Parents with Intellectual Disabilities

Dr Sandra Baum (UK), Head of LD Psychological Services, Oxleas NHS Foundation Trust

Overview

Many people with learning disabilities are now becoming parents and yet there are no reliable estimates of numbers due to, first, variations in the definition of learning disabilities over time and cross-nationally (Whitman & Accardo, 1990) and, second, the fact that relatively few parents with learning disabilities are known to the relevant services (McGaw & Sturmey, 1993). All told, therefore, this is something of an invisible population.  For those people with learning disabilities who are known to services, the key requirement is for them to receive practical support in their role as parents (Tarleton, Ward & Howarth, 2006) and there is an expectation that services deliver effective provision (London Network of Parents with Learning Difficulties, 2009, www.bristol.ac.uk/wtwpn/resources/parenting-toolkit.pdf ). However, in spite of this, it is recognised that these parents face an increased risk of losing their children (Booth, 2000) and that their children are more likely to be described as vulnerable (Keltner, Wise & Taylor, 1999).

Research has shown that the removal of children is often viewed as a consequence of parental incompetence but in reality it may be due more to lack of appropriate long-term support or specialist service provision (Booth & Booth, 1994). Significantly, training programmes for parents with learning disabilities have been shown to be effective in increasing skills and competencies (McGaw & Sturmey 1993). Additionally, some of the literature emphasises that, with positive support, parents with learning disabilities can successfully raise their children, and there are case studies of this happening (Norah Fry Research Centre, 2009).

This review will focus on parents’ experiences and the factors which may affect their parenting, dealing with, in turn, parent training and interventions; rewards of parenthood; effects on children of having a parent with learning disabilities; the removal of children; service provision across the UK and current initiatives; further reading; and useful links and resources.

Parents’ experiences and factors which may affect parenting

Historically, there have been long-standing concerns about people with learning disabilities becoming parents, with responses from professionals and carers triggering debate and anxiety (Baum & Alexander, 2010). Pregnant women with learning disabilities, in particular, frequently face criticism and judgment; and professionals’ own beliefs and attitudes affect the choices that people with learning disabilities make (Booth & Booth, 1994; Baum & Alexander, 2010). Behind much of this controversy is a mismatch between reality and perception.  Research studies show that parents with learning disabilities are more likely to live in poverty; be isolated and victimised; and have poor models of parenting, difficult relationship histories, insufficient social support, and increased psychological distress - all of which of course impact upon their ability to cope with the demands of raising children (Edmonds, 2000; Baum, Gray & Stevens, 2011). Yet it is also clear that services do not necessarily look beyond the label of ‘learning disability’ and thus tend to neglect the complexity of factors that influence parental competence (Booth & Booth, 1994).

There is general agreement in the literature that IQ is not necessarily predicative of parental competency except when it falls below 55-60 (Tymchuk, Adron & Unger, 1987). Above this level, the evidence suggests that decisions about whether a person is an effective parent ‘will need to rest upon a case by case judgment of abilities relevant to the rearing of children rather than IQ level alone’ (Dowdney & Skuse, 1993, p. 34). Clearly parental competency will be influenced by the complexity of skills that need to be acquired, the social support available and the specific characteristics of the child such as their developmental level (Dowdney & Skuse, 1993). Children who have parents with learning disabilities 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 of having greater behavioural difficulties (Keltner, Wise & Taylor, 1999). Nevertheless, some studies report that children can do well if there is sufficient social support to help their parents (Aunos & Feldman, 2002; Llewellyn & McConnell, 2002; Taylor & Rogers, 2005). However, it is argued more generally that parental competence should not be judged on unfair and invalid assessment procedures such as IQ tests and hypothetical questions about parenting but on appropriate assessment methods, which will be discussed in the next section (Tymchuk & Feldman, 1991; Aunos & Feldman, 2002).

Parent training and interventions

Over the last twenty years, there has been a growth of evidence on the effectiveness and limitations of parenting programmes (see, for example, Craft, 1993; Feldman, 1994; McGaw, 1993; McGaw & Newman, 2005). It has been argued that training can improve the knowledge and skills of mothers in virtually all areas of parenting, with behavioural methods - such as modelling, verbal instructions, physical guidance, breaking tasks into smaller steps and using pictorial aids - being the most effective intervention in relation to acquiring practical and relationship skills (Booth & Booth, 1994; Murphy, 1996; McGaw, 1998; McGaw, Ball & Clarke, 2002; Baum, Gray & Stevens, 2011).

