|Previous Section||Index||Home Page|
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 holidayone 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 weeks 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.
Tim Loughton (East Worthing and Shoreham) (Con): 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.
Mr. Streeter: 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. Friends 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 Mencaps 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. Mencaps 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.
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 childrentime 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.
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
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.
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 childrens 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 childrens 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 HotspurLiverpool 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?
Mr. Streeter: 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 technicalthere 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 situationI was not aware of thiswhereby 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.
Mark Williams (Ceredigion) (LD): To back up the hon. Gentlemans 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.
Mr. Streeter: I am grateful for the hon. Gentlemans intervention, and I hope that the Minister takes that point on board, because we want a change to the sectors 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 yesterdays 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.
Mr. Streeter: 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 todays 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.
Mrs. Joan Humble (Blackpool, North and Fleetwood) (Lab):
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 Members 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 todays 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.
|Next Section||Index||Home Page|