Working in partnership with families of children with SEN

1. Working in partnership with families of children with SEN Ron Babbage, Emily Heywood and Ella Livermore St. John’s School.

2. Some facts and figures Contact A Family estimated the number of children who are disabled (as defined by the DDA) stood at 700,000- this was an increase of 62% between 1975 and 2002 Blackburn et al estimated that by 2010 the figure had increased to 950,000 or by a further 36% since 2002 98% of all these children live at home supported by their families- a significant and increasing number of families now include a disabled child and live with the impact of this in their lives (Heywood 2010)

3. Nuffield Bioethics Committee 2008 ‘At present we note the inconsistency of investing heavily in high-cost medical interventions to ensure survival of children with the most complex needs and then discharging a growing population of children with major difficulties without the proper investment in an infrastructure to support them and most importantly their families in addressing their often very complex and long-term additional needs.’

4. Family experience • marital problems and implications • lack of ‘shared’ activities • differential parental attention • sibling- lack of sleep, poor self-esteem and educational attainment, behaviour problems, bullying, more likely to become young carers • disabled are 10% of CLA population whilst remaining 5% of total pupil population • mental health issues- 76% of families suffer stress or depression (twice that of families without disability)

5. School experience 15% of pupils in England (1.25 million) have SEN about 93,000 pupils are educated in special schools- of these 66% are boys and 66% are eligible for FSMs about 300 of these pupils are permanently excluded from special schools each year- they are 9 times more likely to be excluded in mainstream education

6. Lamb Report (2010) key messages Families need support of professionals who are: Well informed, able to help families understand what they need to know at any particular stage in their disabled child’s development and, where necessary, to interpret the information given; Honest, clear and open about the limits of their knowledge and prepared to seek further guidance where necessary; Trustworthy and recognise that information flows both ways- families have expert knowledge of the child but shared communication is often poor.

7. Personal stories Emily and Tom Ella and Kane

8. Parents of Disabled Children - Their "Today"

9. Principles to practice… we must… • Recognise personal and emotional investment of family members • Refrain from making assumptions about the learning context of home • Respect the validity of differing perspectives/reconcile different views • Remain professional yet approachable

10. Ponder points Is your school policy called ‘Partnership with Parents’? What adjustments could you make to ensure it becomes ‘Partnership with Families’? How would you restyle aspects of your practice to ensure it reflects this adjustment of policy (e.g. newsletters addressed to families)?

11. Ponder points If you have a ‘Parents room’ is that its label? Is that what you mean? Are siblings and grandparents allowed in this room? Does it need re-labelling? Have you ever had an event specifically for siblings or dads? Any good suggestions?