—say, £500 per week, as opposed to £4,000 a week for a residential placement.”
So when we talk about money and the consequences of the Bill, we need to consider how the money is spent and whether it is being spent in the right way. Another parent told our parliamentary hearings:
“Respite for my daughter provides some social life with her peers outside school and gives time for me to spend with my other children and recharge my mind and my body. I need to be a mum, not just a carer.”
The lack of short breaks was the biggest single cause of unhappiness with service provision in submissions to our hearings.
We were very much aware of the special needs of certain groups within the general definition of disability. There are special problems for children with autism, and during our inquiry my right hon. Friend and I visited the Spark centre in Tower Hamlets. I was interested to hear the comments from the Opposition Benches about what is happening there now. The centre cares for children with autism. We saw the good work that it is doing, we spoke to the people who work there and to parents, and we played with the children—there is a very good playground outside. In our discussions they highlighted the particular problems often faced by children who have a disability on the autism spectrum.
The briefing sent to us by TreeHouse, the national charity for autism education, also points to the experience of parents, and quotes one parent as saying:
“Most parents expect sleepless nights when their children are babies and it might be difficult for a while but you know they’ll grow out of it. When our son turned four we realised actually he was never going to grow out of it, and that was 10 years ago.”
The TreeHouse submission goes on to say:
“The relentless nature of the care required is brought home by another parent with whom TreeHouse works, who said:
‘I was looking after him on my own and had to go to the toilet. I wasn’t long, but by the time I came out he’d emptied a bottle of washing up liquid all over the floor. I love him so much, and we do have lots of good times, but when you’ve been up all night something like this can be the last straw: you just want to cry and give up but you can’t, not even for a few minutes, because of what else he might do during that time.’”
One indication of the toll that providing that level of care can take is the high rates of unemployment among parents of autistic children. The Office for National Statistics has suggested that the unusual combination of high educational status and low economic activity among parents of autistic children probably reflects their heavy caring responsibilities. That is reflected by many parents of children with disability. In the report on the parliamentary hearings we identified poverty as a serious issue for many of these families. The parents of children with autism whom I have met and the submission from TreeHouse emphasise the passionate support of those parents for their children. They want their children to have appropriate education and appropriate care at home and will do all they can to achieve that.
I thank my hon. Friend for her continued patience. During the hearings, did she take evidence or hear comments about mental health difficulties among carers facing situations such as the one that she described, when a parent returned from nature’s break to find washing up liquid all over the floor?
I have the report here. I do not recall evidence specifically about mental health problems, but there was a huge amount of evidence of stress. As the definition of mental health includes stress and depression, I would say that mental health problems can result from the huge pressures that the families experience. However, I emphasise that time and again, parents told us how much they loved their children and cared for them, and that their children bring joy to them. It is not all doom and gloom.
Before the Minister gets worried that my speech is all doom and gloom, I want to give him some good examples as well, to balance that. A child with a disability can bring new experiences to the family and educate them in many ways of which they would otherwise not be aware. It is the pressures upon the family that we as Members of Parliament have a responsibility to address.
Even if a place is found to provide respite care for children with autism, because of the severe behavioural problems that some children with autism have, the staff who run those centres and the other children there may not be able to cope with them, so the parents lose the respite care that has been identified for them.
Does my hon. Friend recognise that that is echoed all round the country? I had an e-mail from a parent of a disabled child who also works to identify the needs of other disabled children. She praises the services in Slough, but points out that there are many who could benefit from more appropriate respite—for example, children who have autism and behavioural problems are difficult to handle without one-to-one support. It is common around the country for that particular group of children to be even more excluded than the general group whose needs we are discussing.
My hon. Friend makes an excellent point. It goes back to my earlier comments about the need for a variety of provision. A residential setting for respite and short breaks is not the answer for many families. We need a full range of provision. For some children who have behavioural problems, a better course of action is respite care in their own home—a short break for their families, with a carer coming into their home. Many children on the autism spectrum and those with behavioural problems like the security, comfort and familiarity of their own surroundings and do not like being moved to unfamiliar surroundings. If a trained carer can go into their home and offer care and support, the family can visit the cinema or go shopping and have a break from the child.
The second group that we identified are those children with palliative care needs and serious health problems who are kept alive by medical intervention. Between 1997 and 2000, there has been a 77 per cent. increase in the number of children who are dependent on oxygen ventilation, and during those years there has also been a 60 per cent. increase in the number of children who are tube-fed. In 1998-99, there were an estimated 6,000 technology-dependent children. Our report highlighted that specialist health services for disabled children are frequently overstretched and struggle to meet the demands of children with increasingly complex health needs, rare disorders and palliative care needs.
Does my hon. Friend accept that in too many parts of the country, the health authority and the local authority have not recognised the fact that there is a change in the spectrum of children with disability because of advances in medical technology? There is a higher proportion of children with a very high level of dependency, who previously would not have survived. Services need to be reconfigured to meet those high dependency needs, without reducing services to all the other disabled children across the piece.
My hon. Friend is absolutely right. We all welcome advances in medical technologies that keep often profoundly disabled children alive, but they do have knock-on consequences. General health services may or may not be available for those children, but the specialist respite care that they need is rarely available.
At this point, I would like to pay tribute to the hospice movement. Brian House, which is part of Trinity hospice in my constituency, offers respite care to many such children and it is a wonderful establishment. It is a pleasure to visit, and the children and their families benefit so much from that care. However, an increasing number of children need exactly that sort of joint working between health services and social care to ensure that their future needs, which should be identified at birth, are properly planned for. Clinicians in hospitals are not just identifying a health condition, but planning for the future with social care professionals to ensure that those families have the support that they ought to have.
My right hon. Friend and I saw an excellent example of good practice in this area when we visited Manchester as part of our inquiry during the parliamentary hearings. We met a woman with the gloriously appropriate name of Joy, and she was a joy. She had her own children who had grown up, and she had adopted a child with profound disability. She was providing respite care and short breaks for a profoundly disabled baby, who was tube-fed and had had all sorts of operations. She was an example of the joint working between health services and social care that should happen, and had happened. The agencies had come together and invested in her; they had put in specialist equipment, which meant that she was a resource that social services could use to provide appropriate short breaks for children with profound health needs as well as disabilities. Moreover, because of her training and the sort of person she was, the parents of the little baby we saw were fully confident that she could look after their child. One of the concerns parents have about short breaks is whether the setting will be run by people who understand their child. She was an example of someone who did, and I would like to see that replicated throughout the country.
I would like to give the Minister some good examples from my constituency of Blackpool, in case he is getting depressed. There are good examples—not enough, but there are some, and we want more. I have spoken with staff in Blackpool’s children with disabilities team, and they are so enthusiastic about the work that they do. They told me, with a lot of pleasure, about their commitment to families in the local area. They emphasised that they carry out a thorough assessment of the child’s need within the family, and they offer a range of services including short-break care, home care, a variety of support services, professional sit-in services, access to specialist childminders, direct payments and foster placements. They also have links with other agencies so that they can help families if they need to be referred to them. They told me that they insist on looking at the child within the family and assessing their individual needs, rather than asking the child to fit into whatever service exists. They try to model services for that child and support the families in caring for their children, while enabling the children to access new experiences in the community. At present, the children with disabilities team is offering support to 186 children from families across Blackpool, and last year it received 69 new referrals. It uses its family link scheme to provide appropriate short breaks, and eight children are currently part of that scheme.
I discussed with the team the changes in provision. Earlier, I talked about the variety of respite care and short breaks, but if a local authority is considering the reconfiguration of services, parents immediately get worried. We had exactly such a worry in Blackpool, when the council was looking at an establishment called Westbury Lodge, which it is planning to close by phasing it out gradually. Immediately, one of the parents contacted me, desperately worried about where she was going to get her respite care. Moving to new and innovative ways of providing short breaks and respite care is an issue for local authorities when parents know of only one example.
I have spoken to parents and staff in Blackpool, and I have also visited a children’s home on Hornby road, where a new respite service will be provided. I have been able to reassure people that what happened there highlighted the anxiety of parents. When people get care in one particular way, they do not always trust the local authority to provide it in another way. I have to congratulate Blackpool council on the way in which it is dealing with that problem by helping parents and reassuring them. Another thing that I found when I visited Hornby road was not only how committed the staff are, but the way in which they tailor respite care to the needs of a particular child. Each room is altered for any new child who comes in. A young man was coming in who had autistic spectrum disorder and he had great difficulty in listening to verbal instructions, so the staff put up printed notices in readiness for his arrival. They altered one room by putting in toys that a particular child wanted. It is exactly that sort of attention to detail that is so important.
I could list some of the other good things that my local authority does—no doubt it would want me to—but I shall skip over them because even though it tells me that no families are waiting for care, there are families who would like more care. A wide range of services are offered in Blackpool, but staff tell me that they have problems in dealing with many of the children I mentioned earlier—those with behavioural problems, disabilities and Asperger’s—because they do not fall within the remit of the children with disabilities team. Other organisations have raised that issue with me, and it was also raised in the No. 10 strategy unit report. That report detailed the fact that eligibility criteria can exclude disabled children with significant needs. The report noted that eligibility criteria can exclude disabled children with significant needs. It gives an example of a local authority’s eligibility criteria:
“Of children with a physical disability only those who are unable to walk without aids or assistance are eligible for assistance… The following children are not eligible for support: children who have a mild or moderate learning disability, where this is the only disability; children with ADHD, ADD, Oppositional Defiance Disorder or similar behavioural diagnosis unless this is secondary to substantial and permanent disability”.
In other words, some of the children who need the care most are excluded because of definitions. Children with mental health problems are also excluded.
The strategy unit report continues:
“Local eligibility criteria can result in a ‘postcode lottery’ of provision—services are provided on the basis of where people live and on individual parents’ ability to lobby for provision—rather than on an entitlement based on need.”
That leads us back neatly to the crux of the debate about the Bill.
My hon. Friend makes a relevant point about locally set eligibility criteria and our concerns about the Bill, although we welcome its principles. If we enforce a local duty, locally set eligibility criteria could be jeopardised further. My hon. Friend has already outlined her concern that the threshold should be shifted up rather than down.
My hon. Friend is right to point out the tension between the Government setting standards and local authorities’ implementation of them to meet the assessed needs in their area. The Government have set many fine policies. For example, standard 8 of the national service framework for children for England provides that local authorities and primary care trusts should ensure:
“All children and their families who are assessed as having needs that can only be met by short term breaks are offered without undue delay a range of services from which to choose. This includes home and community-based breaks as well as family-based and residential breaks and access to childcare and sitting services.”
However, that does not happen everywhere. If we allow local authorities full scope to develop services for their areas, children’s needs will not be met in some areas. If the Government do not want to place a duty on local authorities—I understand my hon. Friend the Minister’s reservations about that—they must examine other ways of achieving the outcome that we all want.
Measures can be put in place to ensure the implementation of what the Government set out in the national service framework. In the “Every Child Matters” programme, the Government state that they are committed to increasing funding for short-term breaks through the carer’s grant. This week, an announcement was made of additional money for emergency respite care. However, we must recognise that we have a responsibility to ensure that, in allowing local government choices—I was a local councillor for 12 years and therefore understand the importance of local decision making—we do not allow the number of children who are currently let down by the system to continue to be let down.
My hon. Friend is right. How many times have we said that those who shout loudest get the service? However, families should not have to shout. They should not have to march with banners to demand services. The services should be provided and they should be co-ordinated from the beginning. When a child is identified as having a disability, there should be full co-ordination between health and social care, and key worker provision to lead the family through the morass of services that may or may not be available and offer them advice. It should not be the ones who shout the loudest but those in greatest need who get the services. Those who are assessed as having a need should have the services.
The hon. Member for South-West Devon mentioned the legal status of children who use the short-break provision. Given the time, I simply emphasise his point rather than go into detail. However, the Government need to examine the legal status of looked-after children who are placed for a short break of 24 hours, because local authorities act in different ways. They get conflicting advice from inspectors, many of whom are equally unclear about the status of overnight short breaks. I hope that my hon. Friend the Minister will examine the confusion that appears to exist in the current regulations and sort it out so that families and service providers know exactly what they should be doing.
I want to emphasise that the consequences of failure to provide sufficient short-term breaks are too serious for us to allow the position to continue. One parent told the parliamentary hearings:
“I had to have a breakdown to get help. My children almost ended up in care… yet three hours a week help prevented this—what did that cost?”
The Minister and the Government face challenges. I hope that my hon. Friend will rise to them. The debate will continue. I am pleased that the Treasury and the Department for Education and Skills review acknowledges the importance of improving services for children with disabilities, including short breaks.
The challenge to the Government is not only financial. Yes, we need the money through the comprehensive spending review to build capacity in the system, but if the Chancellor of the Exchequer gave £150 million tomorrow, he would not help the families because we need a planned process of building capacity. That includes recruiting trained staff and carers, developing Family Links, residential respite care and the range of the services that families need. I therefore look to my hon. Friend the Minister to consider, as part of his work, how best that can be done.
Should not the Government do more to identify, celebrate and spread best practice to widen the diversity of provision that my hon. Friend rightly stresses? Let me commend one example from my constituency, where we are fortunate to have students from Oxford Brookes university and Oxford university, who work through the Kids Enjoy Exercise Now—KEEN—network, which is established in some parts of the United Kingdom and the United States. It provides games and enjoyment on a Saturday afternoon for teenagers. The age difference between those who help provide the activity and those who enjoy it is not so great. It gives parents a break and does not cost much. If students in some places can do it, could not we ensure such provision everywhere?
I agree with my right hon. Friend. I gave some examples of good practice from Blackpool. One is similar to the one that he cited. My local authority runs a summer play scheme that has children with disabilities engaging in all sorts of activities, some sporting and strenuous and others less so, including origami. There is good practice, which needs to be spread. However, in some areas, the facilities do not exist and there are no people who can deliver the sort of practice that my right hon. Friend identified.
There are particular problems in rural areas. The hon. Lady mentioned the need to increase capacity, but simple issues such as finding a care worker with an NVQ in health and social care—NVQ H—in a scattered rural area such as my constituency to provide such services is especially difficult, even for the voluntary sector. However, as the hon. Lady said, the important message is about increasing capacity wherever one lives.
That is an important point, and I agree absolutely. Of course it is easier to improve capacity in an urban area, where there is access to more people, buildings and organisations that can become involved. It is much more difficult to do that in rural areas, but it is not impossible. I am sure that the Minister will work out a way of doing that. He will look at ensuring that wherever a child lives, the child and its family should have access to a range of good-quality short breaks, and that the people who provide them should be trained and properly equipped to provide for the health and social care needs of the children.
