How Adult Social Workers Support Parents with Learning Disabilities?
By Gillian MacIntyre
June 2023
Work on our project “how adult social workers support parents with learning disabilities” has been underway for several months now and during this time we have been learning more about the adult social care landscape in England, as well as getting to grips with some of the challenges of conducting research in a sector where staff are under ever increasing pressure due to rising demands and significant budget constraints.
Before starting out on our field work we had some understanding of the key challenges faced by parents with learning disabilities. Our previous work and a review of the most recent literature (published since 2019) paints an increasingly familiar picture of the lives of parents with learning disabilities. Their lives are often complex and characterised by disadvantage, marginalisation and discrimination. They are over-represented in the child protection system and are less likely to have their children living with them than parents without a learning disability. Literature suggests that professionals sometimes feel unprepared and have limited knowledge about the needs of parents with learning disabilities and that a number of barriers to professional practice remain.
None of the literature that we reviewed looked specifically at the role of adult social workers and this combined with the views of our parents’ advisory group, who were unaware of their entitlements under the Care Act to support with parenting, highlighted to us the necessity of this research. Our intention is to work with social work teams across England identifying five case study sites. These will be different types of local authority and we aim to ensure representation across urban and rural areas as well as trying to encapsulate different demographic characteristics. We are also interested in learning from those areas who have developed a specialist policy to support parents with learning disabilities.
So far, we have collected data across one case study site and have just embarked on data collection in a second site. This has involved carrying out interviews with key stakeholders including service managers, principle social workers and those with responsibility for commissioning. We have also facilitated focus groups using a vignette to discuss possible support options for parents with a formally diagnosed learning disability as well as for parents with a learning difficulty or learning need where diagnosis has been less clear. We have held focus groups with social workers from different types of teams – specialist learning disability teams, generic adult teams and children and families teams. We are also interviewing parents with learning disabilities about their experiences of receiving support from adult services as this is where the significant gap in our knowledge appears to be.
While we had a good understanding about the complexities inherent in the lives of parents we had much less understanding of the complexities surrounding the adult social care landscape. We now have a greater sense of the different ways in which services are configured in different areas and understand that the pathway to receiving support for parents with learning disabilities is not always straightforward. A number of factors appear to influence how and if a parent with learning disability accesses support and from whom. These include different diagnostic criteria, different legislative frameworks and eligibility criteria as well as competing demands for resources. Alongside these structural factors we have also begun to learn more about positive practice characterised by a willingness to learn about the specific needs of parents with learning disabilities and a commitment to focus on the individual and their environment, key features of relationship based practice.
As we continue to learn more about supporting parents with learning disabilities our intention is to provide carefully constructed feedback to each of our case study sites, highlighting key aspects of positive practice to enhance learning across organisations. We also aim to feed into the development of national policy around supporting parents with learning disabilities as well as providing more general guidance for social workers across England.
This is a really exciting project and we feel very grateful to the Local Authorities, Social Workers and parents with learning disabilities who have already given up their time to support our work with the ultimate goal of enhancing future practice. If this sounds like the kind of project that you or your organisation might like to get involved in please do get in touch. It does not require a lot of time commitments and provides a great opportunity to learn and shape future practice.
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.
Disclaimer:
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