Our objectives for today

1. Special Educational Needs and Disability (SEND) Project NetworkThursday 6 February 2013National Council for Voluntary Organisations

2. Our objectives for today

3. The SEND reformsJames CooperPublic Affairs and Policy OfficerTogether for Short Lives

4. The SEND reforms • The Government’s vision for reform • Progress to date • The implications for children’s palliative care

5. The Government's vision for reform

6. Problem with the current system “It’s a minefield and you get frightened going through it. Services don’t join up and people don’t explain things to you. They don’t tell you what all the services actually do. By the time I had made it all fit together my child had passed away - that makes me sad that he could have had so much more out of life”.. Recent Square Table participant: parent of a child who need palliative care

7. The proposals for reform • New requirement for local authorities, health and care services to commission services jointly, to ensure that the needs of disabled children and young people and those with SEN are met. • Local authorities to publish a clear, transparent ‘local offer’ of services, so parents and young people can understand what is available; developed with parents and young people. • More streamlined assessment process, which integrates education, health and care services, and involves children and young people and their families. Department for Education: Support and aspiration: A new approach to special educational needs and disability - Progress and next steps. http://www.education.gov.uk/childrenandyoungpeople/send/b0075291/green-paper

8. The proposals for reform (continued) • New 0-25 Education, Health and Care Plan, replacing the current system of Statements and Learning Difficulty Assessments, which reflects the child or young person’s aspirations for the future, as well as their current needs. • Option of a personal budget for parents of children with a Plan and young people with a Plan, extending choice and control over their support. • New statutory protections for young people aged 16-25 in further education and a stronger focus on preparing for adulthood. Department for Education: Support and aspiration: A new approach to special educational needs and disability - Progress and next steps. http://www.education.gov.uk/childrenandyoungpeople/send/b0075291/green-paper

9. The proposals for reform (continued) • Academies, Free Schools, Further Education and Sixth Form colleges, independent special schools / colleges can be named in EHC Plans. • Involvement of children, young people and parents in developing assessments and local offers. • Key strands: • Parent participation. • Preparing for adulthood. • Key working . Department for Education: Support and aspiration: A new approach to special educational needs and disability - Progress and next steps. http://www.education.gov.uk/childrenandyoungpeople/send/b0075291/green-paper

10. Our position on the Children and Families Bill

11. Our position on the Bill We strongly support the aspirations of the reforms; however, we retain a number of reservations about the Children and Families Bill, which will enshrine the reforms in law: • EHC Plans should be made available to all disabled children, including those without a statement of SEN - 25% of disabled children do not have an SEN statement . • Without this, children who need palliative care but who are able to attend mainstream school will not benefit from the reforms - e.g. children with cystic fibrosis, liver failure and cancer. http://www.publications.parliament.uk/pa/bills/cbill/2012-2013/0131/cbill_2012-20130131_en_1.htm

12. Our position on the Bill • The entitlement to Education, Health and Care Plans (EHCPs) should extend to all disabled 18 to 25 year olds, including those no longer in education. http://www.publications.parliament.uk/pa/bills/cbill/2012-2013/0131/cbill_2012-20130131_en_1.htm

13. The SEND pathfinder programme

14. The pathfinders Since 2011, 20 pathfinders, involving 31 local authorities and health bodies, have been working towards the following objectives: • Developing a new birth to 25 assessment process and a EHCP. • Exploring how the voluntary and community sectors can introduce more independence to the process. • Ensuring that children and young people, their parents and families are fully engaged. • Ensuring that schools and colleges are fully engaged. http://www.sendpathfinder.co.uk/pathfinder/

15. The pathfinders (continued) • Choice, control and outcomes for children and young people are encouraged through the use of personal budgets and direct payments. http://www.sendpathfinder.co.uk/pathfinder/

16. The pathfinder sites http://www.sendpathfinder.co.uk/pathfinder/

17. Progress to date

18. Developments to date • September 2011: Government Green Paper published; pathfinders planned and initiated. • Spring 2012: Pathfinders - families recruited and new testing of new approaches begun; DfE publishes Support and aspiration: Progress and next steps. • September 2012: Draft SEND clauses published for pre-legislative scrutiny by Education Select Committee. • December 2012: Pre-legislative scrutiny report published.