We need to ensure that the resources are made available. The forthcoming comprehensive spending review is the lifeline that families are clinging to. The Government must not let them down.
It is a pleasure to follow the hon. Member for Blackpool, North and Fleetwood (Mrs. Humble). She made an excellent contribution not only today but in last month’s debate on improving the life chances of disabled children.
I congratulate my hon. Friend the Member for South-West Devon (Mr. Streeter) on bringing his private Member’s Bill before the House. He has been an MP for 14 years, but I do not believe that he has had a private Member’s Bill before. During those 14 years, however, he has developed a high reputation for campaigning for the needs of the socially disadvantaged, whether for better treatment for drug addicts in his constituency or for the needs of poorer people in the developing world, during his time as shadow Secretary of State for International Development or now, as chairman of the Conservative party’s human rights commission. It is characteristic of him that he should use his precious private Member’s Bill slot to campaign for another extremely disadvantaged group—disabled children and their families. I commend him for doing that.
I also commend the efforts of the Every Disabled Child Matters consortium, led most ably by Steve Broach, and its constituent organisations, Contact a Family, Mencap, the Council for Disabled Children, and the Special Educational Consortium. I have been shadow Minister for disabled people for just over a year. It seems to me that the problems and challenges that disabled children and their families face are one of the most pressing issues, if not the most pressing, among the range of issues in the entire disability agenda. The efforts of the Every Disabled Child Matters consortium have moved the issue right up the political agenda, and it is to be congratulated on doing that.
I think my hon. Friend understands that, as the official Opposition, we are not able to support the Bill, not because we disagree with his powerful and eloquent arguments, nor because we think that what he said was not valid. We intend to be a responsible Government—indeed, the kind of responsible Government who deal with precisely the issues that he outlined, if they have not been dealt with by the time we get to power. If we want to be a responsible Government, we have to be a responsible Opposition. We have no idea what the fiscal or financial environment will be after the next general election, which could be as many as three years away.
I reassure my hon. Friend, however, that the issues he raised would have the highest priority under a future Conservative Government. That commitment comes right from the top. My right hon. Friend the Leader of the Opposition has spoken on many occasions of the need to improve respite provision. The Conservative party’s statement of values, “Built to Last”, which was mailed to all Conservative party members last autumn, and voted on and accepted with an overwhelming majority, stated that one of the key priorities of a Conservative Government would be clearer rights to respite care, so the commitment runs right through our party.
Why do we give such a high priority to the issue? One reason is to do with simple demographics. The number of disabled children is increasing at a significant rate. In 1975, there were 476,000 disabled children, but the figure has now risen to closer to 772,000. According to Mencap, the number of disabled children has doubled, increasing from 25,000 in 1988 to 49,000 now. Some people say that the figure is nearer to 75,000. Nearly 100 severely disabled children are born every week and there are probably 400,000 families in the United Kingdom bringing up a disabled child.
One of the most striking things about meeting families with disabled children is the tremendous bond between parent and child. I remember meeting a mother of a four-year-old boy with severe cerebral palsy. He could not walk, talk or eat unassisted, and often he could not sleep; but what he could do was communicate with his mother through his eyes. That was an incredible thing to see. Those parents want to focus all their energy and attention on the child, but the system makes them focus it all on the disability. That is why it is so important that we have this debate.
There has been a lot of discussion in the media this week about the role of families, prompted by the tragic murder of Billy Cox. My right hon. Friend the Member for Witney (Mr. Cameron) has led the national debate, by saying that if we are to deal with the root causes of the problems we must look at family breakdown. Disabled children, too, suffer from family breakdown. The Mencap report to which my hon. Friend the Member for South-West Devon alluded stated that eight out of 10 families with disabled children say that they are at breaking point because of a lack of access to short break provision, while 76 per cent. say that the pressures and stress of bringing up a disabled child are bringing them close to the point of family breakdown. Indeed, 9 per cent. of such families say that their situation has directly led to separation. The result is an army of lone parents battling against the odds to bring up a disabled child. How ironic it is that the very moment at which families most need the support of two loving parents is the precise moment at which they are most likely to break up.
This is perhaps an appropriate time to ask the hon. Gentleman precisely how much additional money he anticipates committing to the issue, because being in government is about making such priorities. In the context of the youth social services budgets that are about to made throughout the country, will he commend those local authorities that increase their social services budgets for such provision in the next few weeks?
I am grateful to the hon. Gentleman for his intervention. He will have heard earlier that the estimated costs of the measures in the Bill are thought to be between £150 million and £200 million. However, as I was about to indicate, there is a much wider issue about the type of support that we give to families with disabled children. I urge him to address his comments to those on his own Front Bench, who are in a position to decide whether they want to make that investment. We are in opposition, and, as I have said, as a responsible Opposition we are not going to make financial commitments when we do not know what the fiscal environment might be if we took office.
I thank the hon. Gentleman for giving way again. I hear his answer, or non-answer, to one half of my question. On the second half, social services budgets are being set—for example, by Nottinghamshire county council—in the next few weeks. Should such councils increase their budgets to allow better provision for my constituents who have disabled children? When they set their budgets next month, should they spend more money?
I hope that all social services departments make adequate provision for disabled children, but the financial environment that those departments live in is largely affected by national Government decisions and the funding settlement that they receive from the Government. It is not simply in the gift of local social services departments to increase spending to the levels that they want if the funding settlement from national Government has not been generous, as I know from my own county council, Surrey, which I think receives the second least-generous financial settlement in the country. It is therefore finding it difficult to offer the support that it would like to.
Returning to the argument that I was making, family breakdown leads to social breakdown for many sections of society and the same is true for disabled children. One example of that is the school exclusion statistics, which the Minister, who is from the Department for Education and Skills, will know well. A disabled child is 13 times more likely to be excluded than a non-disabled child, and 64 per cent. of exclusions are of children with special educational needs. Disability is a challenge not just for disabled people, but for us all.
Has my hon. Friend shared my experience of surgeries and been faced with a family who are at breaking point—at the end of their tether—because of the hoops that they have been made to jump through simply to obtain a statement of special educational need? I have had that experience with well-educated families who have been in tears at my surgery because of such a situation. I just wonder how on earth those who are less articulate and less well educated manage to cope.
My hon. Friend makes an extremely important and powerful point. I have two constituents whom I met in the last six months and who said that they have had to spend more than £10,000 on legal fees to get the education package that they require. That is why my right hon. Friend the Member for Witney set up a special educational needs commission under Sir Robert Balchin to consider whether the statementing process can be improved so that it is easier to deal with not just for articulate parents, but for parents who do not have the same advantages, so that they too can benefit from the right education package.
I do not want to get sidetracked into a debate on SEN as we are discussing many other important issues today, but this matter is important for the parliamentary record. We do not want to give parents the impression that there are charges related to the special educational needs and disability tribunal process, should their child need to go through it. That point must be made clear: it does not need to cost anything. The Department is considering the demographics and the make-up of those people who go through the SENDIST process. The number of people involved is very small—well under 1 per cent., although I do not have the exact figure at my fingertips. It is worth recalling the fact that parents do not have to pay a fee. We do not want to give that impression in today’s debate.
I am grateful to you, Madam Deputy Speaker, and I shall not yield to the temptation to respond as forcefully as I would like to the Minister’s evasions.
Moving on to the substantive issue, I thank my hon. Friend the Member for South-West Devon for the name that he chose for the Bill. I was with him when he made his final decision and I had a small input to it. The Disabled Children (Family Support) Bill has a good name that encourages us, precisely as the hon. Member for Blackpool, North and Fleetwood said, to take a wider view of what respite care can be. There is an excellent children’s hospice, Christopher’s, just outside my constituency. It offers short breaks, or a weekend or a week, giving residential care for children with life-limited conditions. It has been built by the enormous dedication over many years of volunteers throughout the community, who have helped to run the place and to raise funds.
The dedicated staff at Christopher’s say that they see the future of respite care not as building more such hospices and more residential homes for children to go to for a week or a weekend, but as providing more respite care in the home and being able to send someone to people’s homes—say, for one night a week or one night a fortnight, and staying from 4 o’clock in the afternoon until 11 o’clock at night—to feed and wash the child and put them to bed, which would enable the parents to go out to the cinema or for a meal. More often than not, parents want to do something with a non-disabled sibling, which they would not otherwise be able to do. That wider interpretation of respite is important.
A couple more significant aspects to respite and family support are worth mentioning, one of which is education. Getting the right education package is incredibly important to parents. I remember talking to the mother of a severely autistic 12-year-old girl who said that term time is vital for her to recharge her batteries.
Work is another important aspect of family support. For the parents of disabled children, work can be incredibly significant as it provides a different social context from the often pressured environment of the family. It helps them to prevent themselves from falling into benefit dependency and stops them falling into poverty. We know that 53 per cent. of the children of workless households grow up in poverty compared with just 20 per cent. of children growing up in households where at least one adult works.
However, in those areas of what might be called a broader vision of respite, progress has been disappointing, which is why the Bill is so important. Conservative Members welcome this week’s Government announcement of an additional £33 million to carers, including £25 million for emergency respite, but I am sure that the Minister accepts that emergency respite is just the tip of the iceberg. We need a sustained programme of investment in support for parents so that the need for emergency respite does not occur as much as it otherwise would.
We need to consider the role that education plays in supporting families and making it easier for parents to get the right education package for their children. The hon. Member for Blackpool, North and Fleetwood mentioned TreeHouse, which is an excellent school for autistic children. All but one of the children whom I saw on my visit to the school was being funded by the local authority, but in most cases parents should expect to have to go to a tribunal before they can get their child accepted at TreeHouse. That makes parents work incredibly hard, despite the challenges that they already face.
We know from a Joseph Rowntree Foundation report published in December that this country has the highest rate of workless households with children in Europe. We also know that mothers with disabled children are seven times less likely to work than other mothers and that a third of disabled children are growing up in poverty.
I do not want to be entirely negative and the Government have made important progress. We have had the carers strategy in 1999; the Carers and Disabled Children Act 2000, which introduced direct payments; the Special Educational Needs and Disability Act 2001, which strengthened rights to get the right education package; and the Carers (Equal Opportunities) Act 2004, which gave local authorities a duty to tell carers of the care packages to which they might be entitled. However, I am concerned about what we have heard this week from the Government, which I am sure is in response to the Bill introduced by my hon. Friend the Member for South-West Devon.
For example, in an article on Wednesday in the Daily Mail the Chancellor talked about having another huge consultation on the future of carers—the biggest consultation ever. It is not that consultations are not important, but we have already had a lot of them. In 1999, we had a report on the carer’s strategy to tackle worklessness, but 20 per cent. of carers of disabled children are still unable to work, often because of disincentives in the benefits system. That report was also going to deal with direct payments, but still less than 1 per cent. of all the support given to disabled people is provided through direct payments.
The life chances report published in January 2005 was another excellent report, on which there had been wide consultation, but it included a powerful target that, by 2014, families with disabled children should receive as much support as they need to be able to function as a family. That is a very important target, but what we need now are actions towards meeting that target, not just endless consultations.
Despite his apparent criticism of the consultation proposed, does the hon. Gentleman accept that it has been welcomed by those organisations that represent carers as a valuable opportunity for them to shape the development of the carer’s strategy. I am surprised that he is seeking to disagree with those carers associations, or perhaps just seeking to make a party political point.
I am seeking to do neither of those things. I am certainly not trying to make a party political point, as I hope that the hon. Lady will recognise that I have given the Government credit for the legislation that they have passed. Nor am I saying that the consultation is a bad thing—obviously, the good thing about consultations is that they allow us to learn more about the situation and to implement the right policies as a result. What I am saying is that we need action, not just consultation. A lot of big reports have been published that have had a great deal of consultation, but we need to move beyond consultations to action. We need to see things happening. My concern is that another consultation will take yet more time and that, while there will no doubt be more important thinking, further delays will take place before something is actually done.
To conclude, let me briefly point the Government to where they could take some important action to make life better for families with disabled children. First, they could streamline the incredibly complicated assessment processes. At the moment, families with disabled children must be assessed by the wheelchair service, the housing department, occupational therapy, residential care and the blue badge scheme, and by the local education authority for advocacy needs. A single assessment process would streamline the system, massively reducing the stress and pressure on families with disabled children and saving a lot of money: of the £5.4 billion spent on supporting families with disabled children, £1.1 billion is spent on the assessment and commissioning process. By comparison with that, the £200 million cost of my hon. Friend’s Bill is peanuts. We could therefore save a lot of money on the assessment process. As has been discussed, we also need to consider reform of the statementing process.
Finally, however, we need to consider the benefits system. We have talked about the importance of work for many families with disabled children, but they can apply for a large number of benefits. You were in the Chair, Madam Deputy Speaker, for our debate about improving the life chances of disabled children, in which I told the House that for the eight benefits to which families with disabled children are eligible, there are 273 pages and 1,118 questions that parents are required to read and answer. The complexity of that system makes parents concerned about doing anything that could threaten that benefits package. That is why they worry about whether it is wise even to think about looking for work.
This debate is about improving support for families at the most vulnerable moment in their lives. Improving access to short breaks would be a small but significant step in improving support for those families. However, a much wider root- and-branch reform is needed of the support offered to families with disabled children. Some 400,000 families look to the House today not just to listen to their concerns but to take action. I hope that the Government’s response will give them the hope, encouragement and support that they richly deserve.
It is always a pleasure to follow the hon. Member for South-West Surrey (Mr. Hunt) and particularly today, when he outlined the official Opposition’s response to the Bill with commendable clarity and in a way that will not only be helpful to us during the remainder of the debate but as discussions of these issues inevitably continue.
I also assure the hon. Member for Banbury (Tony Baldry), who said at the beginning of the debate that he would not be too happy if people were encouraged to speak for too long, that the good news is that I have not been encouraged to speak for long; the bad news is that I do not need the encouragement anyway. I hope, however, to put on record some views that are consistent with the excellent speech of my hon. Friend the Member for Blackpool, North and Fleetwood (Mrs. Humble), to which I hope to return.
I congratulate most warmly the hon. Member for South-West Devon (Mr. Streeter) on his outstanding speech, which was comprehensive and showed great clarity. As one who recalls that our paths crossed on international development in earlier days, I was not at all surprised by the sensitivity that he displayed and his understanding of the issues. Whatever the outcome of our debate, and whatever progress the Bill makes, I hope that he will feel that his contribution has been very substantial. If we can achieve what both sides of the House want on such important issues, he should be reassured that his contribution has been immeasurable.
