Parenting and Disability Harriet Clarke University of Birmingham

1. Parenting and DisabilityHarriet ClarkeUniversity of Birmingham

2. Disabled parents… • Disabled parents include • parents with physical or sensory impairments • parents who experience mental distress • parents with learning difficulties • Deaf parents • parents who have a drug or alcohol dependency • parents who have long-term health difficulties ---------------------------------------------------------------------------- Disabled Parents Network www.disabledparentsnetwork.org.uk SCIE Knowledge Review 11/Resource Guide 9 www.scie.org.uk

3. Disabled parents and their families • Recent UK experience: Children of disabled parents • Boundaried visibility: ‘young carers’ Disabled parents • Developing visibility in social policy • Social model approach: Disability as the ‘loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers’, Barnes, C. (1991: 2) Disabled People in Britain and Discrimination, London, Hurst and Co.

4. Young carers to be targeted for support The Irish Times, 7th July 2009 “YOUNG CARERS around the country will be targeted in a move to create a national support network for young people who look after sick or disabled parents or relatives at home. While there is a strong support network in place for young carers in the UK and Northern Ireland, Linda McKernan of Cork City Partnership (CCP) said there was no such support for young Irish carers. ” http://www.irishtimes.com/newspaper/health/2009/0714/1224250632672.html

5. Disabled parents' children removed with ‘no support’ The Irish Times, Wednesday June 1st 2011 “THE STATE is removing children from parents who have mild intellectual disabilities “with little or no effort being made to support these people as parents”, lobby group Inclusion Ireland has said.” http://www.irishtimes.com/newspaper/ireland/2011/0601/1224298206233.html

6. Disabled Parents’ Experiences… Funding programme: Department of Health Supporting Parents Initiative Project title: Parenting and Disability: The Role of Formal and Informal Networks Researchers:Richard Olsen and Harriet Clarke (then University of Leicester) Olsen, R. and Clarke, H. (2003) Parenting and Disability: Disabled Parents’ Experiences of Raising Children, Bristol: The Policy Press

7. Context: concern about ‘care’ “We were concerned to find that although, according to senior managers, the social model of disability guided the council’s work this did not follow through into their staff’s actions. The focus of staff appeared to be either on the children in the family or on the impact of the adults’ disability on their personal needs. Workers ... seldom focused on the whole family and how to support and help the parents in the discharge of their parental duties in their social setting.” Goodinge, S. (2000) A Jigsaw of Services: Inspection of Services to Support Disabled Adults in their Parenting Role, London, Department of Health.

8. Different ‘Lenses’ • Risk lens: child ‘in need’ focused • Can be in the context of limited response and / or ‘crisis’ based response to needs of disabled parent • Functional lens:impairment focused • Focus on tightly defined care needs / support requirements of parent • Barriers lens: access focused • Focus on equal opportunities to parenting role

9. The Risk Lens:Experiencing Negative Attitudes • Disabled parent told they are ‘creating’ risk (without support / advice being offered) • E.g. ‘you do realise you’ll be ill soon?’ • consultant to mother (mental distress, two parent household) • Disabled parent recognised as significant, but in negative terms (unspecified or vaguely specified impact on child) • E.g. Disabled child said to be ‘emulating’ disabled parent(with negative connotation) • social care worker to mother (physical impairment, two parent household)

10. Implications of a ‘risk’ lens? “...the association is easily made between being seen as different and being seen as problematic. And so, from a disabled parent’s point of view, doing one’s best to appear normal may seem like the safest route to a family life free from unwelcome intervention” Wates, M. (1997) Disabled Parents: Dispelling the Myths, London: National Childbirth Trust

11. The Functional Lens: Fragmenting Families Narrow focus on personal care needs; individuals disjointed from relationships • Individual assessments without recognition of parenting role and family relationships: • Example: Home Space • Extremely divided • Lack of Division • Danger of objectifying rather than recognising the individual and the family relationships

12. The Barriers Lens:Improving Access to Support • Removing barriers • Recognising parenting role of disabled adults • Removing physical & attitudinal barriers • Improving information availability & accessibility “A leaflet should be available to tell you all the support and all the benefits available. Everything is word of mouth and accidentally finding out about things. Simply keeping the household together takes so much effort, that there is very little left for chasing benefits or information about things.” Father (Mother experiencing mental distress)

13. The Barriers Lens:Equal Opportunities to Family Life • What makes this possible? • Adequate income • Appropriate housing • Informal networks / local community • School access • Access to further support when required • Support involves removing disabling barriers

14. Developing understanding for policy and practice: UK Experience • Social Care Institute for Excellence Jenny Morris and Michele Wates: • SCIE Knowledge Review 11 (2006) • SCIE Resource Guide 9 (2007) • Commission for Social Care Inspection (2009): • Special Study (English Councils) ‘Supporting Disabled Parents: A Family or A Fragmented Approach?’

15. SCIE Knowledge Review 11 (2006)and Resource Guide 9 (2007) • SCIE Knowledge Review 11 - Review of Evidence • Interagency work tends to have focused on safeguarding children rather than supporting parents (evidence of risk lens) • SCIE Resource Guide 9 – Local Policy and Practice • Partnership working and developing protocols • Supporting parents to meet children’s needs • Address support requirements before considering parenting capacity

16. CSCI Special Study Context for the study… SCIE KR11 and RG9 Developing research base ‘Think Family’ Personalisation agenda

17. Project Questions and Method • Are disabled parents and their families getting the right support ? • How are councils making sure that local spaces and services are accessible and welcoming? • How do services work together? • What do families think about services? Survey – 50 councils  Workshops – 4 councils

18. Parents identify core issues…. • “...the problems we face are because there is a perceived contradiction between being a parent and being disabled, as if you can’t actually be both.” (Disabled mother, workshop participant) • “I’m disabled, I’m a parent – but never the twain shall meet. The two services argue and I’m left in the middle.” (Disabled mother, workshop participant) CSCI (2009: p 8)

19. Service recognition of the need for a local strategy At times children’s services may see a problem where adults’ [services] don’t see it, and vice versa, as both are specialised in what they do and what they focus on. (Manager, children’s service, workshop participant)

20. Barriers to developing practice? • Only 17 of 50 councils had collected any information about disabled parents and their families living in their area so few were planning services with a knowledge base • 33 of 50 councils reported that their policies tended to focus separately on adults’ and children’s issues.

21. Learning from service developments It’s about having a holistic approach, assessing people in the context of the family. The protocol focuses on which service does what, when. The ethos is maintaining parental control whilst safeguarding children. Previously service users could be passed around but the protocol says that whoever takes the call holds the case, until it is formally assigned to the appropriate service. (Strategic manager, adults’ services) CSCI (2009: p 43)

22. Conclusion: Recognising Disabled Parents and their Families • Visibility of Disabled Parents • Services which work together and fully recognise the parenting role • Identifying and challenging disabling practice • What is restricting appropriate support being delivered? Where are the good practice examples? • Using and developing the information base • Policy and Practice • Population (including local population knowledge) • Research

23. Useful Links • SCIE Knowledge Review 11 & Resource Guide 9 www.scie.org.uk ... and information on good practice re: protocols http://www.scie.org.uk/publications/guides/guide19/resources/protocols.asp#universal • CSCI (2009) report http://www.cqc.org.uk/_db/_documents/Dis_parents6.pdf • Disabled Parents Networkwww.disabledparentsnetwork.org.uk • Disability, Pregnancy and Parenthood International www.dppi.org.uk • Deaf Parent UKwww.deafparent.org.uk

24. Harriet Clarke, Lecturer University of Birmingham h.clarke@bham.ac.uk