Working with parents with a learning disability

1. Working with parents with a learning disability Dr Jon Symonds University of Bristol jon.symonds@bristol.ac.uk

2. Definitions • ‘Learning disability’ – ‘used within the statutory framework for social care support’ (DfES and DoH, 2007) • ‘Learning difficulty’ – far wider group who may struggle with the everyday. • May not be eligible for services • The ‘hidden majority’?

3. How many parents with learning disabilities live in England? • 53,000 would be the equivalent of 162 per English local authority 23,000 53,000 250,000 Don’t know WTPN, 2008, (but from 2003 data) Cited by DfES / DoH, 2007

4. Child protection and care orders • Over represented in the child protection system. • Over representation in the family court system – 12.5% care and supervision applications identified mothers as having learning difficulties (Masson et al, 2008) • Over 40% of parents do not live with their children (Emerson et al, 2005). • Concerns are for ‘neglect by omission’. Failure to protect and not meeting basic needs.

5. Parenting with a learning disability and child maltreatment • There is no predictive link between IQ above 60 and parenting ability (Tymchuk, 1992, IASSIDD SIRG, 2008) • ‘Overall, the studies demonstrate that disadvantage and social isolation contribute to a heightened risk of child maltreatment and the relative influence of parental ID per se cannot easily be disentangled from these other social factors.’ (Collings and Llewellyn, 2012)

6. Specific factors associated with parenting • Risk of poor mental health, drug and alcohol abuse and smoking (Emerson and Brigham, 2013) • Higher incidence of poverty, poor housing, social isolation (Emerson and Brigham, 2014) • Reduced social networks and socially isolated (Stenfert Kroese et al, 2002) • Past experience of abuse in own childhoods (McGaw et al, 2007)

7. Engaging with parents • Parents may fear that practitioners will not support their pregnancy (Mayes et al 2006) • Or that their child would be best placed with an adoptive family (McConnell et al 2006) • Parental ‘resistance’ may be a means of protecting their family (Traustadottir and Sigurjonsdottir, 2010)

8. Outcomes for children Parenting with a learning disability associated with: • Increased risk of developmental delay and speech and language problems but not with child behaviour problems, frequent accidents or injuries (Emerson and Brigham, 2014). • Socioeconomic status and limited support networks, but not associated with a child having poor health, asthma or being overweight or obese (Powell et al, 2016). • Stigma at school (Wolowicz-Ruszkowska and McConnell, 2017)

9. Outcomes for children • Some studies suggest that these children will be disadvantaged by their parents’ low intellectual capacity; others suggest that once other factors are taken into account, such as heightened risk in pregnancy and poor birth outcomes, poverty and troubled parental childhoods, and social isolation and stigma, child development approaches population norms.’ (Collings and Llewellyn 2012)

10. Parents or mothers? • Most practice and research is focused on mothers. • How many international journal articles have focused on fathers with learning disabilities since 1965? 14 4 400 40

11. Issues for fathers with learning disabilities • Parenting support focused on ‘primary carers’ ie mothers • Support for independent living skills, or mental health, but not parenting. • Becoming a father represents opportunity to be a successful man and ‘prove people wrong’. • https://www.youtube.com/watch?v=pNe133YO5S0

12. Issues for services • Mainstream services are rarely equipped to work with parents with learning difficulties (Goodringe 2000; Cleaver and Nicholson 2008, Tarleton et al 2006). • Non–LD professionals often have little experience of working with parents with learning difficulties (Cleaver and Nicholson 2008). • Difficulties and issues coordinating children’s and adults’ services (DfES/DoH, 2007; WTPN, 2016)

13. What does the law say? • United Nations Conventions on: • The Rights of the Child – article 18: States shall render appropriate assistance to parents in the performance of their child-rearing responsibilities. • The Rights of Persons with Disabilities – article 23: States shall render appropriate assistance to persons with disabilities in the performance of their child-rearing responsibilities. • Equality Act 2010 – public sector/body duty to actively promote equality of opportunity (e.g by making reasonable adjustments)

14. The Children and Families Act 2014 • Where parents may not have the capacity to engage fully with the process, all efforts must be made, such as working in partnership with adult services, to secure appropriate advocacy to ensure that LA actions are fully understood by parents (Court orders and pre-proceedings – For local authorities. April 2014. DfE. Page 15, para 21) • In fact, human rights case law requires steps to be taken to enable parents’ “full participation” in the process, not merely “full understanding of LA actions”.