The hon. Gentleman was particularly generous. He was rightly generous to you, Madam Deputy Speaker. Within the rules of the House and the neutrality that you must exercise, you have shown an outstanding commitment to these issues—one that will long continue and that we appreciate. He was rightly generous to the disabled children’s consortium and the Every Disabled Child Matters campaign, which are following our discussions with great interest. He was particularly generous to my hon. Friend the Economic Secretary, which Labour Members will especially welcome. Despite the fact that, for understandable reasons, my hon. Friend is not in the Chamber today, he has been very much the inspiration behind the remarkable progress made in the past year on issues of disabled children and their families. He knows that we depend very much on his input and on the Treasury to make still more progress, and we are keen to assist him in the objectives that he has set publicly, including in his major speech this week.
As I said, my hon. Friend the Member for Blackpool, North and Fleetwood referred to the parliamentary hearings on services for disabled children. We were both very happy to lead in those hearings, which reflected a remarkable spirit of all-party participation and the knowledge that parents, carers, organisations for disabled people and particularly disabled children, and in one case a disabled person, were giving us the benefit of their day-to-day experience in non-controversial all-party hearings that were quite intense. They were willing Parliament, and by implication the Government, to make progress in this important area.
I hope that the results of the hearings, the recommendations that we made and the moving evidence that we heard still remain part of the agenda. There is a heavy responsibility on my hon. Friend the Minister when he responds to the debate. Whatever happens to this important Bill, I hope that our recommendations will still be part of the Government’s agenda. That would be right. Our hearings were signalled in the Chancellor’s last Budget speech, where he said that he was considering carefully the issue of resources for disabled children and was looking for advice on how they should be best allocated. That was followed by an invitation to my hon. Friend the Member for Blackpool, North and Fleetwood and to me to lead the review, to take the evidence, to make it inclusive and to visit various parts of the country, as she said. We did all those things.
We were particularly impressed by what we saw in Greater Manchester and in some of the London boroughs, particularly Tower Hamlets. We were impressed, too, by the genuine commitment of the eight Ministers who came, gave us their views and often sat through the review and listened to what was said. Later they came to, I am sure, both of us privately and told us how strongly and passionately they feel about the issue and how they, too, want to make the kind of progress that we want to see. I hope that the Minister will confirm that the conclusions of that review, given that they were meant to feed into the comprehensive spending review that is still going on, are still part of that important agenda. If he gives us that assurance, that will be welcomed greatly by hon. Members on both sides of the House.
The issues that we are discussing seem to be clear, and it is not surprising, as the hon. Member for South-West Devon rightly suggested, that there is more impatience and frustration perhaps on the issue of disabled children than on other disability issues. It was there in the things that people told us. There was widespread dissatisfaction with existing provision levels. The plea for more short breaks and for the resources that make them possible was outstanding and cannot be ignored. It is not being ignored today. It should not be, and it will go on.
We also heard that eight in 10 parents rated social services as poor and that five in 10 rated education services and health services as poor. Recently, the Economic Secretary gave assurances in the House, in answer to a question that I put to him during Treasury questions, that the final Treasury/Department for Education and Skills review of young people’s services will respond individually to each recommendation in our report. I welcome that, particularly in respect of short breaks. I trust that the Government will respond as well to what we said on speech and language services; shortfalls in equipment; the necessity of early intervention, which is hugely important, as we heard in the evidence and as our discussions went on; and the difficulties on transition to adulthood, which again was one of the most important matters that we discussed—it was raised repeatedly, not surprisingly. That period of transition, as I am sure the hon. Member for South-West Devon will agree, is for many individual families one of the most traumatic in their lives. As a society we have not fully addressed that, certainly not in the universal way that the organisations that are following our debates today would rightly expect us to do.
There is, it seems, a clear and long-overdue groundswell for progress in the field of children and disabilities, and the further attention brought to it by the hon. Gentleman in this Bill is a welcome addition to that interest.
I want to turn briefly to the issue of short breaks. A whole session of our hearings was dedicated to the theme of family support and children’s services. Not surprisingly, short breaks were frequently raised, because all the evidence is that, if families are without support, if carers are left on their own, if there is not the joint planning between public bodies and the agencies, very often the relationship breaks up and two people are institutionalised where it is inappropriate for either of them to be in any situation other than receiving the kind of support that society wants to see. Indeed, that issue was mentioned unprompted in three in 10 of the written submissions to our review. That seems to be a key priority in terms of improving services. It is right that the hon. Gentleman should have considered that an important part of his Bill.
A planned and sensitive approach will, as has been said, also reduce long-term costs and, more importantly, remove the trauma and misery down the line. As one parent told us:
“I had to have a breakdown to get help. My children almost ended up in care…yet three hours a week prevented this—what did that cost?”
That was an individual case. The response in the end came, although later than we would have expected. We are seeking to achieve such a response in so many cases, so that we not only have best practice—as has been rightly said, not least by my hon. Friend the Member for Blackpool, North and Fleetwood, there are many examples of that—but best practice becomes the norm.
I look forward to hearing what my hon. Friend the Minister has to say about the Bill, because his speech will be important. However, whatever his response, the focus provided by the debate, which comes so soon before the spending review, has already brought a welcome commitment from the Government to make progress on the issue. Indeed, that commitment may have come earlier than might otherwise have been the case—in “a matter of months”, as the Under-Secretary of State for Health, my hon. Friend the Member for Bury, South (Mr. Lewis), who has responsibility for care services, said on the radio this week.
The case for more resources is overwhelming, not least because of the huge increase recently in the population of disabled children: 62 per cent. over the past 30 years. Of course, we all greatly welcome medical progress, but as a society we must respond with the services and care that are inevitably needed to follow up that progress. That is only right. As we heard in evidence to the parliamentary hearings, debate continues about how we allocate available resources and how the Government can work with local authorities to ensure that those resources go where they are intended to go. Even when we met representatives of the Local Government Association, who gave excellent evidence, we could not resolve the question whether resources should be ring-fenced. I say that openly. Anxiety remained not only about whether more resources would be made available, which is why we look forward to the comprehensive spending review and why we made our recommendations in that regard, but also that they should be directed at caring services, to recognise every case in every part of the country, whatever the local authority. Universal standards must be profoundly set.
Only this week, my hon. Friend the Economic Secretary said that
“high quality, timely provision needs to be universally in place to prevent deteriorating outcomes and to maximise potential”.
I welcome that declaration and hope that a strategy is developed to establish the objectives that my hon. Friend has set both as a Back Bencher and as a Minister. As Contact a Family warned us:
“It is our view that the criteria for short breaks are constantly being harder to meet so that none but the most desperate are able to get access to any sort of break now.”
I realise that local flexibility breeds innovation and that, as we have said, there are examples of good practice, and I fully understand the Government’s policy of incentivising local authorities. However, it is essential to set in stone national minimum standards—if not in the Bill, by some other means—and we very much look to the Minister for that. I am sorry that I seem to be placing so much on my hon. Friend’s shoulders, but I am sure that he is capable of handling it. We want no more postcode lotteries. The Government must ensure that their national indicators—I understand that that is the terminology they use—fulfil their objectives.
The debate has indicated that there are problems that have a huge impact on the quality of life for families, parents and siblings. It is unacceptable that only 16 per cent. of mothers with disabled children are able to work. On their own the ideas promoted in the Bill would not change that situation, but they remind us that when dealing with policy for disabled children we need to consider its impact on more than one life—even as we acknowledge that the rights and needs of the child are paramount. Whatever happens today, the hon. Member for South-West Devon has done a great service for the cause of disabled children.
We are, it has to be said, expecting much from the Government. If, as a result of the Bill, we make the sort of progress that those who contributed to our review were passionately demanding, and in many ways rightly expecting, I think that we will all, and especially the hon. Member for South-West Devon, feel that we have a right to the spring in our step as we leave the Chamber, because we will have made further progress towards achieving what we all want to achieve. We will have contributed to improving the quality of life for so many disabled children and so many people who are dedicated to their future.
I congratulate the hon. Member for South-West Devon (Mr. Streeter) on achieving a high position in the private Member’s ballot, and on choosing this particular issue for the subject of his Bill. I have been most impressed by his energy, enthusiasm and commitment over quite a difficult few weeks, as he put everything into trying to achieve what we all wish for—to improve the outcomes for disabled children and their families.
The Bill comes at an interesting time when the Government are making great headway on discussing, debating and consulting on these issues. The process started earlier last year with the Government’s review for services for children and we now have a policy review on children and young people. I was pleased to attend a meeting at which Lord Adonis specifically referred to the issue of providing services for families with children with disabilities. We can therefore see today’s debate as one piece of the jigsaw—part of a very important overall picture, in which we as a nation have to make a greater commitment to families and children with disabilities. As one crucial piece of that jigsaw, I hope that our debate will keep taking us further forward in achieving our objectives.
I was very pleased to serve on the cross-party panel of MPs that was established to conduct hearings on services for disabled children. I would like to congratulate the right hon. Member for Coatbridge, Chryston and Bellshill (Mr. Clarke) and the hon. Member for Blackpool, North and Fleetwood (Mrs. Humble) on their chairmanship and vice-chairmanship respectively. The hearings were, of course, supported by Contact a Family, the Council for Disabled Children, Mencap, the Special Educational Consortium and Children Now. I also congratulate those organisations on the production and launch of the Every Disabled Child Matters manifesto and campaign. The fact that it was necessary to produce a separate manifesto was very telling, because, in so many respects, the needs of disabled children are not sufficiently well covered by the Every Child Matters agenda.
In the submissions to the panel, one feature relevant to most of the much needed services was the inequality in provision throughout the country. That was certainly the case with respect to respite care. The lack of short breaks was the biggest single cause of unhappiness with service provision in the submissions. Respite care can, of course, take many forms. We have discussed some of them—whether it be day care, an overnight stay, a sitting service or whatever—but what is so important is that we are looking at the needs of the individual child and the needs of the family. We have already spoken about the great number of severely disabled children these days, but sometimes we have to focus beyond that and think about the very individual and distinct needs of every single child.
I recently visited a very good respite centre in York. During a really wonderful visit, I witnessed how quality respite care can be of enormous benefit to the families, as well as to the child. That is a win-win situation, with children getting a change of scene and mixing with other children and, in the case that I have just cited, receiving high-quality care with superb resources. In my short speech, I should like to explore the benefits of short breaks to children and families.
As the hon. Member for South-West Devon said, in the past week, much media attention has been given to the United Kingdom’s rankings in the UNICEF report on child poverty and well-being. One of the dimensions considered in the report was family and peer relationships. Although difficult to measure, it was found that that dimension is very important to children and young people, especially in their long-term emotional and psychological development. According to the World Health Organisation, being liked and accepted by their peers is crucial to young people’s health and development, and those who are not socially integrated are far more likely to exhibit difficulties with their physical and emotional health.
Disabled children are generally thought to experience more difficulty in making and maintaining friendships, for a number of reasons. Many disabled children often have difficulties in communicating and making themselves understood. They might lack the confidence and self-esteem to enable them to enter into new friendships. But as well as that, many disabled children lack the opportunities to engage in the activities or situations in which many of us would expect to make friends and enjoy the company of others. In other words, something that we take for granted is not available to all disabled children.
The Bill addresses the support needs of the most severely disabled children. Their families tell of their wishes for their children—to be happy, healthy and to have friends—but many of their children face real barriers to that most natural of childhood activities. Families talk of their wish for their children to have short breaks that will allow them to have experiences appropriate to their abilities. Obviously, short breaks not only support the family carers, but provide an opportunity for disabled children to have a break from being cared for by the same person all the time. They can experience new opportunities, such as leisure activities, some of which we have heard about today.
The better the break for the disabled child or adult, the greater the benefit for the carer, who knows that the person for whom they care is being well looked after and having a good time. For all of us mothers, what greater pleasure is there than our children coming home full of joy because of their experiences? I want that to be available to every child. Without good enough short breaks, disabled children are denied a basic right to play, to enjoy new experiences and to make friends. The Bill would ensure that disabled children get access to the right type of breaks to meet their needs.
A survey by Mencap in 2006 showed that six out of 10 families did not get short-break services or, if they did, that the service did not meet their needs. Frequently, the reason cited was that the facilities and activities were not appropriate for the disabled child. Families talked of the need for the type of service to match their child’s needs and for activities appropriate to the child’s age and ability. Of course, appropriately trained staff and the appropriate facilities and type of provision that would give the child the most enjoyable break are so important.
A parent who had been asking for appropriate respite care for nearly two years recently contacted Treehouse at her wits’ end. That care’s failure to materialise had led to the breakdown of her marriage. She was referred to a short-break service, but after an initial assessment of her child, she found out that those involved did not feel that they would be able to manage his behaviour.
It so hard for parents when they realise that, in theory, they are entitled to short breaks, but because of the specific requirements, they might still be unable to gain access to them, or the parent might not have the confidence to let the child take the opportunity. That is a tragedy because we can achieve a lot more within the existing resources by pulling and working together, as well as doing a lot more if we are successful in our aims in the comprehensive spending review, and I hope that such bids will be made.
We have had many representations from the National Autistic Society. Obviously, that condition is high on the agenda and well known to most MPs, because it is a growing, recognised condition. In my area, not enough support is provided. There is a big time lag between identifying the needs of children on the spectrum—particularly at the more severe end—and providing appropriate education and care. As politicians, we are rightly focusing on that, but we have a long way to go. It is not surprising that it is really difficult to find the right sort of respite care for, say, a child who gets upset if everything is not in precisely the right order, which is a common characteristic of the condition. Everything on the plate must be in a certain position. A highly trained carer is needed to make sure that the child has a good experience.
Does the hon. Lady agree that, often, it is important that there is continuity and that the same highly trained carer assists the family in those situations, wherever possible? In the case of young people who have conditions on the autistic spectrum, often it is not only the regimented order, but having the same, familiar faces that is important.
I thank the hon. Gentleman for his intervention. That is absolutely the case and we could apply that right across the spectrum of all disabilities. For families to have the confidence that their child is going to have a good experience in respite care, they need to know the carer. That is important and it flags up what we are all saying: we have a lack of capacity, in terms not of only buildings, but people to provide these essential services.
