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

2. Our objectives for today

3. The SEND reforms
James Cooper
Public Affairs and
Policy Officer
Together 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 risk to 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 care
Andrew Fletcher
6 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
1. Children and young people with life-limiting and life-
threatening conditions are included in Pathfinder testing
and benefitting from greater integration
2. Children’s hospice and palliative care providers play an
active role in supporting the Pathfinders and in the
delivery of the reforms.
3. 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?