National Network of Parent Carer Forums

Text Size A A A

Slideshow Image

NNPCF respond to NICE Consultation on Learning Disability and Behaviour that Challenges

November 17, 2017

The NNPCF have today responded to the NICE Consultation on Learning Disability and Behaviour that Challenges.

NICE have drafted guidance about how services should work for people with a learning disability and behaviour that challenges, and they want to know what we think about it. The consultation closes on Monday 20th November.

The NNPCF welcome the aims and principles of this guideline. As a parent carer led organisation we strongly believe that:

  • Children, young people and families should be supported to have a good quality of life. They should be treated with respect and have an expectation of a home in their local community.
  • Children and young people should be kept safe but at the same time supported to take positive risks.
  • Children and young people should have choice and control over their lives.
  • Children and young people’s support should be provided in the least restrictive way.
  • Children and young people should get equal health outcomes to the rest of the population.

The NNPCF fully recognises the unprecedented financial challenge that Local Areas (LAs/CCGs) are facing and the need to deliver cost-effective quality services when numbers and complexity of needs are rising. Families feel frustrated and lack confidence in the system.

The NNPCF strongly believe that working with parents, carers, children and young people is at the heart of legislation. There is a better way forward which is to treat parent carers and young people as equals and allow them to participate in decisions which affect them and in planning services.

The NNPCF is concerned that many Local Authorities and CCGs do not have accurate data relating to actual (or likely) current and future local service needs for children and young people with a learning disability and behaviour that challenges. Many Joint Strategic Needs Assessment (JSNA) do not focus on and plan for the services required by children and young people let alone children and young people with a learning disability or behaviour that challenges. Research by the Council for Disabled Children and the True Colours Trust ‘Understanding the needs of disabled children with complex needs or life-limiting conditions: WHAT CAN WE LEARN FROM NATIONAL DATA?’. This research asks how we can plan to meet people’s needs if we don’t know what they are.  The report states that there are growing numbers of disabled children and young people with complex needs and/or life-limiting conditions in the UK. These children, and their families, need support from statutory services in health, education and social care.  It argues that there is a data challenge.

“Local authorities and providers do not have the data that allows them to adequately plan and commission services for these children and young people. The national data set on disabled children is inadequate: it has gaps, anomalies and inconsistencies.  It is unfit for purpose. There is growing acceptance of the need to integrate and plan holistically for children and young people’s needs.”

To read a full version of the NNPCF response please click here. For more information about the consultation please click here.