Clause 25

Children and Young Persons Bill [Lords] – in a Public Bill Committee at 5:00 pm on 1st July 2008.

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Breaks from caring for disabled children

Photo of Tim Loughton Tim Loughton Shadow Minister (Children)

I beg to move amendment No. 20, in clause 25, page 19, line 38, at end insert ‘appropriate’.

The amendment is probing and is intended to give the Committee the opportunity to ask questions about the clause. We welcome the clause and the work that has gone into it. The measure originated with the Secretary of State who, when he was a Back Bencher, did some good work on the role of carers for disabled children and the need to give better support for carers, who are often parents or other family members, and who do a remarkable job caring for disabled children day in, day out. Many of them do so in challenging conditions, with little recognition and not nearly enough support from the state.

Without the work of those carers, the bill that would fall on the state would be considerable, let alone the additional hardship for the disabled children themselves. We owe an enormous debt of gratitude to carers, who take upon themselves, often unasked and without demurring from the challenge, the enormous role of looking after  disabled children and giving them as much love and attention as they possibly can within a home environment. That is to be applauded, and we should be putting every service at their disposal, rather than putting obstacles in their way, which happens too often. It is always a great frustration to me when I am told about yet another piece of bureaucracy or yet more form filling that a carer will have to go through to get a basic entitlement for the person for whom they care.

It is welcome that the Bill includes a provision for carers to take breaks from their duties, that it recognises them in that way, and that the Government have given a sum of money for that purpose. We hope that that is only the first instalment, because this is a huge enterprise and we are talking about a large number of children and their carers. I have seen carers in my constituency for whom the odd bit of respite—it could be a weekend off or a week away, just to regain their sanity and to spend time with their partners, husbands, wives or whatever—can make all the difference. It can help them to recharge their batteries and allow them to get on with what would otherwise be the 365-day-a-year job of looking after somebody with a disability. That could provide an enormous boost and would be great for allowing people to recharge their batteries to enable them physically to be able to do the job. It is also a positive recognition that the job that they do is greatly appreciated. We should be doing more to make it easier for them to carry out their job.

The Opposition welcome the extra provisions that will enable carers to have breaks. Subsection (3) is about assisting

“individuals who provide care for such children to continue to do so, or to do so more effectively, by giving them breaks from caring”.

The amendment would simply add a rider that the breaks should be “appropriate”. Usually, people do not ask for much, but they ask for breaks at appropriate times—when pressure has built up, for example, or when they can take a whole week off. We are not talking about a couple of hours here and a couple of hours there, although some carers need such breaks. Carers simply want to know that they are entitled to breaks and that they can rely on the provision, so that they can take every Friday evening off or one Friday evening a month or whatever it might be. In any case, it must be “appropriate”. It is no good the local authority saying, “We can provide respite care for you between 2 o’clock and 6 o’clock on a Wednesday afternoon every fifth week,” or such like if that does not fit in with what the carer needs and can use.

Inserting the word “appropriate”, subject to definitions within regulations, would give that extra bit of strength to the clause. Carers would not simply get a token bit of respite, for which they are meant to be grateful, but “appropriate” respite, as far as practicably possible, so that it really makes a difference and they are in a better position to resume and continue their very important role as carers for disabled children.

Photo of Angela Watkinson Angela Watkinson Opposition Whip (Commons) 5:15 pm, 1st July 2008

I welcome the clause, which is a valuable part of the Bill, but I also support my hon. Friend in wishing to add the word “appropriate” towards the end of subsection (3). A break from caring for a child with special needs has to be free from worry;  otherwise, it does not have the desired effect. That is especially important when the child has special needs that relate to behaviour or the way in which they respond to people and their surroundings. Children on the autistic disorder spectrum, in particular, are a good example: they do not respond well to change in either their environment or the people around them. They like things to be familiar and they enjoy their routine. They are also accomplished escapers, so it is very important that the provision for them is in a safe environment and that highly trained and appropriately trained people are looking after them.

