My speech at the at the Rachel Squire Memorial Lecture, 20th February 2007

It is a great privilege to be asked to give this lecture in honour of the memory of Rachel Squire.

Rachel was everything that a new MP should aspire to be. She was a hard working and dedicated Member of Parliament for her constituency of Dunfermline and West Fife. I admired her commitment, her expertise – and latterly also her bravery.

Over the years, she acquired a formidable reputation as an expert on defence and international affairs – serving as a highly effective member of the Defence Select Committee and contributing to every major defence debate in Parliament.

But Rachel was also a passionate advocate for disabled people and their carers. She worked with colleagues in the voluntary sector including, amongst others, Contact a Family, Carers UK, the Alzheimer’s Society and RNIB, to highlight the very real difficulties that many disabled people and their families face in our society.

I am delighted that Rachel’s mother Anne and sister Isobel are with us this evening and that so many of her parliamentary colleagues and friends from the voluntary sector have gathered here in her memory.

Over the past year, disabled children and their families have increasingly moved to the centre of national debate. Rachel would have very much welcomed that. And she would want me to start by paying tribute to the vital work of the champions of disabled children and their families who have made that happen:

  • the professionals who work tirelessly in local areas to improve disabled children’s lives;
  • the consortium of disabled children’s charities working on the Every Disabled Child Matters campaign;
  • the parents of disabled children who not only offer the love and support that all parents offer their children, but who also provide extra care and support for their disabled child, championing their cause and their place in society;
  • and above all, the 770,000 disabled children in the UK, all of whom are children first and foremost. Every child matters – and that means that every disabled child must matter too.

Why every disabled child matters 

Unlike Rachel, and many of you – probably all of you – here tonight, I do not come with any great professional expertise in disability issues – or a campaigning history spanning decades.

As a local MP, I just want to do the best for every child in my constituency.

As a father myself with three young children, I know how challenging it can be bringing up a family.

And over the past two years, meetings parents and children at Kingsland school in my constituency and in the wider community, I have learned how doubly challenging life is if your child has an additional need, whether a learning difficulty, physical disability, a specific health condition or a life limiting condition.

I have met parents who have struggled to get the right equipment for their child.

I have heard story after story about short breaks – one embedded in my memory is of a single parent with four children under 12, two with severe learning disabilities, who found out just the week before her one short break of the summer was due, that it was to be cancelled due to staff shortages.

As a Minister I have visited the marvellous Treehouse special school for autistic children in north London and seen skilled professionals engaged in often one to one care for children in a highly specialised environment – and then marvelled even more that when 3.30pm comes a parent arrives to collect their son or daughter and does it all at home on their own until 9am the next morning.

And following the launch of my 10 Minute Rule Bill a year ago – and then the Parliamentary Hearings which followed – I have heard – time and time again – that despite our Government’s commitment to children and families and our investment in children’s services, families are still too often finding it hard to make ends meet, access speech and language services and get proper breaks from caring.

As a Labour MP, committed to social justice, I found myself asking why these families are missing out?

Why do some of our most vulnerable children have to wait months to be assessed for a vital piece of equipment?

Why is it that only 16 per cent of mothers of disabled children can get paid work while disabled children are more likely to live in poverty?

And I have understood what drove colleagues of mine to demand a better deal – MPs like Rachel, and Deputy Speaker Sylvia Heal, and Tom Clarke and Joan Humble who chaired last summer’s parliamentary hearings, and many others – from all parties – who press us to go further, faster.

Disabled children in the Every Child Matters agenda

Since 1997, our government has placed children at the centre of our efforts to create a fairer and more just society. Our Every Child Matters agenda has transformed the way we look at children and families.

Public services are now judged on how they ensure that children stay safe, stay healthy, enjoy and achieve, experience economic well-being and make a positive contribution.

To deliver these outcomes, we have put in place a package of reforms that promote seamless, joined-up services for all children. Sure Start children’s centres give wrap-around support to the youngest children. Extended schools carry the same principles through for children of school age. And Directors of Children’s Services are accountable for delivering these five outcomes for every child in their area.

The Every Child Matters agenda is a good example of our key philosophy of progressive universalism – help for all, and extra help for those who need it most.

This is precisely the commitment we made in our party’s manifesto for the last general election, where we promised that we would “ensure that services are designed to meet the additional needs of disabled children and their families”.

