There are two important campaigns at this time that seek changes to the mobility component of disability living allowance. One, which has been under way for some years and is led by Help the Aged, calls for the benefit to be extended to disabled people who make their claim after the age of 65. I support that objective. The fact that elderly people cannot get help with mobility costs, access Motability or the specialised vehicle fund or get exemption from vehicle excise duty prevents them from living the independent, healthy and active lives that they otherwise might.
The second campaign, which is led by the Royal National Institute of Blind People, aims to make blind people eligible for the higher rate mobility component of DLA. Like many Members of this House, I met a constituent with severe sight impairment at the lobby in Westminster on 15 October. He explained to me what a difference the extra money to help him get around would make to the quality of his life. I know that Ministers have expressed sympathy with the objectives of the campaign, and I look forward to the necessary changes being made in the near future.
However, what I want to talk about this afternoon is how the lower age limit for eligibility for the mobility component of DLA affects some severely disabled young children. In one important sense, it relates to the case for extending the mobility component to sight-impaired people. In both cases, for beneficial reform to take place, we have to stop basing eligibility only on the physical inability to walk.
The rules of eligibility for the mobility component of DLA mean that children under the age of three cannot have it claimed for them. On the face of it, that might seem a perfectly sensible provision. After all, until now, entitlement to the benefit has been based on the inability, or virtual inability, to perform the physical act of walking. It is perfectly logical, therefore, to say that as children in their first years of life do not walk, or certainly do not get around independently, they should not receive the mobility component. Most kids, until they are three, will mostly be pushed around in pushchairs, so there is no reason to take compensatory action because of their inability to walk. That approach is logical but ignores two things: first, the advances in therapeutic technology—often, bulky, heavy technology—to help disabled children develop more successfully as they grow in the early years or just to have a more comfortable life and, secondly, the difference that access to this benefit could make to families with a disabled child in the first years of coming to terms with an entirely new situation.
I became aware of this serious omission in disability provision just over four years ago when I met Mr. and Mrs. Owen—Alison and Andrew—and their daughter Seren, who live in my constituency. Seren was born on 14 April 2002, by caesarean section, in Singleton hospital, Swansea. She was in a very poor way and Alison and Andrew were warned after 18 hours that she was likely to die and the only treatment that might be able to save her was available at Glenfield hospital, Leicester. A Sea King helicopter was sent to Leicester, for necessary equipment and a nurse, and then to Swansea for Seren. Alison and Andrew were told that they should name the child in case she did not survive. As it was night time when she was being picked up and taken up into the sky, they called her Seren, which means “star” in the Welsh language.
Seren was, and is, a fighter. She lived and returned to Swansea. When she was 12 days old her parents were told that Seren had cerebral palsy. In fact, she had quadriplegic cerebral palsy with hypertonia in all four limbs and hypotonia in her torso and cerebral visual impairment and some sensory hearing impairment. When I met her, Seren was about two and a half years old. Even at that age, she had already had a lot of medical attention and hospital treatments. The good news, from her parents’ point of view, was that comparatively recent developments in equipment for children with her sort of condition meant that operations and other intrusive treatment that would, in the past, have been necessary as she grew up could be avoided.
Seren’s parents, like all parents, wanted to give her the best, highest quality of life possible so they got hold of a range of positioning and seating equipment designed to aid postural management. I visited the Owen family in their home to see this equipment. I lifted, or tried to lift, some of it. I can tell hon. Members that it was extremely bulky and some of it was very heavy.
I would just like to tell the Minister what the Owens needed to take with them when they took Seren out for a day, or for part of the day, and what they needed if they wanted to take her away for any longer period of time, to visit her grandparents or go on holiday. On a day out in Andrew’s Golf, the first essential was the specialist car seat, which gave total postural support and kept Seren’s spine straight, hopefully helping to remove the need for operations to correct curvature at a later stage. This was extremely heavy and, of the members of the family, only Andrew could lift it, and that was not good for his health. But living and working arrangements meant that it had to be transferred between vehicles at times.
