The role of adult social care for parents with learning disabilities when a child is no longer in their care

Between 40 and 60 per cent of parents with a learning disability have their children removed. Many parents, with and without learning disabilities, who are in this position have experienced a great deal of abuse in their lives. They are also vulnerable to further abuse. This is no different for those parents with learning disabilities, but they face additional problems.

Although there is no right to support for any parent whose child is permanently removed, in recent years special services have been set up in some areas. The suitability of these services for parents with learning disabilities has not been examined which means we do not know if these parents use the services and the difference, if any, they make to their well-being.

Project aim

This study aims to:

• Record what is known from research and practice about the support - or lack of – that is available to parents with learning disabilities (LD) who have children removed following court proceedings.
• Identify models of practice in local authorities and in specialist services.
• Explore the contact between Adult Social Care and Children’s Social Care over this group of parents by exploring relevant cases.
• Capture the views of parents and advocates on their experiences of removal and the support that was available and / or required at the time and at any future date.
• Estimate the cost of providing and not providing support.

Three considerations will run through this work:

1. to reflect the diversity of this group of parents

2. to contribute to improved practice and thereby improved wellbeing for the parents

3. to make a significant contribution to research on this topic.

There is government guidance on the links that should be made with local authority adult social care departments after a parent with learning disabilities has had a child removed permanently, but many professionals believe this guidance is rarely applied in the way that it should be and that these parents continue to fall through a gap between adult and children’s services.  We want to look at the support that is, or is not available from adult social care and from other agencies for parents with learning disabilities when their children are removed, as well as the cost to society of not providing support.     

How the project will be carried out

The research team will:

1. Establish the existing evidence base by conducting a rapid evidence review of relevant literature and policy.
2. Explore current practice with practitioners in adult and children’s social care, in the NHS/integrated services for people with LD, the courts, researchers and advocates to arrive at a deeper understanding of practice in relation to the provision of support (or not) for parents with LD when their children are removed.
3. Using the data collected during 1 and 2, supported by internet searches, and information from our partner organisations and members of the Advisory Group they will develop a framework to map practice in local authorities across England;  map services that work with parents with LD in general and explore their experience of working specifically with those who have had their children removed.
4. Using the framework they will sample 10 local authorities to develop case studies by carrying out detailed interviews with parents diagnosed with a learning disability as well as, professionals in the voluntary and statutory sectors.
5. Conduct a cost study that shows the saving or cost to society of providing or not providing appropriate support.

Our collaboration partners

• Working Together with Parents Network (WTPN) an organisation that helps professionals working with parents with learning disabilities
• Research in Practice (RIP), an organisation supporting practitioners working with parents who have experienced the removal of their children.
• An expert parents’ group supported by The Elfrida Society.

We also have a Professional Advisory Group with representation from Department for Health and Social Care, Skills for Care, Association of Directors of Adult Social Services (ADASS), Association of Directors of Children’s Services (ADCS); Office of the Chief Social Worker;  Department for Education; Learning Disability England; Mencap; Family Rights Group, BASW, health trusts and the judiciary.

The research team will be supported by an International Review Group consisting of individuals with experience in this subject who will provide advice and reflection at various stages of the project. The following have agreed to be members of this group:

• Dr Susan Collings, Research Fellow and Program Lead, Disability and Child Protection Research Centre for Children and Families, University of Sydney, Australia
• Dr Tommie Forslund, Department of Psychology, Uppsala University, Sweden
• Dr Ayelet Gur, Senior Lecturer, Tel-Hai College, Israel
• Daniel Little, Director, Department of Family and Children’s Services, Social Services Agency, County of Santa Clara, California, USA
• Dr Anthon Sand Jørgensen, Lecturer in Social Work, VIA University College, Denmark
• Dr Wouter Vanderplasschen, Associate Professor, Department of Special Needs Education - Recovery and Addiction research cluster, Ghent University, Belgium

Potential benefits of this project

This research has the potential to contribute to improved communication across adult and children’s social care. Initial research during the preparation of the application for this study identified an unacceptably large gap between adult and children’s services in supporting parents with LD who have their children removed, which should be addressed by examining current practice to address what appear to be unjustifiable local variations and identifying pathways to embed more consistent approaches. The failure to do so risks the well-being and isolation of parents and the probability of increased costs to the State in the future.

The study is funded by NIHR School of Social Care Research awarded to the NIHR Policy Research Unit in Health and Social Care Workforce at King’s College London. It was adopted by NIHR ARC South London in June 2022 and will be completed by December 2023.