The Foundation for People with Learning Disabilities launched a project aimed at improving the quality of life of children with complex health needs and/or dependent on medical technology. It ran from 2011 – 2014 and was funded through the Department of Health.
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. The 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 happened
The project started in 2011 when a number of technology-dependent children and families were interviewed from across the country who were benefitting from person-centred approaches. The stories of the people 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.
A communication passport ‘A Book About Me’ was also produced to help tell people about the child in emergency situations.
The foundation 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 the project gathered learning and examples of best practice for the project’s free downloadable guide ‘Children and Young People with Complex Health Needs – a one-stop booklet for families’. The project has 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.
Elijah’s story
Elijah is five and has a range of complex health needs arising from having Apert syndrome. He lives with his mother, Kaddy, and spent most of his early life in hospital. He has a team of support workers who care for him over a 24 hour period. This has meant that lots of people have come into their lives, and at one point there were 14 different workers in his team. The support workers are employed by an agency, so Kaddy and Elijah have no say in who comes to work with them. Kaddy says:
“We never get enough time to know if we get on with the person from the nursing service”
Kaddy attended a ‘Kindred Spirits’ programme – a course aimed at working towards desirable futures for disabled children. She found out about personal health budgets and decided this was the way forward for her and Elijah. They have now applied for a personal health budget and are waiting to find out how much funding they will receive. A personal health budget would ensure Kaddy had a pot of money given to her from health funds to purchase the support she and Elijah needed. Having such a budget allows the individual more control over the support they receive, and in Kaddy’s case it means she and Elijah can select the support workers themselves.
The budget is based on a support plan which details the hours support Elijah needs along with money to advertise, recruit, train and pay annual leave support staff. In order to make this possible she set up a circle of support for herself and Elijah, and asked some of those who attended the Kindred Spirits course with her to be members. Other people have joined the circle since then, including an occupational therapist and others with expertise in this area. They met to support Kaddy in drawing up a person centred plan for Elijah, which would be central to the assessment process for the personal health budget.
A person centred plan is a way of planning all aspects of someone’s life, which puts the person at the centre of the planning, and in Elijah’s case, this fed into his support plan which determines the actual budget. It is a good idea to have a circle of support when doing person centred planning, as having a wider network of people can make help to make change happen and offer practical support and expertise to your family. For example, one member of Kaddy and Elijah’s circle was a good writer, so she was given the task of writing reports to give to the local authority to request that Elijah be assessed for a personal health budget, whilst another person was a clear thinker so they accompanied Kaddy when attending meetings with senior managers from the local authority. Kaddy didn’t feel so lonely or that she had to do everything herself in order to make Elijah’s life better, and now believes that:
“Every family needs a circle”
Elijah and Kaddy are part of the An Ordinary Life project. Find out more about An Ordinary Life and download the free An Ordinary Life booklet and A Book About Me Communication Passport.
Further information
To find out more visit www.learningdisabilities.org.uk
Written by Rachel Harrison, Speech and Language Therapist
On behalf of Integrated Treatment Services
