What does the Disabled Children’s Charter mean to you?

The world of Parliament, committees and legislation can seem a million miles away from our family homes. In this guest blog, Peter talks through how the decision-making process affects real families every day and how you can influence it.

Over the past 18 months, I’ve been working on an incredibly important issue and the campaign is making encouraging progress. However, sometimes as a campaigner it can be hard to explain why a particular issue is so important and how backing a campaign can have a positive impact on the lives of disabled children and their families. Every Disabled Child Matters (EDCM) and The Children’s Trust (who run this website) launched the Disabled Children’s Charter for Health and Wellbeing Boards a year ago. At its simplest, the issue was that the Health and Social Care Act was about to introduce sweeping changes to the way the National Health Service was organised. We were concerned that the needs of families with disabled children would not be a priority in the confusing transition to a new system. Families with disabled children have well-documented complaints with the health system. EDCM and The Children’s Trust produced two reports in 2009.These showed that the widespread dissatisfaction among parents and professionals –which had been highlighted in a previous parliamentary hearing in 2006 –had not been addressed. Some of the key issues families faced were a lack of access to universal and specialist services and the failure to coordinate services around families. These problems are often caused by disputes around who should commission (buy), fund or provide a service and the inability of different services to work together effectively. So, our hope was that the reform of the health service would be a valuable opportunity to address these concerns. In response to the sweeping changes taking place, we decided to develop a Disabled Children’s Charter for Health and Wellbeing Boards to make meeting the needs of disabled children a priority at a local level. We targeted Health and Wellbeing Boards because they occupy an important strategic position in the new system. Health and Wellbeing Boards are committees of local leaders and commissioners (the people who decide whether or not to pay for a service) who bring together Health and Social Care and other agencies.  The difficulty is that the system often fails to coordinate different services, as well as that jump from children’s to adult services, creating a system that is poor at providing smooth transitions for disabled children. They also aim to provide more democratic involvement in decisions within a health system that parent and carers have struggled to influence. The Charter asks Health and Wellbeing Boards to fulfill seven commitments which include:
  • engaging directly with disabled children, young people and their families
  •  collecting accurate information about the disabled children and young people in their area
  • setting clear strategic outcomes to work towards
  • promoting early intervention and smooth transitions to adult services.
We believe that if Health and Wellbeing Boards fulfill these commitments, disabled children and their families will experience much better quality of life and outcomes. Health and Wellbeing Boards have been asked to sign up to the charter, and so far 35 out of 152 have done so. You can find out if your area has signed up here.  EDCM and the Children’s Trust have also asked our supporters to email their Health and Wellbeing Board Chair and ask them to sign the Charter. The more supporters do this, the more likely it is that their Health and Wellbeing Board will adopt the Charter commitments. It is probably already clear to you why it can be hard to engage parents and carers of disabled children with this kind of ask. The world of committees, systems and strategies can seem remote from the everyday struggles of parents with disabled children to access the support they need. Supporters frequently ask us ‘what difference will the Charter make to our lives?’ This is not necessarily an easy question to answer because there is no single tangible thing Health and Wellbeing Boards must do to fulfill their commitments. It is also true that the benefits of making disabled children a priority in a local area will not be felt immediately. However, perhaps the easiest way to explain why this is so important is to think about what happens if Health and Wellbeing Boards don’t make disabled children a priority in your area. It could mean the people who plan local health services might do so without listening properly to the views of disabled children, young people and their families about what is wrong and what changes they want to see. They may continue to do so without knowing how many disabled children live in their area, what their impairments are and what services they need. And they could continue to argue about who should fund a necessary service instead of making sure it is delivered to the people who need it. All of these things have gone on for a long time and need to change. I hope I have been able to explain why this is an important issue and that you will lend your support to this campaign by emailing the Chair of your Health and Wellbeing Board calling on them to sign the Disabled Children’s Charter. You can show your support for the campaign here. You can download the Disabled Children’s Charter for Health and Wellbeing Boards here.
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