Another respect in which the individual child gains is that good short-break provision can help to prepare a disabled son or daughter for a future independent life. Parents who come to our surgeries worry about how their children are going to cope as adults, as they, their parents, get older and older. That is such a weight on people’s minds. Anything that can contribute to developing the independence of the child has to be seen as a good thing. By providing disabled children with good enough short breaks—breaks that are appropriate and meet their support needs, while giving them opportunities to do new things and develop new skills—we are assisting them to prepare for the future that they, as individuals, deserve.
We have mentioned the heavy toll on parents who have children who need round-the-clock attention and who may become active late at night. It is difficult for those parents to maintain a lifestyle that is comparable to, say, that of their neighbours. We know that there is a high rate of unemployment among parents with disabled children and that there is a high level of parental separation. That level has been cited as being as high as 80 per cent. among parents of children with autism, which is a staggering figure, but it is not surprising. When I have been stressed with my children, I have thought, “My goodness, I’m so lucky. I haven’t got a fraction of the challenges that other parents have. How on earth would I cope if I was in that situation?” My heart goes out to parents who are able give their children that level of care. That is why it is important that there is a point at which the state steps in to give support, rather than to interfere.
Mention has been made of a striking comment that was made by a parent when evidence was being given to our panel:
“You have to be at breaking point for help. My child is severely disabled; she meets all the criteria, yet I had to have a breakdown to get help.”
I do not apologise for repeating that because it shows very well that we have to intervene with support before the breaking point is reached. We realise that parents desperately want to keep their children in the family setting if they possibly can. Extra support from education and respite care makes that possible. City of York council has definitely run an invest-to-save policy. It has deliberately invested a great deal in respite care, which has made it possible, when it is the right thing to do, to keep the child in the family, instead of using residential care.
We have referred to the postcode lottery for respite care. People who move to my constituency are shattered when they find out how little they are eligible for compared with those in other areas. It must be doubly hard for people to cope with moving between areas with different provision. I have said a lot about benefits to children, but such support obviously has the benefits of keeping the family together and giving parents and siblings quality time together. Of course, lone parents particularly need such support, especially because there is a higher proportion of lone parents with disabled children than couples. It must be very hard for people not to have someone to turn to when everything begins to get on top of them.
I recently heard of a bizarre and tragic case. The child, Julie, had been damaged at birth. A large sum of money for her had been paid into funds and managed appropriately. Respite care had originally been provided as a service to Julie’s parents, which meant that their income was taken on board. However, when the family moved to my area, the local authority said that Julie’s money would have to be used to pay for the respite care because the service was for Julie. The parents saw the sum of money that had been settled on for Julie as being for her future and her care after they had died. It was incredibly upsetting for them to experience two different situations. We must think about the impact that respite has on both the child and the family. It is not very pleasant for people to have to think about where the money should come from.
I recently heard of a case relating to a situation that the hon. Member for South-West Devon mentioned: a disabled child who goes into respite care is almost categorised as a looked-after child. My constituents found that incredibly upsetting because they did not want their child to be categorised in such a way. Of course, we want adequate child protection measures, but the situation shows that the way in which we handle things is important. We are dealing with families with enormous strains on them already, so we need to get both the big things and the small things right as we communicate with each other.
There is a children’s hospice in my constituency of which I am a patron, so I suppose that I should declare an interest. We have been fundraising for the hospice, Julia’s House, since 1997, although it officially opened only last year—it has been an enormous haul. It offers an outreach service and day care, and it is only now moving towards offering overnight care, because it has had to be built up gradually, as it has been entirely dependent on raising funds locally. The Government have allocated £27 million to children’s hospices to cover the gap from previous lottery funds, and I am so pleased about that, but the hospice might not be eligible for a share of that money, because it was not offering the full range of services on the prescribed date. I warn the Minister that he can expect letters setting out the full details of the matter.
The Bill builds on existing legislation, namely the Children Act 1989 and the Childcare Act 2006, in which I was actively involved. I had great concerns about the 2006 Act, as the Minister knows, because although it was good that we identified the fact that we need to provide child care for children with disabilities, the question was whether local authorities would be able to deliver on that commitment. I still have concerns about whether highly specialised child care can be provided. The Act was oriented towards working parents, but as we know, although many disabled parents are not able to work, they still need child care to help them in their daily lives.
Finally, I would like to mention the importance of the voices of children and parents in shaping services. That was an important consideration in our review. When we talk about services for children, it is particularly important that we actually ask them what they want, and why they want it. If it is not possible for the child to communicate, we should consider giving much more support to advocacy services. After all, the measures that we are talking about are fundamentally for children. They include support for their families, but at the end of the day, the outcomes relate to children. We must make it possible for their voices to be heard, and we should build the services around what children and their families want and need, rather than trying to fit the families and children into the services that people think that they ought to need.
It is a particular pleasure to follow the hon. Member for Mid-Dorset and North Poole (Annette Brooke), whose work for young carers I greatly admire, and with whom I have had the pleasure of working. At the outset, I warmly congratulate the hon. Member for South-West Devon (Mr. Streeter) on introducing this vital Bill, and on the passion and clarity with which he spoke. I place on record my personal thanks to him for inviting me and other parliamentary colleagues to co-sponsor his Bill and serve on his Bill team. It has been an exemplary instance of cross-party collaboration and consensus. Our thanks should also go to the Every Disabled Child Matters campaign and its equivalent in my country, the Children in Wales consortium. The Bill applies to England and Wales, and I will refer to that important fact in my contribution.
I am proud to be a vice-president of Carers UK, which firmly supports the principles of the Bill. Carers UK campaigns on the three Rs: recompense, respect and respite. The Bill is about all three. Carers will be listening carefully to our deliberations, as has been said in other contributions, and they will be particularly keen to hear the Minister’s response. Given the strength of their case, I am confident that they will not be disappointed. The very fact that the Bill exists, with broad support across the House and the country, is an indication of the progress that has been made in understanding the need for respite care. It is to his great credit that the hon. Gentleman has had the vision to introduce the Bill at the very moment that Her Majesty’s Government have announced major advances for carers. It follows the groundbreaking work of my hon. Friend the Economic Secretary, who last year introduced a ten-minute Bill that has been mentioned by many parliamentary colleagues.
Our discussions should be viewed in the wider historical context stretching back to the Prime Minister’s national strategy for carers in 1999 and previous major legislation. More recently, a parliamentary review of services for disabled children was led by my hon. Friend the Member for Blackpool, North and Fleetwood (Mrs. Humble) and my right hon. Friend the Member for Coatbridge, Chryston and Bellshill (Mr. Clarke), and I warmly congratulate them on their fine contributions to the debate. I speak not only as a sponsor of the Bill but as the chair of the all-party parliamentary group on carers, which strongly supports the Bill, and the points that I wish to make are important to that group, to carers throughout the country and to children with disabilities. I speak, too, as a former carer, having cared for our son, Sam, for over 16 years.
Many hon. Members in the Chamber gave me a great deal of support when I had the privilege of introducing the private Member’s Bill, which has been mentioned by several contributors and became the Carers (Equal Opportunities) Act 2004. I thank them again for that support, as the evidence suggests that, in its own small way, the Act has helped to change the way in which carers are viewed, as it is now accepted that they have a life beyond their caring responsibilities. It has improved, too, the provision of information for carers and a raft of initiatives has been developed to give carers the opportunity to learn, train and work.
Some important parts of the Disabled Children (Family Support) Bill are a reflection of my Bill. Having conducted extensive consultations with carers about their priorities, I know that those issues are critical for them. The evidence suggests that legislation changes culture and practice. It is often argued that good practice guidance is all that is needed, but Carers UK believes that practice guidance is a blunt tool if the local authority is not performing well and does not give carers the right to a decent life or to a life beyond caring. Kay O’Shaunessy, the chair of the Plymouth branch of Carers UK and mother of a nine-year-old daughter, Amy, who has severe and complex disabilities, has summed up why legislation is needed. She says that it would have made life a lot easier, as it is often a battle to get a break. She knows many families in a similar situation, and she started Friends and Families of Special Children for them. It is one thing to agree to provide a break, but another to put that into practice and find the right resources so that it can be a good experience for the child. Kay wants more short breaks, as well as social and leisure activities for Amy while she and her husband take the break that they deserve. Kay says that breaks for her not only enable her to safeguard her health, but are important for quality of life and so that she can spend quality time with her husband and the rest of the family.
The elements of the Bill are important. The provision of breaks must involve the NHS, where the child has a health need. Parents, as well as their children, have rights. Breaks must be of good quality and benefit both children and carers. I will deal with those principles in turn, starting with the involvement of the NHS.
In the original draft of my Bill, I wanted to place new duties on NHS bodies to recognise that they had a duty to protect carers’ health and well-being. Unfortunately, the Government did not agree with me and the huge body of evidence that had been collected by carers through Carers UK. As we all have to do on such occasions, I agreed to give way to enable other important elements of the Bill to be successful.
The present Bill tries to establish a similar and critically important principle—that breaks need to be provided, sometimes solely through the NHS, or with NHS input and planning alongside social services. That is set out clearly in clause 3. It is vital that there be joined-up working, which we know is not happening because of what we are told by parents of children with severe disabilities and complex health problems. Carers tell us all the time that our NHS should pay far more attention to them, their views and, most important, their health. We also know that without this vital input from the NHS, a break is not possible without serious potential harm to the child’s health.
Parents tell me time and again how important breaks are to them, to allow them to have time to themselves, to recharge their batteries and, perhaps, to devote time and attention to the disabled child’s siblings, whom they feel they overlook because they devote so much time to their disabled child. If you asked me what words would appropriately describe the condition of carers, the words that come to mind are tiredness, stress, worry and, perhaps most important of all, isolation. Respite care addresses all those conditions.
I shall move on to parents’ rights. Despite the fact that my Act establishes that parent carers have a right to an assessment of their own needs, Carers UK and Contact a Family find all too often that parents are not seen as individuals with rights of their own. They are sometimes treated as invisible, with their disabled child as the only one to have rights. Parents are told that they are not entitled to an assessment in their own right. That is wrong, according to the law, and it is also short-sighted. As we have already heard from contributions this morning, it is critical to carers’ health and well-being that they receive assessments in their own right.
When I met parents of children with disabilities in my constituency, Aberavon, while I was preparing my Bill, one of the main issues was the fact that they felt that they were not recognised as human beings with their own rights. Clause 4 would give carers a right to request that the children services authority assess their ability to provide care for the child, as a precursor to assessing the child’s needs for short break care under clause 3. That means that the needs of the carer must be taken into account in determining whether the child needs short break care.
The clause is important. It is designed to ensure that any barriers to caring experienced by the carer are recognised when the family’s need for short breaks is assessed. This would include carers who are themselves disabled or in poor health, one-parent families and carers with multiple caring responsibilities. There may be a particular need for support—perhaps another child is ill or there are pressures on parents’ time—that is not reflected in the disabled child’s assessment.
The Bill would remedy the situation by providing a correlation or continuum between the assessment of children’s needs and those of the rest of their families. That is essential because research shows time and again that families with disabled children have a different quality of life because of the extra challenges that they face in caring for a disabled child. Recent research for Carers UK and Contact a Family, undertaken by the university of Leeds as part of the action for carers and employment project, shows that parents of disabled children are less likely to work, more likely to live in substandard housing and more likely to suffer ill health, as we have heard in other contributions today. Parents tell me that breaks are vital to ensure that they have a quality of life comparable to that of parents without disabled children. Breaks enable them to look after their own health, recharge their batteries and do things that other people take for granted. The Bill would establish that important principle in law.
During the course of my contribution, I shall address a number of questions to the Minister, to which I hope he will respond either at the end of the debate or subsequently in writing. Does he feel that parents of disabled children face what one might call a less equal life as a result of caring for a disabled child and that they face discrimination? Will the new equalities body, the Commission for Equalities and Human Rights, tackle the multiple forms of discrimination that carers face from day to day in caring for a person with a disability? The all-party group on carers has invited the new chair of the commission to address the group and he has agreed to meet us. I am sure that he will be interested to hear the Minister’s response and we will ensure that it is fed into our discussions when we meet him soon.
I turn to the question of the quality of existing support and new measures to support carers. I warmly welcome, as I am sure all hon. Members do, the Chancellor’s announcement on Wednesday of the new deal for carers in England, which promised £33 million for the provision of better support for carers. That new deal includes £25 million for the provision of emergency support for families caring for an adult or child with disabilities. The money is there to ensure that carers who have health or family emergencies get help instantly, when they need it. Contact a Family welcomed the announcement but said that the money is no replacement for regular, good quality respite care. During the past few years, the Government have put more than £1 billion into respite care, but we know that that does not stretch far enough. There is still a shortage of good quality break services and only a proportion of the total funding for breaks will go to families with disabled children.
I come to my second question for the Minister. In relation to driving up the quality of respite care, can the Minister offer an assurance that, whatever the fortunes of the Bill, measures will be put in place to ensure that short breaks are provided to benefit disabled children and their carers? That vital principle is at the heart of the Bill, and a framework must be established to ensure that short breaks meet that test.
Wednesday’s announcement by the Chancellor about the new deal for carers also put the future funding of breaks firmly on the agenda. Carers’ organisations feel strongly that the carer’s grant is an important stream of funding that provides carers with breaks and must remain discrete rather than being rolled into the revenue support grant. From its wide membership, Carers UK hears strong concerns that the funding for carers’ breaks will be reduced if it loses its clear identity. That is a critical part of the discussion because the outcome will affect the delivery of break services in future.
My third question is, how does the Minister envisage Wednesday’s announcement fitting in with the Bill? Can he give any commitment today that the carer’s grant and the carer’s emergency support grant will continue after this year?
At the outset of my remarks, I said that the measure was very much an England and Wales Bill. I often referred to my Carers (Equal Opportunities) Act 2004 as a Wales and England measure because it was clearly rooted in the experiences of carers and the cared for in Wales. In my constituency, many carers groups are anxiously listening to the debate today. The Carers Action Movement, the special needs activity club, Everybody’s Gateway club, the epilepsy support group, Cancer Challenge, Age Concern and many other organisations know the importance of respite care to their members. Indeed, they often take a lead in providing it.
Carers Wales and the Children in Wales consortium support the Bill’s principles. The members of the consortium include such diverse bodies as Barnardo’s Cymru, SNAP Cymru, Autism Cymru, Shared Care Wales, Learning Disability Wales and many more. They look to the debate for hope and inspiration. I commend the manifesto that Carers Wales and Wales Carers Alliance recently launched in anticipation of the Assembly elections. It is entitled “A Fair Deal for Carers” and respite care plays an important part in it. I encourage parliamentary colleagues to read and support it.
