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Celebrating Learning Disabilities Week. New approaches to planning care - Empowering families in Suffolk

Published: 16/08/13

To celebrate Learning Disabilities week, NDTi are sharing their experiences of developing the Better Lives programme, putting families at the heart of planning and decision making.

Co-designed with families, the Better Lives programme offers information and training days, the opportunity to meet and learn from other parents, chances to build support networks involving extended families and friends, and opportunities to build good working relationships with the people who make decisions about local services. Uniquely it also includes working in partnership with local service providers to think about and design services.

The National Development Team for inclusion (NDTi) with Dimensions developed this innovative programme to support families of people with learning disabilities to take a leading role in ensuring that services are designed around the individual, are high quality, and make the best use of available funding.

Through the programme families are thinking about the sorts of support they want and need. This might be a tailored programme from an existing service provider or it might be taking a personal budget and employing their own personal assistants.

Better Lives has thrown up challenges for local authorities about how they engage with and listen to families. Inviting people along to training programmes that were designed for staff or sending out leaflets does not work. Families want information events designed for and around them – where grandparents, brothers and sisters and friends are all welcome, where they can get immediate and honest answers and where they and their children are seen as the most important people. Planning with families must be done in a way that meets their needs and not as part of a ‘faceless’ assessment process.

The success of Better Lives can now be seen in Suffolk where the County Council have commissioned two further programmes aimed at the parents of young disabled children. This time, local families are joining the NDTi as course leaders offering their expertise, experience and support to other local families.

Councillor Alan Murray, Suffolk County Council's cabinet member for health and adult care, said: “We have been continually inspired and moved by the impact the Better Lives programme is having on the people involved. It has really demonstrated the value of working with parents on an equal footing and investing in young people and their families so that personalisation make a real difference to their lives. If practitioners still needed some convincing about the outcomes that can be achieved, then this is clear evidence of our approach being absolutely on the right track."

Bill Love, Head of Development, NDTi said “ We are very pleased that Suffolk County Council are being so forward looking not just by investing in informing and training so many parents but by actively seeking to listen to them and ensuring that they will be a key part in local developments. Julie, Kate and Sarah, three of the Suffolk parents, have taught us so much through their stories, questions and ideas. We now need councils around the country to start making this sort of investment so that more parents can be leaders and partners”.

Julie McCarthy, Sarah Pritchard- Barrett and Kate Chate are three of the parents from Suffolk who took part in the first Better Lives programme.

Talking about being part of the programme Sarah Pritchard-Barrett said:
“I’ve learnt about behavior being communication, about advocacy, about understanding my daughter’s disability. I really understand the place I’m in as a parent but more importantly the place my daughter is in as a member of a social minority”.

“I learnt to be inventive, creative, resourceful and positive. I now have the confidence and language to co-operate alongside practitioners – it’s no longer us and them, all the tension has gone.”

Julie McCarty said
“I have found that there are many things out there and with the right support my daughter can live life to the full. One day she will be able to live with her friends in supported living, not be at home we us as we grow old”.

Julie McCarthy, Sarah Pritchard- Barrett and Kate Chate are now part of the team delivering two further Better Lives programmes to more families in Suffolk. They are doing this “to keep going with better Lives, to enable other parents to find this path and t remain connected with each other as mum”.

Sarah Pritchard- Barrett added
“I wanted more and knew that for this idea to gain momentum we needed lots of parents to want to adopt this way of thinking. We wanted change for our kids, so they could choose their futures and follow their dreams”.

Steve Scown, Chief Executive, Dimensions said “Our aim in supporting the Better Lives programme with NDTi was to help families embrace personalisation by supporting their journeys toward greater, and more meaningful, choice and control. We were really pleased that families who took part in the programme benefited in the ways they did. The period of transition is difficult for many young people with disabilities and their families, and we felt that the Better Lives programme really made a difference to enabling people to take control of their futures. The future looks bright!”

Further information about Better Lives and an interview with Liz Wilson the Programme Leader, Sarah, Kate, and Julie can be found on our website here.

For further information please contact:

  • Bill Love, Head of Development Support and Training on 01225 789135 or [email protected]
  • Councillor Murray can be contacted through Andrew St Ledger, Chief Press Officer, Suffolk County Council on 01473 264389 or [email protected]
  • Julie McCarthy, Sarah Pritchard- Barrett, Kate Chate and Liz Wilson can be contacted via the NDTi office in Bath on 01225 789135
  • Steve Scown can be contacted on 0300 303 9053 and at www.dimensions-uk.org