1. Care co-ordination network UK CCNUK including key working in England and supporting Every Disabled Child Matters campaign Cath Walder development co-ordinator England

2. Care Co-ordination Network UK CCNUK is a networking organisation promoting key working for disabled children and their families in England, Northern Ireland, Scotland and Wales. CCNUK is an independent registered charity based at Tower House, Fishergate, York.

3. history Evidence based research from1999 at a Wrexham conference 2000 JRF convene steering group and in 2001 worker appointed 2002 charitable status and trustees appointed 2006 company limited by guarantee with charitable status 2006 independence from University of York

4. CCNUK mission work in partnership with disabled children, their families and professionals, to ensure that all families throughout the UK have access to high quality care co-ordination or key worker services

5. director Scotland development worker Wales administrator Wales development co-ordinator Wales development worker admin manager England development co-ordinator England development worker England clerical assistant staff

6. CCNUK definition key working is a service, involving two or more agencies, that provides disabled children and young people and their families with a system whereby services from different agencies are co-ordinated. It encompasses individual tailoring of services based on assessment of need, inter- agency collaboration at strategic and practice levels, and a named key worker for the child and family giving a single point of contact. Families with disabled children should only have a key worker if they want one.

7. CCNUK definition a key worker is both a source of support for disabled children and young people and their families and a link by which other services are accessed and used effectively. Key workers have responsibility for working together with the family and with professionals from services and for ensuring delivery of an interagency care plan for the child and family.

8. policy context Every child matters – five outcomes (BSEMA) Early Support Programme Children’s NSF – disabled children key workers (standard 5.8) Development of children’s trusts and children’s centres Improving the life chances of disabled people Prime Minister’s strategy unit January 2005 Aiming high for disabled children (May 2007) Aiming high for disabled children – National Core Offer (May 2008 2. Assessment)

9. Aiming High for disabled children access and empowerment responsive services and timely support improving quality and capacity the context the funding making the system work better The vision – all families with disabled children to have the support they need to live ordinary family lives, as a matter of course

10. national core offer CCNUK key working - where does this fit? 2.assessment disabled children and young people receive child- centred multi-agency co-ordinated services from the point of referral through identification and assessment to delivery

11. five elements grouped under three headings information and transparency assessment participation and feedback

13. standards organisational standards practice standards including: assessment planning review

14. key working in England where are we now?

15. development work England Department of Children Schools and Families designing a key worker standards training module regional meetings government offices networking working in partnership with other sector organisations parent partnership free membership poster

16. care co-ordination and key working in England - the facts key working is requested by government policy 150 local authorities in England 73presently signed up to the EDCM charter 150 primary care trusts 52 presently signed up to the EDCM charter actual operational key worker services are unknown

17. Every Disabled Child Matters CCNUK are members and active supporters of the EDCM campaign

18. What is Every Disabled Child Matters? Campaign to get rights and justice for every disabled child Run by: – Contact a Family – Council for Disabled Children – Mencap – Special Education Consortium

19. Why was a campaign needed? Disabled children too low on the agenda ECM outcomes not being delivered for disabled children Need for new rights to services and support Opportunity to influence the Comprehensive Spending Review

20. 20 The current situation Poverty – higher rates than other families Exclusion – at least 7 times more likely Family breakdown – 8 in 10 at breaking point

21. The changing population Since 1975… children 0-16 are the fastest growing group of disabled people in the UK (from 476,000 in 1975 to 772,000 in 2002) This represents an increase of 62%. [Improving Life Chances Report, 2005]

22. CSCI report - March 2007 'Services remain variable and in some areas, very limited and insufficiently joined up. Parents… are dissatisfied with the overall experience. Despite the principles of Every Child Matters, they feel there is a lack of information, too much duplication of assessments and services, access is difficult and there are high thresholds to social care support. Parents and young people say they do not get enough respite and what is provided is often inappropriate.’

23. EDCM wants… 1 – New rights 2 – New resources 3 – New priority – (a) nationally and (b) locally

24. Highlights to date New rights – CYP Act 2008 – duty to provide short breaks New resources – AHDC - £430m ringfenced plus millions for NHS New priority – national indicator and EDCM charter sign-up

25. If I could change one thing… Disabled children and young people want: 1) Things to do and places to go 2) To be respected 3) A good education Parents want: 1) To not have to fight for support 2) To be included in their communities 3) To find educational provision that meets their child’s needs

26. 29,000 supporters signed up online… Please sign up and ask everyone you know to do the same! www.edcm.org.uk

27. Thanks and questions Cath Walder, England development co-ordinator e: england@ccnuk.org.uk  t: 01904 567314 Contact EDCM Laura Courtney, Campaign Manager Louise Franklin, Policy Manager Pam Shaw, Campaign Officer e: pamela@edcm.org.uk  t: 020 7843 6318