Hywel Francis

Labour Party | Aberavon

Disabled Children (Family Support) Bill

Dr. Hywel Francis (Aberavon) (Lab): It is a particular pleasure to follow the hon. Member for Mid-Dorset and North Poole (Annette Brooke), whose work for young carers I greatly admire, and with whom I have had the pleasure of working. At the outset, I warmly congratulate the hon. Member for South-West Devon (Mr. Streeter) on introducing this vital Bill, and on the passion and clarity with which he spoke. I place on record my personal thanks to him for inviting me and other parliamentary colleagues to co-sponsor his Bill and serve on his Bill team. It has been an exemplary instance of cross-party collaboration and consensus. Our thanks should also go to the Every Disabled Child Matters campaign and its equivalent in my country, the Children in Wales consortium. The Bill applies to England and Wales, and I will refer to that important fact in my contribution.

I am proud to be a vice-president of Carers UK, which firmly supports the principles of the Bill. Carers UK campaigns on the three Rs: recompense, respect and respite. The Bill is about all three. Carers will be listening carefully to our deliberations, as has been said in other contributions, and they will be particularly keen to hear the Minister’s response. Given the strength of their case, I am confident that they will not be disappointed. The very fact that the Bill exists, with broad support across the House and the country, is an indication of the progress that has been made in understanding the need for respite care. It is to his great credit that the hon. Gentleman has had the vision to introduce the Bill at the very moment that Her Majesty’s Government have announced major advances for carers. It follows the groundbreaking work of my hon. Friend the Economic Secretary, who last year introduced a ten-minute Bill that has been mentioned by many parliamentary colleagues.

Our discussions should be viewed in the wider historical context stretching back to the Prime Minister’s national strategy for carers in 1999 and previous major legislation. More recently, a parliamentary review of services for disabled children was led by 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), and I warmly congratulate them on their fine contributions to the debate. I speak not only as a sponsor of the Bill but as the chair of the all-party parliamentary group on carers, which strongly supports the Bill, and the points that I wish to make are important to that group, to carers throughout the country and to children with disabilities. I speak, too, as a former carer, having cared for our son, Sam, for over 16 years.

Many hon. Members in the Chamber gave me a great deal of support when I had the privilege of introducing the private Member’s Bill, which has been mentioned by several contributors and became the Carers (Equal Opportunities) Act 2004. I thank them again for that support, as the evidence suggests that, in its own small way, the Act has helped to change the way in which carers are viewed, as it is now accepted that they have a life beyond their caring responsibilities. It has improved, too, the provision of information for carers and a raft of initiatives have been developed to give carers the opportunity to learn, train and work.

Some important parts of the Disabled Children (Family Support) Bill are a reflection of my Bill. Having conducted extensive consultations with carers about their priorities, I know that those issues are critical for them. The evidence suggests that legislation changes culture and practice. It is often argued that good practice guidance is all that is needed, but Carers UK believes that practice guidance is a blunt tool if the local authority is not performing well and does not give carers the right to a decent life or to a life beyond caring. Kay O’Shaunessy, the chair of the Plymouth branch of Carers UK and mother of a nine-year-old daughter, Amy, who has severe and complex disabilities, has summed up why legislation is needed. She says that it would have made life a lot easier, as it is often a battle to get a break. She knows many families in a similar situation, and she started Friends and Families of Special Children for them. It is one thing to agree to provide a break, but another to put that into practice and find the right resources so that it can be a good experience for the child. Kay wants more short breaks, as well as social and leisure activities for Amy while she and her husband take the break that they deserve. Kay says that breaks for her not only enable her to safeguard her health, but are important for quality of life and so that she can spend quality time with her husband and the rest of the family.

The elements of the Bill are important. The provision of breaks must involve the NHS, where the child has a health need. Parents, as well as their children, have rights. Breaks must be of good quality and benefit both children and carers. I will deal with those principles in turn, starting with the involvement of the NHS.

In the original draft of my Bill, I wanted to place new duties on NHS bodies to recognise that they had a duty to protect carers’ health and well-being. Unfortunately, the Government did not agree with me and the huge body of evidence that had been collected by carers through Carers UK. As we all have to do on such occasions, I agreed to give way to enable other important elements of the Bill to be successful.

