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Response of the Welsh Assembly Government to the Review by the Health and Social Services Committee on Services for Children with Special Health Needs

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Jane Hutt, Minister for Health and Social Services
“Being a parent of a child with a disability is like going to another planet, and there is no guidebook.”

I have met many parents with children who have complex health needs.  The quote above was the comment from one parent that I recall very vividly.  Parents have explained to me the way in which the process of discovering that their child has a disability can be painful, and the ways that it can disrupt family life.  They also explain the difficulties and frustrations that they experience in obtaining the health and social service support that they need to help their family.  As long ago as 1976, the concept of co-ordinated services was proposed in the Court report.  It is an obvious solution to the problems experienced on a day to day basis by those looking after children with special health needs.  

With this in mind I was very pleased when the Health and Social Services Committee decided to undertake this Review.  I commend the Committee on the thoroughness with which they approached the task.  The result is a helpful guide on what the Welsh Assembly feel should be provided for those children and young people in Wales who require our help to live satisfying lives.  

During the time that the Committee was undertaking the review, work commenced on the National Service Framework for Children, its aim being to help all children and young people achieve optimum health and well-being and are supported in fulfilling their potential.  It will address the health and social care needs of all children and young people from pre-conception to their 18th birthday.  The first stage of the process is to define the standards for the expected quality of care or service delivery.  I have asked groups of experts to advise me on the evidence-based standards for:
• maternity services,
• services for children and young people suffering acute or chronic illness or injury;
• services for mental health and psychological well being of children and young people;
• services for children in special circumstances;
• services for disabled children and for
• services for healthy children and young people.

Throughout the standards will be the need to ensure that services are co-ordinated and where examples of good practice are found, the lessons that are to be learned will be shared.  

I have asked the expert groups developing the standards to carefully consider the recommendations contained in the Committee’s report.  It is therefore an important piece of preparatory work that will act as a guide about the matters that the Welsh Assembly considers should be interwoven into the National Service Framework.

Developing such a wide-ranging National Service Framework is an ambitious project and it will be some time before it will be completed. I anticipate that the consultation on the first set of standards will take place towards the end of this year.  At about the same time, work will commence on the second stage of project, which will be a baseline service review.  When this is completed it will be possible to assess the strengths of the services that are in place and where it will be necessary to strengthen services.

Amongst those children and young people with the most complex of needs are those with an autistic spectrum disorder.  The help and support that is given to them early in life can have a profound effect in later years. In partnership with the statutory and voluntary sector, we have commenced work on an Autism Strategy that aims to make a real difference to the provision and delivery of services for those with autistic spectrum disorder.

In the meantime, I have put in place a number of initiatives to assist children and young people and their families who need to access services now.  
Examples include;

 The Flexibilities Special Grant has enabled a number of initiatives to provide co-ordinated care, such as the Caerphilly Children’s Centre Care Co-ordination project led by a Clinical Nurse Specialist.  The Grant has also helped Conwy and Denbighshire local authorities to co-ordinate with the NHS trust to develop a speech and language therapy service that is school based and works with parents and teachers to provide a ‘one stop’ service for children with speech and language impairment to ensure that they have the maximum access to the education curriculum.

 Pembrokeshire NCH Key Worker Scheme – funded from Children First provides invaluable support to some 55 disabled children and their families. Key agencies work jointly in developing bi –annual life plans that map out the needs and development of each disabled child. The drop in centre provides services such as advocacy, training, information and advice on range of issues and a central meeting place for disabled children and their families.

 We recognise the high value of flexible innovative short breaks to allow for disabled children and their parents and carer to take time out.  We want to see greater diversity and flexibility in the range of respite care available, and welcome imaginative projects like Monmouthshire’s – T’Yr Enfys Respite Care Scheme – made possible through Children First.  

Similarly the Framework for Partnership which I launched with Jane Davidson, the Minister for Education and Lifelong Learning is aimed at improving the lives of children and young people by requiring partnerships of local authorities, the NHS and other statutory bodies and voluntary and independent institutions to come together to produce inter-locking plans which will sit at the apex of planning services for all children and young people.