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A county council in England provides services to 729 disabled children in its area. But 40% of its disabled childrens 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.
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.
John Mann (Bassetlaw) (Lab): 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.
Mr. Flello: 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 childs 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?
Mrs. Humble: 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.
John Mann: 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
Mrs. Humble: 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 childrens 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 childs 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 breaksit 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 childs 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 doesnt take a rocket scientist to work out the savings if my authority provided me with one night a week respitesay, £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.
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 childrenthere 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.
Most parents expect sleepless nights when their children are babies and it might be difficult for a while but you know theyll 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 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 wasnt long, but by the time I came out hed 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 youve been up all night something like this can be the last straw: you just want to cry and give up but you cant, 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.
Mr. Flello: 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 natures break to find washing up liquid all over the floor?
Mrs. Humble: 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.
Fiona Mactaggart (Slough) (Lab): 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 respitefor 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.
Mrs. Humble: 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 homea 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.
Dr. Starkey: 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.
Mrs. Humble: 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 examplesnot enough, but there are some, and we want more. I have spoken with staff in Blackpools 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 childs 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.
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