The present Bill tries to establish a similar and critically important principle—that breaks need to be provided, sometimes solely through the NHS, or with NHS input and planning alongside social services. That is set out clearly in clause 3. It is vital that there is joined-up working, which we know is not happening because of what we are told by parents of children with severe disabilities and complex health problems. Carers tell us all the time that our NHS should pay far more attention to them, their views and, most important, their health. We also know that without this vital input from the NHS, a break is not possible without serious potential harm to the child’s health.

Parents tell me time and again how important breaks are to them, to allow them to have time to themselves, to recharge their batteries and, perhaps, to devote time and attention to the disabled child’s siblings, whom they feel they overlook because they devote so much time to their disabled child. If you asked me what words would appropriately describe the condition of carers, the words that come to mind are tiredness, stress, worry and, perhaps most important of all, isolation. Respite care addresses all those conditions.

I shall move on to parents’ rights. Despite the fact that my Act establishes that parent carers have a right to an assessment of their own needs, Carers UK and Contact a Family find all too often that parents are not seen as individuals with rights of their own. They are sometimes treated as invisible, with their disabled child as the only one to have rights. Parents are told that they are not entitled to an assessment in their own right. That is wrong, according to the law, and it is also short-sighted. As we have already heard from contributions this morning, it is critical to carers’ health and well-being that they receive assessments in their own right.

When I met parents of children with disabilities in my constituency, Aberavon, while I was preparing my Bill, one of the main issues was the fact that they felt that they were not recognised as human beings with their own rights. Clause 4 would give carers a right to request that the children services authority assess their ability to provide care for the child, as a precursor to assessing the child’s needs for short break care under clause 3. That means that the needs of the carer must be taken into account in determining whether the child needs short break care.

The clause is important. It is designed to ensure that any barriers to caring experienced by the carer are recognised when the family’s need for short breaks is assessed. This would include carers who are themselves disabled or in poor health, one-parent families and carers with multiple caring responsibilities. There may be a particular need for support—perhaps another child is ill or there are pressures on parents’ time—that is not reflected in the disabled child’s assessment.

The Bill would remedy the situation by providing a correlation or continuum between the assessment of children’s needs and those of the rest of their families. That is essential because research shows time and again that families with disabled children have a different quality of life because of the extra challenges that they face in caring for a disabled child. Recent research for Carers UK and Contact a Family, undertaken by the university of Leeds as part of the action for carers and employment project, shows that parents of disabled children are less likely to work, more likely to live in substandard housing and more likely to suffer ill health, as we have heard in other contributions today. Parents tell me that breaks are vital to ensure that they have a quality of life comparable to that of parents without disabled children. Breaks enable them to look after their own health, recharge their batteries and do things that other people take for granted. The Bill would establish that important principle in law.

During the course of my contribution, I shall address a number of questions to the Minister, to which I hope he will respond either at the end of the debate or subsequently in writing. Does he feel that parents of disabled children face what one might call a less equal life as a result of caring for a disabled child and that they face discrimination? Will the new equalities body, the Commission for Equalities and Human Rights, tackle the multiple forms of discrimination that carers face from day to day in caring for a person with a disability? The all-party group on carers has invited the new chair of the commission to address the group and he has agreed to meet us. I am sure that he will be interested to hear the Minister’s response and we will ensure that it is fed into our discussions when we meet him soon.

I turn to the question of the quality of existing support and new measures to support carers. I warmly welcome, as I am sure all hon. Members do, the Chancellor’s announcement on Wednesday of the new deal for carers in England, which promised £33 million for the provision of better support for carers. That new deal includes £25 million for the provision of emergency support for families caring for an adult or
child with disabilities. The money is there to ensure that carers who have health or family emergencies get help instantly, when they need it. Contact a Family welcomed the announcement but said that the money is no replacement for regular, good quality respite care. During the past few years, the Government have put more than £1 billion into respite care, but we know that that does not stretch far enough. There is still a shortage of good quality break services and only a proportion of the total funding for breaks will go to families with disabled children.

I come to my second question for the Minister. In relation to driving up the quality of respite care, can the Minister offer an assurance that, whatever the fortunes of the Bill, measures will be put in place to ensure that short breaks are provided to benefit disabled children and their carers? That vital principle is at the heart of the Bill, and a framework must be established to ensure that short breaks meet that test.

