What we do Information Hub Helping vulnerable families Parents with learning disabilities PLEASE NOTE: This page is for information purposes only. We do not offer support or advice over the phone or by email. If you need to talk to someone, we suggest: CHANGE MENCAP Learning disabilities are defined as: “A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence); with a reduced ability to cope independently (impaired social functioning); which started before adulthood, with a lasting effect on development”. (Department of Health, Valuing People 2001) Many people who have a learning disability prefer to use the term “learning difficulty”. A person with an IQ of less than 70 can be diagnosed as having a learning disability. Around 7% of adults with a learning disability are parents, but most have a mild to borderline impairment, which may make it difficult to identify them as they will not have a formal diagnosis. Around 40% of parents with a learning disability do not live with their children. The children of parents with a learning disability are more likely than any other group of children to be removed from their parents’ care. Parents with a learning disability are often affected by poverty, social isolation, stress, mental health problems, low literacy and communication difficulties. How can the Baby Buddy app help? Best Beginnings' Baby Buddy app is the perfect tool for mothers with learning disabilities. The app helps and supports mothers by: having information in bitesize chunks, with simple and clear language having the option to have speech read aloud including short videos on key topics such as breastfeeding and nappy changing including a dictionary where mothers can look up the meaning of words they hear in appointments and may not understand being a resource that the mothers have access to 24/7 Issues in pregnancy The babies of mothers with learning disabilities are at increased risk of poor birth outcomes, including: Premature birth (28%) Low birthweight (22%) One third of pregnant woman with a learning disability report moderate to severe levels of stress, anxiety and depression. People with learning difficulties are often seen as childlike and face opposition to their desire to parent or dismay at the announcement of a pregnancy; some parents face pressure for an abortion. Issues for antenatal care and education Women with learning disabilities are likely to have difficulty accessing good quality antenatal care that meets their needs, including: extra time and support for appointments the opportunity to have information repeated information about pregnancy and birth choices, and about parenting, that is presented in a form they can understand and is empowering involvement of family carers and advocates understanding the complexity of consent issues liaison with other agencies involved Some women with learning disabilities may avoid maternity care because of lack of confidence, negative staff attitudes, lack of clear explanations of what is going on, inaccessible leaflets, and fear of the involvement of social services. Antenatal education is vital for parents with a learning disability who may find themselves having their parental competence assessed soon after birth by social workers, before they have had time to develop and practice their skills and confidence as parents. However, most parents with learning difficulties do not access mainstream antenatal classes, and might benefit from tailored classes or individual antenatal education. To be inclusive, antenatal classes should: be enabling and empowering focus on ensuring that each person has the opportunity to gain confidence, develop skills and make meaningful relationships be facilitated by someone with a positive attitude to people with learning disabilities present information accessibly, in a format learning disabled people can understand and relate to: resources should be highly visual and words should be in plain English; there should be opportunities to try out practical skills more than once; there should be example role play and modelling promote the transfer of skills learnt to new and different situations, which is a key challenge for people with learning disabilities. Issues for parenting For people with an IQ above 60, IQ is not a predictor of parenting performance, but many parents with learning disabilities face stereotyped beliefs that they could never be good enough parents, such that any parenting difficulties are automatically linked to their learning disability without considering other environmental or social factors. Many parents with a learning disability live under conditions that may contribute to poorer parenting, including poverty, low literacy, poor health, poor mental health, domestic abuse, having grown up in care, and social isolation. In particular, social support (such as living with relatives) contributes to successful parenting. Early intervention improves outcomes. Parents with a learning disability can improve their parenting skills with additional support tailored to their needs. For example childcare skills can be taught through behavioural modelling, using visual manuals and audiotaped instructions, and using simple behavioural instructions. Parents learn more effectively where they are given praise and feedback, and where complex tasks are broken down into simpler parts. Parents with a learning disability face extra scrutiny of their parenting ability, but receive inconsistent advice from different professionals on what constitutes good parenting. Parents with a learning disability may be reluctant to ask for support with parenting issues because of fears that this will raise child protection concerns. Many will have already had a previous child removed into care. Some parents will not be eligible for support from adult learning disabilities teams because their learning disability is not severe enough to qualify. 30-50% of children whose mothers have a learning disability are at risk of poorer development, compared to children from similar socio-economic groups. They are no more likely to be born with a learning disability, but they are more likely to have developmental delays, lower IQ and behavioural problems. Communication issues Comments made by health professionals can be taken at a literal level and therefore the tone may be misunderstood: it is important to avoid jargon and idiom. Women with learning disabilities may not understand or remember the standard information given out to pregnant women, and be very unprepared for labour and birth. Written resources need to have: pictures and colour few words on a page simple words clear ordering of information pictures containing only one item at a time. DVDs are a good way of communicating information. Parents with learning disabilities may be too shy to ask questions or say when they don’t understand, and may be afraid to ask for help with parenting in case that triggers the removal of the child. Parents with learning disabilities may need the same information to be repeated several times. Parents with learning disabilities are well aware when they are being patronised. Key organisations CHANGE https://www.changepeople.org/ An organisation working for the rights of people with learning disabilities. They produce illustrated, easy read books for parents with learning disabilities: My Pregnancy, My Choice; You and Your Baby 0-1; You and Your Little Child 1-5. Working Together with Parents Network (Bristol University) http://www.bristol.ac.uk/sps/wtpn/Professionals supporting parents with learning disabilities and their children. Aims to spread positive practice and to promote policy change, so that parents with learning disabilities and their children can get better support. Includes many resources and a professional network References This page draws on four fully referenced papers: MENCAP (2011). Inclusive support for parents with a learning disability Working Together with Parents Network An introduction to parents with learning difficulties Working Together with Parents Network (2008) Facts and figures about parents with learning disabilities in England Redshaw, M., Malouf, R., Gao, H., Gray, R., (2013). Women with disability: the experience of maternity care during pregnancy, labour and birth and the postnatal period. BMC Pregnancy Childbirth 13, 1–14. Further reading Department of Health, Department for Education and Skills (2007)The English Good Practice Guidance on Working with Parents with a Learning Disability Working Together with Parents Network (2016) Update of the DoH/DfES Good practice guidance on working with parents with a learning disability (2007) Scottish Commission for Learning Disability (2015) Supported Parenting: Scottish Good Practice Guidelines for Supporting Parents with Learning Disabilities Homeyard C, Montgomery E, Chinn D, Patelarou E (2016). Current evidence on antenatal care provision for women with intellectual disabilities: A systematic review. Midwifery, 2016 Jan;32:45-57 Malouf R, McLeish J, Ryan S, et al (2017).‘We both just wanted to be normal parents’: a qualitative study of the experience of maternity care for women with learning disability BMJ Open 2017;7:e015526.