When they reached their destination they also needed Seren’s special wheelchair, which was issued by the artificial limb and appliance centre at Rookwood. This was a CAPS II seating system fitted within a Blade Plus wheelchair, which is what is called an aggressive form of seating and support that, as with the car seat, gave the postural management that she needed. This was a very solid piece of equipment that did not fold down like a normal pushchair or some other wheelchairs. In the Golf, it completely filled the boot. When they added the tubes and feeding sets that Seren needed, as well as all the normal baby stuff for a child of her age, there was only room for mum, dad and Seren. If any members of the extended family, especially grandparents, wanted to accompany them, a second car had to be taken.
At that time, Alison and Andrew only had Seren, but they were conscious that it would be even more difficult for a family with more children, as well as a severely disabled child of under three years. Would they be denied the opportunity of going out as a family at all? Of course, even apart from Alison and Andrew’s determination that they should go out as a family to do all the things that we all do as families, Seren needed to be transported to different places for her development—to physiotherapy and hydrotherapy, the NCH “Stepping Stones” project, occupational therapy, speech therapy and work with her vision impairment teacher.
What happened, then, if they wanted to take Seren somewhere and stay overnight or over several nights? What was needed then? Of course, all the things I have mentioned for a day trip were needed, but with the addition of Seren’s Jenx standing frame, which she needed because otherwise, as she could not walk or stand, the ball and socket joint in her hips would not develop normally. The standing frame helped compensate for this, again hopefully reducing the likelihood of the need for restorative surgery or other treatment later in life. She needed her R82 Panda hi/lo chair, which was basically her feeding and social interaction chair; it was a sort of waistcoat design that provided total support of the torso but freed the arms to reduce tension. That piece of equipment, on its own, also completely filled the boot of the Golf. Seren could not at that time take all her food by mouth. She received food overnight through a pump feeding system that involved a stand and pump. That needed to be taken along, as did the foods and medicines that she required.
On a longer stay away, Alison and Andrew would want to take Seren’s special toys—bead curtains, for instance—which are designed to aid the development of children with severe learning difficulties. They would have liked to be able to take Seren’s other more comfortable Tumbleform chair, made from foam sponge and in which she could spend up to half an hour without harm being done. They would want Seren’s wedge and Dreama sleep system, which kept her legs separated when she was sleeping, which was also important for her future development.
It was impossible for the Owen family to travel in one car on a visit overnight, or for longer, at least without leaving beneficial pieces of equipment behind. Fortunately, Alison managed to run another small car, so although they could not travel as a family they had the means to get themselves and all Seren’s stuff from A to B. But, again, they asked the question, “How do families manage who do not have access to a second vehicle?” I suspect that they are trapped in their own homes, to a very large extent.
To add to the difficulties for Seren’s family, she had just had Botox injections to loosen her hips and she was supposed to spend time in a plaster cast, so transporting her in a normal family car was again made that bit more difficult. The Owens had identified the vehicle that would have made their lives so much more easily managed: a specially adapted large people mover with any lip on the boot removed and a ramp or lift on the back so that Seren could be wheeled straight in. Of course, from their own incomes they just could not afford this. If the mobility component of disability living allowance and, therefore, access to a Motability deal were available to under threes, they could have had that from the time they first needed it. Alison and Andrew, through a combination of determination, superb logistical planning and buckets full of love, made sure that they provided Seren with everything that could help her, including getting her out and around. Seren reached the age of three in April 2005 and they were able to use Motability to get the transport that she needed.
During a street surgery in their village this summer, I met the Owen family, now extended again. They were just returning from a holiday in the vehicle that makes life so much easier for them. Seeing Seren again and noting how successful those heavy therapeutic devices had been made me think again that these people should have had that vehicle from the day they first needed it, and it made me determined to try again to persuade the Government to, at least, reconsider their approach to the needs of disabled children under three.
I have collected other testimony from affected parents, not just in my constituency but across the country.
I am listening to what the hon. Gentleman is saying. This is a tragic situation for parents throughout the country. I hope that the hon. Gentleman is successful in what he is pushing for. I emphasise that the case that he is describing is repeated throughout the country. The Liberal Democrats would be glad to give any support that they can to push the Government to be flexible about the age three limit.
I appreciate that. I am sure that that is true.