The Parent Assessment Manual (PAM) (McGaw, Beckley, Connolly & Ball, 1999; McGaw, 2007) is the most well-known and well-used tool to assess and to identify where interventions should be targeted, and was recommended by the Department of Health (UK) in its publication Framework for the Assessment of Children in Need and their Families (2000). The PAM assesses parental knowledge, parenting skills, and the frequency of parental practice by using a range of measures including rating scales, questionnaires, self-reporting, task setting and observation. There are also a number of accessible resources that have been developed over recent years to assist the trainer and parents with learning disabilities, notably by the organisation called CHANGE, such as My Pregnancy, My Choice (CHANGE, 2008), You and Your Baby 0-1 (CHANGE, 2010, 2012),and You and Your Little Child 1-5 years (CHANGE, 2007). These resources can support behavioural teaching methods, and because they use simple line drawings, enable them to be individualised, intensive and concrete, which is the key to successful teaching. However, in order for learning to be maintained, teaching must be consistently delivered over the long term (Baum, Gray & Stevens, 2011). Factors which effect successful learning include maternal interest in, and involvement with, the child, and motivation to learn, as well as the complexity of the skill to be acquired and social support available. Perhaps equally important, there must be a positive relationship between the trainer and the parents (Dowdney & Skuse, 1993).

All that accepted, there are some limitations to training programmes which have been reported in the literature, particularly in relation to maintaining and generalising taught skills. Training that takes place outside the home does not necessarily transfer within (Bakken, Miltenberger & Schauss, 1993). New learning is maintained by being taught in real-life settings to maximise the generalisation of skills (Feldman, Towns, Betel, Case, Rincover & Rubino, 1986; Feldman, Case, Rincover, Towns & Betel, 1989). Also, although parental knowledge may increase over the course of a training programme, this does not necessarily translate into practical observable skills (see, for example, Tymchuk, 1991; Hur, 1997).

In their study on the effects of a group intervention on the relationships of parents with learning disabilities, McGaw, Ball and Clarke (2002) found that all made new friends which increased their social support networks and self-esteem, though this did not immediately benefit their children in terms of either functioning and behaviour. However, the researchers noted that positive self-esteem is associated with the quality of parent-child interaction, and that this is an important secondary gain. Another interesting finding was that single parents with learning disabilities had significantly lower ratings of self-esteem and thus a group setting to discuss relationships may not be the optimal environment for them.  Finally, McGaw, Ball and Clarke (2002) warn against single group interventions that are time-limited, even if there are combinations of individual work and group interventions, as they believe that these will not improve parent-child relationships. Parents with learning disabilities fare better if they have had prior experience of groups in a setting of their liking.

Rewards of parenthood

Between 60 and 90 per cent of women with mild learning disabilities want to marry and have children (Bratlinger, 1985 cited in Aunos & Feldman, 2002). Researchers concur that parents with learning disabilities can successfully raise their children if they are given support that matches their needs (Booth & Booth, 1994; Feldman 1994; Edmonds, 2000; Aunos & Feldman, 2002). Tarleton, Ward and Howarth (2006) highlight that whilst successful parenting is a great challenge for these parents, if they are to be given the same chance as other people, ‘they need access to services which will support them in their parenting role, so that they are able to successfully “parent with support”’ (p.88).

In recent years there have been more stories of successful parenting, with for example the Norah Fry Research Centre (2009) producing a collection of real-life stories of parents with learning disabilities who have had the right support to enable them to look after their children.  There is a working together with parents network (www.bristol.ac.uk/wtwpn) run by, and for, parents themselves, which aims to help parents hold on to their children and give support to each other, and there is a national taskforce on supporting parents with learning disabilities (http://www.bristol.ac.uk/wtwpn/national-taskforce ) which brings together parents and representatives of key agencies, including government and voluntary organisations, to exchange ideas on good practice and to lobby for change in relation to what local services should be doing to ensure parents with learning disabilities receive the help they need, and to which they are entitled. Equally important, there are now a number of publications for parents with learning disabilities, written in an easy read, illustrated, format which they can understand. Many of these have been produced by CHANGE, the organisation which runs the parents network.