As another Member who represents a Welsh constituency, I pay tribute to the hon. Gentleman’s work with the carers’ movement, especially in Wales. Does he agree that the greatest and most fundamental concern, above the provision of respite care, of the organisations that he listed is the lottery of provision? In Wales, there is a huge disparity between authorities. The key point of the Bill is placing a universal duty on local authorities.
I especially commend the carers’ organisations in Ceredigion. They are some of the best in Wales. I agree with the hon. Gentleman’s point and I shall refer later to the importance of providing some universality throughout the United Kingdom and of learning from one another.
From my recent discussions with Welsh Assembly Ministers, I know that they believe that improvements in respite care are best advanced through universal and targeted programmes, including the national service framework for children, young people and maternity services and Children First. The Welsh Assembly Government also believe that the outcome of the Department for Education and Skills-Treasury review will inform future developments in Wales. I state that in anticipation of the Minister saying it later.
The carers’ champion for Wales, the Welsh Assembly Member John Griffiths, and the carers’ champion in my local authority, Councillor Paul Thomas, are both doing sterling work on behalf of carers and are keenly interested in this debate. My hon. Friend the Minister may wish to encourage our Government to designate himself as the carers’ champion. We might all agree that he should be the carers’ champion, in the light of his contributions today. We await that with anticipation; indeed, perhaps we will table an early-day motion to that effect. It would be interesting to hear his response to that. I look forward to hearing him being described as the official carers’ champion in England.
Although I acknowledge the broad policy and strategic framework within which we are discussing such matters, particularly the outcome of the comprehensive spending review, I urge my hon. Friend the Minister to ensure that the Government take account of the experience, views and good practice not only in England but in the devolved Administrations throughout the United Kingdom.
I end with this final reminder. We must remember the purpose of the Bill. Carers UK heard from a single mother of four children with autism who needs regular breaks because she is physically exhausted, depressed and demoralised. She has sleepless nights and has come close to a nervous breakdown. If that happens—and it is very likely—instead of providing breaks for four children, the local authority will have to provide foster care for four children, plus additional health care for the mother. As we know, over the longer term it makes sense to ensure that carers have regular breaks, in order to keep them together as families. I know that not only from my own experience, but from my friend Ray Thomas, who chairs the carers action movement in my locality and who, along with his wife, has been a carer for more than 40 years for their two sons.
Given my Government’s track record on carers and disability over the past decade, I am confident that the Minister will recognise the value of this debate in making a major contribution to policy development on social care and, most importantly of all, the needs of disabled children and their carers throughout the country.
This debate has been going for about three hours and 15 minutes. Almost 100 people are in the Gallery and there are probably thousands of people watching, glued to the Parliament channel at this moment, willing one thing: for this debate to finish. This is one of those unusual debates in which less is probably more. Unless it comes to a conclusion fairly quickly, the Bill will not go through and those of us here will be collectively responsible for talking it out. That is not what we want to do. In that spirit, I shall keep my remarks fairly brief, because if I and the three or four further Back Benchers here who are yet to speak do that, the decision of whether to talk out the debate or let the Bill go through will be on the Minister’s conscience.
I am delighted to speak in support of a Bill that has the simple, necessary and laudable aim of offering better support to disabled children and their carers. By including representatives from throughout the sector who believe in the crucial importance of improving the support of some 100,000 children and their families, the Every Disabled Child Matters campaign has shown that it is a true coalition of the willing. I pay tribute to those who have worked so hard to make the Bill a reality. In particular, I pay tribute to my hon. Friend the Member for South-West Devon (Mr. Streeter) for bringing the Bill to the Floor of the House. It is my hope that the Government will do more than simply acknowledge the importance of the principles involved here. Ministers have done that before and they will no doubt do it again. What is needed, and what the Bill would deliver, is a cast-iron commitment to improving the support available to disabled children and their carers. The Bill would achieve that by imposing through clause 2 a specific duty on local authorities to assess the need for short breaks and to provide them.
I want to address two aspects of the duty under that clause—assessment and delivery. Disabled children are entitled to have their needs assessed and services provided under section 17 of the Children Act 1989. Carers have access to a range of entitlement to assessment, services and support but, crucially, the assessment legislation does not include a duty to assess the specific need for disabled children and their families to access short breaks. There is a menu of options for local authorities, but there is also uncertainty of outcome for disabled children. That helps to explain the wide variance across the country in the availability of short breaks.
Clause 2 would correct that deficiency and help to promote consistency by imposing a duty on local authorities to assess the need for short breaks for all those in their area who have parental responsibility for a disabled child and who regularly provide a substantial amount of care. One failing in the support that carers receive is the fact that there is no automatic connection between assessment and delivery. As Mencap found, half of carers who have a carer’s assessment still receive no services whatever. That situation is aggravated for many families because there is no legally enforceable right to short breaks for families with disabled children—even once they have been assessed as being in need of them.
The fact that local authorities face only the option of providing short breaks means that services that families receive are at best patchy and at worst non-existent. As we heard earlier, a Mencap survey found that six out of 10 families received either no short breaks at all or short breaks that did not meet their needs, while seven out of 10 families were not offered a choice between different short-break services. For the sake of comparison—my hon. Friend the Member for South-West Devon alluded to this—eight out of 10 families responded to the same survey that they were close to breaking point due to caring for disabled children without having adequate short breaks. Many hon. Members have referred to that.
The specific duty in clause 2 to provide short breaks would also require local authorities to make sufficient provision available to meet the needs of families in their area. That would represent a marked change from the current situation whereby delivery of short breaks is often inadequate and the lack of capacity means that families often have no choice but to accept inappropriate services or receive nothing at all.
I want briefly to discuss the supposed cost of the duties in clause 2. It has been estimated that carers of all kinds save the Treasury £57 billion a year, a significant fraction of which is saved due the number of parents and their families who care for a disabled child. We have heard those numbers before. When the alternative to disabled children being looked after by their parents can cost up to £200,000 per child per year for full-time residential care, it is easy to see how that staggering sum can be reached. It is simply a false economy for the Government to suggest that the cost of a duty to provide short breaks is unwarranted, given the potential cost of family breakdown that can be caused by the inadequate provision of short breaks.
To their credit, the Government have recognised that fact. The Economic Secretary reaffirmed the Government’s commitment to the “Every Disabled Child Matters” campaign and to the urgent need to improve access to short breaks for disabled children and their families in a lecture last Tuesday. He said rightly that
“short breaks help give families with disabled children an ordinary life—the same experience of having a break from each other, to support the love and care that all parents give their children.”
The next day, the Minister with responsibility for care services announced a new deal for carers with a commitment of £33 million of extra funding to support carers in advance of the comprehensive spending review. I sincerely hope that some of that extra funding will be made available to disabled children and their families, and that the Minister will give a commitment to that effect.
If emergency respite care warrants extra financial support at this point in time, however, there is little weight in the argument that disabled children and their families must wait for the CSR to be completed. I appreciate that the Government are sensitive to proposals that involve spending commitments—as a member of the Conservative Treasury team, I am particularly cognisant of that. The fact remains, however, that early intervention through a duty to provide better access to short breaks has the potential to save far more money than it would cost.
Early intervention is one of the watchwords of the Department for Education and Skills, yet the cash that would enable such intervention is lacking time and again. The pressure on speech and language therapy funding is of acute concern to my constituents. Other initiatives such as the early support programme, which aims to assist early intervention and the co-ordination of resources, have insecure long-term funding and patchy implementation. Yesterday, it was announced that the CSR has been pushed back until October. I question whether it is good enough to wait until then before taking action to improve support for some of the most vulnerable people in our society.
The time to act is now, with this Bill, and not with reference to a vague commitment to improve the situation at some time in the future. Talk is cheap, but in this case even action is affordable, and the payback even greater. The Bill has received support from across the sector, and from all parties. I am grateful to all those who have drawn attention to the issue, and particularly to Georgina Rhymes and her team at the play and resource centre in my constituency, as well as to the Braintree branch of Mencap, the Edith Borthwick school in Bocking and Southview school in Witham.
I am encouraged by the widespread support that the Bill has received, and I only hope that the Government will translate a measure of that support into prompt action.
I am grateful for the opportunity to take part in today’s debate. I congratulate the hon. Member for South-West Devon (Mr. Streeter) not only on choosing this Bill but on his speech and the way in which he has worked with fellow Members, such as me, who support the Bill.
I believe that the Bill’s introduction provides a further step towards securing more help for families with disabled children. I pay tribute to all those who have worked so hard to campaign for better support for families who have to cope with looking after a disabled child. I pay tribute to my hon. Friend the Economic Secretary for introducing his ten-minute Bill last year and for his continued support and advocacy for improved provision for children with disabilities; and to everyone involved in the “Every Disabled Child Matters” campaign—Contact a Family, the Council for Disabled Children, Mencap, the Special Educational Consortium and the families who have made their voices heard over recent months.
I pay tribute to my right hon. Friend the Member for Coatbridge, Chryston and Bellshill (Mr. Clarke) and to my hon. Friend the Member for Blackpool, North and Fleetwood (Mrs. Humble) for leading the parliamentary hearings on services for disabled children last year. Those of us who took part in those hearings were greatly moved by the stories that parents of disabled children brought to us. We were also impressed by the hard work and dedication of the voluntary organisations, which not only supported the hearings and the production of the report, but continue to advocate on behalf of children with disabilities.
The Government have acted to provide a framework to improve services for children with a disability. Standard 8 of the national service framework for children provides for children and young people who are disabled or who have complex health needs to
“receive co-ordinated, high-quality child and family-centred services which are based on assessed needs, which promote social inclusion and, where possible, which enable them and their families to live ordinary lives.”
Direct payments were extended to parents and carers of disabled children in 2001. As part of the Every Child Matters programme, the Government have increased funding for short breaks through the carer’s grant allocation from £20 million when it was introduced in 1999 to £185 million in 2005-06. The Department of Health has issued guidance through the framework for the assessment of children in need and their families. Through the Carers (Equal Opportunities) Act 2004, the Carers and Disabled Children Act 2000 provides similar rights to assessment for persons with parental responsibility who provide care for a disabled child, but sadly there is no requirement to provide the carer with services following an assessment.
There is good practice and good provision in some areas. Charities such as TreeHouse provide specialist educational services and parental support for children with autism. In my constituency, the development of the children's centre in Burton has brought together services for disabled children and their families, which include community paediatric consultants, with those of nursery and support for children in the local area, not only bringing services for children with and without disabilities together, but bringing together different agencies. However, as we were told at the hearings last year, provision of services for children with disabilities is still a lottery and that cannot be right.
Those of us who are parents or even grandparents will know of the stress that can be placed on a family when a young baby is demanding attention 24 hours a day. It is difficult to imagine the stress that a family with a disabled child face when that lasts not just for one or two years, but for life. Caring without a break for children and adults with severe or profound learning disabilities damages families. Sleep deprivation, moving and handling and constantly being the only person who can provide what is needed can be physically and emotionally draining. Many families provide constant and intensive care. Many disabled children need support to do things we all take for granted such as eating, drinking or dressing.
My hon. Friend highlights parents’ commitment to their disabled children. Does she agree that, sadly, because of that very commitment, local authorities sometimes do not develop services? They rely on families to do everything in their power to look after their children themselves. Local authorities should intervene and help those families.
My hon. Friend is right that, while a family is coping, sometimes there is, I would not say reluctance, but local authorities do not always step in perhaps when they should, partly because of the pressures on them; but that support should be there, without families always having to fight for it.
Constant caring and disturbed nights make families ill, both physically and mentally. It affects their ability to continue to cope. Caring without a break is bad for every member of the family and for their relationships with one another. In Mencap’s “Breaking Point” survey, published in 2006, seven in 10 families said that they provided more than 15 hours’ care a day, and five in 10 families said that they always provided care during the night. The Contact a Family study in 2004 found that 76 per cent. of families with a disabled child suffered from stress or depression, leading to a high incidence of family breakdown.
There is phenomenal pressure on the main relationships in the family, coupled with tiredness and the monotony of doing the same tasks time and again without a break. Families report many instances of their relationships suffering. On top of the everyday tasks, every family always has other things to do. We can imagine what it must be like for parents when other family members need attention, perhaps simply a child wanting a bedtime story, but they have no time to spare.
Mencap’s survey found that 80 per cent. of disabled children had at least one sibling living in the family home, so on top of the pressures of providing good enough support for the disabled child, the family has other children to care for. Families report feeling torn apart as one parent looks after the disabled child while the other looks after the other child or children. Without the right short breaks, families have no time to feel like a family and carry out the everyday activities that many of us take for granted.
Short breaks are vital. They enable such families to have a quality family life and ensure that everyone in the family is equally and fully supported. Families who take breaks describe them as essential in helping them to continue caring. When families take regular short breaks they say they feel that they can continue to care for their son or daughter. Short breaks are a lifeline for those families; as well as giving the main carer a break from providing intensive support, often without enough sleep, they allow the rest of the family to do things together, or simply to relax.
As a society, we owe it to the parents of disabled children to provide consistent and timely support for their families. At the hearings, we were told the moving story of a young woman whose life revolved around trying to contact and make appointments with various agencies. Her life was transformed when she was allocated a key worker. The evidence at the hearings made it clear that the early support programme is one of the Government’s great success stories. It should be available throughout the country.
Another finding was that the
“Childcare element of the Working Tax Credit should recognise the additional costs of securing child care for a disabled child”.
We should consider relaxing the rule on family members giving child care in the child’s own home to allow tax credits to be paid in circumstances where no other appropriate child care can be found. One of my constituents was unable to return to work because she was not allowed to claim child care tax credits so that a relative could care for her children. The Disability Rights Commission reports that families with a disabled child earn 17 per cent. less than other families, are 50 per cent. more likely to be in debt and 50 per cent. more likely to live in poor accommodation. If we want to improve the standard of living of families with disabled children, we must be more flexible about funding for child care.
My hon. Friend is right. Extended families play a large part in giving such care, and many provide it unfunded and free, but there are times when such support is not available from someone who can afford not to be paid for giving it. In those circumstances, it would be helpful if the person providing such care in the child’s home could be recompensed. At the moment, I understand that the working tax credit does not allow that.
