Disability

DisabIlITY AND LEAVING Care Thematic Interest Group

Convener: Prof Berni Kelly (Queen’s University Belfast, Northern Ireland)

Welcome to the INTRAC thematic interest group on disability and leaving care.

Established in June 2020, the purpose of this thematic interest group is to bring together researchers with a particular interest in the experiences of disabled care leavers.

In recognition of the varying definitions and models of disability used in different service, country and cultural contexts, a broad definition of disability is applied that is inclusive of a range of physical, mental, intellectual or sensory impairments which may or may not have been formally diagnosed and other disability-related categories, such as, special educational needs.

The group is broad-based and interdisciplinary, with a wide focus, including:

  • Regional and national policy impacting on support for disabled care leavers across childcare, leaving care and disability fields.
  • The intersectional needs of disabled care leavers across a range of domains including (but not limited to) gender, type of impairment and culture.
  • The interfaces between childcare, leaving care and disability services impacting on support for disabled care leavers.
  • The transition experiences of disabled care leavers, including those with borderline/mild levels of impairment who may not meet the criteria for adult disability services.
  • The support needs of care leavers with different experiences of impairment and disability and how well these are met.
  • The identities of disabled youth in transition from care as they negotiate inclusion in family, community and society.
  • Post-care outcomes for disabled care leavers including engagement in further and higher education, access to appropriate accommodation, health and wellbeing, and employment opportunities.

The aims of the group are to:

  1. Provide a forum for dialogue between members of INTRAC and/or CoRiT who have a shared interest in the intersection of disability and care-leaving
  2. Enable these members to share their published work and ongoing research with other interested members;
  3. Provide opportunities to discuss methodological approaches and theoretical perspectives relevant to researching the experiences of disabled care leavers;
  4. Explore national and international comparisons across diverse cultural and socio-political contexts;
  5. Develop collaborative international research links and explore potential collaborative funding applications; and
  6. Organise international meetings and seminars for group members.

Activities:

The group hosts at least three online seminars annually and invites presentations from existing and new members in this field.

Previous presentations include:

  • ‘Institutional Ethnography (IE): A brief introduction’ presented by Ingri Hanne Brænne Bennwik, VID Specialized University, Norway on 21 January 2021.
  • ‘Exploring Disability Theory and Care Leaving’ presented by Professor Berni Kelly, Queen’s University Belfast on 26 March 2021.
  • ‘Life course theory, disability and leaving care: Foster parents’ views on aftercare’ presented by Professor Inger Oterholm, VID Specialized University on 11 June 2021.
  • ‘Young people leaving care with intellectual disabilities or mental health problems’ presented by Carme Monsterrat and Gemma Crous, University of Girona and University of Barcelona on 10 January 2022.
  • ‘Healthcare Access among Alabama Youth Transitioning from Foster Care with Disabilities’ presented by Leah Cheatham and Natasha Smith, University of Alabama on 5 April 2022.
  • ‘Assessing Homelessness and Incarceration Among Youth Aging Out of Foster Care, by Type of Disability’ presented by JoAnn Lee and Gil Gimm, George Mason University on 27 October, 2022.
  • ‘The ‘others’: Support for disabled young people leaving care in Norway, presented by Ingri Hanne Brænne Bennwik, VID Specialized University, Norway on 26 June 2023.
  • ‘Headphones, Odd Shoes & A Second Chance at Life’ presented by Deborah Irwin on 2 October 2023. Deborah shared the findings of an EPIC-funded study on disabled children in care and leaving care in the Republic of Ireland. Young people reported some positive experiences of care and support but also identified gaps in service provision and areas for improvement. Participated shared examples of misrecognition, false assumptions related to their disability and issues relating to care placement availability and accessibility. A central theme in the findings was the challenge of having their voices heard and the need to fight for access to essential support services. A range of recommendations were outlined to inform the wider policy agenda. For the full report please follow this link: EPIC report
  • ‘EUSARF Symposium’ presented by TIG members on 15 February based on their EUSARF 2023 papers:
    1. ‘Association of Independent Living Service Receipt and Disability Type among Foster Youth in the U.S.’ presented by Gil, Melissa & JoAnn
    2. ‘I did not dare to tell them what I needed: Anti-oppressive perspectives on support for disabled young people leaving care’ presented by Ingri
    3. ‘Promoting Health Equity through Healthcare Access among Youth Transitioning from Foster Care with Disabilities’ presented by Leah and Natasha
  • ‘Children in care and care leavers with a disability or long-term health condition: numbers and experiences: Insight paper summary’ presented by Claire Baker, UK on 10 June 2024. Claire shared findings from two projects on subjective wellbeing highlighting the impact of varying definitions of disability and self-report measures on statistical data on disability for this population, with potential under-reporting of disability in Local Authority returns. Lack of accurate, publicly available data on disabled care-leavers hampers the opportunity to link data with other statistical returns such as children in need or census data in the UK. A prevailing focus on transition to independence ignores care leavers’ experiences of trauma need for ongoing support alongside the impact of service categorisation where disabled care leavers can be considered outside the realm of mainstream care leaver services due to ‘specialist’ disability related needs. Findings emphasise the importance of listening to the views of disabled care leavers when we consider how to define/record disability and incorporating disability into the pathway plan and professional practice with care leavers.
  • A ‘County Context’ workshop was held on 18 April with TIG members presenting a brief overview of their country context focusing on two themes:
    (1) policy provision for disabled care leavers (which may cut across care leaving, health and/or disability policy); and
    (2) data available on disability among the care leaver population.
    The 5 country contexts considered were: Norway, United States (and State of Alabama), United Kingdom and South Africa. The group discussed the emerging themes including policy gaps, fragmentation of support and similar/different provisions across contexts. This group will now take forward plans to co-write papers based on these two core themes during 2024/25.