I give some testimony from other parents who are affected, some in quite different situations to those of Seren’s parents. Apart from failing to keep up with the sort of therapeutic technology that Seren needed, the three-years rule also fails to recognise that some disabled children under three have powered wheelchairs. Many ordinary family cars cannot take such wheelchairs or, even if they can, it is difficult to get them into the vehicle. Mrs. S’s daughter, who falls into this category, says:
“The allowance should take into consideration what the child needs—not how old they are.”
Mrs. DP has a disabled child and believes that the independence provided by her powered wheelchair
“has been so good for her self esteem and quality of life”.
Unfortunately, this cannot be transported in the family car. Another parent said,
“If your child is disabled, it’s not about their age it’s about them and what they need.”
I have been told about a one-year-old girl with spina bifida, hydrocephalus and cleft pallet, who is being tube-fed into her jejunum and is oxygen-dependent. The family relies on taxis to transport all her equipment on the frequent hospital visits that they have to make.
I have been provided with numerous other examples, but the picture is the same. What was true for Seren before she reached the age of three is true for a number of other very young disabled children. There is a need here that we are failing to meet and it is time we started thinking about how we can meet it.
I congratulate my hon. Friend the Member for Gower (Mr. Caton) on securing this important debate and setting out his case so eloquently. I send my regards to Alison and Andrew, Seren and the other additions to the Owen family, whom he did not name. I also congratulate him on his Adjournment debate on the subject in 2004, which I believe was instrumental, or at least a catalyst, in lowering the age from five to three.
My hon. Friend, as an expert in these matters, will know that disability living allowance is the principal benefit available to severely disabled people who acquire their disability early or relatively early in life and who have had restricted opportunities to work, earn and save, unlike those who become disabled in later life. It is not a compensatory benefit, but it is intended to provide a measure of financial assistance to help disabled people meet the diverse range of additional costs that arise from disability. The benefit is not based on someone having a particular disability or medical condition. Although it is important to know what someone’s disability is, the key to entitlement is what effect the disability has on a disabled person’s requirement for personal care or supervision and/or whether they have mobility difficulties.
Disability living allowance is made up of two components: a care component paid at one of three rates and a mobility component paid at one of two rates. Broadly speaking, the care component is awarded on the basis that an individual requires personal care or supervision because they have a physical and/or mental disability, and the rate at which it is paid increases with need. The mobility component is not awarded on a sliding scale of need. Its two separate rates recognise the two key features that can restrict people’s mobility out of doors. For the higher rate, that means physical inability or near inability to make progress on foot, and for the lower rate, it means a requirement to have someone to provide guidance or supervision when out of doors on unfamiliar routes because of a physical or mental disability.
That, briefly, is the basis for entitlement, but entitlement to either component does not mean that the recipient is compelled to spend their benefit on care or mobility-related extra costs. For example, someone in receipt of the care component could, if they wished, spend their benefit on other disability-related expenses, such as additional heating or washing. DLA puts the disabled person in control and lets them decide how to spend their benefit according to their own unique priorities. My hon. Friend will know that nearly 3 million people receive the allowance, including more than 300,000 children, and the numbers continue to grow year on year.
On the specific issue of the higher rate mobility component, I am not—he will be tired of hearing this—unsympathetic to the arguments that my hon. Friend put forward, but the higher rate mobility component is determined, rightly, by the inability or virtual inability to walk when out of doors. When deciding entitlement to that component, decision makers must consider how far the person can walk, the speed of their walking, the manner of their walking, whether walking brings on severe discomfort and whether the act of walking could be detrimental to their health.
Those are the statutory requirements, which are intended to achieve a reasonable view of someone’s walking ability. I know that my hon. Friend is not challenging those criteria and that his argument is simply that a different set of criteria should be invoked for the under-threes, given the impact of the child’s needs, including for heavy therapeutic machinery to assist them. I am not saying that outlining the current criteria smashes entirely his argument that there should be an extra component for under-threes, and I will return to that point.
I mentioned the campaign by the Royal National Institute of Blind People in which blind people are seeking a higher mobility rate. We have heard Ministers give that campaign sympathetic responses. If that can happen for blind people, the walking criterion has gone anyway. Surely that gives us the opportunity to consider the rights of very young severely disabled children.
