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Written evidence submitted by Action Cerebral Palsy

Support for children and young people with special educational needs

There are approximately 30,000 children and young people with cerebral palsy (CP) in the UK. 

      1 in 3 is unable to walk.

      1 in 10 has a severe vision impairment.

      1 in 4 is unable to talk.

      1 in 2 has an intellectual impairment.

      It affects approximately 1:400 children with approximately 1,800 children diagnosed each year.

Cerebral Palsy (CP) is a lifelong and fluctuating neurological condition which is the most common cause of physical disability in childhood and can affect those from all social background and social groups. The condition affects movement, balance, co-ordination and posture and is caused by abnormal development or damage to the parts of the brain before, during or soon after birth.

A complex condition that primarily affects sensory motor function, CP can also encompass several neurological disorders affecting all aspects of development in the growing child. Children with CP can have a range of issues with communication, cognition and learning, hearing or sight, and difficulties with sensory processing. This has a huge impact on how these children develop, learn, and interact with the world around them.

Therefore, cerebral palsy should not be considered as purely a physical disability. The unique nature of this neurological condition in which elements are inter-related and impact on each other in both subtle and complex ways, requires a global approach bridging health, education and social care.

Action Cerebral Palsy (www.actioncp.org – Registered Charity Number: 1165217) is the only charity which advocates solely on behalf of children and young people with cerebral palsy and their families.  Since 2012, Action CP has sought to establish the facts about the level of provision of care for children with CP through reports, surveys and consultation with our population and to raise awareness of the issues facing these children and their families and communicate the findings and recommendations for change to policy makers.  We work in close collaboration with expert clinicians, first-line healthcare professionals, therapists, education and special education professionals, other third sector organisations and with parents, carers and young people.  Until the campaigning initiatives of Action Cerebral Palsy, there had been no unified voice or platform for cerebral palsy clinical and educational professionals and the parents of children with cerebral palsy to draw together a coherent case for policy makers for improved provisions and reform to improve early identification, intervention, education and pathways of care for children and young people with cerebral palsy. 

The evidence we are submitting to this Public Accounts Committee Inquiry has been compiled from evidence compiled from over 200 families, young people and professionals and academic research for the All Party Parliamentary Group on Cerebral Palsy, of which Action CP was the lead sponsor, our Freedom of Information Act reports, online and in person surveys, as well as through our direct professional, parent, carer and young person engagement.

SUMMARY

Evidence from the APPG on CP, from our Freedom of Information Act reports, and gathered from parents and carers of children with complex needs as well as the young people themselves clearly demonstrates that the support offered by education, health and local authorities is insufficient and differs markedly from place to place, resulting in a stark ‘postcode lottery’. This variation in care means the chances of receiving SEND support from a school or local authority is determined by what is available in that local authority, rather than a child’s individual needs. Many communities have sub-standard services which act as a barrier to a child’s future potential and life opportunities.

Despite the widespread prevalence of CP, the existing legislative framework is fragmented and does not account for CP as a condition in its own right. Notably, the Disability Action Plan, the National Disability Strategy and the SEND and AP implementation Plan fail to mention CP or the needs of children with physical disability.   Meanwhile, policy makers, professionals within education, health and social care as well the public lack knowledge about the specific needs of children and young people (CYP) with CP resulting in an unacceptable variation in the quality of health and educational provision across the UK. 

Children and young people with CP require high-quality healthcare and special educational needs and disability (SEND) provision from experienced, specialist professionals so the impact of their disability can be mitigated from the earliest opportunity and their full potential maximised throughout their developing years.  They require an EHCP process that is not structurally flawed in which parents have access to professionals with the relevant skills and knowledge informed by awareness of and experience in cerebral palsy, and that does not split  health and therapies from education.    The EHCP process should be centred around ensuring best outcomes for the child, irrespective of the limitations of local provision or budgetary concerns within the local authority. This should include partnership working with the private and third sector with provision for impact assessments to be made should the EHCP not be implemented appropriately.

Due to the holistic and complex nature of cerebral palsy which can encompass a range of health and developmental challenges, establishing a model of education and care which meets the needs of this cohort would provide a blueprint for all disabilities.