Booth and Booth (1994) argue that parenthood is something that people with learning disabilities accomplish in spite of opposition from others. It creates new opportunities of interacting with non-disabled people, increasing a sense of common identity with other parents, and thus positive perceptions and self-esteem (Booth & Booth, 1995), and can also instil satisfaction and pride (Edmonds, 2000). In a different context, O’Hara and Martin (2003) in their retrospective outcome study of English and Bangladeshi mothers and father with learning disabilities, found that although it is cultural practice for Bengali people to see their disabled children get married as it serves to ‘strengthen social identity, permitting the person with learning disabilities to adopt adulthood’ (p.23), this was not necessarily an empowering and supportive position for the parent with learning disabilities as the maternal grandmother often took over as main carer for the child, leaving the mothers ‘to struggle to find a role in caring for their children’ (p.22). They concluded that specialist learning disability services may have a role in assessing the impact of disability on parenting and in empowering people with learning disabilities to have a more prominent role all aspects of child care.

Effects on children of having a parent with learning disabilities

Genetics

There is an assumption that women with learning disabilities will have children who will also have learning disabilities, which is not necessarily the case (Tymchuk, et al., 1987). The current consensus is that while rates of learning disabilities will be higher amongst children of parents with learning disabilities, particularly where both parents are learning disabled, the average IQ of such children will show a regression to the mean (Tymchuk et al., 1987). However, the role of socio-economic factors, such as impoverished environments and the effects of a more restrictive style of parenting question the extent to which heredity is responsible for lower IQs (Dowdney & Skuse, 1993) and thus caution is needed in interpreting the effects of genetics and heredity.

Risks of child maltreatment and abuse

It is rare for parents with learning disabilities to intentionally harm their children (McGaw & Newman, 2005). Children are more likely to be at risk of abuse due to ‘unintentional neglect’, in other words parents not knowing what child care tasks to engage in (Tymchuk & Andron, 1994), and, sadly, abuse is more likely to be perpetrated by someone known to the mother than the mother herself. McGaw, Scully and Pritchard (2010) set out to identify the elements that characterised high-risk as opposed to low-risk parents with learning disabilities. They found that contrary to popular perception, the IQ levels of the main parent, parental age, employment, relationship status, valued support, amenities and the parents’ own perception of need were not significant. Instead, looking specifically at mothers, there were four factors particularly associated with high risk: childhood trauma (such as emotional abuse or physical neglect) in their own life histories; their own special needs in addition to their learning disabilities (particularly physical disability); raising a child with special needs; and certain characteristics of any male partners, such as them having a higher IQ and/or histories of antisocial behaviour and criminal activity such as sexual offense, domestic violence and substance misuse.  Other studies such as Sobsey (2000) and Wilson and Brewer (1992) have also reported that women with learning disabilities are four to ten times more likely to experience physical violence, sexual violence and homicide from their spouses or sexual partners than women without learning disabilities. McGaw, Scully and Pritchard (2010) commented that in their study, women with learning disabilities appeared to be vulnerable in their choice of male partners. Compatibility of the parents was most likely if they both had learning disabilities and this was associated with better outcome and less risk to their children. However, they urged caution in the interpretation of these findings because in some cases male partners without learning disabilities can offer a positive influence on the couple relationship.