The parliamentary hearings found that the lack of short breaks was the biggest single cause of unhappiness about service provision. As chair of the all-party group on autism, I am well aware that children with autism and many other disabled children are denied short breaks and other services because they are deemed not to meet the threshold criteria for services. A survey by the National Autistic Society showed that only 15 per cent. of parents of children with autism receive any support from social services in their caring role. A Department for Education and Skills-funded study identified respite and family support services as the biggest gap in provision for families of children with autism.
A lack of access to short breaks is particularly unfortunate for families with a child who has autistic spectrum disorder because the need is often more acute. Three in five families with children with autism reported significant levels of psychological distress—more than twice as high as parents in general. Nine out of 10 children with autism have significant mental health needs and/or behavioural difficulties—10 times more than children in general. Short breaks are beneficial for children with autism, enabling them to broaden their horizons by experiencing new environments and activities. Breaks from caring reduce stress on parents and allow them to continue their caring role rather than stretching them to crisis point.
A study found that 87 per cent. of parents of children with autism identified a break from caring as a need that had not been met. The same study found that mothers of children with autism were at increased risk of psychological distress, especially if there was a low level of informal support—from friends and relatives, for example. Caring affects an informal support network beyond the child and the parents, and short breaks benefit everyone in the network. Generic disability services may not meet the needs of children with autism. About 82 per cent. of short break providers want more support and information on autism and parents rated understanding of autism as the most important criterion in selecting services.
I know that the Government recognise that it is necessary to do more to ensure that families with disabled children receive the help and support that they need. In 2005, the report, “Improving the Life Chances of Disabled People”, produced by the Prime Minister’s strategy unit, stated on the subject of short-break provision:
“Support with caring: all parents need a break from caring sometimes. Parents of disabled children can find this difficult if family or friends are unable to help, or if there is a shortage of daycare provision for their child. But around one-third of parents with disabled children wait over a year for a short break service. And families with very young children, children with complex needs, “challenging behaviour” and Autistic Spectrum Disorders, as well as those from minority ethnic communities, are less likely to have short breaks.”
One of the report’s key recommendations was:
“Improving support for families with young disabled children by ensuring families of disabled children benefit from childcare and early education provided to all children; meeting the extra needs of families with disabled children; and ensuring services are centred on disabled children and their families, not on processes and funding streams.”
This week, there was welcome news of an extra £25 million for short-term, home-based respite care, for carers in crisis or for emergency situations. I know from my constituency casework that there are times when a carer needs sudden medical attention, and the distress of not having someone to care for their child is immense. Will the Minister assure the House that this extra money will include support for parents caring for disabled children? Will he ensure that the early support programme is available throughout the country? Will he further ensure that the carer’s strategy is revised in the light of recommendations from the Treasury-DFES review currently in process? I ask him also to press for flexibility in the provision of child care support to help families with disabled children.
I hope that extra funding will come from the comprehensive spending review and that the Minister can reassure the House today that the lottery of short-break provision will cease and ensure that all families who need support receive it without the need to battle for many years, as some do now.
I congratulate all the hon. Members who have spoken so far—it has been a tremendously good debate—and particularly the hon. Member for South-West Devon (Mr. Streeter) on choosing the Bill and promoting it so effectively.
The statistics speak for themselves, and they have been rehearsed very often in the debate, so I do not intend to repeat them, except to say that, according to the Commission for Social Care Inspection, only one in 13 families with a disabled child receive regular support of any sort from their local authority. Putting aside the statistics, I should like to tell hon. Members about a remarkable family who live in Cheddleton in my constituency: the Griffiths family, who are survivors of the system, but only just.
Seven years ago, they—Jackie, Rolf and their daughter, Candice—were devastated to learn that Tilly was born with very severe life-limiting disabilities. Like nearly all families faced with such news, they went through disbelief, denial, depression and isolation. As Tilly requires ventilation and care 24 hours a day, seven days a week, suddenly their world became very small—in fact, just their house. They focused solely on their home, as Tilly needs ventilation, so there was no possibility of babysitting or even of taking a taxi somewhere. There were no trips out. Is it surprising that the majority of families with a disabled child become lone-parent ones and require psychological counselling? The system is geared towards just dealing with crises, when families hit meltdown.
The Griffiths family got assessed for direct payments only when the father, Rolf, collapsed. Those payments have enabled the family to get 10 hours a week help, so the mother, Jackie, can take the older sister, Candice, and Tilly to swimming and ballet. Hon. Members might ask how Tilly does ballet. Her father is very ingenious and created a frame, so that she can dance with the assistance of Candice. For many families, such support comes too late, when the marriage has broken down and when they are depressed and broken by the system, as a result of relentless aggravation and because they cannot get away from one another. That is why the Bill is so important.
Jackie is a remarkable woman. She helped to create an organisation called Special Matters—a group established three years ago for families with children with additional needs. Based in Staffordshire, Moorlands, it is funded by the rural Sure Start that I secured for my area. It consists of a parent support group and an action group, made up of professionals and parents. Parents are empowered to bring about significant improvements, with Sure Start’s generous support.
Special Matters now has more than 160 families—sadly, many of them have single parents now—working with more than 60 agencies. That is the number of agencies that they require to cope with their needs. They are dedicated and focused on improving the provision of services and care for families with special needs. They have created effective parent and multi-agency working parties, which have been successful in improving the quality of service from health visitors, school nurses, children’s disability teams, transport escorts, an early-years referral forum and respite information. The Economic Secretary was so impressed by what Special Matters does that he not only presented it with an award in his ministerial capacity but took up my invitation to visit the organisation on 1 December last year at Rudyard lake in my constituency. The organisation has changed lives. For the first time, families were able to go out together on supported outings. They were not left isolated in their own homes.
The life of the Griffiths family has changed in the last six months, in particular. After a three-year wait, they finally got additional support. As Tilly requires ventilation, she now gets additional help. She qualified for that help three years ago, but had to wait for it. The additional help means that Candice, Jackie and Rolf can go out without having to worry about leaving Tilly at home. They can have the odd evening off, when they can go to meetings, the pub or the park.
The Griffiths family also benefit from a state-of-the-art children’s hospice in the constituency of my hon. Friend the Member for Stoke-on-Trent, South (Mr. Flello). Treetops children’s hospice is a fantastic place. It provides a respite not just for Tilly but for the whole family. Treetops now gets some statutory funding, but it is still largely dependent on charitable donations.
The other organisation that has made a huge difference to the Griffiths family is the Caudwell charity, which was set up by a local business man, John Caudwell. It has provided thousands of pounds for disabled children in my constituency and in the north Staffordshire area. Recently, it provided £20,000 for a new wheelchair for Tilly. The wheelchair allows her to sit and lie flat, and can bring her to a standing position, so that she can use the lavatory and can see the world as everybody else sees it. It also means that Jackie, her mum, does not have to lift Tilly three times a day. Tilly is getting increasingly large. She is seven years old. The wheelchair will help her for the next five years. So, the Griffiths family survive. It is a miracle that they have not broken down under the strain, but, Jackie tells me, it is still like climbing the Eiger—and they are at the top of the care pyramid.
One would think that, with all those challenges, families with disabled children would get as much help as possible from local authorities. Unfortunately, that is not the case, even when funding is not involved. Let me give the House an example. Sailability is a fantastic project that is based on Rudyard lake in my constituency. It has 70 volunteers and caters for groups and schools, providing regular sailing for more than 1,000 disabled children and adults—either free or at minimal cost. It is a superb organisation. It has accessible sailing boats and dragon boats for all. There is level ground to launch boats and a specialist hoist. Every year, volunteers raise thousands of pounds to fund the activities. The organisation has recently been recognised by the Royal Yachting Association, no less, as a centre of excellence—in fact, its first centre of excellence.
One would think that Staffordshire Moorlands district council would be queuing up to give the organisation support, but one would be wrong. Despite the personal support of the leader of the council, Ron Locker, the planning department has put obstacle after obstacle in the organisation’s way over the last two years. It is blocking planning permission for renewing an existing boat store. The development is vital to protect the specially designed, electrically controlled boats. Without the store, the project will have to close, but that would be absolutely scandalous. I am thus backing the project in every way I know how.
I thank my hon. Friend—my good friend—for giving way. Does she agree that such behaviour is typical of many councils throughout the country? Even when they have an obligation to provide specialist equipment for people with disabilities, they find ways time and again to get out of it, to delay the process, or to drag their heels in any way they can. I applaud my hon. Friend’s good work, but does she agree that the situation is typical?
I do not know whether it is typical, but I am amazed by it, because there would be no cost to the council at all. The Ratepayers-Liberal Democrat-controlled council has been talking about the project for a long time. I do not doubt the personal and passionate support of the leader of the council, but the planning department lives in the dark ages. That is why the review commissioned by the Chancellor of the Exchequer on how we can enhance the life chances of families with disabled children is important.
This is about not just respite care and short breaks but the whole spectrum of care that we can offer these children and their families. The Bill is a vital part of that patchwork of care, which is why I passionately support it. This is a matter of not just handouts but justice. When the Minister responds to this excellent debate, I hope that he will say that he will ensure that the Government will meet the challenge that has been put quite rightly by families who face disability that the Government must fund their needs and put in place a proper framework through which they can expect to get support. That is the least we can do for families who are struggling against all the odds.
I congratulate the hon. Member for South-West Devon (Mr. Streeter) on promoting the Bill and on his excellent speech in which he set out its aims and aspirations. I am his near neighbour in Plymouth, and although we do not see eye to eye on everything, I wholly agree with him on this matter. I am pleased to be able to support his attempt to take a private Member’s Bill through the House. I know how fraught that process can be, because my father, Michael Ward, who was the MP for Peterborough, successfully took through the House the Bill that became the Unfair Contract Terms Act 1977. He received a lot of support from outside bodies, and several hon. Members have already commented on how much we have valued the advice that the Every Disabled Child Matters campaign team has offered us.
Hon. Members on both sides of the House have pointed out why the Bill is important. We have heard emotional contributions and speeches that were based on enormous experience and knowledge, so I will speak briefly and fairly generally about the Bill, with the experience of my family.
I have a cousin who was born with Down’s syndrome. She is now middle-aged, and I watched her grow and develop in a very loving family. She was fortunate in many respects because there was a good family network on which her parents were able to draw. My grandmother and my cousin’s grandparents were able to allow her parents to take time out when that was needed, which was extraordinarily important. Later, the parents had not only their daughter to care for, but a son. It became increasingly difficult for them to offer the second child the time that he needed without support. Forty years ago, families were very much left to cope on their own if such a network was not available. I have no doubt that the type of support that exists today would have made a significant difference to their lives.
Even today, though, there are families managing their lives with some difficulty. We MPs all have constituency casework relating to similar families. They turn to us in desperation, but with a little additional support they might not need to find their way to our surgeries, because they could cope better with their daily lives. They normally arrive with what seems to be a totally unrelated problem, but when we start to ask questions, we discover that they have a disabled child. Often, the issue that they raise with us stems simply from not being able to cope with the demands placed on them by having a child with severe and often complex needs living in their home.
We know the pressures that such families are under. Mencap has carried out a number of surveys, and the most recent, conducted in 2006, showed that eight out of 10 families had reached or come close to breaking point because of a lack of short break services, and that seven out of 10 family carers who were in poor physical or mental health said that it was because of the amount of care, or rather the lack of it, with which they were provided. Those are startling statistics, but we should be clear that, even accepting Mencap’s evidence, things have changed in recent years. The Government’s Every Child Matters programme included a commitment to increased funding for short-term breaks through the carer’s grant, and that grant has increased steadily from £20 million in 1999 to £185 million in 2005-06. The extension of direct payments to parents and carers of disabled children has helped, as they are sometimes used to fund short breaks.
The Government have invested enormously in the families of children with disabilities, and they should be congratulated on that; it is entirely the right thing to do. The current review announced by the Chancellor is also extremely welcome, and I support the comments made by my right hon. Friend the Member for Coatbridge, Chryston and Bellshill (Mr. Clarke), who said that it is important that the review feed into the comprehensive spending review. Primary care trusts and local authorities have a duty to ensure that families who are assessed as having needs are offered short-term breaks. That includes home and community breaks, family-based and residential-based breaks, as well as access to child care and sitting services.
Such services are lifesavers. Just being able to go out for an evening can literally keep carers sane if they feel at the end of their tether. Such opportunities may save public money, too, because a stressed carer is at risk of mental illness, and may therefore be a cost to the NHS. Clearly, with only 6 per cent. of families getting any form of support, a significant number of people could further benefit, but sadly we all know that some authorities are better than others, and that there are waiting lists for some essential services. A number of colleagues have raised specific constituency examples of that.
There is none the less an understanding in Government of the importance of short breaks, and I have no doubt that the Minister will be broadly sympathetic to the case being made today. However, he will be aware that with the comprehensive spending review looming, and with the Treasury no doubt breathing down his neck, the potential costs could cause problems and make it impossible for him to support the whole Bill. I simply ask him to make the case to his Treasury colleagues that although the Every Disabled Child Matters campaign estimates the cost at about £190 million—he may have his own figures and may disagree about the amount—serious and significant costs arise from not providing the type of breaks proposed in the Bill. I touched on the wider impact on the physical and mental health of carers and parents, but we must also consider the needs that arise if a child ends up in a full-term residential place. I gather that the cost can be up to as much as £200,000 a year for a single child.
The Minister will know that the Bill would offer assistance to children whose parents or carers provide a substantial amount of care on an ongoing basis, and that probably means those who are in receipt of the higher rate of disability living allowance. That would mean that some 100,000 children would fall within the remit of the Bill. He will also be aware that about 34,000 children already receive some sort of family support. We seek to ensure that the remaining 66,000 children have access to breaks and care, should they need it. That would make a real difference to their lives.
I am sure that the Minister will set out his estimates of the costs, but may I draw his attention to the Rachel Squire lecture by the Economic Secretary, who is a dedicated campaigner in this area and said that there is a need for early support for disabled children and their families, as that is important for the emotional development of those children? In that lecture, he acknowledged that delayed interventions and assistance make it more likely that intensive care will be required further down the line, so I urge the Minister to look at the cost-benefit analysis, and not just the immediate one-off costs. The Economic Secretary is right, and I hope that the Minister will examine the point that I have just made and look at the lifetime costs.
I hope that the Minister aims to achieve something that the Economic Secretary said was vital, and put
“disabled children and their families at the centre of Government thinking”.
I hope that he will provide opportunities for them, and recognise and support parents in their caring role. We could do so by taking the debate forward in Committee, where we will have an excellent opportunity fully to explore the long-term costs of the proposal and the way in which varied streams of provision meet current needs, as well as the changing needs of an increasing number of families with disabled children in future.