“Appropriate” provision means provision of a safe environment and specially trained staff who understand the challenges that such children face. Most children’s services know very well what is needed and are highly sympathetic to the families caring for a child with profound needs, but often they do not have the funding to provide that very specific, appropriate accommodation.

There is an organisation in my constituency called RAGS—Romford Autistic Group Support. It is a group of parents who have children on the autistic spectrum. I happen to be patron of that charity, and when I meet the parents they tell me stories about their everyday lives that illustrate how difficult their lives are. They do not experience normality as we accept it. Lack of sleep is a recurring theme. One mother told me that her child can stay awake for a week and the only time she can get to sleep is when he is at school and she puts a “Do not disturb” notice on her front door. It is difficult to socialise. It is difficult to invite people to the home or to go out, even to the supermarket, because of the unpredictability of the children’s behaviour. There is great pressure on siblings, who are not able to invite friends home.

One mother told me last week at the organisation’s annual dinner that she has no off-street parking, and if there is no parking space outside her home when she gets back, the child will not get out of the car. If she stops outside an unfamiliar house, he will not get out because it is not his home, so she has to drive round for a while and then come back to their home and wait and hope that there will be a parking space outside it. Such things are taken for granted by those parents as part of their everyday life, but to us they seem an horrendous mountain to climb.

The challenge of coping with school holidays, when parents do not have that break when the child is at school, compounds the difficulties of everyday life. The challenge of just coping is enormous, and that is what makes respite care extremely important. I welcome the clause, but I think that the word “appropriate” is especially important when we are discussing provision for children with profound needs. The situation is unlike that of a child with, for example, mobility problems. It is relatively easy to make adaptations to buildings with ramps and low switches, so that children using wheelchairs can be accommodated. For children who have behavioural problems or who do not understand their surroundings, it is much more difficult to make proper provision and to have the staff who understand what they need, and there is a huge cost involved in that. I hope that the Minister will give some thought to how local authorities, with the best will in the world, will be able to provide what the Bill requires them to.

Photo of Annette Brooke Annette Brooke Shadow Spokesperson (Children, Schools and Families), Shadow Minister (Education)

I would like to place it on the record that the Liberal Democrats strongly support the clause. We are pleased that it was included in the Bill, because there was considerable debate about whether it was necessary to place such a duty on the local authority. I am particularly pleased that Lord Adonis came to the view that it should be in the Bill.

I am not entirely convinced by the argument about the word “appropriate”, so I will listen to the Minister’s response to the amendment. I appreciate that the Government have put considerable financial resources into short breaks. It is very welcome, but it is such a huge area that almost unlimited demands could be placed upon that relatively small pot. As I understand it, for the most part that money will go to children with the most severe disabilities. I find it difficult to believe that a local authority would go out of its way to offer inappropriate respite care. I realise that the Minister may have more to say about that. There is no suggestion that I do not want disabled children to have appropriate care, but I am not convinced about this amendment.

Photo of Kevin Brennan Kevin Brennan Parliamentary Under-Secretary (Department for Children, Schools and Families) (Children, Young People and Families)

I am sorry to be so disappointing. It is part of the job sometimes. We all welcome the clause. The hon. Member for East Worthing and Shoreham was right to single out the Secretary of State for the work that he has done. Many other hon. Members, including 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), had parliamentary hearings on this matter.

As the hon. Member for Upminster said, we all come across examples in our constituencies of parents who have these sorts of caring responsibilities, looking after children who are often severely disabled. One of my constituents, Nia Wyn, wrote a bestseller on the subject called “Blue Sky July”, which was the book of the week on Radio 4 and book of the month on Radio 5. It was published by my wife, incidentally, and I recommend it to all members of the Committee. That is not a plug; the book is very pertinent to this subject.