15. The Care Act 2014 • Effective intervention at the right time can stop needs from escalating (Statutory Guidance Page 3, para 11.4(c)) • Even if a person has needs that aren’t eligible at that time, the LA must consider providing information and advice or “other preventative services” (Statutory Guidance Page 75, para 6.6)

16. Care and Support (Eligibility Criteria) Regulations 2014 The specified outcomes include — (f)  maintaining a habitable home environment;(g) developing and maintaining family or other personal relationships;(h) accessing and engaging in work, training, education or volunteering;(i) making use of necessary facilities or services in the local community including public transport, and recreational facilities or services; and(j) carrying out any caring responsibilities the adult has for a child

17. Good practice guidance - principles • accessible information and communication • clear and co-ordinated referral and assessment processes and eligibility criteria • support designed to meet the needs of parents and children based on assessment of their needs and strengths • long-term support, if necessary • access to independent advocacy WTPN, 2016

18. Good practice guidance - recommendations • Accessible information • Access to independent advocacy • Support parents to be involved • Specialist input to core assessments • Appoint a key worker for the parent(s) • Address possible vulnerability of learning disabled parent • Provide practical support to parents when children temporarily removed • Where child is not, or no longer at risk, provide support to prevent future problems arising (DfES/DoH, 2007; WTPN 2016)

19. Case law • ‘b. a protocol would focus on the Guidance which had not always been followed in this case – and to describe the Guidance as a 'counsel of perfection' (the argument which was submitted on behalf of the Guardian) is to give a charter to ignore it which should be robustly challenged’ • A Local Authority v G (Parent with Learning Disability) [2017] EWFC B94.

20. A word from Sir James Munby… • ‘My primary purpose in issuing this Guidance is to bring to the attention of practitioners and judges, and to commend for careful consideration and application by everyone, the very important “Good practice guidance on working with parents with a learning disability” issued by the Working Together with Parents Network and the Norah Fry Centre in September 2016’ Sir James Munby, President of the Family Division, 10 April 2018

21. Is there evidence that support works? • Parenting interventions more successful when delivered in the home environment (Wade et al, 2008). • Parent training associated with improvements in maternal-child interaction, improved safety around the home, recognising child illness and improving children’s safety (Coren et al, 2011). • Targeting parental behaviour more successful than only promoting social support (Wilson et al, 2014).

22. Cost effectiveness • ‘Cost of care packages as part of long-term personalised support ranged from £32,427 to £47,738’ [12 to 18 month period] • Return on investments for advocacy, Shared Lives and intensive family interventions • For every £1 spent, between £1.80-£3.00 return to public purse. (Bauer, 2015)

23. Positive practices - assessments Competency based assessment of support needs • PAMs, version 4.0 • http://www.pillcreekpublishing.com/ • Developed by Sue McGaw

24. Positive practices - assessments • Learning Curves • https://www.norfolklscb.org/wp-content/uploads/2015/09/Corrected-Learning-Curves.pdf • Start from what parents can do and what support needed • Deliver support at home if possible, using the parents’ own equipment • Co-ordinated, holistic, multi-agency assessment, including wider factors (mental health, social support etc)

25. Positive practices – training pack • Developed by Deborah Chinn (2012) • Training pack across child protection and adults with learning difficulties fields https://www.pavpub.com/enabling-parenting-with-support/

26. Positive practices - Local authority protocols • Coordination across adults and children’s services • The Suffolk Accord • http://suffolkscb.org.uk/assets/Working-with-Children/Policies-Guidance-and-Protocols/ACCORD/2016-02-03-The-ACCORD-Protocol-Principles-and-Guidance-v5.pdf

27. Positive practices - services Valuing Parents Support service, Medway (evaluated in 2011) • Individualised support for everyday need, parenting, advocacy, understanding reports, accessing services, emotional support, contact with children. • 84% children living with parents (comparison group = 24%) • 62% children not at risk of significant harm (comparison = 6%)

28. Positive practices - advocacy • Coventry grapevine - http://www.grapevinecovandwarks.org/ • A holistic, community-powered advocacy service for parents with a learning disability. • Network of volunteer advocates • Recently expanded in scope and capacity.

