1. Issues for independent school nursing in a changing population Christine Lenehan Director Council for Disabled Children

2. The Council for Disabled Children Raise awareness of the needs of children with disabilities and their families Promote the participation of children with disability and their families in all decision making about their lives Contribute to the development of policy and practice in central and local government Provide an independent forum for the discussion and resolution of issues relating to children and disability.

3. This presentation will.. Look at changing population issues Look at children’s rights Cover key issues Look at sources of support

4. A changing population Using the broad DDA definition of disability, it is estimated that there are around 11 million disabled adults and 700,000 disabled children in the UK (about 7% of the population aged 0-16). Since 1975, children 0-16 have formed 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%. [Prime Minister’s Strategy Unit Report, 2004]

5. More evidence of change More children with complex and significant needs: medical advances improved survival rates One study: 11% increase in paediatric artificial feeding at home 2001 to 2002 associated with home delivery and support services.

6. And more Increased likelihood diagnosis and/or prevalence of: Autistic Spectrum Disorders (ASD) mental health issues in young children Medical Research Council: ASD: 60 in 10,000 under 8s narrowly-defined ASD: 10-30 in 10,000 These estimates “make autism spectrum disorders far more common than was previously recognised.”

7. My rights as a child are To have someone I love with me wherever possible To be told what is happening to me To ask questions and be given answers I understand To not be alone if I am sad To be able to play even if I have to stay in bed

8. My rights contd That people are honest with me That the people who care for me understand children’s needs That I am safe, that my body is my body That I am respected with feelings and rights of my own That my well being is the most important thing and I am part of a family Mankua health NZ.listening,hearing and responding DH

9. 5 Outcomes for Disabled Children  Be Healthy  Stay Safe  Enjoy and achieve  Make a positive contribution  Achieve economic well-being

10. Be healthy/ Stay Safe Managing Medicines Including Me Guidance for safeguarding boards Review of Don’t suffer in silence Issues re emotional well being

11. Enjoy and Achieve SEN select Committee review Implementing the DDA in Schools and early years settings Work with TDA

12. Make a positive contribution DDA public sector duty Youth matters Transition guidance Participation

13. Achieve economic well being Extended Schools/Children’s Centres Work with Treasury

15. Final thoughts School nurses offer an essential service,,even more so for children living away from home The biggest issues for disabled children are a lack of knowledge about specialist support and critically a lack of recognition about their needs for emotional support You can change that