The removal of children

The number of parents with learning disabilities who have their parental rights terminated is disproportionately high when compared to the general population (Booth, Booth & McConnell, 2005; McConnell, Llewellyn & Ferronato, 2000). It has been asserted over many years that between 40 and 60 per cent of children are removed from parents with learning disabilities and that it is not a question of if they will be removed but when (Booth & Booth, 1994; Booth 2000).  There is a 10 per cent chance of children being removed immediately after birth and child protection proceedings are prone to rapid decisions (Booth & Booth, 1994). Court studies in the UK, USA and Australia suggest that parents with learning disabilities are 15 to 50 times more likely than other parents to have their children removed and placed in care (Booth, Booth & McConnell, 2005a; Booth, Booth & McConnell, 2005b; Llewellyn, McConnell & Ferronato, 2002). In England, the first national survey of adults with learning disabilities in 2003/4 found that one in 15 of the 2,898 adults interviewed had children (i.e. 7 per cent) but 48 per cent of the parents were not currently looking after them (Emerson, Malam, Davies & Spencer, 2005). In their review of positive practice in supporting parents with learning disabilities across the UK, Tarleton, Ward and Howarth (2006) came to similar conclusions. They observed that, ‘there has been a noticeable increase in services, and initiatives, aimed at supporting adults with learning difficulties [sic] and their children’, but in spite of such changes and more positive attitudes towards people with learning disabilities, ‘the numbers of children who are removed…remain distressingly high’ (p.88). They also underline that parents with learning disabilities often enter the child protection system simply because it is assumed that they will neglect their children, though there is no evidence to support this. Instead, it has been argued that it is often the case that if there is neglect, it is more likely to be due to poor professional practice, services and support which may prevent people with learning disabilities from looking after their children (Booth & Booth, 1994). Also, there is an assumption that parents’ cognitive impairments will lead to poor parenting rather than focusing on the impact of social and economic deprivation (which was also commented on by Booth and Booth in 1994). Judgments about parental competence may be difficult to determine (Cleaver, Walker & Meadows, 2004) and there may be multiple risk factors which could potentially influence child outcomes (McGaw, Scully & Pritchard, 2010).

There is limited research on the parents with learning disabilities’ experiences of the removal of their children with the notable exception of three studies, described in turn. Booth and Booth (1994) looked at 20 families where the parents had learning disabilities. They reported that 14 of these families had one or more of their children placed in care at some point, and 12 had a child in permanent care. Of these, eight were removed from birth and the rest were removed between the ages of one to seven years. They stressed that they did not wish ‘to question the rights and wrongs of the decision to remove the children’ (p.130) but argued that the decisions were usually presented from the professional’s perspective, which tended to ‘highlight the inadequacies of the parents at the expense of their ordinary human feelings’ (p.131).

The two other studies have attempted to alter this imbalance by focusing on the impact that these decisions have on parents. Booth and Booth (2006) presented stories of three mothers whose children had been involved with care proceedings, and who described in their own words their experiences. Baum and Burns (2007) produced an in-depth study of eight mothers with learning disabilities who had lost custody of their children, and found that concerns about parenting tended to be raised by other people rather than the parents themselves. Many of the women said that they felt bullied and victimised by the process of their children’s removal and complained that they did not understand the process. All of the women blamed a violent partner or social worker for what had happened, whilst some of the women also blamed their ‘learning disabilities’. All stated that they had received inadequate support from both family and professionals before and after their children were removed. Many of the women described a lack of emotional support to help them with their grieving, and all felt intense feelings of loss. The psychological impact of this seemed to reinforce their feelings of powerlessness and brought the salience of their learning disabilities into focus.

Services

Services across the UK are varied, with few offering specialist assessment and support for parents with learning disabilities, and some offering virtually nothing at all (Tarleton, Ward & Howarth, 2006; Baum, Gray & Stevens, 2011). It is also unclear which service (i.e. child or adult) should fund support, whether there should be pooled budgets, and whether it is financially feasible for funding to be long-term (Baum, Gray & Stevens, 2011).

Three key reports in the Twenty-First Century have helped stakeholders to gain a better understanding of the support needed for parents with learning disabilities and have guided local service provision in many cases. The main findings of each will be summarised in what follows. A Jigsaw of Services (Goodinge, 2000) inspected services across the UK for all disabled parents (including those with learning disabilities) and found a lack of co-ordination, failure of professional collaboration and a gender bias towards women.  Support services tended to be reactive and crisis-driven while critical decisions about whether children should be removed ‘could be made on inappropriate or inadequate information’ (p.6). Finding the Right Support? (Tarleton, Ward & Howarth 2006) set out to map the issues confronting parents and professionals in this area, along with strategies for positive practice. Its key findings indicated that there were a wide variety of agencies and professionals engaging with parents with learning disabilities, such as raising the awareness of their support needs with non-specialist services, but there was room for improvement – in particular, more effective flexible support, accessible information during child protection and judicial proceedings, training for mainstream and learning disabilities services, and the development of good practice at a national policy level.

