Forrest Gump once said that life is like a box of chocolates, but if life is like a box of chocolates, then growing up must be like eating those chocolates upside down and immersed head first in a vat of sweat, adults, appointments, exams, friends and teachers. On top of that, throw in the vast number of emotional and physical changes that you’re going through and you’ve got growing up for most kids. You just want to fit in and for the most part you don’t. It’s tough. This is no different for disabled children and young people. However, as Conrad Will of Disabled Young People’s Advisory Group EPIC put it:
Growing up itself is hard, but growing up with a disability of whatever nature is that much harder. To speak out and make your voice heard as a young disabled person is an unspeakably difficult thing to do.
An unspeakably difficult thing. As in, so difficult that it cannot be expressed in words. So what support do we have for children, who are not only having to contend with youth and young personhood, but are then having to adjust aspirations to suit the services that are available to them? and who should be able to meet their needs? Thankfully, we’ve come a long way over the last ten years and it looks like we’re starting to ‘get it’. The shift towards person centred approaches and life outcomes is putting children and young people at the centre of their own education, health and care planning decisions. We’re learning to listen to the aspirations and needs of these children and embed these aspirations within policy and practice and in particular, through education health care (EHC) plans.
It has been two years since the implementation of EHC plans, we’re on the move but at this stage but we’re yet to ‘crack it’. So what does ‘cracking it’ mean?
The National Children’s Bureau recently released a report entitled Nursing in schools: how school nurses support pupils with long-term health conditions. Whilst the report and survey focussed on long-term physical conditions, there were still a number of broader findings that highlight the importance of school nurses in the shift towards person centred planning. The survey found that 79% of respondents were involved in ‘creating individual health care plans’. Nurses also report to be a dedicated and motivated workforce and the various referral methods that they receive suggest positive progress towards multi-agency approaches in care. With 60% of respondents indicating that they either hold or are working towards Speciality Community Public Health Nursing qualifications, it is clear that they are a crucial and highly specialised link between school, home and the community and are in a unique position to make a positive difference for children and young people with special educational needs and disabilities.
For young people, these nurses and the skills that they are bringing are key, and they make all the difference between existing and living life to the full. Good quality Public Health input at the right time, personalised to the needs of a young person, brings outcomes to young people that enable them to be in control of their own health needs and still participate in the world around them. We’ve worked hard alongside young people to ensure that their unspeakable difficulties are heard. Let’s continue to make good on our commitment.
Harley Young, Development Officer, Council for Disabled Children
The Council for Disabled Children acts as the coordinating voice for the voluntary sector in relation to disabled children’s health and is one of the strategic partners to the Department of Health on children’s health issues. We have close links with Colleges and other representative bodies. Our Director is an Honorary Fellow of the Royal College of Paediatrics and Child Health and we are also represented on their special interest group for disabled children. We provide the Secretariat for the Children and Young People’s Health Alliance. Through our programmes of work for NHS England and Department for Education we have excellent links into commissioning and practice networks across the NHS.