THE OVERALL PICTURE ON THE SUPPORT AVAILABLE AND OUTCOMES ACHIEVED FOR CHILDREN AND YOUNG PEOPLE WITH CEREBRAL PALSY

      56% of parents of children with CP feel that education and health are not working together to support their child.​ [1]

      59% of these parents say that the EHCP process is bad (or very poor). Only 15% of parents said that the process had been good or outstanding. [2]

      When asked what they felt had/have been the biggest obstacles to getting the appropriate education and therapy support for their child [3]

• 53% responded that it was due to ‘Local education authority funding and financial needs are prioritised over my child’s needs’
• 35% indicated that it was due to ‘Local education authority provision which is too limited or not specific to my child’s needs’

      “The EHCP process is stressful and does not respect or appreciate the child and instead is focused on money.[4]

      “I have to fight for everything. I have to ask and repeat and remind and cajole. The next mum will have to do the same. It’s awful having this burden on top of the time consuming, physical and emotional burden of caring.”[5]

      From a still live Action CP national online parent and carer survey in conjunction with the Department for Education Curriculum and Assessment Review, parents are indicating that the barriers to their child’s progress, attainment and well being in school are:

• Insufficient levels of support for the full participation and inclusion in school life
• Insufficient access to appropriately trained and experienced staff
• Inappropriate levels of therapeutic and clinical support within school
• Inappropriate environment, adaptation and equipment
• Inappropriate peer group
• Inappropriate curriculum and levels of support to address curriculum access
• Inappropriate access to extra curricular activities
• Inappropriate methods of assessment and attainment
• 100% of respondents felt t hat the Governing Body of the School and External Monitoring (e.g. Ofsted or ISI) are not sufficiently monitoring the quality of their child’s education.

      67% of parents indicated that they did not think that their child was thriving in their school setting. [6] 

      When asked about the key barriers to their child’s well being, inclusion, participation, attainment and progress, parent written responses included: [7]

• “Staff not understanding the underlying issues .. i.e. just because they ' look ok on the outside' they do not see the invisible side of disability.”
• “Not enough support within the classroom for him to access the work and curriculum.”
• “Having friendships, experiences of belonging, they are part of a wider group”
• “Getting the right support all of the time.”

Parents are calling for greater flexibility in commissioning and accessing services for their child; in the words of one parent, they need “easier and quicker access to funding support together with joined-up thinking and less complexity around the myriad of funding pots across the local authority and NHS providers which are illogical and impossible to understand and act as barriers to accessing funding and support”.[8]

GOVERNMENT ACTION TO CREATE A SUSTAINABLE SEN SYSTEM AND RESTORE CONFIDENCE

Children and young adults with cerebral palsy, and their families who support them, are facing a system of provision that is fractured, incohesive, often adversarial   and that does not always follow the statutory timelines or duty of care. Our evidence demonstrates that parents of children with cerebral palsy are asking for improvements in services, specifically:

      Increased training of professionals of specific conditions and the impact of that condition on the children and young people;

      A clearer understanding of services available;

      An enhanced parental voice and a focus on meeting of individual needs of children, as opposed to reflecting the availability of local authority budgets or a “one size fits all” provision

Our evidence shows that many parents of children with cerebral palsy lack confidence in their local authority’s ability to make suitable arrangements for their child, with some even viewing their local authorities as being obstructive, inconsistent, and unaccountable. Provision inevitably tends to reflect what local authorities are able to provide, and the recommendations coming from professionals from the local statutory education and paediatric health sector, rather than what the child concerned requires to have the best life chances.

The unique nature of cerebral palsy which is a neurological condition requires a cross-sector approach bridging both health and education. In enabling schools to access specialist training or specialist CP experts would help to bolster the skills and knowledge that are required for assessing, supporting, engaging and monitoring the progress, wellbeing, and ongoing needs of the child with CP within the school.

A flexible approach is needed to draw on all agencies’ expertise – both statutory and voluntary – with a greater breadth of educational support at different stages of life, whether this is from a state, independent, special, or mainstream school or a blend of co-delivery from these. Collaboration and co-delivery between statutory and non-statutory agencies is crucial to delivering effective and flexible educational provision for children with cerebral palsy.

