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Original Articles

Independent living and community care: a disempowering framework

Pages 427-442 | Published online: 01 Oct 2010

Keep up to date with the latest research on this topic with citation updates for this article.

Read on this site (40)

Carla Branco, Miguel R. Ramos & Miles Hewstone. (2023) The interaction between social equality and personal assistance: a cross-country analysis. Disability & Society 38:7, pages 1186-1208.
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Val Williams, Marina Gall, Victoria Mason-Angelow, Stuart Read & Joseph Webb. (2023) Misfitting and social practice theory: incorporating disability into the performance and (re)enactment of social practices. Disability & Society 38:5, pages 776-797.
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Miriam Zaagsma, Dominique van de Velde, Mark H. M. Koning, Karin M. Volkers, Alice P. Schippers & Geert van Hove. (2023) ‘When I need them, I call them and they will be there for me’. Experiences of independently living people with intellectual disabilities with 24/7 available online support. Disability & Society 38:4, pages 659-682.
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Yueh-Ching Chou, Bo-Wei Chen & Teppo Kröger. (2023) Lost in translation: implementing personal assistance in an East Asian context. Disability & Society 38:4, pages 587-609.
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Erika Katzman, Elizabeth Mohler, Evelyne Durocher & Elizabeth Anne Kinsella. (2022) Occupational justice in direct-funded attendant services: Possibilities and constraints. Journal of Occupational Science 29:4, pages 586-601.
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Heléne von Granitz, Karin Sonnander, Ieva Reine & Ulrika Winblad. (2022) Do personal assistance activities promote participation in society for persons with disabilities in Sweden? A five-year longitudinal study. Disability and Rehabilitation 44:15, pages 3973-3981.
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Hilde Guddingsmo. (2022) Growing a method for empowerment with applied theatre. Disability & Society 0:0, pages 1-21.
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Agnieszka Wołowicz, Magdalena Kocejko & Kamila Ferenc. (2022) Women with disabilities and access to gynaecological services in Poland. Disability & Society 37:3, pages 386-405.
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Lilian Chenwi. (2021) Housing for persons with disabilities in South Africa. International Journal of Housing Policy 21:3, pages 321-345.
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Maria Pallisera, Montserrat Vilà, Judit Fullana & Maria-Josep Valls. (2021) Being in control: Choice and control of support received in supported living. A study based on the narratives of people with intellectual disability and support staff. Journal of Intellectual & Developmental Disability 46:2, pages 164-174.
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Alison Tarrant. (2020) Personal budgets in adult social care: the fact and the fiction of the Care Act 2014. Journal of Social Welfare and Family Law 42:3, pages 281-298.
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Erika R. Katzman, Elizabeth Anne Kinsella & Jessica Polzer. (2020) ‘Everything is down to the minute’: clock time, crip time and the relational work of self-managing attendant services. Disability & Society 35:4, pages 517-541.
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Teodor Mladenov. (2020) What is good personal assistance made of? Results of a European survey. Disability & Society 35:1, pages 1-24.
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Judit Fullana, Maria Pallisera & Gemma Díaz-Garolera. (2019) How do people with learning disabilities talk about professionals and organizations? Discourse on support practices for independent living. Disability & Society 34:9-10, pages 1462-1480.
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Øyvind Ibrahim Marøy Snipstad. (2019) Democracy or fellowship and participation with peers: what constitutes one’s choice to self-segregate?. European Journal of Special Needs Education 34:3, pages 355-368.
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Erika R. Katzman & Elizabeth Anne Kinsella. (2018) ‘It’s like having another job’: the invisible work of self-managing attendant services. Disability & Society 33:9, pages 1436-1459.
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Adi Finkelstein & Esther-Lee Marcus. (2018) Realizing autonomy: the phenomenology of independence and interdependence while living with Duchenne muscular dystrophy. Disability & Society 33:3, pages 433-453.
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Shane Clifton, Gwynnyth Llewellyn & Tom Shakespeare. (2018) Quadriplegia, virtue theory, and flourishing: a qualitative study drawing on self-narratives. Disability & Society 33:1, pages 20-38.
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Teodor Mladenov. (2017) Governing through personal assistance: a Bulgarian case. Scandinavian Journal of Disability Research 19:2, pages 91-103.
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Anita Gjermestad, Laila Luteberget, Turid Midjo & Aud Elisabeth Witsø. (2017) Everyday life of persons with intellectual disability living in residential settings: a systematic review of qualitative studies. Disability & Society 32:2, pages 213-232.
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Ciara Brennan, Rannveig Traustadóttir, James Rice & Peter Anderberg. (2016) Negotiating independence, choice and autonomy: experiences of parents who coordinate personal assistance on behalf of their adult son or daughter. Disability & Society 31:5, pages 604-621.
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Courtney J. Wright, Heidi Muenchberger & Jennifer A. Whitty. (2015) The choice agenda in the Australian supported housing context: a timely reflection. Disability & Society 30:6, pages 834-848.
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Teodor Mladenov. (2015) Neoliberalism, postsocialism, disability. Disability & Society 30:3, pages 445-459.
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Kirstein Rummery. (2011) A Comparative Analysis of Personalisation: Balancing an Ethic of Care with User Empowerment. Ethics and Social Welfare 5:2, pages 138-152.
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Parvaneh Rabiee & Caroline Glendinning. (2010) Choice: what, when and why? Exploring the importance of choice to disabled people. Disability & Society 25:7, pages 827-839.
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Karen Christensen. (2010) Caring about independent lives. Disability & Society 25:2, pages 241-252.
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JuliaA. Rivera Drew. (2009) Disability and the Self-Reliant Family: Revisiting the Literature on Parents with Disabilities. Marriage & Family Review 45:5, pages 431-447.
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BarbaraE. Gibson, Dina Brooks, Dale DeMatteo & Audrey King. (2009) Consumer‐directed personal assistance and ‘care’: perspectives of workers and ventilator users. Disability & Society 24:3, pages 317-330.
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Kyung Mee Kim. (2008) The current status and future of centers for independent living in Korea. Disability & Society 23:1, pages 67-76.
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Carol Thomas. (2006) Disability and Gender: Reflections on Theory and Research. Scandinavian Journal of Disability Research 8:2-3, pages 177-185.
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Articles from other publishers (51)