That is why my department and the Department for Education and Skills are conducting a review, commissioned by the Chancellor in 2005, into how we can enhance the Life Chances of Disabled Children and their families. The review is due to report in the Spring of this year.

My Ministerial colleagues at the DfES on this review – the Minister for Children, Beverley Hughes MP, and Lord Andrew Adonis – have long championed the needs of disabled children within Government.

Beverley recognised the importance of targeting additional support for families with disabled children in last year’s flagship Childcare Act where she oversaw new legislation that creates powerful new duties in support of delivering improved childcare for families with disabled children.

And she and Andrew are driving forward the SEN Strategy Removing Barriers to Achievement and the Children’s National Service Framework, devised jointly between DfES and the Department of Health.

I know many of you here today, not least Francine as the chair of the External Working Group, were intimately involved in the creation of Standard 8 of the NSF on disabled children and children with complex health needs. Through the NSF and other initiatives such as the Prime Minister’s Strategy Unit Improving Life Chances report, we have a clear route map of how we want to see services delivered for families with disabled children.

Modernising services – delivering rights

As a result, disabled children and their families are benefiting from increased cooperation in assessment and provision of support through Children’s Trusts.

The brilliant work of the Early Support Programme is delivering co-ordinated services in many areas of the country, providing a model for future developments. The programme has directly helped over 6,000 families with severely disabled children and will cover all local authorities by the end of next year.

Families are also benefiting from services coming together to deliver common assessment frameworks, reducing the number of times that a family must re-tell their story.

Government has committed to achieving substantial equality for all disabled people by 2025 in the Improving Life Chances Report, and the Office for Disability Issues, under the committed leadership of Anne McGuire, is now up and running, championing the needs of disabled people across government and across the country.

Disabled children are also benefiting from the Government’s increased spend on children’s social services – a 32% increase in real terms since 1997 and a total spend of ¬£4.2 billion in 2005-6; we are increasing funding for short breaks through yearly increases in the Carers Grant; DfES is providing funding to the Family Fund, providing direct grants to around 46,000 families of severely disabled children every year; and Government also provides annual funding to Contact a Family’s Helpline, which gives detailed advice and support to over 20,000 parents each year.

Government interest and the review

But despite the policy framework and the investment that I have outlined, too many families continue to tell us of a constant fight to access services and support – a reality that was brought starkly home by the parliamentary hearings on services for disabled children.

Our Children and Young People review, which will influence this year’s Comprehensive Spending Review, has consulted many of you. I would like to record my gratitude that so many disabled children and their families submitted evidence to the review:

  • To those professionals, academics, parents and voluntary and other organisations who wrote some of the over 400 responses to the Children and Young People’s Review Call for evidence last summer;
  • To all of you who gave up your time and offered your expertise to help gather evidence and form policy through the joint Treasury/ DfES disabled children seminars last July and October;
  • To all of the young people, parents and professionals who shared their thoughts and testimonies at the Parliamentary Hearings last July (and the hundreds who submitted written evidence) on early years, children’s services and transition; and
  • To all the Local Authorities, Primary Care Trusts and voluntary sector organisations who have allowed myself and the review team to come and see first hand how they are overcoming challenges and pioneering good practice in involving and supporting disabled children and their families.

Thank you all.

You told us about many issues affecting your lives and the lives of the disabled children you live or work with:

Variations in levels of support across the country, exacerbated by disparate eligibility thresholds, a lack of minimum standards and obstacles to the inclusion of disabled children in some mainstream services;

The huge transformation to services for the youngest disabled children brought about through the Early Support Programme, but the need for a further shift towards intervention earlier in children’s lives, more investment in local early intervention strategies, with referral and provision of specialist services when and where they are needed;

And above all you stressed a simple need for more services and support, including short break provision, key workers and therapists, so that more families can be supported and more children helped to achieve the best outcomes.

Challenges ahead

We hope that the review will be a positive step forward to improving outcomes for disabled children, embedding and building on reform to date and bringing government together to focus on disabled children as a priority.

But we cannot transform the picture overnight – there is no magic wand to wave.

Indeed, we expect the rate of growth in public spending to slow over the next spending review to allow a firm basis for economic stability. So we need to ensure that we are making the very best use of existing resources, focusing on the areas of highest priority to improve outcomes for disabled children.

All of us want to see a step change in support for families with disabled children, but we face a series of challenges.

First, our changing population and medical advances means that need is growing. More disabled children are surviving at birth and are able to benefit from improvements in equipment and technology, which means that they can lead more active, more involved, and more positive lives.