29. Positive practices – community support • Shared Lives - https://www.nhs.uk/conditions/social-care-and-support/shared-lives/ • Personalised community based type of support with accommodation. • A place to live for the adult and the child in a normal family home, sharing in all aspects of home and family life. Long or short ter • Predominantly LD service, but expanded beyond.

30. Positive practices – Mellow Futures • Adaptation of Mellow Parenting and volunteer support • 6 weeks antenatal and 14 weeks post natal, • Baby groups, personal development, use of video, activities with children • Well received by mothers who were referred. • Majority of referrers saw improvement in maternal interactions with and care of baby. • Mothers still needed on-going support.

31. Summary – features of positive practices • Accessible information, advocacy, individualised learning • Family-centred, Think Family approach • Range of services involved and coordinated • Covering the family life cycle and a variety of situations • Provide children with support in their own right • Emotional support to parents (DfES/DoH 2007, Tarleton et al 2006, SCIE 2005, McGaw and Newman 2005, WTPN 2016)

32. Resources – policy and guidance • Working Together with Parents Network (2016) Good practice guidance on working with parents with a learning disability (updated) - • www.bristol.ac.uk/media-library/sites/sps/documents/wtpn/2016%20WTPN%20UPDATE%20OF%20THE%20GPG%20-%20finalised%20with%20cover.pdf • SCIE Research briefing 14: Helping parents with learning disabilities in their role as parents – https://www.scie.org.uk/publications/briefings/briefing14/ • RiP / RiPfA strategic briefing - Supporting parents who have learning disabilities from Turney et al (2018)

33. Resources - easy read materials Providing easy information about parenting • Change http://www.changepeople.org/projects/parenting-projects • Pregnancy support pack – NHS Fife - eleanorporter@nhs.net • Raising Children network - http://raisingchildren.net.au/parenting_in_pictures/pip_landing_page.html

34. Resources - easy read information www.changepeople.org/free-resources/ www.inspiredservices.org.uk/Information%20for%20all.pdf

35. International resources • The Australian Healthy Start initiative www.parentingrc.org.au/programs/healthy-start/ • The Association for Successful Parenting (North America) www.achancetoparent.net/ • Parents Empowering Parents www.heller.brandeis.edu/news/items/releases/2016/lurie-center-grant.html

36. Stay connected! • Join the Working Together with Parents Network • Practitioner peer support network • Resources, news updates, case law commentary • Website: www.bristol.ac.uk/sps/wtpn

37. References • A Local Authority v G (Parent with Learning Disability) [2017] EWFC B94. Available from http://www.familylawweek.co.uk/site.aspx?i=ed187454 • Bauer, A. (2015) The economic case for early and personalised support for parents with learning difficulties, PSSRU: London. • Care Act 2014 • Department of Health (2014) Care and Support (Eligibility Criteria) Regulations 2014.The Stationery Office: London. • Children and Families Act 2014 • Cleaver, H. and Nicholson, D. (2008) Parental Learning Disability and Children’s Needs: family experiences and effective practice, Jessica Kingsley: London. • Collings, S. and Llewellyn, G. (2012). Children of parents with intellectual disability: facing poor outcomes or faring okay? Journal of Intellectual and Developmental Disability, 37, 65-82.

38. References • Coren E, Hutchfield J, Thomae M and Gustafsson C (2011) Parent Training Support for Intellectually Disabled Parents (Review). Cochrane Database of Systematic Reviews. • Department for Education and Skills and Department of Health (2007). Good Practice Guidance on Working with Parents with a Learning Disability, London, The Stationery Office. • Emerson, E., Malam, S., Davies, I. & Spencer, K. 2005. Adults with Learning Difficulties in England 2003-2004. • Emerson, E. and Brigham, P. (2013) Health behaviours and mental health status of parents with intellectual disabilities: cross sectional study, Public Health, Vol 127, 1111-1116. • Emerson, E. and Brigham, P. (2014) The developmental health of children of parents with intellectual disabilities: cross sectional study, Research into Developmental Disabilities, Vol 35, 917-921. • Equality Act 2010 • Faureholm, J. (2010) Children and their life experiences. In Llewellyn, G., Traustdottir, R., McConnell, D. and Sigurjonsdottir, H. (eds) Parents with Intellectual Disabilities: past, present and futures. John Wiley and Sons: Chichester. • Goodringe, S. (2000) A Jigsaw of Services: Inspection of Services to Support Disabled Adults in their Parenting Role. Department of Health: London.

