1. Common themes across Aiming High for Disabled Children and Better Care Better Lives Dr Lisa Kauffmann Consultant Community Paediatrician Clinical Director Children’s Services Manchester PCT

2. You have heard about the national context. I would like to talk about the principles which underpin the services we plan, develop and deliver –By looking at the common themes in AHDC and BCBL

3. The Vision “Every child and young person with a life-limiting or life-threatening condition will have equitable access to high-quality, family-centred, sustainable care and support, with services provided in a setting of choice, according to the child and family’s wishes” BCBL

4. And that: Care will be: built around a philosophy of ‘children first’ – adopting a needs-led, problem-solving approach rather than relying on diagnostic labels, enabling families to pursue ordinary lives and see their children achieve their full potential

5. Aiming High for Disabled Children Published by DFES and HM treasury in May 2007 –The outcome of the government Disabled Children Review. –Stated in the introduction is “Our long- term goal is to transform the life chances of disabled children”.

6. Better Care Better Lives Published by DH in Feb. 2008 Based on the findings of the Independent Review of Children’s Palliative Care Services, also published in May 07

7. Why look for common themes? “Many children who have palliative care needs are disabled and some children who are disabled have palliative care needs” (AHDC) “The needs of children and young people with life-limiting and life-threatening conditions are, on a day-to-day basis, often the same as those who have disabilities or other complex health needs” (Independent review)

8. Needs of children with LTI and LLI: High-quality, accessible, responsive services, matched to individual need, focused on improving life experience. And crisis support and end-of-life care when an acute illness or incident, a deterioration in the underlying condition or rapid symptom changes occur

9. Government has guided us to look at these together The Independent Review of Children’s Palliative Care Services and Aiming High for Disabled Children have given a renewed focus on the needs of these children, as well as informing the 2007 Comprehensive Spending Review (CSR). It is now a crucial time in the debate as key stakeholders and the Government come together to discuss ways to improve services for all disabled children and their families, including those with palliative care needs”

10. BCBL identifies the challenges in providing most effective care for families: the change in the profile of children with life-limiting or life-threatening conditions over the last 20 years poor co-ordination of public services across the statutory and voluntary sectors little acknowledgement of the need for earlier interventions and assessments insufficient investment in local prevention strategies or timely referral to specialist services high thresholds/eligibility criteria for accessing existing palliative care services

11. Challenges continued: insufficient prioritisation for children with life- limiting or life-threatening conditions, and short- term funding lack of transparency/agreement between budget holders on who will fund which aspect of care and support lack of capability, capacity and equity within universal services to meet many of the needs of these children lack of information, consultation and empowerment for children with life-limiting or life-threatening conditions and their families the need for a range of specialist short breaks and better coordinated specialist support

12. Empowerment of children and families Child and family participation in design and running of services Standards on provision of information for children and families about services Transparency in what is on offer, and in decision making Integrated assessment –across universal and specialist services, and across agencies Clear route to give feedback –via complaints

13. Access to services Mainstream –Education, health, leisure, early years support/childcare Universal services –GP/health visitors, Education, Play, Leisure Targeted Specialist

14. Targeted services Specialist health services: –Community/general paediatrician –Community nursing/‘Diana’ team –Physiotherapy/OT/SALT –Dietetics –CAMHS Social care Respite/short breaks Wheelchairs/equipment Financial assistance Housing adaptations

15. Specialist services Tertiary centres Palliative care team Hospice/hospice at home Macmillan Pain specialists Neuro-disability End-of-life/ bereavement care

16. Information about need Information about need AHDC states: Local Authorities and PCTs will improve their data collection for this group national and local agencies will work together to develop more coordinated data sets BCBL Goal: Better data collection to enable evidence-based decision making and commissioning at a local level.

