By Beth Tarleton and Gillian MacIntyre
The lives of parents with learning disabilities have been given increasing attention by policy makers and practitioners in recent years and there has been a growing awareness of their particular support needs and the barriers they face in parenting their children.
We have both carried out research in this area for around 20 years and during that time we have witnessed changes in awareness, knowledge and understanding of, and attitudes towards, parents with learning disabilities. We believe that this is partly the result of the prominence given to the rights of people with disabilities to have a family life and children, as set out in the UN Convention on the Rights of Persons with Disabilities. This has been accompanied by a growing body of research on the lives of families with learning disabilities and there are a number of things we now know about these families. Firstly, they are likely to be over-represented in the child protection system and are much less likely to have their children living with them. Secondly, these families are likely to face a number of barriers that prevent them from undertaking their parenting role effectively and thirdly, and perhaps most importantly, we know that parents with learning disabilities can, and do, parent their children when appropriate support is in place.
We also have a really good sense of what the right support looks like for parents with learning disabilities and guidance around supported parenting is available for practitioners across the UK (see link below). Good support often involves early identification and intervention at an early stage to work in a preventative manner with families to help develop and support parenting capacity. Good practice also involves paying attention to communication, thinking about how complex information can be shared with parents in a clear and accessible way. Support via parenting programmes to help parents develop their parenting skills can also be useful, particularly when these have been adapted to suit the needs of people with learning disabilities. We know that parents with learning disabilities benefit from having tasks broken down and repeated and, ideally, that support should take place in their own home or in an environment in which parents are familiar. The assessment of parenting capacity should take place using specialist assessment tools that take the needs of parents with learning disabilities into account. When assessing parenting capacity, parents should be made aware that an assessment is taking place and the assessment should take place over an extended period of time to allow parents to develop their skills. Parents with learning disabilities also benefit from additional support from advocacy services who can support parents to understand complex information as well as ensuring that parents have the opportunity to have their voices heard in a range of different settings.
We know that often professional involvement in the lives of parents with learning disabilities centres around child protection concerns. At this stage, statutory timescales often mean that parents do not have the opportunity to develop or demonstrate parenting capacity. Much of the research that has taken place in this area has centred around the child protection process and has considered the role of children and families social workers. Other research has focused on the role of nurses, midwives and advocacy workers in supporting parents with learning disabilities. This leaves a gap in our knowledge around the role of adult and/or learning disability social workers in supporting parents with learning disabilities. We know very little about how they understand and experience their role including the skills and knowledge base they draw on to work with and support parents with learning disabilities.
To address this gap in our knowledge we have been awarded funding by NIHR SSCR to explore in more detail the role of adult and learning disability social workers working with parents with learning disabilities. We hope to identify areas of good practice that we can learn from, developing shared learning and development across the sector. We will work with Research in Practice and SpeakUp Rotherham to develop:
- A focused briefing document for LAs regarding the development of policies/protocols to support parents with LD which also details the knowledge social workers need and the training they require.
- An outline policy document on support for parents with LD which can be adapted and used by LAs.
- Run, with Research in Practice, two half day webinars.
- An easy read briefing and short film for parents about getting support in their own right.
We will do this by engaging with a number of key stakeholders including parents, social workers and policy makers. We will approach this in a range of different ways including a policy analysis, focus groups and interviews to better understand the role of adult social workers in this complex area of practice. We look forward to working with our colleagues in the practice community over the next year or so.
Beth Tarleton is a Senior Lecturer at the School for Policy Studies, University of Bristol. Beth is co-ordinator of the Working Together with Parents network which is a free network that supports professionals working with parents with learning difficulties/learning disabilities. Beth has many years of experience of carrying out research with parents with learning disabilities.
Gillian MacIntyre is a Senior Lecturer in Social Work at the University of Strathclyde. She has many years of experience of carrying out research with parents with learning disabilities.
This blog reports on independent research funded by the National Institute for Health & Care Research, School for Social Care Research. The views expressed in this publication are those of the authors and not necessarily those of the NIHR SSCR, the National Institute for Health & Care Research, nor the Department of Health and Social Care. About NIHR SSCR | NIHR SSCR
- Good Practice Guidance from the Working Together for Parents Network can be found here
- Scottish good practice guidance on supported parenting can be found here
- The Working Together with Parents Network: WTPN | School for Policy Studies | University of Bristol
- Successful professional practice when working with parents with learning difficulties: GTC SUMMARY REPORT 16.5.2018 designed.pdf (bristol.ac.uk)
MacIntyre G, Stewart A, McGregor S. The double-edged sword of vulnerability: Explaining the persistent challenges for practitioners in supporting parents with intellectual disabilities. J Appl Res Intellect Disabil. 2019 Nov;32(6):1523-1534. doi: 10.1111/jar.12647. Epub 2019 Jul 18. PMID: 31318123.
Tarleton, B., Turney, D. Understanding ‘Successful Practice/s’ with Parents with Learning Difficulties when there are Concerns about Child Neglect: the Contribution of Social Practice Theory. Child Ind Res 13, 387–409 (2020). https://doi.org/10.1007/s12187-019-09682-y