WITH LEARNING DISABILITIES. Head of Psychological Services for People with Learning Disabilities and Associate Clinical Director

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1 SUPPORTING PARENTS WITH LEARNING DISABILITIES Dr Sandra Baum Head of Psychological Services for People with Learning Disabilities and Associate Clinical Director Oxleas NHS Foundation Trust

2 OVERVIEW Parents experiences and factors which may affect parenting Parent training and interventions Rewards of parenthood Effects on children The removal of children Services in the UK Useful links and resources YouTube clip, exercise and discussion

3 HOW MANY PARENTS WITH LEARNING DISABILITIES (LD) ARE THERE? Difficulties in making accurate estimates Identification and definition Parents may not want to be identified Very little research with BME communities Figures range from 25,000 to 250,000 in UK Adults with LDs make up 2% of population (6.5% if possible LDs included) Recent survey of adults with LDs found 1 in 15 had children (Emerson et al, 2005) Majority (2/3) of social workers (child and family), health visitors and midwives have parents with LDs on caseload

4 PARENTS EXPERIENCES AND FACTORS WHICH MAY AFFECT PARENTING Research shows more likely to: Live in poverty Be isolated and victimised Poor models of parenting Difficult relationship histories Insufficient social support Increased psychological distress Services often do not look beyond the label of LD

5 IQ PREDICTIVE OF PARENTAL COMPETENCE? Only if IQ is below Competency influenced by complexity of skills to be acquired, social support and characteristics of the child. Children can be described as vulnerable. They are at risk of developmental delay, particularly in relation to language and cognitive skills, of doing less well at school and having greater behavioural difficulties.

6 PARENT TRAINING AND INTERVENTIONS Growth of evidence on effectiveness and limitations of parenting programmes (McGaw & Newman, 2005). Behavioural methods most effective. The Parent Assessment Manual (McGaw et al. 1999, 2007) most well-known and well-used tool to identify where interventions should be targeted recommended by Dept. of Health (2000).

7 PARENTAL SKILLS MODEL (MCGAW & STURMEY, 1994) Parent s life skills Child care and development Family History Support and resources

8 ACCESSIBLE RESOURCES My Pregnancy, My Choice (CHANGE, 2008). You and Your Baby 0-1 (CHANGE, 2010, 2012). You and Your Little Child 1-5 years (CHANGE, 2007). They support behavioural teaching methods. They use simple line drawings and are individualised, intensive and concrete.

9 FACTORS WHICH EFFECT SUCCESSFUL LEARNING Home based teaching for specific skills. Long-term teaching not group interventions that are time-limited. Parental interest in, and involvement with, the child. Motivation to learn. Social supports. Positive relationship with the trainer. Parental knowledge may increase but not necessarily translate into observable skills.

10 REWARDS OF PARENTHOOD 60-90% of women with LD want to get married and have children (Aunos & Feldman, 2002). Researchers concur that parents with LD can successfully raise their children if support matches their needs (Booth & Booth, 1994; Edmonds, 2000; Tarleton, Ward & Howarth (2006). Positive identity, satisfaction and pride (Edmonds, 2000). Outcome study of English and Bangladeshi parents with LD (O Hara & Martin, 2003).

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12 EFFECTS ON CHILDREN OF HAVING A PARENT WITH LD Genetics If parents have LD it does not necessarily follow that children with have LD. Caution is needed in interpreting the effects due to nature versus nurture debates.

13 RISKS OF CHILD MALTREATMENT AND ABUSE Rare to intentionally harm Unintentional neglect Abuse perpetrated by another person High risk versus low risk mothers (McGaw, Skully & Pritchard (2010): 1. Childhood trauma of parent 2. Their own special needs (physical disability) 3. Raising a child with special needs 4. Male partner higher IQ and/or antisocial behaviour and criminal activity

14 THE REMOVAL OF CHILDREN 40-60% of children will be removed. 10% of children removed at birth. Court studies (Booth, Booth & McConnell, 2005) times more likely than other parents. Assumption that people with LD will neglect their children- no evidence. Focus on IQ rather an impact of social and economic deprivation.

15 EXPERIENCES OF CHILD REMOVAL Decisions highlight the adequacies of parents at the expense of their ordinary human feelings Booth & Booth, 1994). Baum and Burns (2007): in-depth study of 8 mothers: Concerns raised by others Felt bullied and victimised by the process Did not understand the process Blamed a violent partner, social worker or their LD Little support before and after process

16 PROVISION ACROSS THE UK Varied and patchy across the UK. Unclear whether child or adult services should fund support. Pooled budgets? Funding long term? Three key reports in 21 st Century: 1. A Jigsaw of Services (Goodinge, 2000) 2. Finding the Right Support (Tarleton, Ward & Howarth, 2006) 3. Guidance on Working with Parents with a Learning Disability (Dept. of Health & Dept. for Education and Skills, 2007) - currently being updated.

