When it became law in September 2014, the Children and Families Act was heralded as a step change in the provision of support for Special Educational Needs and Disability (SEND) for children and young people.
At its heart, it was designed to change the way professionals think about the needs of these young people, ensuring services work well together and don’t just cater for people’s individual needs in isolation.
How Healthwatch are ensuring young people’s voices are heard
Healthwatch around the country have been doing some fantastic work with parents, carers and young people with learning disabilities, hearing their voices and views and using this to support the changes.
For example, Healthwatch Somerset appointed the Chair of the Somerset Parent Carer Forum to their Advisory Board, providing them with a regular channel through which to gather feedback from parents, carers and young people facing issues locally.
“I see the parent forum as another member of the team, Ruth regularly sends me updates. We have made a commitment to work with children and young people every year, and we want to make sure that children and young people with additional needs do not have their voice lost in their feedback. It is an essential relationship that continues to build on our shared values.”
In Rotherham, Healthwatch has developed a regular information sharing agreement with their Parent Carer Forum, which has helped them influence local policy on a range of issues, from the Rotherham All Age Autism Strategy to the restructure of the Rotherham CAMHS Neurodevelopment Pathway.
Healthwatch Suffolk has worked in partnership with a range of organisations on a campaign to transform mental health services. The Healthwatch has used their expertise in research design to develop a survey, whilst the Suffolk Parent Carer Network led on the engagement and events which reached over 5,000 people.
Share your views
If you have an experience of accessing SEND services that you would like to share or would like information on what support is available to you, get in touch with your local Healthwatch.
Progress against the ambition
There has been clear progress over the last five years, and where things are working well Healthwatch have seen a strong move towards agencies working in a much more joined-up way.
We have also seen how services are being more person-centred, focusing on the needs of the individual child and their families, rather than being led by the standard service offer. This is being supported in places like Enfield, where local parents and carers have been brought in by local providers, such as North Middlesex University Hospital Trust, to deliver disability awareness training sessions for staff to help them really understand people’s whole range of needs.
However, the budget reductions imposed on local authorities over the last few years and the resource challenges facing the NHS have slowed progress.
The National Network of Parent Forums State of the Nation report published in June said that the Children and Families Act presented the right reforms but in the wrong environment. As a result, we have seen it used as a framework for appeals and tribunals, rather than ensuring every child in gets the support they require.
Three bright prospects for the future
Despite the continuing pressures on services, there are three clear opportunities we think will help continue to drive improvement over the next five years.
1. Spreading a common approach to the age of transition
The NHS Long Term Plan has however brought health policy in line. Indeed, the NHS has gone one step further indicating that there should not be a hard and fast rule about age limits, people should be supported to transition to adult services at a time that is appropriate for them. This should make it easier for health and education services to work in harmony with each other and ensure support for users around transition is holistic.
2. Investing in information and signposting to ensure people making the best use of what is on offer
Even with resource pressures facing both the education and health sectors and the variation between areas, there is still a lot of great support being offered. However, parents and young people themselves are often unaware of what is known as the ‘local offer’. This has not been helped by cuts to information sessions and workshops that help support people to find services and build resilience.
Healthwatch has a statutory duty within the SEND Code of Practice to provide information and signposting, and many local Healthwatch have worked with their local Parent Forums to develop this offer. We have been supporting these local partnerships but this often under-recognised Healthwatch function needs sufficient resourcing to ensure people can find the help they need.
3. The increasing focus on prevention and early intervention
The general direction of the NHS Long Term Plan places greater emphasis on early intervention to provide a better quality of life for people and prevent crisis situations from occurring.
This is really positive for SEND services because it provides an opportunity to raise a whole range of issues, from the need for more support whilst people wait for a diagnosis, to the need to look at ‘postcode lotteries’ in the current arrangements. The additional emphasis on carers in the Long Term Plan is positive, helping to ensure parents and relatives don’t burn out whilst providing essential support.
We are pleased to hear that NHS England has recently set up a Children and Young People Transformation Board to support the further development of the Long Term Plan in this area. We will work with this group to ensure it focuses on tackling issues that matter to people.