1. Supporting Independent Living: Disabled Children and their Families

2. Overview What do we know about disabled children and their families? Disabled families Disabled pregnancies and babies Disabled children and abuse Isolation and inclusion Inclusive education

3. UN Convention on the Rights of the Child Article 23 Children with disability A child with a disability has the right to live a full and decent life with dignity and independence, and to play an active part in the community. Governments must do all they can to provide support to disabled children Select one article Q. What are the main barriers to achievements of rights for disabled children? To what extent are these barriers: biological differences, cultural values or economics (or other)

4. Disabled families Parenting takes place in and through complex relationships...parenting disabled children troubles orthodox notions of autonomy and ability...Existing social hierarchies...have inevitable consequences for access to resources and support for the family...It is essential to remain aware of material, cultural and discursive factors which will become wrapped up in the act of parenting. (Goodley & McLaughlin 2008:9-11)

5. Disabled families As dysfunctional, as burden, medicalised and individualised Usually viewed through the perspective of parents, families, professionals rather than disabled children Impact on wider family – some recognition in disability by association (Equality Act 2010) and carer’s legislation.

6. Blackburn et al (2010) Family Resources Survey 2004-5 7.3% of children DDA disabled (952,741) 2/3 live in two parent families but proportion in single-parent families higher than NDF ½ had a disabled parent (compared to 1/5) More likely to live in rented accommodation and with fewer rooms Highest prevalence in poorest income families Household incomes lower on average Higher levels of debt and social deprivation Greater dependency on social security benefits and face additional costs

7. Poverty There is a two-way relationship between disability and poverty in childhood. Disabled children are among the most likely to experience poverty and poor children are more likely to become disabled than those who are better off. ….It is well established that persistent poverty during childhood has significant scarring effects on life changes but also impacts on childhood experiences (IPPR 2007:6)

8. Poverty Additional costs ‘the extra costs of disability are very large when expressed as a share of household income.’ (Stapleton et al 2008:2) Impact of low income/ multiple deprivation additional pressures/challenges for disabled families.

9. Disabled pregnancies and babies

10. Laurence Clark: Report for Newsnight Abortion and disability 27.10.04 http://www.youtube.com/watch?v =VYjdVH-zFDU http://www.youtube.com/watch?v =VYjdVH-zFDU

11. Consider: Section 1(1)d of the UK's 1967 Abortion Act allowed termination of a pregnancy at any time if there was a significant risk of the baby being born with a ‘significant handicap’. http://www.4thought.tv/themes/should-we-be-allowed-to-design-our-babies/joanna-jepson What are the implications of our current abortion laws? How will this affect how disabled people feel about themselves?

12. What concerns might Jo and Ben have and what might they consider their options to be? From a social model perspective how would you respond to Jo and Ben’s concerns? http://www.4thought.tv/themes/should-we-be-allowed-to- design-our-babies/nishad-gudhka?autoplay=true Case study: Jo and Ben are expecting their first child. They have been told there is a significant likelihood their baby will have Down’s Syndrome.

13. Disabled Children and Child Protection Limited evidence base and attention policy and practice UK) Are disabled children more likely to be abuse? Disability is disproportionally associated with all forms of child abuse, especially neglect (Stalker & McArthur 2012:36) Causality? Under reporting, under-represented amongst referrals for sexual abuse examinations Delayed disclosure Children with communication difficulties, sensory impairments, learning disabilities or behavioural disorders appear to have increased risk (some impairments may be the result of abuse)

14. Disabled children and abuse Most disabled children living with parents or carers ‘who were well motivated to provide good care for them’ Poor management of ‘child in need’ work increases likelihood of child protection concerns not being addressed early enough Limited access to specialist training in CP teams Limited use of advocacy Limited systems to assess quality of work to protect disabled children (Ofsted 2012)

15. Forgotten Families: Impact of Isolation Lack of social interaction – linked to not being in paid work Lack of time/money Fear of others reactions Need for peer support

16. Key moments of isolation 65% report feeling isolated frequently or all of the time 64% most isolated at diagnosis 43% felt most isolated during school holidays – Impact of specialist educational settings Limited emphasis on friendship and networks Growing hostility

17. Shrinking spaces and networks Importance of making mainstream services accessible http://www.scie.org.uk/socialcaretv/video- player.asp?guid=b9ff86e8-ff57-4696-a3f6- 6263592bfb12 Services as a ‘bridge’ or connection (Knight et al 2009) Buddying and peer support

18. Importance of peer support Even for well-loved disabled children, there might be nobody at home with whom to ‘compare notes’ on how to deal with oppressive practice within wider society, thus rendering the person with impairment even more isolated. In such a situation it is unsurprising that many disabled people with no positive role models have experienced internalised oppression...turning feelings of guilt at having been born at all and changing their family's life for ever onto themselves in damaging ways (Tregaskis 2004 cited in Goodley & McLaughlin 2008:18)

19. UN Convention on the rights of persons with disabilities (2006) Article 24 ‘ensure an inclusive education system at all levels’ ‘on an equal basis with others in the communities in which they live’ ‘receive the support required, within the general education system to facilitate their effective education’

20. The case for inclusive education Critique of residential/special schools Separation from home Separation from community Regimentation and lack of opportunity Abuse and neglect Poor education

21. Inclusive education? "The most vulnerable children deserve the very highest quality of care, so we will call a moratorium on the ideologically-driven closure of special schools...We will end the bias towards the inclusion of children with special needs in mainstream schools.“ (Conservative Manifesto 2010) http://www.youtube.com/watch?v=2Ol23MmKDWI http://www.youtube.com/watch?v=2Ol23MmKDWI Is inclusive education ‘ideologically-driven’?

22. Yes! And so it should be http://www.youtube.com/watch?v=P38tJ1w- dRA If they (young people) all mingled together then perhaps they (non-disabled people) would understand a bit more’ (young woman cited in Knight et al)

23. ALLFIE’s Inclusive Education Manifesto All disabled learners have the legal right to attend mainstream courses in mainstream education settings All disabled learners have the legal right to individualised support Education buildings to be made accessible to all disabled learners All mainstream course curricula are accessible to and inclusive of disabled learners All educational assessments and accreditations are inclusive Disability equality training is compulsory for all education professionals and staff

24. Social Justice & Community Cohesion "Our little boy Luke has learning disabilities. We decided that we wanted to send him to his local mainstream primary school, why wouldn't we? It is close, he is there with his sister and in our local school, after all this is where he lives and is part of our community." Hilary Newth Parent " Inclusive education IS a social justice issue because it creates a society that values all equally - not only does it benefit disabled students, but all students, because they learn the strength of diversity and equality, lose their fear of difference, and develop empathy for others. It is as much about recognising our similarities as it is valuing and respecting our differences. Feeling part of our families and our communities from the beginning of our lives increases our sense of citizenship.” Tara Flood CEO ALLFIE