I, too, congratulate the hon. Member for South-West Devon (Mr. Streeter), not only on the minor issue of winning fourth place in the ballot but on the courage and conviction with which he introduced the Bill. I pay him every credit for the way in which he set out the aims of the Bill, for the passion with which he spoke, and for showing courage in the face of Conservative opposition. The hon. Member for Mid-Dorset, who is not in his place, commented on the length of speeches, but I hope to keep my contribution to a minimum.
I am grateful, and I apologise to the hon. Lady. I should have directed my comments at the hon. Member for Braintree (Mr. Newmark), and I did not intend any offence.
The hon. Member for Braintree suggested that hon. Members had come to the Chamber for reasons other than our feeling passionately about the issue and having a great deal to say about it. It is such an important issue that it deserves a proper airing in the Chamber, so he would have done better to ensure that there are enough of his hon. Friends in the Chamber so that if there is a vote, he can call on the 100 Members necessary to make progress. I congratulate the organisations involved with the Bill behind the scenes, including Contact a Family, the Council for Disabled Children, Mencap and the Special Educational Consortium, all of which do extremely valuable work and have worked hard with the hon. Member for South-West Devon to introduce the Bill.
I should like to concentrate on the health aspects of the Bill. When I was preparing for today’s debate, I researched the legislation that is already in place, including the Carers (Equal Opportunities) Act 2004. That Act, which received Royal Assent on 22 July 2004, placed duties on local authorities and health bodies in respect of carers. It provided for the right of a carer to an assessment which
“must include consideration of whether the carer . . .is undertaking, or wishes to undertake, education, training or any leisure activity”.
So local authorities and health authorities already have a duty to meet the needs of carers.
The Carers and Disabled Children Act 2000 has been mentioned by other hon. Members and provides that
“if the carer had a break from caring, the person cared for may secure that services in lieu of the care which would otherwise have been provided to him by the carer are delivered temporarily to him by another person by way of community care services.”
As has been made clear by many hon. Members in this excellent debate, the duties are not enforced. There seems to be no impetus to implement the guidance and duties on local authorities and health authorities.
My good and hon. Friend the Member for Staffordshire, Moorlands (Charlotte Atkins) mentioned the Donna Louise Trust, which is in my constituency, and the Treetops facility there, which is incredible. I, too, have had the privilege of meeting Tilly, Candice, Jackie and Rolf, and was overwhelmed by their strength in almost ignoring the disabilities that Tilly has and simply behaving as a family, seeing past the medical needs and living a good family life as best they can. Jackie stands out for her fortitude, but I bow to my hon. Friend’s knowledge of the family. My contact with them has been much briefer.
The Donna Louise Trust looks like any other modern building. One starts to get a feel for the place once one goes through the main doors and into an area that seems like a rather large family home. During their respite care there, young people with life-limiting illnesses can use pool tables, video games and computers, so they can enjoy the facilities that most teenagers have in their home environment. For younger children there are toys, play facilities and opportunities to be creative that one hopes children without disabilities would have.
I was struck by the rooms, which are set up for medical care, but have familiar features. Before arriving, the young person coming to use the respite facilities would have identified the football team that they support, which would be reflected in the design of the duvet cover and the pillowcase. For younger children, the bedding theme would be cartoon characters, making the facility a home from home. Such homely touches embrace not just the young person with a disability—a life-limiting disability, in the case of Treetops—but the whole family. The rooms can be configured in ways that allow the family to be there with the young person. They can share the respite facilities, preserving the continuity of family life.
Has my hon. Friend come across cases, as I have in my constituency, where for various reasons the family—the mother, or perhaps both parents—have been greatly reluctant to be separated from the child, perhaps even refusing a facility that might be available? There is an important need to create a transitional period by providing facilities that can incorporate children and their parents. It would be a halfway house between proposed respite care and the current situation where families refuse what might be on offer.
My hon. Friend is right. Facilities such as Treetops from the Donna Louise Trust provide that link and continuity, so that parents are encouraged to use those facilities in a way that they might otherwise be reticent about. I return to the point I made earlier; in some cases, facilities are many miles from home and residential respite facilities might be many, many miles away. They are not able to cater for that continuity, and so they are not used.
To return to the facilities available within the Donna Louise Trust, there is wider provision than the facilities on the ground floor that include medical care-type beds for immediate use. In the floors above, there are family rooms where the whole family can have a respite weekend, knowing that they only have to pop downstairs in order to be with their young one, whatever disability they might have. They are on site and can have some family time, perhaps slightly detached but still knowing that they can be with their child should the need arise or, as my hon. Friend the Member for Bassetlaw (John Mann) said, if the continuity of the carer’s needs requires them to do so.
The Donna Louise facility is not only used by families in the area of, for example, my hon. Friend the Member for Staffordshire, Moorlands. The families that use it are from a much wider area. Indeed, I believe the furthest a family has come from is the south coast, and families with particular needs may have even come from areas such as south-east Devon to use the facilities.
People might well say, “You have a fantastic facility. It must be extremely well supported by the local authority and primary care trusts in the area.” Imagine my horror and incredible disappointment, therefore, at the meeting I had with the chief executive of the Donna Louise Trust when he produced the letters that were sent to the then 13 primary care trusts, before the more recent reorganisation. I asked to see the replies, and he produced the one reply he had received. It said, “Thank you very much. We’ll consider it.” So much for primary care trusts doing what I felt, as the local Member of Parliament, that they should be doing—supporting facilities that constituents were using in the catchment areas of those 13 PCTs. The facility rightly has some Government funding, but charitable donations comprised the bulk of the funding used to build it in the first place and provide ongoing care. The Bill is very valuable in respect of the non-medical side of respite care because it puts an enforceable duty on local authorities to fund and assist with such care.
The facility at the Donna Louise Trust also provides up-to-date, top-of-the-range medical care. If the young person needed some respite medical care, for example, at the local university hospital of North Staffordshire or further afield in Stafford, the primary care trust would have to fund it, but because it is provided by the Donna Louise trust, the funding is not forthcoming. That is an appalling state of affairs, which cannot be right and reinforces why I am so delighted that the hon. Member for South-West Devon has promoted the Bill. It gives us an opportunity to make such points in the Chamber and I call on my hon. Friend the Minister to give me some comfort in his speech that the position that I outlined will be resolved.
I now want to consider people with other disabilities. As has already been said, provision is, at best, patchy. In some areas, it borders on acceptable—that is the best I can offer—and in others, it is simply non-existent. I do not wish to rehearse others’ contributions—I am conscious of time and want to bring my remarks to a speedy conclusion—but the effects on families cannot be stressed enough. I may have misread the Human Rights Act 1998, which has been much debated inside and outside the Chamber, but everyone has the right to a family life. That right does not exclude people with disabilities. Indeed, it should embrace and clutch to its heart families with young people with disabilities. Their right to a family life is probably greater than that of the rest of us because of their unique and special circumstances.
Children with disabilities on the autistic spectrum have such particular needs that a different set of circumstances pertains. Perhaps the Bill cannot prescribe the sort of facilities that should be provided, but it requires local authorities, primary care trusts and other health providers to tackle those special needs.
I wish to conclude by going through the Bill. One of my concerns is what would happen if a primary care trust, health provider or local authority wished to interpret it in a way that minimised their duties to tackle the problem. Clause 1 is entitled “Principles” and I can find no fault with them. They echo my feelings about what is needed. However, subsection (2) states:
“Carers for disabled children on an unpaid basis have a right to short breaks from their caring role on a regular basis.”
I am worried about how a health authority or a local authority would interpret “regular basis”. Would they consider once a year to be sufficiently regular? As has been said, that would not be sufficient, although, in many areas, it would be a vast improvement on what currently happens.
Does my hon. Friend agree that one of the technical difficulties is that clause 1 could end up encouraging local authorities not to develop services but to channel people into existing provision because they have cost overheads to maintain and a budget to match? With a legal obligation, x plus y would become z and there would never be variation in considering how facilities should change for the better in future.
I am grateful again to my hon. Friend for his intervention. He raises the extremely good point that less welcoming authorities of whatever flavour—health or local—may well interpret the Bill as being a way of narrowing the provision down to simply box-ticking. The facilities and short breaks that those authorities might make available could be sufficient to tick the “regular” box, but might not meet the needs that we have heard described today.
The next thing that I hope would not be misinterpreted, but could be, is clause 1(3), which says:
“Local authorities and the National Health Service have a responsibility to provide high quality short breaks (or respite care) for the benefit of both disabled children and their carers.”
The definition of “high quality” brings us back to the point that my hon. Friend made in his intervention. An authority could have someone sign off a short break as high quality, but it might be something that none of us in the Chamber would recognise as a high-quality break. I am slightly concerned that we might need to tighten that up when, as I hope, the Minister takes the Bill away and does something constructive and positive with it, so that we can ensure that there are no ways for people to weasel their way out of the requirements.
Does my hon. Friend agree that there is a danger that an authority such as Nottinghamshire social services could choose to use a definition of “high quality” to put people into its own facility—rather than into the excellent voluntary sector Oaklands care home, for example, which has two rooms available for respite care—precisely because it would not bear the overhead costs of that? There is a danger of encouraging a bias, consciously or unconsciously, towards statutory sector provision at the expense of voluntary sector provision.
My hon. Friend yet again makes an extremely good point—indeed, I see the hon. Member for South-West Surrey (Mr. Hunt) nodding in agreement. One of the criticisms—if anyone would dare use such a word—of the Donna Louise trust is that its quality is so good that it goes above and beyond the facilities that are required. I was horrified when I realised that that was being suggested.
Clause 1(4) says:
“In any assessment by a local authority of the ability of a carer to provide care for a disabled child, provision must be made for regular and appropriate short breaks from a caring role for that person.”
As I have a constituency engagement, I shall unfortunately not be able to make the contribution that I had hoped to make, but I wanted to raise a particular point about the principles. I am anxious that the structure of the Bill and the way in which it lays out the principles will risk creating a fest for lawyers, rather than providing the services for people. I understand why the charities and voluntary organisations that support the Bill have adopted that approach. However, I am anxious that having principles in the first clause of the Bill will give space for lots of legal argument, rather than for the business of delivering change for people. As my hon. Friend is dealing with the principles, I wonder whether he will comment on that.
I am grateful to my hon. Friend for that intervention. She is exactly right. We need the Bill to be about getting the job done, not allowing lawyers, representing whomever they represent, to make substantial profits on the back of a cross-party consensus about ensuring that our children with disabilities and their carers receive the support that they need.
To return to the point about “regular” and “appropriate”, the comments that I made a few moments ago again apply. What is “regular” and who would define it? If it was the local authority or the health authority, would that body perhaps be minded to consider the definition deficient for what the family themselves wanted? Who would say what was “appropriate”? What is appropriate for a family with a young person who is perhaps at the extreme end of the autism spectrum might be completely different from what is appropriate for somebody with mobility problems. Indeed, there are so many shades and situations in between that something that did not provide scope for legal implications to arise would be good.
Conscious of the fact that my colleague the hon. Member for Braintree has returned to his place and to ensure that I do not take up too much of the Chamber’s time, I shall not continue the analysis and discussion of the Bill, as I have made the point that I want to make sure that whatever emerges from today’s debate gets that job done. We need to ensure that primary care trusts do not do what they have done in the past, and that applies even to when they have deigned to send back a letter saying, “Thank you, we’ll think about it.” They must get on with doing what our constituents want them to do—indeed, they demand it—and what morality demands that they do.
Local authorities must not fall into the traps that we have rehearsed in today’s debate, but should aspire to the better practices that have been described so that they shine as beacons up and down the country, showing what can be done when the right approach is taken to safeguarding and helping carers and their loved ones, who are in the greatest need and require the greatest support. Therefore, I conclude by once again offering my gratitude to the hon. Member for South-West Devon for bringing the Bill to the House. I hope that the Minister can respond positively to it.
It is a pleasure to contribute to the debate and to follow my hon. Friend the Member for Stoke-on-Trent, South (Mr. Flello), who made such an informed contribution—he has removed a section from my speech in doing so. Also, I am conscious of the need to ensure that the Minister has sufficient time properly to round up the debate, so I shall restrict myself to a number of points rather than cover the range of issues that I had intended to discuss.
First, however, I congratulate the hon. Member for South-West Devon (Mr. Streeter) on putting this proposal to the House. He has heard from his hon. Friends on the Conservative Benches that there are technical issues in relation to the Bill, some of which have been explored by Labour Members. I will be interested to hear whether the Minister shares the concern that the attempt to frame legislation can in itself be over-restrictive on how public sector organisations should act.
I have a number of concerns, but I shall highlight just one as an example of the dangers of prescription: the public sector body will deem such prescription to be its remit—the maximum as well as the minimum within that remit. The interaction with the voluntary sector is fundamental here. I am always rather wary, because it is a convenient excuse of governing parties, be it nationally or locally, that the voluntary sector is highly important so they must ensure that it has a proper role to play. That often means that one can pass the buck.
The hon. Gentleman will know from the excellent work that he has done in relation to drugs that that is one of the problems that we face in this country, and have faced for 50 years. People are happy to pass the buck to the voluntary sector on the basis that any drugs treatment must be a good thing. There is a direct parallel, because who could argue with better provision for disabled children? One would not dare to say that that might be a bad thing.
I want to explore some dichotomies that show that we should not hem in decision makers unduly. There is a balance to be struck, because I entirely endorse the spirit in which the hon. Gentleman promoted his Bill, as well as the principle within the Bill. The fact that the Bill might have some flaws should not give the Minister any cause to hide away from the need for enhanced provision.
Who should finance that enhanced provision? I have no qualms about saying to the Great British public, in my area or elsewhere, that if provision—including the critical element of respite care—for disabled children and disabled people of all ages is not of sufficient volume and quality, taxes should increase to fund it. I am happy to put on record that my social services department should not shy away from making such a call on the Nottinghamshire public if more resources are needed; if it did so, I would applaud it.
Does my hon. Friend agree that one of the problems is that families with disabled children are so stretched in caring for those children that they do not have the voice to argue for the necessary provision? In Lancashire, when an attempt was made to close Maplewood respite care centre in Bamber Bridge in the constituency of my hon. Friend the Member for Preston (Mr. Hendrick), there was a huge outcry from the public against the closure. The public were therefore prepared to pay for the facility, but the bureaucrats in county hall saw the closure as an easy way of making savings, without appreciating the strength of feeling should such a closure go ahead.
