Children and Families Bill

Memorandum submitted by British Academy of Childhood Disability (BACD) (CF 27)

1. The British Academy of Childhood Disability (BACD) membership is comprised of professionals working in the field of childhood disability, including consultant neurodisability paediatrics, specialist nursing, speech and language therapy, physiotherapy, occupational therapy, psychology and education. The comments below were drawn up with input from BACD members across all constituent disciplines.

2. BACD members consider the Bill replicates the faults in the current SEN system. Social care and health still do not have a statutory duty to either assess or make provision for children with SEN and neither to parents and children have a right to redress for lack of health or social care provision through the Tribunal system.

3. The proposed amendment to provide a new legal duty on clinical commissioning groups to secure services in EHC plans for children and young adults is welcomed but there are clear cost implications for health, so we hope government will provide additional funds. BACD wait to see the detailed amendment. Indeed the promised amendment on duties for clinical commissioning groups should be widened at Clause 26 to also set out set out clear statutory links between Children’s Trust arrangements, Health and Wellbeing Board duties, clinical commissioning groups and joint commissioning arrangements.

4. BACD members involved in the SEN Pathfinders agree that parents are positive about the new approach but it has had negative implications for health professional s. BACD note that although the March 2013 Programme Report confirms that 65 families with completed EHC plans were positive about the process and the end result but there is no mention of the time taken to produce EHC plans.

5. Paediatricians report that team around child meetings may take up to a whole morning to discuss one child. The new system is inefficient taking excessive efforts to produce EHC plans for the small number of children in the pilot. When the system is scaled up to all those requiring EHC plans the time requirement for health will become impossible within reasonable timescales.

6. From a SEN paediatrician's point of view, the time cannot be provided within current staffing structures and regimes, the assessment process will therefore need to be recommissioned, hopefully jointly.

7. Clause 21(5) appears to imply that therapies are likely to be special educational provision. The clause goes further than current case law which does not use ‘wholly or mainly’ but sets out a ‘spectrum’ or range of provision from the purely medical to the purely educational, with a determination being made on individual facts.

8. BACD specialist therapists advise that speech and language therapy can never be wholly or even mainly an educational need, it can never be just concerned with accessing the curriculum as communication is part of life and cannot be compartmentalised in that way!

9. In some cases where children are non-verbal, augmentative systems such as signs, symbols or even technology may be very important for accessing the curriculum, especially for children who are deaf or have a physical problem such as cerebral palsy. However they would also need to use these systems for daily living and not just at school.

10. The only example which might be considered ‘mainly educational’ would be a child with a specific language disorder where the teachers or TAs need to be 'taught' to speak in very simple sentence structures without using ambiguous or abstract language so that the child understands what he needs to do. However it would not just be therapy for the child but also training school staff in communication techniques.

11. Similarly children requiring specialist equipment such as standing frames, walking aids and wheelchairs will need such equipment in order to access curriculum, but also require the same equipment for all movement and functional daily living skills. Thus physiotherapy and occupati onal therapy for such children is neither ‘wholly or mainly educational but could be considered ‘partly’ educational.

12. Currently management of NHS therapists always lies within health. BACD therapists state that many local teams are struggling to provide therapy and therefore contribute advice for statements in vague terms not specifying exactly the amount of time using terms such as ‘access to regular physiotherapy review’, ‘will need to review therapy needs as child moves up the school’ and so on, although they are pressed for more specific guidance. Despite being mentioned on the statement the therapy teams can agree that the child needs therapy but still not provide it due to lack of resources. This leads to confusion from parents and the education authority and often results in litigation or a Tribunal. Whether in future such provision is considered ‘wholly’ ‘mainly’ or ‘partly’ educational there will continue to be a lack of specialist therapists.

13. Clause 22 needs to be amplified. Ensuring timely and appropriate identification requires robust data systems. With the fragmentation of the education system through the increase of independent Academies it may become impossible for LAs to implement this clause. This fragmentation of information will be mirrored by health information being held by GPs.

14. Clause 30 - If the provision outlined in a local authority "Local Offer" is not delivered it appears it is not enforceable against the LA or a school though it appears that there may now be statutory duty on clinical commissioning groups. The clause needs to be amended so that all parties are legally required to deliver.

15. Clause 31 only requires inter-agency co-operation where a child has, or is in the process of assessment for, an EHC plan. There appears to be no duty to co-operate for children with less severe or complex ‘school-based’ SEN. Health professionals are needed to work with and support children with such ‘lesser’ needs, this must be recognised in the Bill.

16. The proposed Clause 33 means that children only receive the protection of an EHC Plan if they have education, health and social care needs, (a triple lock) meaning only those with the most severe and complex needs will have guaranteed provision; this is a retrograde step and most unwelcome. There must be a lower entry ‘threshold’ to access a statutory plan. BACD back the ‘theory’ of statutory joint commissioning of assessment and provision of services, including shared plans, skills transfer and equipment for all those with disability (still defined as in 1996) between Education, Health and Social Care with the child and family at the centre. But this Bill does less for such children than the existing arrangements because it appears that so few -comparatively- will reach EHC plan status.

17. Those children requiring equipment, emergency health care plans without SEN, as well as all those with SEN (some without health needs) all have a need for joint working and a joint plan. BACD believe that 'silo' considerations will continue; whilst what is really required is making and delivering the plan at home as well as school and for the wider range of children with SEN and/or disabilities.

18. We are concerned that there is a complete lack of information about timetables for assessment or production of the EHC Plan or about those professionals who will need to contribute to the assessment. There is also no information about the structure and content of EHC Plans. Without details it is difficult to make any constructive critique of the legislative proposals. It is therefore regrettable that Regulations will not be available for public comment during the Commons Committee Stage

19. BACD welcome the extension of statutory provision up to 25 years but are concerned that there are often no specialist services within adult services to transition young people with SEN and disabilities on to at age 16. Where specialist adult health services do exist, they are likely to be sparse compared to services within paediatrics.

20. A further concern is at 19 years plus. Many special schools and academies plan to extend their remit to cater for older young people. BACD believe that where there are not robust health care arrangements for this group of older young people, there will be pressure on paediatricians, therapists and specialist children’s nurses to retain the older young people on until they are 25. BACD recommend that appropriate age-related health provision must be commissioned .

21. The Health and Social Care Act (2012) sets out a new responsibility for NICE to develop quality standards and guidance for the social care sector, including adults and children. One of the first topics for this new work programme is the Transition between child and adult services. BACD believe that this work needs to extend to health commissioners and providers.

22. BACD members cannot yet see how the removal of the distinction between School Action and School Action Plus and the creation of a single school based category of SEN will help children and young people. Unless parents and professionals are convinced that the single school based category delivers successfully for the individual child, they will be concerned that children who require additional or different provision may fail to get it. Such concerns could lead to pressure for greater numbers of the ‘EHC’ Plan than Government anticipate; and indeed therefore for greater numbers of EHC plans than the current number of statements.

23. BACD are pleased that Clause 66 now requires the Code of P ractice to be laid before Parliament; however this should not be amended to allow for the affirmative resolution procedure thus allowing debate in both Houses. Parents and professionals rely on the current Code’s guidance and hence changes to the Code must improve outcomes, provide a clear way forward and be set out with clarity and transparency.

24. The Bill is going forward against a backdrop of deep cuts to the all budgets and services required by children and young people with SEN and disabilities at the same time as schools and colleges adapt to a totally new funding system and the NHS changes radically. Without adequate resourcing this Bill will not improve outcomes for SEN and disabled young people.

March 2013

Prepared 15th March 2013