39. References • IASSIDD Special Interest Research Group on Parents and Parenting with Intellectual Disabilities (2008) Parents labelled with intellectual disability: position of the IASSIDD SIRG on parents and parenting with intellectual disabilities, Journal of Applied Research in Intellectual Disabilities, Vol 21, 296-307. • Masson, J., Pearce, J. and Bader, K. (2008) Care profiling study (Ministry of Justice Research Series 4/08). Ministry of Justice and Department of Children, Schools and Families: London. • Mayes, R., Llewellyn, G. & Mc Connell, D. (2006) Misconception: The experience of pregnancy for women with intellectual disabilities. Scandinavian Journal of Disability Research Vol 8, 120-131. • McConnell, D., Llewellyn, G. and Ferronato, L. (2006) Context-contingent decision-making in child protection practice, International Journal of Social Welfare, Vol 15, 230-239. • McGaw, S. and Newman, T. (2005) What Works for Parents with Learning Disabilities? Jessica Kingsley: London.

40. References • McGaw, S., Shaw, T. & Beckley, K. 2007. Prevalence of psychopathology across a service population of parents with intellectual disabilities and their children. Journal of Policy and Practice in Intellectual Disabilities, 4, 11-22. • Munby, J. (2018)President’s Guidance: Family proceedings: Parents with a learning disability. Available at https://www.familylaw.co.uk/news_and_comment/president-s-guidance-family-proceedings-parents-with-a-learning-disability#.Wx1yWpPwbsE [Accessed 10 June 2018] • Powell R, Parish S, and Akobirshoev I (2016) Health of young children whose mothers have intellectual disability, American Journal of Intellectual and Developmental Disabilities, Vol 121, 281-294. • Sigurjonsdottir, H. and Traustadottir, R. (2000) In R. Traustadóttir & K. Johnson (Eds.), Women with intellectual disabilities: Finding a place in the world. Jessica Kingsley: London.

41. References • Social Care Institute for Excellence (2005) SCIE Research briefing 14: helping parents with learning disabilities in their role as parents. Available at https://www.scie.org.uk/publications/briefings/briefing14/ [Accessed 10 June 2018] • Tarleton, B., Ward, L. & Howarth, J. (2006) Finding the Right Support. A review of issues and positive practice in supporting parents with learning difficulties and their children. London, Baring Foundation • Traustadottir, R. and Sigurjonsdottir, H. (2010) Parenting and resistance: strategies in dealing with services and professionals. In Llewellyn, G., Traustdottir, R., McConnell, D. and Sigurjonsdottir, H. (eds) Parents with Intellectual Disabilities: past, present and futures. John Wiley and Sons: Chichester. • Turney, D., Tarleton, B. and Tilbury, N. (2018) Supporting parents who have learning disabilities: Strategic Briefing. Research in Practice / Research in Practice for Adults: Dartington. • Tymchuk A (1992) Predicting adequacy of parenting by people with mental retardation, Child Abuse and Neglect, Vol 16, 165-178.

42. References • United Nations (1989) Convention on the Rights of the Child. • United Nations (2006). Convention on the Rights of Persons with Disabilities. • Working Together with Parents Network (2008) Facts and figures about parents with learning disabilities in England. Available at http://www.bristol.ac.uk/sps/media/WTWPN_documents/facts-pwld.pdf [Accessed 10 June 2018] • Wilson S, McKenzie K, Quayle E and Murray G (2014) A systematic review of interventions to promote social support and parenting skills in parents with an intellectual disability, Child: care, health and development, Vol 40, 7-19. • Wolowicz-Ruszkowska, A. and McConnell, D. (2017) The experience of adult children of mothers with intellectual disability: a qualitative retrospective study from Poland, Journal of Applied Research in Intellectual Disabilities, Vol 30, 482-491. • Working Together with Parents Network (2016) Good Practice Guidance on Working with Parents with a Learning Disability [updated guidance], University of Bristol: Bristol.