An Ordinary Life will apply a Person Centred Planning approach in order to put the child at the heart of their own care, and for the family as a whole to be supported to develop a personalised, holistic package of support which will improve their quality of life.
Technology dependent children need 24-hour, long term care. They are often living with severe learning and physical disabilities, perhaps as a result of premature birth, chromosome abnormalities or acquired brain injury. These children have multiple disabilities and medical needs so are often in hospital for long periods of time. While their medical needs are often well attended to, their social, emotional and developmental needs are often not prioritised.
We have called the project, 'An Ordinary Life', because many children and young people dependent on medical technology are unable to do ordinary things like going to the local leisure centre or visiting friends or family. We are striving to make these simple things in life, that others take for granted, achievable for this group of children and young people.
This clip shows Christian's Circle Of Support and Person-Centred Plan in action.
What we will be doing during the next three years
Throughout the early part of 2011 we interviewed a number of technology dependent children and their families from across the country who are benefitting from person and family centred approaches. Some of the young people were using personal budgets, which meant that they had more choice in the kind of support and care which suited them best. For example, a few families recruited their own team of personal assistants who supported them on the days and at times most convenient to the young person. Two young people have even been involved in piloting the new personal health budgets, which enabled them to have more choice in support to address their health needs.
Others told us about the need to adapt their house to make it more accessible, and another family used a circle of support as a way to increase their social network and provide additional support to plan for the child's future.
The stories of the people we interviewed have been written up into a booklet for families (we hope it will be of use to professionals who support them too) and includes information on how to overcome some of the barriers to having an ordinary life.
Now we'll apply what we have learned during the first year of the project with families in five pilot sites around England. The project will support these families by enabling them to try practical approaches that suit their particular needs as a family, rather than perhaps relying on the more generic health and social care packages. We'll report our learnings from this in 2014.
Some of you reading this will remember the King’s Fund seminal work also called ‘An ordinary life’ , led by David Towell in the 1980’s, 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, in 2012, are still marginalised in society.
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.