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 circumstancemore 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 parents 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.
Mr. Tim Boswell (Daventry) (Con): 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?
Mr. Streeter: 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 childrens well-being, I join the Childrens 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 Consortiumand 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 Walesnot least by the 15,000 supporters of the campaign. More than 2,400 e-mails have been sent by the campaigns 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 surgeriesfamilies 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 oclock, 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 partiesincluding 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.
Mr. Robert Flello (Stoke-on-Trent, South) (Lab): Has the hon. Gentleman had any further discussions with hon. Members, such as the Economic Secretary, about this crucial issue? If so, will he share the content of those discussions?
Mr. Streeter: 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 Governments commitment in the comprehensive spending reviewabout which I will say more later, and I hope that the Minister will say much more about itand he was able to say a little more about the Governments 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.
Mr. Brooks Newmark (Braintree) (Con): I, too, am aware of the Economic Secretarys commitment. Unfortunately, the Government seem to be failing, once again, to put money behind the commitment, and we need money behind it if we are to deliver what the Bill seeks.
Mr. Streeter: 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.
Mr. Andrew Pelling (Croydon, Central) (Con): I may be in danger of pre-empting some of my hon. Friends 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 agohard to believewhich 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 arent you doing that already; why hasnt 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.
Mr. Andrew Smith (Oxford, East) (Lab): 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?
Mr. Streeter: I am grateful to the right hon. Gentleman for that invitation: the estimateI think that the calculations have been done by the Government, but the Minister will share that information with us later onis 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 Governments difficultyI am not here to nit-pick with thembut 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.
Mr. Desmond Swayne (New Forest, West) (Con):
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.
Mr. Streeter: 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 familytheir own words, not mineso 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.
Dr. Phyllis Starkey (Milton Keynes, South-West) (Lab): I, too, fully support the Bill and have added my voice in arguing that that must be a high priority in the Governments comprehensive spending review, but I want to draw to the hon. Gentlemans 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.
Mr. Streeter: I agree with the hon. Lady. Indeed, parents also come to usdo 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 instalmentit is a matter of huge prioritythen, we have to build on that. I agree with her and, if money were no object, we would do that immediately.
Mr. Flello: 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.
Mr. Streeter: 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.
Tony Baldry (Banbury) (Con):
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?
Mr. Streeter: 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.
The Parliamentary Under-Secretary of State for Education and Skills (Mr. Parmjit Dhanda): I am sorry to disappoint the hon. Gentleman at this stage, but he will be well aware that the disabled childrens review, which is taking place at the moment in harness with the comprehensive spending review, is not just about money.
Mr. Streeter: 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.
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