19. Developments to date • January - June 2013: House of Commons scrutiny of Bill; Government amends Bill to include stronger duties on the NHS to deliver the single assessments and EHCPs • March 2013: Interim pathfinder report published; new draft SEN code of practice and regulations published. • June 2013 – present: House of Lords scrutiny of Bill; more Government amendments: • new duties on all types of state schools (excluding early years providers) to support pupils who have medical conditions.

20. Developments to date • amendments to include all disabled children and young people within the scope of the Bill - including in local offers and joint commissioning duties. • September 2013: Draft SEN Code of Practice and regulations published for consultation: • local agencies must include children’s palliative care as part of their SEN planning. • local offers must include information about healthcare provision for children and young people with SEN; this should include palliative and respite care and other provision for children with complex health needs.

21. Developments to date • December 2013: DfE publishes implementation pack for local authorities; Mott Macdonald publishes Pathfinder information packs. • February 2014: more DfE amendments to strengthen rights of parent carers - including access to automatic assessments; consultation on statutory guidance for supporting pupils at school with medical conditions: • where pupils have life threatening conditions, specific transport healthcare plans should be carried on vehicles. • governing bodies should consider that conditions that require school support may be life-threatening.

22. Developments to date • February 2014 (continued) -DfE have also committed to: • clarifying local authorities’ duties in delivering social care elements of EHC Plans • review complaints and appeals in relation to those with EHC Plans; pilots will examine how SEND Tribunal can link up complaints and appeals processes.

23. The implications for children’s palliative care (CPC)

24. Implications for CPC Opportunities • More integrated assessments and services for children, young people and families. • Opportunities for services to be included in local offers and CPC recognised in Joint Strategic Needs Assessments - enhanced by code of practice. • More chance of NHS and local authorities jointly commissioning CPC services. • Potential for better links with schools and other education providers.

25. Implications for CPC Threats • Potential riskto prospects of being commissioned if not included in local offers. • Services may become less attractive to families if they are not included in the local offers. • Personal budgets: changes to funding streams for services; increased competition from other providers; difficult conversations with families.

26. Next steps

27. Next steps: England-wide • Early 2014: Bill will receive Royal Assent . • April 2014: The SEND regulations, statutory guidance and transitional arrangements will be published . • September 2014: legislation will comes into force; children and young people with existing SEN statements and LDAs will begin to transfer to the new system. • Until March 2015: pathfinder programme will continues. • Also during 2014: public consultation on statutory guidance on new duties on schools to support pupils who have medical conditions.

28. Next steps: local strategy Local milestones: • Until March 2014: each local area raising awareness of reforms and appointing local lead for SEND reform. • January - August 2014: planning service delivery and preparing for implementation. Local transition plan should be published in June. • September 2014: local offer published; newly referred children and young people assessed under new system and given EHC plan; those already with statements and LDAs begin to transfer to the new system; personal budgets available.

29. Next steps: local services Now - September 2014 : • Joint commissioning plans • The local offer • Processes for assessment, planning and EHC plans • Services to be provided through personal budgets • Planning provision of local information, advice and support (with users) • Reviewing and developing local mediation and disagreement resolution arrangements • Engaging local partners, including further education and training providers.

30. Next steps: local services September 2014 onwards: • Joint commissioning underway locally - needs assessment, planning, market development, collaboration with families. • Regular review and raising awareness of local offer • Annual reviews of EHC plans. • Transfer of children and young people with existing statements and Learning Difficulty Assessments. • Review service budgets to offer increased personal budgets - and information, advice and support available to families.