17 GOOD PRACTICE GUIDANCE ON WORKING WITH PARENTS WITH LEARNING DISABILITY (DEPT OF HEALTH, 2007) (1) Five key features of good practice: 1. Accessible information and communication 2. Clear and co-ordinated referral and assessment procedures and processes, eligibility criteria and care pathways 3. Support designed to meet the needs of parents and children based on assessments of their needs and strengths 4. Long-term support where necessary 5. Access to independent advocacy

18 GOOD PRACTICE GUIDANCE ON WORKING WITH PARENTS WITH LEARNING DISABILITY (DEPT OF HEALTH, 2007) (2) In terms of the kinds of services offered, it recommends consideration of both the role of mainstream services and the development of a range of specialist services. This includes: Expertise in working with parents with learning disabilities amongst midwifery and health visiting services Liaison roles between different services (e.g. between adult and children's social care) Expertise in assessments of parents with learning disabilities where there are concerns about children s welfare Parent support services both specialist and mainstream services Parenting courses, parents groups: both specialist and mainstream Independent advocacy services Direct payments support services Housing and housing-related support Accessible information and availability of communication resources Counselling and therapeutic services, and self-advocacy/ self-help groups

19 PROFESSION FOCUSED GUIDANCE For clinical psychologists: Good Practice Guidance for Clinical Psychologists when Assessing Parents with Learning Disabilities. Leicester: The British Psychological Society. (Baum, Gray and Stevens, 2011) For midwives and nurses: Pregnancy and Disability. RCN guidance for midwives and nurses. (London: The Royal College of Nursing, 2007).

20 CURRENT INITIATIVES Innovative examples of good practice: Special Parenting Service in Cornwall ( Shared Lives South West ( Health and Social Care Act (2008) and Equality Act (2010) mainstreaming: Enabling Parenting with Support: Effective working with parents with learning disabilities. Brighton: Pavilion Publishing. (Chinn, 2012).

21 USEFUL LINKS AND RESOURCES CHANGE. You and Your Baby 0 1. You and Your Little Child 1 5. Planning a Baby. My Pregnancy, My Choice. McGaw, S. (2007). Parent Assessment Manual (2 nd Edition). Truro: Pill Creek Publishing. Norah Fry: The Working together with Parents Network. website, blog, , up-dates - membership is free

22 SUMMARY Many people with LD are becoming parents No reliable estimates of numbers If known to services expectation to receive practical support and effective service provision Risk of losing their children Children described as vulnerable Lack of specialist services but mainstreaming Training programmes are effective Positive stories

23 SOME REFERENCES (1) Baum, S. (2014). Review article on parents with intellectual (learning) disabilities published on the website Understanding Intellectual Disability and Health disabilities Baum, S. & Alexander, N. (2010). Pregnancy, contraception and women choosing to have a child. In M. McCarthy & D. Thompson (Eds.), Sexuality and Learning Disabilities: A Handbook (pp ). Brighton: Pavilion Publishing. Baum, S. & Burns, J. (2007). Mothers with Learning Disabilities: Experiences and Meanings of losing Custody of their Children. Learning Disability Review, 12, 3, Booth, T. & Booth, W. (1994). Parenting Under Pressure: Mothers and Fathers with Learning Difficulties. Buckingham: Open University Press. Edmonds, J. (2000). On being a mother: A positive identity in the face of adversity. Clinical Psychology Forum, 137, Emerson, E., Malam, S., Davies, I., & Spencer, K. (2005). Adults with learning difficulties in England 2003/4. London: NHS Health & Social Care Information Centre.

24 SOME REFERENCES (2) London Network of Parents with Learning Difficulties (2009), McGaw, S. & Newman, T. (2005). What Works for Parents with Learning Disabilities? Essex: Barnardo s. McGaw, S., Scully, T. & Pritchard, C. (2010). Predicting the unpredictable? Identifying high-risk versus low-risk parents with intellectual disabilities. Child Abuse and Neglect, 34, Norah Fry Research Centre (2009). Supporting parents with learning disabilities and difficulties. Stories of Positive Practice. Bristol: Norah Fry Research Centre. O Hara, J. & Martin, H. (2003). Parents with learning disabilities: a study of gender and cultural perspective s in East London. British Journal of Learning Disabilities, 31,

25 ANY QUESTIONS?

26 PARENTS WITH LEARNING DISABILITIES

27 EXERCISE Discussion of YouTube clip: What are you doing well already in relation to parents with learning disabilities? What opportunities do you have to identify and support parents with learning disabilities? What ideas do you think you could take into your clinical practice?