My hon. Friend makes an excellent point. I shall return to the question of advocacy in a moment. Certainly, we should not simply call for increased taxation but consider better use of resources. I have written to the chair of social services in my area suggesting that the £350,000 residential care budget for drugs rehabilitation in Bassetlaw is no longer needed, because that rehabilitation is done far more effectively in the community. That £350,000 could be put to more effective use, and from my experience of talking to constituents, respite care is among the demands of those with disabled children: there is a demand for carers, full stop.
Advocacy varies, and there are cultural differences between communities in relation to how they organise themselves. In traditional mining communities, it is common for people to take traditional family responsibilities—I often meet people who have been caring for those with significant and often severe disabilities for perhaps 40 or 50 years at home. They have perhaps been reticent about coming forward and articulating their demands for a better share of the available resources. Different kinds of children and families in different situations have a range of needs. It is critical that, as we take the argument forward that there needs to be an enhanced resource, we are not over-restrictive.
I shall conclude with one question to the Minister. Will he consider circulating the Hansard of this debate to every social services department of every local authority in the country?
In the remaining time, I will do my utmost to put some important things on the parliamentary record, including an announcement about commissioning, which is important to this debate. Stakeholders have been commenting on it and are keen to hear about that. I will also try as best I can in the time available to respond to what has been an excellent debate, which is worthy of social services and other departments around the country receiving a copy of it.
I join all other contributors to the debate in commending and saluting the hon. Member for South-West Devon (Mr. Streeter) and others for the work that they have done on the issue. Both Front-Bench teams are not supporting the Bill, but he knows that we see this debate and the process that we have gone through with the Bill as an important staging post as we move towards the comprehensive spending review.
The parliamentary hearings that my hon. Friend the Member for Blackpool, North and Fleetwood (Mrs. Humble) and my right hon. Friend the Member for Coatbridge, Chryston and Bellshill (Mr. Clarke) so ably chaired, were another extremely important staging post. I took the report of those hearings to bed last night. I have read it on more than one occasion—we had a good debate on the hearings in an Adjournment debate not so long ago. During those hearings, they always made it clear that although the original ten-minute rule Bill introduced by my hon. Friend the Member for Normanton (Ed Balls) was an important staging post, as is this process, the ultimate goal is the comprehensive spending review and what comes from that. Those parliamentary hearings and the process today—not least hearing the speeches and reading the text of speeches by colleagues during the week—will make a real difference to that.
I pay tribute not only to those who have spoken in the debate, but to Lord Adonis for the work that he has done. He has got to know the hon. Member for South-West Devon very well during the process. In fact they attended a joint visit to Enfield yesterday, which I will comment on as well.
The issue of short breaks is of concern to MPs across all parties who want to deal with these difficult issues sensitively. The hon. Gentleman is concerned that the drive to improve services for disabled children should reflect the real needs of families affected. He highlighted some critical issues that the Government are in the process of addressing. He has made a case for a legally enforceable right to short breaks for families with a disabled child. The Government are sympathetic to the intention behind the Bill, as he knows from the meetings that we have had in the run-up to the debate during the week.
We know that, in a great many areas, short break services are simply not meeting the needs of disabled children and their families. It is best that we are all honest and absolutely frank about that. We have only to look at the findings of the parliamentary hearings report to see how significant an issue that can be. They have said themselves during the debate that it was the single most important issue, even though a number of proposals came from those hearings. We must consider that as we move into the comprehensive spending review.
The Mencap report “Breaking Point” powerfully, and sometimes distressingly, details the problems faced all too often by the parents of disabled children in providing round-the-clock care, as well as the repercussions on family life. As the father of a one-year-old, I know that caring for any child can be challenging enough; I can only imagine how difficult it must be when the child has additional needs, whether a learning difficulty, a physical disability, a specific health or life-limiting condition, or a complex combination of conditions. That would stretch any family and any relationship between family members, including the parents.
The disabled children review has received a multitude of responses from parents and others who tell us that short breaks make a positive difference to outcomes for a disabled child. Parents usually cite short break services as the most important they receive. Ninety per cent. of families report that they need to supervise their child for 24 hours a day—24 hours. Short breaks also provide opportunities for disabled children to spend time away from their primary carers and to engage in new experiences, thereby increasing their independence. The report “Still Waiting?” published in March 2006 by the Shared Care Network found that although more than 9,000 disabled children have links with short break carers, another 3,000 are still waiting for a carer to be found.
We must not lose sight of what we have already achieved through “Every Child Matters”. There has been a transformation in the way we look at children and families, built on the central philosophy of progressive universalism—help for all, with extra help for those who need it most. We must never lose sight of that principle, even though we must accept—not least due to this debate—that some areas are missing out. We need to focus better on the principle and we, as a Government, need to consider how we can ensure that that happens right across the country, which is why my Department and the Treasury are conducting a review, commissioned by the Chancellor in 2005, to consider how we can enhance the life chances of disabled children and their families.
I am grateful to my hon. Friend for that question, as everybody—not least the lobby—has a great interest in the answer. The review will report in parallel with the comprehensive spending review. I am afraid I have no further details.
We stressed the importance of short breaks, both in the children’s national service framework and in the report of the Prime Minister’s strategy unit “Improving the Life Chances of Disabled People”. We are increasing funding for short breaks through yearly increases in the carer’s grant, as my hon. Friend the Member for Plymouth, Devonport (Alison Seabeck) pointed out. The grant is worth £185 million in 2006-07 and a fifth of it will be spent on children’s services, including carers for disabled children. In the last local government finance settlement, we confirmed our commitment to continue the carer’s grant until the end of the financial year 2007-08. We need to heighten awareness of the need to recruit carers, and we need to provide a greater number of short breaks. I am more than happy to put that on the record.
There is good practice to help us provide short breaks.
The Minister clearly supports that initiative, as do all Members in the Chamber, so once again I ask him to take up the initiative I proposed. Why does not he wrap up his speech in the next six minutes so that we can take the Bill on to the next stage, or is it the Government’s intention to filibuster until 2.30?
I should like to make some progress, if I may, as I want to make an announcement about commissioning and to try to respond to the debate as best I can.
Particular attention has been paid to children with autistic spectrum disorders, children with complex health needs and children from black and minority ethnic families. For the past three years, my Department has financed the shared care network to run Share the Care week, which takes place in the week commencing 19 March this year. Share the Care week raises awareness of the need for, and contributes to, the recruitment of short break carers.
Disabled children are also benefiting from the Government’s increased spending on children’s social services—a 32 per cent. increase in real terms since 1997 and a total spend of £4.2 billion in 2005-06. The DFES is providing funding to the family fund, providing direct grants each year to around 46,000 families of severely disabled children. The Government also provide annual funding to Contact a Family, allowing it to reach more than 20,000 parents each year.
The Under-Secretary of State for Health, my hon. Friend the Member for Bury, South (Mr. Lewis) announced £25 million of funding this week for emergency respite care in 2007-08. The hon. Member for South-West Devon asked whether it incorporates disabled children and their families, and I can assure him that it will. Our new deal for carers will provide £3 million towards the establishment of a national helpline for carers and a wide-ranging review of the 1999 national carer strategy and £5 million to support the development of an expert carer programme.
However, much more can be, and must be, done. My right hon. Friend the Chancellor of the Exchequer put it very well when he said:
“Every one of the carers I have met is an inspiration and refutes a widespread cynicism that in today’s society selfishness matters more than service to others. Having listened to their stories and the challenges they face, I know we must and will do more in the years to come to help. That is why we are announcing the most far-reaching national consultation ever on the future of carers, to encourage the fullest engagement of the very people who would benefit most.”
I am very encouraged by the fact that Treasury Ministers have been so actively involved in this issue in recent months and the whole House should take heart from that and trust in the process of the comprehensive spending review.
It has been evident in today’s debate that everyone wants the best possible outcome for the families of disabled children so that they can lead ordinary lives. The key to that is matching local provision and need. The current legal framework governing the provision of short breaks or respite care for families with disabled children is contained in the Children Act 1989. Under section 17, local authorities have a general duty to safeguard and promote the welfare of children in their area who are in need and, provided that it is consistent with the child’s safety and welfare, to promote the raising of such children by their families through providing services appropriate to the child’s need.
Local authorities identify the extent of that need, including short break services and make decisions about priorities in their local area. That reflects the increasing emphasis on local autonomy and decision making reflected in the local government White Paper, “Strong and Prosperous Communities”. Having listened to the debate, it is quite evident that many Members feel that many local authorities need a greater focus on this issue. The hon. Member for South-West Devon visited a local authority yesterday—Enfield, which has been mentioned already—that is performing exceptionally well within the existing legal framework. It provides foster-based family services, play schemes, after-school clubs, a centre that is open at weekends, play schemes during the summer and many other things as well, which he saw yesterday.
If 150 local authorities were all doing what Enfield is doing now, or doing the things that were mentioned by my hon. Friends in places such as Greater Manchester, more people would realise what can be achieved within the existing legal framework. We must find a way to share that best practice and to ensure that the Enfield example is not an exception.
Work is under way to ensure that the children’s national service framework standard for disabled children is implemented through “Every Child Matters”. We are seeing significant local progress not only in Enfield, but in other areas as well. Enfield has successfully provided the menu of options, described by my Friend the Member for Blackpool, North and Fleetwood (Mrs. Humble), that is so important to parents and disabled children. In many cases, the availability not of traditional residential care, but of respite care in their own homes makes a real difference to people’s lives.
I also understand that one of the Enfield’s great successes is its local hub, around a former residential care home, which has been converted into a special centre in the heart of the local community, making a real difference to local people’s lives. By minimising expensive, disruptive 52-week placements in favour of wider short break care, Enfield has created a successful system within the current legal framework. We need to share such good practice and to learn from local authorities that are successfully delivering short break services to the families of disabled children. I personally think that the debate has been invaluable in that discussion.
I shall be extremely brief—conscious, as ever, of the comments made by the hon. Member for Braintree (Mr. Newmark). There is indeed legislative provision to enable forward-looking councils to deliver such services, but is not the point of today’s debate to put—at the risk of using unparliamentary language—a boot in an appropriate place to make those who are reticent about delivering them get on and deliver them?
I understand what my hon. Friend says, but the debate is about other things as well, not least commissioning, which I shall come to now.
I am pleased to announce that we will work closely with the Council for Disabled Children and invest £60,000 to provide national guidance on commissioning short break care services. The work will seek out and identify models of good practice in the delivery of short breaks and evidence on cost-effectiveness and outcomes. The Government are keen that existing spending on short breaks is spent in a cost-effective manner that combines service quality to parents and children and measurable outcomes. The guidance will help to achieve that, and it is what has been requested by very many stakeholders, who have been working hard to achieve it.
I thank my hon. Friend for his comments about commissioning. When he is working on the new commissioning scheme, will he incorporate capacity building within it? We need not just to commission, but to develop the things that are good, especially in those areas where they do not already exist.
I entirely agree with my hon. Friend that this is an issue of capacity, as well as of best-practice commissioning.
The Government have made significant changes to disability legislation, thereby delivering the biggest extension in disability civil rights that this country has ever seen. Most recently, the Disability Discrimination Act 2005 introduced a new duty on public bodies to promote equality of opportunity for disabled people, covering all the functions of public bodies. I am particularly aware of the comments made by my hon. Friend the Member for Aberavon (Dr. Francis) about the rights of carers and their understandable feeling that they are likely to be discriminated against. The measure includes local authorities and the social care services they work with.
Disabled people, including disabled children, must be involved in producing new schemes with authorities, taking into account local priorities. The disability equality duty, as it is commonly referred to, has the potential over time to have a significant impact on the delivery of services for disabled children by local authorities. We already know, for example, that local authorities that have developed innovative ways of delivering short breaks have involved not only parents but disabled children in the development of their short break schemes.
Despite the policy framework and the Government’s investment, however, the present situation is too hard for too many families. I am talking about parents who need constantly to supervise a disabled child, often to the detriment of the child’s siblings; disabled children who are ill at ease in a short break care environment, because those breaks are so infrequent; and families waiting for a short break that never comes.
We are examining proposals to improve the provision of short break services for disabled children and their families in the disabled children’s review. The review considers short break services, but not in isolation. They are considered alongside a range of services that are needed to support disabled children and their families. We do not wish to pre-empt the outcome of the review, which will use the evidence gathered to identify the best way forward. The review will include an appropriate consideration of how to support local authorities in giving priority to disabled children’s services, among the many conflicting pressures that they face. As the Economic Secretary said at the Rachel Squire memorial lecture on Tuesday, the review must balance the importance of making disabled children a local and national priority with the need to maintain local flexibility to allow agencies to develop innovative solutions and a set of local priorities.
As the Economic Secretary announced earlier this week, my Department and the Treasury will work closely together to develop a national disabled children indicator in the new set of public service agreements, supported across Government at the comprehensive spending review. It was specifically requested in the executive summary of the recent hearings that a national public service agreement target should be developed for services for disabled children. I am pleased to see that the work of my hon. Friends and colleagues in the House is already having an impact in the run-up to the CSR, when it comes to shaping policy. The measure will allow the practices of the best local authorities to be replicated across the country. A national indicator will help to bring about improvements and accountability at a local level.
There is no doubt that the Bill has raised the profile of short break services, but an open-ended legislative commitment is not the best way forward. Although the Government are ultimately unable to support the Bill, we are fully committed to addressing the problems that exist in the current system. Short breaks are a comparatively small, yet invaluable, part of our plans for improvements in social care policy that we have implemented since 1997 and that we will continue to implement.
As I have previously suggested, the timing of the debate is unfortunate, because it falls before the outcomes of both the disabled children’s review and the comprehensive spending review. The disabled children’s review has a definite process and timetable, and is linked directly, as I have said, to the outcome of the comprehensive spending review. However, we intend to make new policy proposals to improve the provision of services for disabled children and their families, including short breaks. I cannot be any more categoric than that, and I hope that that is what my hon. Friends hoped to hear from me. The new proposals will reflect the evidence gathered by the disabled children’s review and identify the best ways of ensuring that there is an effective provision of services to secure delivery and maximise impact.
The Bill is not the end of a process, but a staging post on the path to improving short breaks provision. I think that the whole House would like to close the debate by joining me in praising all those who are dedicating their time—
It being half-past Two o’clock, the debate stood adjourned.
Debate to be resumed on Friday 29 June.