Good Practice Guidance on Working with Parents with a Learning Disability (Department of Health & Department for Education and Skills, 2007) set out to help services to improve their support to parents with learning disabilities by identifying five features of good practice - clear and co-ordinated referral and assessment procedures and processes; support based on assessments of parents’ needs and strengths; long-term support where necessary; accessible information and communication; and access to independent advocacy. In terms of the kinds of services offered, it recommended consideration of both the role of mainstream services and the development of a range of specialist services.  The Good Practice Guidance highlights the need for 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 resourced; counselling and therapeutic services, and self-advocacy/ self-help groups.

All the reports mentioned so far are generic and are not aimed at a particular profession. Additional guidance has been produced for clinical psychologists, and for midwives and nurses, and this will be described in what follows. Clinical psychologists who specialise in the area of learning disabilities are often requested to assess parents with learning disabilities either for legal purposes or to assist mainstream professionals in their interventions. They have developed specific guidance to aid them with this task, particularly as regards the assessment procedure, the tools required to conduct the assessment, and what needs to be included in the assessment report (Baum, Gray & Stevens, 2011).

Finally, it should be noted that the Royal College of Nursing published guidance for midwives and nurses in 2007 on Pregnancy and Disability (Royal College of Nursing, 2007) which usefully describes four case studies highlighting the particular issues for health workers working with women with physical, sensory or learning disabilities and those with long-term mental illness; and also provides practice guidance on how to remove barriers for women with specific impairments explored in each case study.

It is perhaps fair to say that whilst there have been very useful surveys and inspections, legislation and social policy in recent years, the investment in services to support these families remains patchy across the UK. There have been some innovative examples of good practice, and of particular note is the special parenting service in Cornwall.  But it is still the case that large numbers of children are removed from learning disabled parents, with the rate of removal being remarkably similar to what it was in the 1990s (Emerson et al., 2005). In addition, sensitivity around removal still needs to be improved, with greater consideration taken in terms of the impact on parents (Baum & Burns, 2007; Chinn, 2012). Under the Health and Social Care Act (2008) and the Equality Act (2010), it is now a statutory requirement that public sector agencies make reasonable adjustments to their practice to make them accessible and effective for people with learning disabilities (Department of Health, 2012). Accordingly, it is likely that there will be fewer specialist services in the future. Therefore, training for mainstream staff working with learning disabled parents and parents–to-be is imperative if the latter’s needs are going to be met in an anti-discriminatory way. A training pack, Enabling Parenting with Support (Chinn, 2012), has been designed to improve the skills of a all those staff ‘who are likely to be working directly with learning disabled parents in the key areas of assessment, communication and teaching parenting skills’ (p.1), and this gives invaluable guidance for facilitators in providing a comprehensive teaching programme.

An exciting new initiative set up by Shared Lives South West was described in The Guardian on 21^st July 2012, whereby a young woman with learning disabilities, Lisa, went to live with a Shared Lives carer, Dawn, and her family who were interested in supporting her in their own home.  Lisa discovered that she had become pregnant a few days after she moved in, and Dawn helped Lisa to develop her parenting skills with the support of the Special Parenting Service in Cornwall. Within a few months of the birth of her child, Lisa was able to move into her own flat with her baby near to her Shared Lives carer and children’s services were no longer involved with her life. The Guardian reported that Lisa was doing well with the support of Dawn and her family. This story was also discussed and debated on BBC Radio 4 Woman’s Hour on 28th August 2012 ( or ‘Chapter: Mother with learning disabilities are parents with learning disabilities and their children given a fair chance to stay together as a family)’.

Suggested further reading

Baum, S., Gray, G., & Stevens, S. (2011). Good Practice Guidance for Clinical Psychologists when Assessing Parents with Learning Disabilities. Leicester: The British Psychological Society.

Booth, T. & Booth, W. (1994). Parenting Under Pressure: Mothers and Fathers with Learning Difficulties. Buckingham: Open University Press.

Booth, T. & Booth, W. (1998). Growing up with Parents who have Learning Difficulties. London: Routledge.

Department of Health & Department for Education and Skills (2007). Good Practice Guidance on Working with Parents with a Learning Disability. London: HMSO.

McGaw, S. & Newman, T. (2005). What Works for Parents with Learning Disabilities? Essex: Barnado’s.

Norah Fry Research Centre (2009). Supporting Parents with Learning Disabilities and Difficulties. Stories of Positive Practice. Bristol: Norah Fry Research Centre

Tarleton, B., Ward, L. & Howarth, J. (2006). Find the right support? A review of issues and positive practice in supporting parents with learning difficulties and their children. London: the Baring Foundation.