31. SEND Project – improving engagement with children's palliative careAndrew Fletcher6 February 2014

32. SEND reform: evaluation • Good progress made by many Pathfinders in many areas but: • Poor representation from health agencies • Uncertainty about the role the voluntary sector could and should play • Significant opportunities to add value as: • An England wide network of providers • Health interventions, often in complex care • Delivered largely through the voluntary and community sector

33. The SEND project

34. Project objectives • Children and young people with life-limiting and life-threatening conditions are included in Pathfinder testing and benefitting from greater integration • Children’s hospice and palliative care providers play an active role in supporting the Pathfinders and in the delivery of the reforms. • Schools and health and social care services are better equipped to support children with life-limiting conditions

35. Project activity • Work with Pathfinders to encourage inclusion of children with life-limiting and life-threatening conditions and the services that support them • Develop resources, workshops and tools to help voluntary children’s hospice and palliative care services to engage with local authority and health commissioners and support families in using personal budgets. • Strengthen understanding of children’s palliative care across health, social care and education, including schools.

36. Project activity • Support engagement with young people who need palliative care so that they have a voice in the development of their personalised plans • Identify and disseminate examples of good practice via case studies, web hub and e-newsletter • Support the children’s palliative care sector in non-Pathfinder areas in readiness for the future roll out of new SEND system

37. For children and families • Greater understanding of their needs in Pathfinder areas • More are included in the testing of the reforms • Improved support within schools as a result of schools resources • They are better supported to understand and use personal health budgets • In the longer term, children’s palliative care is embedded in Local Offers

38. For providers • Build new relationships with local authorities, which will play an increasing role in planning and commissioning. • Position services as key providers of specialist support locally • Better understand and influence how joint commissioning might work in the future. • Be better prepared for the introduction of Personal Budgets, including their extension into health • Improve links with schools and other agencies • Help to embed children’s palliative care services in the Local Offer.

39. Progress to date • Established the project, including the steering group with representatives from families, providers and national partners • Appointed the Centre for Children and Families Applied Research at Coventry University to evaluate the project • Launched a bi-monthly e-newsletter for the children’s palliative care sector on the reform and the project • Launched dedicated web space www.togetherforshortlives.org.uk/sendproject • Mapped children’s palliative care services within the pathfinder areas and secured their engagement

40. Progress to date • Presented to Pathfinder network, organised by National delivery agency Mott Macdonald • Approached Pathfinders individually to seek an initial meeting with local services to discuss the project • Secured 12 introductory engagement meetings with Pathfinder areas and local services with a further 5 planned • Delivered Personal Budgets workshop for voluntary providers in November and shared briefing from it • Scoped a toolkit for providers to influence their local authorities and Pathfinders • Exploring how to support non-Pathfinder areas

41. Coming up • Ongoing 1:1 engagement with Pathfinders (ongoing) • Rolling out the local engagement resource for all providers of children’s palliative providers (February) • Resources for providers to support them to use personal budgets (March) • National Network meetings of local services to share information about the reform and the project • Regional events for schools and local agencies on children’s palliative care (April-July 14) • Resources for schools to better support children who need palliative care (Oct 14)

42. Evaluating the project • Coventry University independently evaluating the project • Baseline surveys of services, pathfinders and non-pathfinders • Evaluation of resources, events and workshops • Interim evaluation in April 2014 • Further evaluation surveys in 2014 • Final evaluation in March 2015

43. How you can get involved • Share information about the project within your service and wider network • Are there examples of good partnership working between health, education and social care in your area? Share them with us for the web hub and newsletter • Support us by participating in Pathfinder engagement work locally • Attend regional network events and share your experience

44. Contact • Andrew Fletcher • Director of External Affairs • Together for Short Lives • Tel: 0117 9102 464 • Email: andrew.fletcher@togetherforshortlives.org.uk • Visit: www.togetherforshortlives.org.uk/sendproject

45. Any questions?

46. Integration • What are the opportunities for local services to be able to better integrate services for children who need palliative care? • What are the barriers?