National failure to support cerebral palsy

Action Cerebral Palsy has published a Parliamentary Inquiry into the national delivery of support for children with cerebral palsy.

Cerebral palsy is the most common childhood disability. If education, health and social support cannot be provided effectively for this group of children it reflects poorly on the entire special educational needs support system. With that in mind, the following quote is worrying:

“The UK lacks a common sense of what good should look like for children with cerebral palsies and their families”

What does the report say?

The full report can be found here.

The foreword of the Inquiry Chair, Paul Maynard MP, is telling. Within seven lines he highlights that the common theme for parents seeking support for children with disabilities is a struggle through an adversarial system. In our experience, this system has developed over decades of local authorities seeking to avoid public expenditure in the short-term.

The overall findings from the inquiry are:

• Early identification and support is crucial

  The ages of 0 – 2 are described as the ‘golden years’ for mitigating the impact of cerebral palsy on future prospects. However, only a very small proportion of the 1,800 children born with cerebral palsy each year receive the early and intensive intervention that they require, due, in part, to insufficient resourcing of education and therapeutic services.

  Cerebral palsy stands out against many other special educational needs as early intervention can make a very significant difference to future prospects. A failure to diagnose and provide adequate support during the ‘golden years’ therefore represents a significant failure.

• The importance of education provision, as well as health

  The report concludes that a recurring theme is a lack of recognition by local authorities of the specific learning needs of children with cerebral palsy and that ‘one size fits all’. In addition, the report highlights that parents often have to ‘fight’ to secure adequate education support as a result of local authorities adopting cultures of short-term costs savings.

• Health and educational support need integrating

  The report highlights the importance of teams working together, especially for cerebral palsy. The report highlights that the Children and Families Act 2014 requires cooperation between health and education teams but that there is a great deal of scepticism that this will actually happen.

Will the reforms make anything better?

The foreword by Mr Maynard MP highlights that the special educational needs reforms require a cultural change of cooperation, support and family-centred working.

The reforms affect health, social care and education. We would suggest that the following issues arise:

• Education (local authority SEN teams)
  
  We have noticed local authorities using largely the same approach with the new system as with the old. It seems there is a cultural inertia which needs to be overcome. SEN Teams often have limited resources and the Statement or Education, Health and Care Plan (EHCP) that they prepare can often lack the level of support parents may want.

   

  Parents, and those acting on their behalf, will still need to be actively aware that support is available for children with cerebral palsy. The inquiry highlights the benefit of early intervention. If parents or people supporting young people are facing difficulties getting support, or are unsure how to obtain support, they need to seek specialist SEN advice quickly.

• Health teams

  Health teams are traditionally hugely under-resourced. This means waiting lists for assessments can be several months and direct support is minimal.

  The Children and Families Act 2014 requires that health teams inform the local authority of any child with potential special educational needs immediately. Further, when a local authority does decide to assess a child’s special educational needs the health team must provide advice and information within six weeks of a request. This should include an assessment of the child’s health needs relating to their disability.

  Currently, many health teams are simply failing to do this. The fact that legislation exists that requires the provision of advice and cooperation does not overcome the lack of resources.

• Social care teams

  Within the system of Statement of SEN, SEN teams would seek advice from social care. Often the response from social care would be simply that the child was not known to that service. That response seems to still be in use. As the EHCP must contain an assessment of needs and provision for social care needs, it seems that this response is insufficient.

Conclusion

The inquiry is worrying. The Children and Families Act is an embodiment of holistic needs and proactive child-centred support. Cerebral palsy is the most common childhood disability and should be the flagship for the special educational needs reform. If one disability should naturally realise benefit from the reforms within the Children and Families Act 2014 it would be cerebral palsy.

The fact that cerebral palsy provision is so poor, across all areas, gives a very dim account of all special educational needs provision throughout England.