Useful links and resources

CHANGE. You and Your Baby 0 – 1. www.changepeople.co.uk

CHANGE. You and Your Baby. Picture Bank. www.changepeople.co.uk

CHANGE. You and Your Little Child 1 – 5. www.changepeople.co.uk

CHANGE. You and Your Little Child 1 – 5. Picture Bank. www.changepeople.co.uk

CHANGE. Planning a Baby. www.changepeople.co.uk

CHANGE. My Pregnancy, My Choice. www.changepeople.co.uk

Chinn, D. (2012) Enabling Parenting with Support: Effective working with parents with learning disabilities. Brighton: Pavilion publishing.

McGaw, S. (2007). Parent Assessment Manual (2^nd Edition). Truro: Pill Creek Publishing.

McGaw, S. (1995). “I want to be a good parent…” British Institute of Learning Disabilities.

McGaw, S. (1995). Children need healthy food. Set 2. British Institute of Learning Disabilities.

McGaw, S. (1995). Children need to be clean, healthy and warm. Set 3. British Institute of Learning Disabilities.

McGaw, S. (1995). Children need to be safe. Set 4. British Institute of Learning Disabilities.

McGaw, S. (1995). Children need love and to learn right from wrong. Set 5. British Institute of Learning Disabilities.

Norah Fry. The Working together with Parents Network.

References

Aunos, M. & Feldman M. A. (2002). Attitudes towards sexuality: sterilisation and parenting rights of persons with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 15, 285 -296.

Bakken, J., Miltenberger, R. G. & Schauss, S. (1993). Teaching parents with mental retardation: knowledge versus skills. American Journal on Mental Retardation, 97, 405 – 417.

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.109 – 123). 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, 3 – 14.

Baum, S., Gray, G., & Stevens, S. (2011). Good Practice Guidance for Clinical Psychologists when Assessing Parents with Learning Disabilities. Leicester: The British Psychological Society.

Booth, T. (2000). Parents with learning difficulties, child protection and the courts. Representing Children, 13, 3, 175-188.

Bratlinger, E. A. (1985). Mildly mentally retarded secondary students’ information about sexual and attitudes towards sexuality and sexuality education. Education and Training of the Mentally Retarded, 20, 99 – 108.

Booth, T. & Booth, W. (1994). Parenting Under Pressure: Mothers and Fathers with Learning Difficulties. Buckingham: Open University Press.

Booth, T. & Booth, W. (1995). Unto us a child is born: the trials and rewards of parenthood for people with learning difficulties. Australia and New Zealand Journal of Developmental Disabilities, 20, 1, 25 – 39.

Booth, T., Booth, W., & McConnell, D. (2005a). The prevalence and outcomes of care proceedings involving parents with learning difficulties in the Family Courts. Journal of Applied Research in Intellectual Disabilities, 18, 7 – 17.

Booth T., Booth, W. & McConnell, D. (2005b). Care Proceedings and parents with learning difficulties: Comparative prevalence and outcomes in an English and Australian Court Sample. Child and Family Social Work 10, 353-360.

Booth, T. & Booth, W. (2006). The uncelebrated parents: stories of mothers with learning difficulties caught in the child protection net. British Journal of Learning Disabilities 34, 94 - 102.

CHANGE. You & Your Baby 0-1 (2010; 2012). www.changepeople.co.uk

CHANGE. You and Your Little Child 1- 5 (2005). www.changepeople.co.uk

CHANGE.  My Pregnancy, My Choice. (2008). www.changepeople.co.uk

Chinn, D. (2012). Enabling Parenting with Support: Effective working with parents with learning disabilities. Brighton: Pavilion Publishing.

Craft, A. (1993). Parents with learning disabilities: an overview. In A. Craft (Ed.), Parents with Learning Disabilities (pp. 5 – 12). Kidderminster, BILD.

Cleaver, H., Walker, S.  & Meadows, P. (2004). Assessing Children’s Needs and Circumstances. London: Jessica Kingsley.

Dowdney, L., & Skuse, D. (1993). Parenting provided by adults with mental retardation. Journal of Child Psychology and Psychiatry, 34, 1, 25 – 47.

