Jill Davies, Research Programme Manager for the Foundation for People with Learning Disabilities:
This week we launched a new resource for parents who have a child with complex health needs and/or may be dependent on medical technology
. This is a very small but incredibly marginalised group of children in society who encounter barriers to achieving an ordinary life on a daily basis.
I had the privilege to speak to thirteen children, young people and their families
to find out what life is like when you have such a high degree of health needs that need addressing on a 24 hour basis.
I remember a 16 year old whose wheelchair was too wide to manoeuvre around her favourite shop, Claire’s Accessories. Anyone of us who has been in that shop can testify it is full of teenage girls having fun, deciding what hair bands or jewellery to spend their pocket money on. One little boy who needs support 24 hours a day had to cope with 14 different agency carers to support him in one week.
Another family said they could only stay one night when visiting close relatives because the bathroom was upstairs making it impossible for their son to have a bath. One young man could no longer spend time in his father’s house because funding for adaptations to the home are restricted to one home only. One little girl only saw her friends out of school in her home as her friends’ homes were either not accessible for wheelchairs or their parents were nervous about her being in their home.
I could go on and on, as every family had so many stories to tell me. What is apparent is that this group of children live isolated lives as they have to spend far more time in their own homes compared with other children. Whilst most children spend time visiting friend’s houses, having sleep overs with grandparents or friends, most of the families we spoke to said their child had few opportunities to do these things.
However, things are beginning to change. The personalisation agenda means that people can get personal budgets rather than allow support to be delivered by services that can be inflexible. One mother, Jo Fitzgerald, said: “I became frustrated by the bureaucracy and lack of flexibility in the support that Mitchell was receiving. To me, it made sense for Mitchell to be central to the decision-making, so I realised something had to change.”
In her case, it was to apply for a personal health budget.“We’d been managing a small direct payment over a period of time and realised what could actually be possible – that we could organise the staff, train them, and expand that experience in to a wider, more tailored package for Mitchell. It was clear that this had never been done before, but our PCT was committed to making it work. Things have changed dramatically for Mitchell. We’re trying to give him a good life and keep him well. His personal health budget has given us a lot more freedom as a family and we can do things that we couldn’t do before.”
Our new booklet, An Ordinary Life
, has been designed to help families make sure their child is at the heart of their own care, based on the experiences of the thirteen families. The booklet addresses the barriers that the families had to face when trying to get the right support and provides practical ideas to issues, which include personal budgets, planning in a more holistic way, developing social networks, education, transition to adulthood, adapting the home, emergency planning and knowing your rights. In partnership with some of the families we interviewed we also developed an interactive communication passport, A Book About Me
, which can be completed to contain personal information about the child’s needs, medical conditions, likes and dislikes, in order to help new people, such as health professionals, better understand the child’s needs.
This work is part of our An Ordinary Life project
where we’re aiming to improve the quality of services for children who need long-term care and their families by supporting them to develop individual, personalised and person-centred planning solutions. Some of you reading this will remember the King’s Fund seminal work also called ‘An ordinary life’ 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.
Having now published our booklet and communication passport, we will be piloting ideas for practical action in five areas of England and we will produce some good practice guidance at the end of the project in March 2014. Here’s to the next phase!