The route to excellent provision for people with complex needs such as cerebral palsy lies in effective and coherent change, which makes the most of the experts and resources already available, builds new expertise into the system, and which and creates joined-up, cohesive strategy that seeks to make expertise and services available to all people with cerebral palsy and is implemented with full Government backing.  Establishing a model of education and care which meets the needs of this cohort would provide a blueprint for all disabilities

Government should take the following steps to create a sustainable SEN system that would restore the confidence of parents and carers, children and young people and the professionals involved that includes:

Workforce Skills and Training

      Ensure that schools, local authorities and families have access to expertise and specialists including drawing on existing expertise in specialist schools and 3rd sector organisations.  Specialist skills must be available from all community paediatric teams and from specialist teachers for physical disability and not just from speech and language therapists and education psychologists as the current plan proposes.  

      Focus and funding on an expanded SEND module in initial teacher training and condition specific CPD training programmes, so early education professionals and teachers have the necessary skills.  Requiring the Practitioner Standards under development within the SEND and AP Improvement Plan to encompass the skills and expertise needed to meet the needs of the physical disability (including cerebral palsy) cohort of children is vital.  Teachers are rarely trained in cerebral palsy specifically, and the number of physical disability specialist teachers and advisors is greatly diminished

Improved national standard EHCP processes, with a national EHCP template that is fit for purpose for children with complex conditions.

      The creation of a single national template and process for EHCPs to be produced by experts in specific disabilities including those complex conditions such as cerebral palsy, with increased routes for input from both families and relevant professionals. 

      Having condition specific expert input in the EHCP process is pivotal to ensure the correct level of provision to enable a child with CP to thrive, and will facilitate better overall decision-making for the care and education of CYP with CP. 

      To ensure the EHCP is a compassionate process that supports those it provides for, we are calling for the parental voice to be honoured as a right when it comes to the consultation and writing of the EHCP. Each EHCP must be co-authored with equal input from local authorities, parents, and the appropriate professionals with knowledge and expertise in cerebral palsy, with parental views listened to, and acted on.

      Every family with a child with cerebral palsy must be allocated a neutral lead professional, with knowledge and experience of cerebral palsy, to support and coordinate their EHCP and suggested services. This professional will be an advocate for the family and have the capacity to act on their behalf.

      The needs of children with complex conditions such as CP change rapidly throughout their growing years, and EHCPs can become out of date very quickly. The outcomes first specified will always need updating and, while the documentation may be static, the implementation and reviewing of it can be dynamic by continually readjusting the proposed outcomes.  Through the work of skilled practitioners, and with the right equipment, understanding, and environment, the EHCP outcomes and targets should be continuously reviewed for some children with cerebral palsy for optimal learning and health outcomes. Whilst an annual review is useful it only reflects a single point in time and does not reflect the developmental progress of children with cerebral palsy. In order to address these issues, and to enhance the opportunity for parental involvement, we recommend that each EHCP will contain a parental right to review whereby families of children with cerebral palsy are entitled to a minimum of 6-monthly catch-up sessions. Parents will have the right to review and comment as part of the consultation process on the assessment report, before the draft EHCP plan is released.

      Personal Care Budget: Every family with a child with complex needs such as cerebral palsy should be offered control, as a right, over a personal care budget for services, equipment and other needs and a choice of choosing between public, independent or third sector providers.  It is crucial that children have swift access to the resources they require, and, in particular, for their communication, assistive technology and mobility needs. Where local areas, as is often the case, lack appropriate provision and/or expertise, there should be no fear of commissioning, and working with other specialist providers. A personal care budget for families would enable greater flexibility over commissioning these services.

Better accountability at all levels

      Regulatory bodies such as Ofsted and CQC who have responsibility for overseeing educational and healthcare services, should have access to specialists in cerebral palsy for additional training and support, should receive as a matter of urgency the appropriate training to correctly identify and assess the quality of educational provision, services, and outcomes for children with cerebral palsy.  These trained experts should have the capacity and ability to work with Ofsted to train and support their inspectors in visiting specialist schools and services.

      Local authorities should be assessed not only on upholding their basic duty of care, but on how well health and care services are integrated with education services.  Local authorities and the staff who administer EHCPs should be held to account for any non-compliance of their statutory duty to meet the needs of children with cerebral palsy in a timely and effective manner. Where incompetent or ineffective practice exists, training and protocols should be put in place at the earliest possible opportunity.

      Schools should be held accountable and required to demonstrate how well they support the progress and inclusion of ALL children within the setting, with regulatory bodies being required to seek feedback on this from parents, carers and the pupils/students themselves.

November 2024

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