Second, we need to have much better evidence about what works and why. Our review showed that there is very limited evidence on the impact of a range of early interventions on outcomes for disabled children despite some excellent local examples of good practice.

Third, we need much better data – both on local populations and their needs.

Finally, we must balance the importance of making disabled children both a local and national priority with the need to maintain local flexibility to allow agencies to develop innovative solutions and set local priorities.

We expect our review to lay the groundwork for change to improve disabled children’s lives, open up the opportunities available to them, and to recognise and support parents in their caring role. But we also see the review as part of a process of putting disabled children and their families firmly at the centre of government thinking – a key group to look towards in our drive for social justice in this country.

A principled approach: The children and young people review

Our strategy of breaking the cycle of deprivation and improving outcomes for children and young people is guided by three underpinning principles: progressive universalism, prevention and early intervention, and rights and responsibilities.

The principles of progressive universalism mean that disabled children should be included in universal provision, with specialist support and provision for those with higher level needs.

We want to see every extended school and children’s centre offering the fullest possible range of services. But at the same time, we need to put in place the range of targeted and specialist services that can deliver direct support to those families whose children have more severe and complex needs.

In line with the government’s principle of prevention and early support, all disabled children and families should have access to the support they need early in life, and as soon as they need it at key stages of transition.

For example reducing waiting times for equipment will not only improve childhood and family experiences, but will reduce the need for more intensive and potentially more difficult interventions and improve children’s health and social, emotional and educational outcomes.

All parents play the central role in the well-being and development of their child; a role that can be challenging for all parents at times. All parents, mothers and fathers, have the right to support from government in meeting their responsibilities if they need it.

Tonight I want to set out the four elements of our emerging vision for disabled children and their families: access, empowerment, timely and quality support, and support through the life cycle.

Access

First and foremost, we want disabled children and their families to get full access to appropriate, timely support services.

Children and families need to have flexible appointment times, more accessible services, such as better spaces for wheelchairs and better equipped consultation and waiting rooms. They need effective information and communication about the services available, and accessible transport to get to and from school and to participate fully in everyday life.

To make this happen, disabled children have to be considered as a priority: a local priority for local agencies and services, and a national priority for central government.

This dilemma of ensuring local flexibility while delivering a uniform high standard of support to families is a persistent one – in fact, the same dilemma presents whenever a long-term need is present for a minority group. Ultimately, however we tackle this in our review, variations in how well local areas are accommodating both national standards and local priorities must no longer be used as an excuse for unacceptably poor levels of services and support which keep disabled children from fulfilling their potential.

Some local authorities are already pioneering the use of indicators on disabled children to measure improvement in outcomes and increase the profile and priority given to disabled children. We need to sharpen the incentives for local authorities more widely and raise the profile and priority given to disabled children across the board.

With my ministerial colleagues at DfES, I want to see a national disabled children indicator in the new set of PSAs to be agreed across Government at the CSR so that what we see in the best local authorities can be replicated across the country. The Treasury is working with DfES and DCLG to develop detailed proposals to ensure that a national indicator drives real improvement and accountability at a local level.

We are also looking at the best ways to include disabled children in universal provision where this is appropriate. For example, reducing the barriers to disabled children accessing childcare, and supporting parents while giving disabled children the chance to benefit from contact with their peers from an early age.

And disabled children and their families need better and better-coordinated support from accessible, knowledgeable professionals in both universal and specialist services. And through early contact with such “key-worker” professionals, who communicate directly with parents and families and with a clear understanding of working with and supporting disabled children we can try to ensure that families do not feel alone in coping and instead feel in control.

Empowerment

The second element in our vision for disabled children is empowerment. Disabled children and their families, like other families, should have a choice of services available locally to meet their needs. They should be able to hold local partners to account when they are being let down.

And this is why we want to see a better deal between children and families and local authorities and their partners – with greater involvement in the design and delivery of services, a guarantee of better information, better assessment, and fairness and transparency in eligibility and decision making – with clearer and easier routes of redress when services aren’t up to scratch.

Our review has heard from many families and young people about their desire to be more centrally involved in the design and provision of services.

The review has also witnessed first hand the positive force that parents can be, not only in directly supporting their child, but also in shaping services to be appropriate to their child’s needs.

For example, in Cornwall, the local Parent Carers Council, supported by the voluntary sector and the Local Authority, were designing and delivering training to childcare providers, helping them become more inclusive.

