The Foundation for People with Learning Disabilities (FPLD) has launched a free interactive booklet and communication passport to help families to improve the quality of life for their child with complex health needs or who is dependent on medical technology to survive.
The booklet, An Ordinary Life, has been designed to help families ensure their child is at the heart of their own care. Thirteen families with children who have complex healthcare needs were interviewed, in addition to health and social care professionals, to identify the barriers that families face when trying to get the right support for their child. The booklet addresses these issues, which include education, transition, emergency planning and knowing your rights and signposts families to more information and helpful services. In addition, the FPLD has launched 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. J
ill Davies, research programme manager at the FPLD, said: "Children with complex and severe health needs still have the same 'ordinary' wishes and needs as other children - what matters most to them is being able to live at home, go to school, spend time with friends and take part in leisure activities with their family and peers. And this is also important for their families. "To try and achieve as ordinary a life as possible, families constantly fight for the best care for their child, and this is where we hope our resources can make a difference. The parents we have spoken to say that they had to break down many barriers to achieve better outcomes for their child, including getting their house adapted to suit the child's needs, getting better information about what individualised funding for health and social care can be used for, managing the transition from children to adult services and finding out about the benefits of employing your own team of support workers. "Our resources hope to support the family as a whole by providing them with more information to develop a personalised, holistic package of support which will ultimately improve their quality of life."
The booklet and passport are part of the FPLD's An Ordinary Life project aims to improve the quality of services to children who need long-term care and their families through supporting families to develop individual, personalised, and person-centred planning solutions. This is a three-year project funded by the Department of Health. The next stage of the project will see ideas for practical action from the An Ordinary Life booklet piloted in five areas of England with the aim to produce good practice guidance at the conclusion of the project in March 2014.
An Ordinary Life can be downloaded from: www.learningdisabilities.org.uk/publications/an-ordinary-life-booklet/