17. Possible data sources Possible data sources Local public health data; The Child Health Mapping Project; The Children in Need census; Disabled children’s registers; Special educational needs partnership information Mortality and prevalence data (national and local) And tools: –Association for Children’s Palliative Care/ Association of Children’s Hospices Mapping Programme –National Service Framework (NSF) Standard 8 Audit Tool

18. Services which are responsive to need and timely Emphasis on early intervention and early support Importance of transition and investment in transition services

19. Improved capacity and quality Short breaks Childcare Equipment

20. Short breaks 1.Be based on a needs assessment of the local disabled child population 2.Take into account the voice of disabled children young people and families (participation and feedback) 3.Offer a significantly greater volume of short break provision 4.Use fair understandable and transparent eligibility criteria that enable short breaks to be used as a preventative service which do not restrict provision to those threatened by family breakdown or other points of crisis 5.Offer a wide range of reliable local short break provision, tailored to families needs

21. Range of Short breaks Tailored to families needs including: support for disabled children and young people in accessing activities in universal settings delivered through: - the support of a befriending sitting or sessional service - measures that build the skills of the universal service providers - measures specific to severely disabled children that are undertaken to meet their physical access requirements in universal settings. overnight breaks care available in both the child’s own home and elsewhere significant breaks during the day with care available in the child’s own home and elsewhere

22. Short breaks cond 6.Provide positive experiences for children 7.Provide culturally appropriate provision that meets racial cultural linguistic and religious needs 8.Ensure that provision is available on a planned and regular basis and at the times when families and young people need breaks 9.Provide fit for purpose and age appropriate provision which ensures the following groups are not disadvantages in accessing short breaks:

23. Identified groups at risk of disadvantage in short breaks Children and young people with ASD Children and young people with complex health needs which includes those with disability and life limiting conditions who have reached the palliative care stage of their life. Children and young people aged 11+ with moving and handling needs that will require equipment and adaptations. Children and young people where challenging behaviour is associated with other impairments (e.g. severe learning disability). Young people 14+.

24. Short breaks 10.Utilise the service provider that offers the best possible combination of skills and experience to deliver services of the highest possible quality to meet individual needs at the most efficient cost 11.Promote information about available provision to the public including details of eligibility – including threshold criteria- and routes to accessing the service (information and transparency)

25. Short Breaks Government published readiness criteria which is expects LAs to have in place by March.

26. Workforce development –In AHDC focusing on mainstream: “ Government will commission the Children’s Workforce Development Council to research the skills and behaviours required by the workforce to make universal services more accessible for disabled children and to identify gaps”.

27. Partnership working –“Partnership working is crucial. It is a core principle running through a number of key policies and priorities – the Every Child Matters: Change for Children agenda, the National Service Framework for Children, Young People and Maternity Services, Making it Better for Children and Young People, Aiming High for Disabled Children and The Children’s Plan.”

28. Performance management Performance measures: to support providers and commissioners to focus on government priorities –National requirements: legislation such as the Children Act 1989 and Disability Discrimination Act (DDA) 1995, and the DDA 2005 guidance, such as Standard 8 of the NSF national performance indicators and targets such as PSA target 12 Indicator 5: Improving services for disabled children

29. PSA target 12, indicator 5 This is a new indicator based on parents’ experience of services and the ‘core offer’ principles made in Aiming High for Disabled Children, which are: –clear information; –transparent eligibility criteria and process for accessing services; –multi-agency assessment; –participation in shaping local services –clear and meaningful feedback to complaints

30. Performance management cond –Examples of locally developed measures: Local areas measuring the proportion of: parents/carers of children with severe and complex disabilities with access to information about services children with complex needs receiving multi-agency assessments who access services to meet their identified needs children with complex needs accessing mainstream education, inclusive play and leisure opportunities disabled children participating in person centred transition reviews disabled children accessing more flexible and individual services through direct payments disabled children accessing short break services disabled children in inclusive settings.

31. Conclusion Great opportunity to capitalise on government departments agreeing that children with LL and LTIs are priority Our responsibility to ensure that what we use the investment to commission and provide meets the families needs