Through the review we want to replicate these successful parents’ forums in every area of our country and create champions for disabled children in every locality – helping to foster this energy and dynamism waiting to be tapped, supporting and empowering parents and holding providers to account.

And families should, where they choose to, be able to access direct payments to allow them more choice over the services they use. And if pilots work out successfully, this direct budgets principle should be expanded to further areas of service provision, through the availability of Individual Budgets with budget holding lead professionals as support for young people and families who choose to do so.

Quality and timely provision

Third, high quality, timely provision needs to be universally in place to prevent deteriorating outcomes and to maximise potential.

Every family should have the early practical and emotional support they need, connected directly to a full range of services through a key worker or a team focused on seamless support designed around the child.

We know that early support for disabled children and their families is essential to prevent problems such as deteriorating health, family stress and breakdown, and deteriorating emotional and educational development for disabled children and their brothers and sisters. Local Authorities and PCTs rightly prioritise those in greatest need. However, at the moment, a lack of early support and intervention may be exacerbating the numbers of disabled children and their families who reach crisis point and need crisis interventions.

For disabled children and their families, it is particularly important for certain services to be in place early. For example, short-breaks, which help give families with disabled children an ordinary life – the same experience of having a break from each other, to support the love and care that all parents give their children.

Which is why our Review is now examining proposals to improve the provision of short break services for disabled children and their families, and are identifying the best means of ensuring effective provision.

Countless families have accentuated the importance of seamless support for children with complex needs and who use a wide range of services. Our vision involves:

  • Families and children benefiting from joined-up assessments, held at the convenience of children and families, rather than being passed from pillar to post;
  • Different local agencies working together to jointly plan, commission and meet children’s needs, with health, education and social services working in partnership to deliver coordinated support services in good time; and
  • Families with children with the most complex needs benefiting from a key worker, through the early support programme or later in life, for example at transition.

We must put disabled children at the heart of the Every Child Matters agenda.

Support throughout the lifecycle

And our vision is that all disabled children and young people and their families should have support throughout their lives, from birth right through to transition to adulthood and beyond.

From birth and diagnosis, every family should have the early practical and emotional support they need, with staff trained to offer advice and information, and deliver messages in a clear and supportive way.

Every disabled child and their family should have support throughout early childhood, with evaluation and benchmarking, and clear mechanisms for spreading best practice.

We want to see every disabled child with a clear assessment and plan throughout childhood so that local agencies can plan in advance for their changing needs and as they grow, to facilitate timely provision of equipment and services. We want an end to frustrating waits for equipment when children grow out of their existing provision. This issue is currently being addressed by the community equipment and wheelchair services review led by the Department of Health, and my officials are working closely with that review to ensure that our two review processes are complementary.

Throughout childhood, every child and family should have coordinated support, through a key worker, or team focused on support designed around the child. We need to fulfil the government’s commitment to inclusion and equality, with disabled children able to access childcare services, participate in mainstream schooling with appropriate levels of support for their needs, and fully access extended school provision and activities.

Disabled children need the same childhood experiences as all other children, with the chance to play, learn, make friends, and develop their interests and personality. This is best delivered for most disabled children in the same places that other children go to play and learn.

At transition to adulthood, an area highlighted by the Parliamentary Hearings, children and families should be involved from the very beginning of the process at age 14, similar to the Early Support Programme, with clear guidance about who they can talk to and what they can expect. The provision of clear information, an advisor or key worker to signpost information, coordination of services, and planning centred around the young person have all been pointed out to us as vital elements to support disabled young people at transition. Disabled children deserve to have their expectations raised and met as they become adults.

Conclusion

This, then, is our emerging vision.

Of course, delivering consistent improvements in support for families with disabled children will take time. Future spending reviews must build on the commitments we make this summer to ensure our focus is sustained and delivered.

But we will make progress.

When I launched the Every Disabled Child Matters campaign at our party’s conference last year, I told many of you here today that this is ultimately a campaign about fairness and social justice. Only through making every disabled child matter can we reach our ultimate goal of a fair and just society for all.

In fact, disabled children provide the acid test of whether we as a government can build a society with equal chances and opportunity for all. All of you in this room are partners in that process.

I want to end by reiterating our support for the principles of the Every Disabled Child Matters campaign, and pledge that I will continue to work with you to make sure that our government delivers for disabled children and their families.

Ends

Posted November 26th, 2015 by admin