I will come on to the RNIB campaign. At the moment, at least, it is not something that we plan to deal with in a positive fashion. However, I take my hon. Friend’s point about the criteria and the wider point made by him and others that the needs of the individual should predominate over administrative and bureaucratic criteria. I accept that; it is a perfectly reasonable point of view.
With reference to young children, I think that we can all agree that the great majority of non-disabled children can walk by their third birthday, and many much earlier than that, but that very few can walk considerable distances. Most still require significant help from their parents and rely absolutely on prams, buggies and so on. However, hugely significant scientific and medical advances over recent years have enabled more children who might, sadly, have died to have a good quality of life up to three and beyond. They are not confined to long-term residential care or worse but can, through a variety of technical innovations, live extended and fulfilling lives at home. That is something that we all celebrate. I take my hon. Friend’s point that sometimes the equipment used to support such children can prove bulky, heavy or awkward and place a great strain not only on parents’ and siblings’ time, resources and finances but on their quality of life, as he eloquently explained, and on normality of life, which I am sure is what they strive to achieve.
A range of measures already exists over and above the care component of disability living allowance to help families with young disabled children. The disability-related premiums in the income-related benefits and the additional elements for disabled children in tax credits are two such statutory provisions. Extra statutory schemes such as the family fund can also provide help for poorer families who find themselves in situations such as those described earlier. The fund can help with travelling costs and can extend to the purchase of vehicles in exceptional cases, although all decisions are taken, rightly, on a case-by-case basis. As I have said, just over 306,000 children are in receipt of DLA, 42,000 of whom are under the age of five. They represent the Caton gap, if I may call it that, in terms of the reduction from five to three.
I will carry on attributing it to my hon. Friend. He was there in spirit, if not in actuality.
We keep matters under constant review. I would be grateful, as would the Under-Secretary of State for Work and Pensions, my hon. Friend the Member for Chatham and Aylesford (Jonathan Shaw)—he would normally respond to such a debate, but he has the great delight of appearing today before the Joint Committee on Human Rights—if my hon. Friend, the hon. Member for Edinburgh, West (John Barrett) and others submitted to us the examples that they gave and more. I shall endeavour, as my parliamentary colleague did in 2004, to get officials to reconsider not just the higher mobility component of DLA but the broader context of the benefits and statutory programmes that might have assisted my hon. Friend’s constituents Alison and Andrew when Seren was under three.
When Ministers say that they will keep something under review, that sometimes implies, “I’ve given you half a bone; now go away, please.” I actually mean it in this case. The cases that my hon. Friend has cited are significant, sensitive and serious. The matter is worth revisiting, and a responsible Government should do so regularly, but he will forgive me if I consider it in detail as well as in the round along with other options. I think that the answer will involve more than just flicking the switch for under-threes in terms of the higher component of DLA, but there might be some way to look across the piece at the statutory provision and see whether we can get much-needed equipment for people like Seren and her family, whom I use as a proxy, as Seren is now over three. I will ensure that I give my hon. Friend a full response at the earliest opportunity after we have gone into that much more detail.
Just about, but you will forgive me, Mr. Key, for saying, because I am a bit of a stickler for these things, that in Adjournment debates here or in the Chamber, it is customary, to my mind—it might be old-fashioned—for anyone other than the person who introduces the debate to at least let the Minister know that they want to intervene. I am happy for the hon. Gentleman to do so, but I said that because I am a bit of a stickler and an old fuddy-duddy.
I apologise to you, Mr. Key, and to the Minister for not asking about intervening. I want to be supportive in the debate. I should like to forward examples from my constituency to the Minister so that he can look at the position around the country. As was eloquently stated, the problem is suffered by many families and young children up and down the country.
I accept that, which is why I tried to frame the debate in the spirit that I did. We should always keep such things under review. I would value that evidence, because it can inform the Under-Secretary of State for Work and Pensions, my hon. Friend the Member for Chatham and Aylesford, and me, once officials have looked at the matter again. I thank my hon. Friend the Member for Gower for raising the issue. In the broadest sense—it is not only about DLA and the higher mobility component—it should be incumbent on the Government and the Department for Work and Pensions to consider and take his comments very seriously.
Question put and agreed to.
Adjourned accordingly at nine minutes to Two o’clock.