An Ordinary Life
Many children and young people with complex health needs, dependent on medical technology are unable to do ordinary things like going to the leisure centre or visiting friends or family. Our project 'An Ordinary Life' aimed to make these simple things in life, that others take for granted, achievable for this group of children and young people.
What we did
The project started in 2011 when we interviewed a number of technology-dependent children and families from across the country who were benefitting from person-centred approaches. The stories of the people we interviewed were written up into a booklet for families and professionals called 'An Ordinary Life' and includes information on how to overcome some of the barriers to leading a full life.
We also produced a communication passport 'A Book About Me' to help tell people about the child in emergency situations.
This clip shows Christian's Circle Of Support and Person-Centred Plan in action.
We then worked with several sites around the country running small projects to explore how they could improve the services and support available to people who have complex health needs and their families.
Working in Blackpool, Nottingham, West Sussex and Gloucester we gathered learning and examples of best practice for our free downloadable guide 'Children and Young People with Complex Health Needs - a one-stop booklet for families'. From this learning we have also produced three factsheets to help families find out what support is available to them and a Need to Know information sheet for policy makers. We want them to change how services are run for people with complex health needs.
Children and Young People with Complex Health Needs - A one-stop booklet for families
This booklet offers information and practical support to help improve the lives of children and young people with complex health needs.
Need to Know briefing: An Ordinary Life
Summarises findings about some of the current issues affecting children and young people with complex health needs for practitioners, health and social care commissioners and education professionals.
An Ordinary Life One Page Profile
A one page profile to help children with complex health needs to tell people about themselves. Download the profile, add a photo and fill in your answers.
Health and Person-centred Plan
A downloadable person-centred plan to fill out and keep. Once completed, the plan will tell people caring for children with complex health needs everything they need to know about the child's needs.
A factsheet packed with handy tips on planning a flight for people with limited mobility.
A factsheet full of ideas and advice for enjoying holidays and leisure time with children or adults with complex health needs.
Advice on how to get financial help if you're caring for a child with complex health needs.
Some of you reading this will remember the King’s Fund seminal work also called ‘An ordinary life’, led by David Towell in the 1980s, which led to the large hospital closure programme. This new project brings the spirit of the King’s Fund programme to a new generation of children and young people who, today, are still marginalised in society.
For more information on An Ordinary Life, please contact Jill Davies on email@example.com.
Jill has 20 years' experience working with children and adults with learning disabilities. She is an RNLD and has a BSc Degree in Psychology. She serves as Chair of the Transition Information Network steering group and is part of the PMLD network.