Today, the Foundation for People with Learning Disabilities is launching a package of new support materials to raise awareness of the aspirations of children with complex health needs and their families, and to highlight the opportunities available to improve their lives.
The materials are the result of the charity’s three year project “An Ordinary Life” and include the briefing, Looking for an ordinary life, and the booklet Children and young people with complex health needs – a one-stop booklet for families.
It is estimated that over 6,000 children in the UK have complex health needs, with a growing number living into adulthood. These children may have special educational needs and / or life-limiting conditions and can often be technology-dependent, are well attended to medically, but their social, emotional and developmental needs are not always prioritised.
As part of the project, nearly 40 children and families from across England shared the obstacles hindering their quality of life, and the Foundation supported many of these families to try new approaches. Many needed help with practical issues, including accessing leisure opportunities, transport, having a voice and making adaptations to the home, and described the difference that a suitable home, personal budgets and person centred planning can make.
Families require accurate and timely information and support to make these things happen, however there are a whole range of professionals these children are in contact with, yet it is very rare to find a family who say they have someone who can join all these up for them. The charity is calling for improved partnership working through shared decision making between families and services would really help this process.
Jill Davies, Research Programme Manager at the Foundation for People with Learning Disabilities, says:
“It is clear that children in this group are not only fighting to stay alive, but they also have to fight for the opportunities to do ordinary things that others take for granted - from the exercising of basic childhood rights, like communication, independence and friendships, to more spontaneous aspects of life, like going on a school trip.
“We need to ensure that publicly funded services work as effectively and efficiently as possible to support the family, through person centred planning, to make sure their child is at the heart of their own care.”
The briefing has been designed for practitioners, children’s health and social care commissioners, schools and colleges and aims to inform and raise awareness about the aspirations of this group of children and their families, while the booklet for families aims to offer information and routes to support, which will improve the quality of life for this group of children and young people and their families.
The Foundation is also launching:
• A one stop booklet for parents: Children and young people with complex health needs
• An easy read person centred planning template: My Health and Person Centred Plan
• Three handy factsheets: Leisure, Flying and Financial Benefits
• One page profile template for children with complex needs: A book about me
• An ordinary life: a booklet to help families make sure their child is at the heart of their own care