Wednesday’s announcement by the Chancellor about the new deal for carers also put the future funding of breaks firmly on the agenda. Carers’ organisations feel strongly that the carer’s grant is an important stream of funding that provides carers with breaks and must remain discrete rather than being rolled into the revenue support grant. From its wide membership, Carers UK hears strong concerns that the funding for carers’ breaks will be reduced if it loses its clear identity. That is a critical part of the discussion because the outcome will affect the delivery of break services in future.

My third question is, how does the Minister envisage Wednesday’s announcement fitting in with the Bill? Can he give any commitment today that the carer’s grant and the carer’s emergency support grant will continue after this year?

At the outset of my remarks, I said that the measure was very much an England and Wales Bill. I often referred to my Carers (Equal Opportunities) Act 2004 as a Wales and England measure because it was clearly rooted in the experiences of carers and the cared for in Wales. In my constituency, many carers groups are anxiously listening to the debate today. The Carers Action Movement, the special needs activity club, Everybody’s Gateway club, the epilepsy support group, Cancer Challenge, Age Concern and many other organisations know the importance of respite care to their members. Indeed, they often take a lead in providing it.

Carers Wales and the Children in Wales consortium support the Bill’s principles. The members of the consortium include such diverse bodies as Barnardo’s Cymru, SNAP Cymru, Autism Cymru, Shared Care Wales, Learning Disability Wales and many more. They look to the debate for hope and inspiration. I commend the manifesto that Carers Wales and Wales Carers Alliance recently launched in anticipation of the Assembly elections. It is entitled “A Fair Deal for Carers” and respite care plays an important part in it. I encourage parliamentary colleagues to read and support it.

Mark Williams: As another Member who represents a Welsh constituency, I pay tribute to the hon. Gentleman’s work with the carers’ movement, especially in Wales. Does he agree that the greatest and most fundamental concern, above the provision of respite care, of the organisations that he listed is the lottery of provision? In Wales, there is a huge disparity between authorities. The key point of the Bill is placing a universal duty on local authorities.

Dr. Francis: I especially commend the carers’ organisations in Ceredigion. They are some of the best in Wales. I agree with the hon. Gentleman’s point and I shall refer later to the importance of providing some universality throughout the United Kingdom and of learning from one another.

From my recent discussions with Welsh Assembly Ministers, I know that they believe that improvements in respite care are best advanced through universal and targeted programmes, including the national service framework for children, young people and maternity services and Children First. The Welsh Assembly Government also believe that the outcome of the Department for Education and Skills-Treasury review will inform future developments in Wales. I state that in anticipation of the Minister saying it later.

The carers’ champion for Wales, the Welsh Assembly Member John Griffiths, and the carers’ champion in my local authority, Councillor Paul Thomas, are both doing sterling work on behalf of carers and are keenly interested in this debate. My hon. Friend the Minister may wish to encourage our Government to designate himself as the carers’ champion. We might all agree that he should be the carers’ champion, in the lightof his contributions today. We await that with anticipation; indeed, perhaps we will table an early-day motion to that effect. It would be interesting to hear his response to that. I look forward to hearing him being described as the official carers’ champion in England.

Although I acknowledge the broad policy and strategic framework within which we are discussing such matters, particularly the outcome of the comprehensive spending review, I urge my hon. Friend the Minister to ensure that the Government take account of the experience, views and good practice not only in England but in the devolved Administrations throughout the United Kingdom.

I end with this final reminder. We must remember the purpose of the Bill. Carers UK heard from a single mother of four children with autism who needs regular breaks because she is physically exhausted, depressed and demoralised. She has sleepless nights and has come close to a nervous breakdown. If that happens—and it is very likely—instead of providing breaks for four children, the local authority will have to provide foster care for four children, plus additional health care for the mother. As we know, over the longer term it makes sense to ensure that carers have regular breaks, in order to keep them together as families. I know that not only from my own experience, but from my friend Ray Thomas, who chairs the carers action movement in my locality and who, along with his wife, has been a carer for more than 40 years for their two sons.

Given my Government’s track record on carers and disability over the past decade, I am confident that the Minister will recognise the value of this debate in making a major contribution to policy development on social care and, most importantly of all, the needs of disabled children and their carers throughout the country.