This is very serious matter and everybody welcomes this initiative. Without respite services, parents often have no relief from their caring responsibilities. I am in no doubt that without short-break provision, the care population would grow considerably. That would be a cost to the state and to society as a whole. We should not forget either the wider benefits of short-break provision beyond relieving parents. Any parent can testify that it is beneficial and healthy for children to gain positive experiences away from home, to develop wider social networks and be exposed to new influences, be that with another trusted adult or in leisure or youth work based activities, where disabled children and young people can mix with their peers. Such opportunities for children’s personal and social development are vital.

Members of the Committee will know that the Government are committed to transforming short-break services and have set aside, as the hon. Gentleman mentioned, significant additional funding for short-break services over the next three years: £359 million is to be provided to local authorities, alongside further funding to health care bodies to enable a combined approach. Clause 25 will ensure that short-break provision becomes a recognised part of local authority essential services, reflecting the importance that is attached to these services by families.

When I spoke to the young carers at Fairbourne manor last weekend, one of the things that they greatly welcomed was respite provision, because about a third of young carers look after a sibling rather than a parent. They welcomed the additional funds, as well as the broader measures in the carers strategy. The clause adds the provision of short breaks for parents and others caring for disabled children to the range of services that local authorities must provide for families, and in so doing puts the services on a statutory footing.

The new duty makes it clear that breaks should be provided not just for those carers who are struggling to maintain their caring role, but to those for whom a break would improve the quality of the care that they can offer. Short breaks should not only be used as crisis intervention, but should also help carers to maintain and improve the quality of care that they naturally wish to provide. I saw good examples of that in Cardiff a few months ago, when I visited an NCH home where respite care was provided for children. The children I saw there were at the severe end of the autistic spectrum. We cannot take a one-size-fits-all approach.

We are taking steps to ensure that the significant investment that the Government will be making over the next three years will result in transformed services that are responsive to individual needs. It will include the appointment of a national support body to assist local authorities and primary care trusts in delivering change. We will also use a combination of regulation and guidance to ensure that local authorities design and deliver a range and variety of short-break provision capable of fitting the often complex lives of disabled children and their carers.

Now for the disappointing bit. The hon. Member for East Worthing and Shoreham may not be surprised to hear that we believe that the amendment is unnecessary. Clause 25 adds provision for short breaks for parents and others caring for disabled children to the range of services that local authorities must provide. Part 1 of schedule 2 to the Children Act 1989, which the clause amends, provides for some of the specific services that the local authority must provide under its general duties under section 17 of that Act. The general duty is

“to safeguard and promote the welfare of children within their area who are in need” and to

“promote the upbringing...by their families, by providing a range and level of services appropriate to those children’s needs.”

I thank hon. Members for their kind support for the clause and for their indulgence on the legal and technical point of substance. I hope that the hon. Gentleman will agree that the amendment is unnecessary, and I therefore ask him to withdraw it.

Photo of Tim Loughton Tim Loughton Shadow Minister (Children)

It is a disappointment, but not a great surprise. It was a probing amendment. The Minister and all members of the Committee have the same intention. The proof of the pudding will be in the eating, particularly the extra £359 million that is being made available, and whether the provision will provide the sort of appropriate breaks that we know from our constituents are needed.

My hon. Friend the Member for Upminster was right to mention the carers of children with autistic spectrum disorder-type challenges. I would surmise that we all  know of difficult constituency cases where particular requirements are involved. As with children with physical disabilities, breaks may often involve carers looking after the child in the home. It is not necessarily a question of the child being shipped off, leading to the problems caused by a lack of familiarity with the surroundings, because the facilities that are needed are often already to be found in the home. It is a question of getting someone to come to the house in place of the carers, while they go away for a few days.

We have had a useful debate. I think that we all agree that it would be slightly churlish of me—I do not want to be accused again of being churlish by the hon. Member for Stafford—not to beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Clause 25 ordered to stand part of the Bill.