Department of Health (2000). Framework for the Assessment of Children and Need and Their Families. London: The Stationary Office.

Department of Health (2012).Reasonably Adjusted? Mental Health Services and Support for People with Autism and People with Learning Disabilities. London: Department of Health, Mental Health Network NHS Confederation and National Development Team for Inclusion.

Department of Health & Department for Education and Skills (2007). Good Practice Guidance on Working with Parents with a Learning Disability. London: HMSO.

Edmonds, J. (2000). On being a mother: A positive identity in the face of adversity. Clinical Psychology Forum, 137, 21-25.

Emerson, E., Malam, S., Davies, I., & Spencer, K. (2005). Adults with learning difficulties in England 2003/4. London: NHS Health & Social Care Information Centre.

Equality Act 2010.

Feldman, M.A.  (1994). Parenting education for parents with intellectual disabilities: a review of outcome studies. Research in Developmental Disabilities, 15, 299 – 332.

Feldman, M. A. Towns, F., Betel, J., Case, L., Rincover, A. & Rubino, C. A. (1986). Parent education II: increasing stimulating interactions of developmentally handicapped mothers. Journal of Applied Behaviour Analysis, 19, 23 – 37.

Feldman, M. A., Case, L., Rincover, A., Towns, F. & Betel, J. (1989).  Parent education project III: increasing affection and responsitivity in developmentally handicapped mothers: component analysis, generalization, and effects on child language. Journal of Applied Behaviour Analysis 22, 211 – 222.

Goodinge, S. (2000). A Jigsaw of services: Inspection of services to support disabled adults in their parenting role. London: Department of Heath Publications.

The Guardian (2012). I didn’t want them to take my baby. Saturday 21^st July.

Hur, J. (1997). Review of research on parenting for parents with intellectual disability: methodological issues. International Journal of Disability, Development and Education, 44, 2 147 – 162.

Keltner, B.  Wise, L. & Taylor, G. (1999). Mothers with intellectual limitations and their 2 year old children’s developmental outcomes. Journal of Intellectual and Developmental Disabilities, 24, 1, 45 – 58.

London Network of Parents with Learning Difficulties (2009).

Llewellyn, G.  & McConnell, D (2002). Mothers with learning difficulties and their support workers. Journal of Intellectual Disability Research, 46, 1, 17 – 34.

McConnell, D. Llewellyn, G.  & Ferronato, L. (2000). Parents with a Disability and the NSW Children’s Court. Sydney: University of Sydney.

McGaw, S. (1993).  Working with parents on parenting skills. In A. Craft (Ed.), Parents with Learning Disabilities (pp. 13 – 19). Kidderminster: BILD.

McGaw, S.  (1998). Working with parents who happen to have intellectual disabilities. In E. Emerson, C. Hatton. J. Bromley, & A. Caine (Eds.), Clinical Psychology and People with Learning Disabilities (pp. 193 – 209). Chichester: Wiley.

McGaw, S. (2007) Parent Assessment Manual (2^nd Edition). Truro, Pill Creek Publishing.

McGaw, S.  & Newman, T. (2005). What Works for Parents with Learning Disabilities? Essex: Barnardo’s.

McGaw, S. & Sturmey, P. (1993). Identifying the needs of parents with learning disabilities: A review. Child Abuse Review, 2, 101 – 117.

McGaw, S., Ball, K. & Clarke, A. (2002). The effect of group intervention on the relationships of parents with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 15, 354 – 366.

McGaw, S., Beckley, K., Connolly, C. and Ball, K. (1999). Parent Assessment Manual. Truro: Trecare NHS Trust.

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, 699 – 710.

Murphy, G. (1996). Services for Parents with Learning Disabilities. Tizard Learning Disability Review, 1, 1, 29 – 32.

Health and Social Care Act 2008

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, 18 – 24.

Royal College of Nursing (2007). Pregnancy and Disability. RCN guidance for midwives and nurses. London: The Royal College of Nursing.

Sobsey, D.  (2000). Faces of violence against women with developmental disabilities. Impact, 13, (3), 2 – 27.

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: the Baring Foundation.

Taylor, E. & Rogers, J. W. (2005). Practitioner review: Early adversity and developmental disorders. Journal of Child Psychology and Psychiatry and Allied Disciplines, 46, (5), 451 – 467.

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This article was first published on the site in 2014.