  • ‘Transitional Journey of South African Care-Leavers with Intellectual Disabilities’ presented by Dr Wendy Mupaku, University of Johannesburg on 1 October 2024
    Wendy presented on her study involving interviews with six disabled care leavers and their carers in 5 waves of data collection over an 18-month period. This study makes a unique contribution to research on the experiences of disabled care leavers in terms of context (South Africa), design (longitudinal) and focus (also capturing carer perspectives). Findings highlight the importance of person-centred transition planning, extended care and relational interdependence for disabled care-leavers. Formal and informal support for carers is also emphasised to enable ongoing aftercare and support for disabled care-leavers.  To read more about this research, please see:

    • Mupaku, W. M. (2024). Preparation of intellectually disabled and/or autistic young people for leaving care in South Africa. Social Work/Maatskaplike Werk, 60(3), 530-553.
    • Mupaku, W. M. et al. (2021). Transitioning to adulthood from residential childcare during COVID‐19: experiences of young people with intellectual disabilities and/or autism spectrum disorder in South Africa. British journal of learning disabilities, 49(3), 341-351.
  • ‘Residential care in the community: Perceptions of care leavers with disabilities in Portugal’ presented by Lúcia Canha, Laura Owens & Ricardo Rodrigues, University of Lisbon on 9 December 2024
    This presentation shared findings from a study examining residential care for disabled care-leavers in two residential care settings. Findings highlight the importance of: developing independent living skills, bolstering relational support and enabling decision making and future planning. To read more about this research, please see: Canha, L. et al. (2024). Youth with disabilities in residential care in the community: Perceptions and experiences in the transition period. Children and Youth Services Review, 161, 107591.
  • ‘Administrative data on disability and the child welfare system in the United States’ presented by Erin McCauley, UC San Francisco & and Co-Director of the National Data Archive on Child Abuse & Neglect on 24 March 2025.
    Erin shared information about multiple U.S. data sources available from the National Data Archive on Child Abuse and Neglect (NDACAN) and data linkage, including the National Youth in Transition Data (NYTD), the Adoption and Foster Care Analysis Reporting System (AFCARS), and the National Child Abuse and Neglect Data System (NCANDS). Erin also shared findings from a recent project drawing on these data on: Differential Risks: How Disability Shapes Risk in the Transition to Adulthood for Youth who Age Out of Foster Care and outlined her ongoing work relating to disability within the Fatal Encounters open source dataset. To read more about research related to this presentation, please see:

    • McCauley, E. (2021). Differential risks: How disability shapes risk in the transition to adulthood for youth who age out of foster care. Children & Youth Services Review, 131, 106293.
    • McCauley, E. J. (2023). How do academic and career services affect employment, education, and disability benefit receipt in the transition to adulthood for youth with disabilities who have aged out of foster care?. Journal of public child welfare, 17(4), 894-923.
  • Writing groups focused on international policy; data and research literature on disability and leaving care. Throughout 2024/25 a writing sub-group of TIG members from the United States, Norway, United Kingdom and Australia have been meeting bi-monthly to collaborate on the development of two papers. The first paper (led by Berni Kelly) presents a cross-country analysis of care-leaving policy and the extent to which disability issues are considered. The second paper explores available data on disability and care-leaving in each country (led by Leah Cheatham). Berni Kelly and Ingri-Hanne Bennwik have also completed a third paper presenting a synthesis of the research literature on disability and leaving care that has been submitted for journal publication. We will share these papers when published in 2025/26 on the website. For further information please contact Berni at b.r.kelly@qub.ac.uk.

Membership:

The group is open to INTRAC members who have an interest in disability issues for care leavers, including those who are actively engaged in researching the experiences of disabled care leavers and those who are new to the field.

To find out more about the group or join, please contact Berni Kelly at b.r.kelly@qub.ac.uk 

Current members:

  • Prof Berni Kelly, Queen’s University Belfast, Northern Ireland
  • Dr Claire Baker, Research and Policy Consultant, UK
  • Prof Adrian van Breda, University of Johannesburg, South Africa
  • Wendy Mpako, University of Johannesburg, South Africa
  • Prof Inger Oterholm, VID Specialized University, Norway
  • Ingri Hanne Brænne Bennwik, VID Specialized University, Norway
  • Prof Philip Mendes, Monash University, Australia
  • Dr Leah Cheatham, University of Alabama, USA
  • Dr Gemma Crous, University of Barcelona, Spain
  • Dr Gilbert Gimm, George Mason University
  • Dr JoAnn Lee, George Mason University
  • Professor Carme Montserrat, University of Girona
  • Natasha Langner Smith, University of Alabama
  • Dr Melissa Villodas, George Mason University
  • Dr Jenny Krutzinna, University in Bergen
  • Jemma Venables, University of Queensland
  • Kathy Ellem, University of Queensland
  • Lucia Canha, University of Lisbon
  • Ricardo Rodrigues, Polytechnic Institute of Setúbal
  • Alex McTier, CELCIS, University of Strathclyde
  • Lynne McPherson, Southern Cross University
  • Erin Mccauley, University of California, San Francisco