My life, my support, my choice: Children and young people call for coordinated care and support
My life, my support, my choice: a vision for coordinated care and support for children and young people with complex lives is published today by TLAP and charity coalition National Voices. It sets out how good, coordinated - or integrated - support looks to children and young people.
My life, my support, my choice is endorsed by the national Children's Health and Wellbeing Partnership and supports the implementation of the policy initiatives and legislation that are currently shaping services for children and young people, including The Care Act 2014 and The Children and Families Act 2014.
The key themes in the report can be summarised as follows, in words written from the point of view of children, young people and the people who are important to them:
"I am respected and listened to;
I have choice and control;
and at every stage I am supported to live a full independent life."
Further 'I statements' set out in more detail the things that are important to children and young people when accessing care and support from multiple agencies, such as:
"Adults around me do not make assumptions about what I can and cannot do."
"I consistently see the same team of people who work with me and get to know me."
"I am aware of the different types of support that are around me and how I can access them."
"I and the people who are important to me have a named professional, who coordinates all the support we need"
My life, my support, my choice offers a clear set of outcomes that commissioners and service providers should be working to. It covers children and young people up to the age of 25 and takes account of the transition into adulthood.
My life, my support, my choice is one of four new branches of the Narrative for person centred coordinated care launched in 2013, and which has been adopted by many health and care organisations including NHS England as well as individual care providers. It also builds on the work of Think Local Act Personal's Making it Real framework which sets out what people expect to see and experience if personalisation is real and working well in a locality or organisation.
National Voices and Think Local Act Personal (TLAP) produced My life, my support, my choice alongside young people with complex lives and people who are important to them as well as other voluntary organisations. They include members of TLAP's National Coproduction Advisory Group; the Council for Disabled Children; young people from the Healthy Mind participation groups, Barnardos, Bradford District; the Helping Young People through Experience participation group at The Market Place project, Leeds; young people who participated in Takeover Day 2014 with the Children's Health and Wellbeing Partnership; the Association of Directors of Children's Services; Contact a Family; Diabetes UK; In Control; LUPUS UK; the National Children's Bureau; the Young People's Health Partnership; the National Development Team for Inclusion; the National Network of Parent Carer Forums and Together for Short Lives.
Sally Percival, Chair of TLAP's National Co-production Advisory Group, who along with her son Alex, shared their story in My life, my support, my choice, says:"As the mother of Alex who has a complex life we want him to have support that is tailor made to fit him not a "one size fits all" service, a service that looks at all of his life in a joined up way. Alex and I know what is important to him and commissioners and service providers need to listen.
"My life, my support, my choice looks at the person not the disability. The 'I' statements can be used to ensure that our young people can have a life like any other young person; they just need flexible support that puts them at the centre. Importantly it was written with young people so it reflects what is important to them and their families."
National Voices' Membership Manager, Sarah Best, says:"We urge commissioners and providers to use My life, my support, my choice as a tool to have their own conversations with children and young people about their lives, their dreams and goals, and the way they want to be supported.
"We also hope that it may empower children and young people and those around them to challenge their local services, to start conversations with them, and to get involved in designing services and support."
TLAP Director, Dr Sam Bennett, says:"Commissioners and service providers need to know and hear what is important in the care and support of children and young people with complex lives, from their perspective and that of the people who are important to them.
"Because these are children and young people who are likely to need support from multiple services in their life, their lives have been made even more complicated by all the different professionals, agencies, funding streams, policy and legislation involved. But we should never lose sight that they have their own very clear ideas about how they want to live their lives, fulfil their dreams and goals and the ways they would like to be supported."