Ina Dimitrova & Teodor Mladenov. (2023) Decolonising Disability in Contexts of Illiberalism and Social Abandonment: The Case for a Double-Edged Critique from the Postsocialist Margins. Critical Sociology.
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Trevor R. Parmenter. (2023) Rights Are Necessary but Insufficient for the Achievement of the Full Inclusion of People with Intellectual and Developmental Disabilities. Advances in Neurodevelopmental Disorders.
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Teodor Mladenov & Ina Dimitrova. (2022) Epistemic injustice as a bridge between medical sociology and disability studies. Sociology of Health & Illness 45:6, pages 1146-1163.
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Kirstein Rummery. (2022) The right to care? Social citizenship and care poverty in developed welfare states. International Journal of Sociology and Social Policy 43:1/2, pages 33-47.
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Ewa Giermanowska, Mariola Racław & Dorota Szawarska. 2023. Cień, który pozwala wyjść z cienia – asystencja osobista dla osób z niepełnosprawnościami w Polsce i Norwegii. Cień, który pozwala wyjść z cienia – asystencja osobista dla osób z niepełnosprawnościami w Polsce i Norwegii.
Miro Griffiths. (2023) Declare Independence. International Journal of Disability and Social Justice 3:1.
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Müjde Koca-Atabey, Bahar Öz & Burcu Tekeş. (2022) Personal experiences of blind road users in traffic settings: An investigation based on the Interpretative Phenomenological Analysis. Journal of Transport & Health 27, pages 101518.
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Shirli Werner. (2022) Meeting the unmet needs of disabled adults with cerebral palsy. Developmental Medicine & Child Neurology 64:10, pages 1187-1188.
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Emma Miller & Karen Barrie. (2020) Ethical dilemmas: balancing choice and risk with a duty of care in extending personalisation into the care home. Ageing and Society 42:8, pages 1800-1821.
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MYRIAM WINANCE & LOUIS BERTRAND. (2022) The Personalisation of Social Care: How Can a Healthcare System Be Adapted to the Specific Characteristics of People with Multiple Impairments? The case of the care of people with “rare disabilities” in France. Journal of Social Policy, pages 1-18.
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Øyvind Ibrahim Marøy Snipstad. (2021) Concerns regarding the use of the vulnerability concept in research on people with intellectual disability. British Journal of Learning Disabilities 50:1, pages 107-114.
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Vilborg Jóhannsdóttir & Freyja Haraldsdóttir. (2022) The meaning of the disability rights movement for the professional field of social pedagogy in Iceland. International Journal of Social Pedagogy 11:1.
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Parisa Ghanouni, Stephanie Quirke, Jennifer Blok & Amanda Casey. (2021) Independent living in adults with autism spectrum disorder: Stakeholders’ perspectives and experiences. Research in Developmental Disabilities 119, pages 104085.
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Teodor Mladenov & Ciara Siobhan Brennan. (2021) Social vulnerability and the impact of policy responses to COVID‐19 on disabled people. Sociology of Health & Illness 43:9, pages 2049-2065.
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Kirstein Rummery. (2020) Gender equality and the governance of long-term care policy: new comparative models and paradigms. Journal of International and Comparative Social Policy 37:1, pages 16-33.
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Eva Kašperová & John Kitching. 2021. The Palgrave Handbook of Minority Entrepreneurship. The Palgrave Handbook of Minority Entrepreneurship 237 261 .
Nandini Devi, Birgit Prodinger, Andrew Pennycott, Roja Sooben & Jerome Bickenbach. (2019) Investigating Supported Decision‐Making for Persons With Mild to Moderate Intellectual Disability Using Institutional Ethnography. Journal of Policy and Practice in Intellectual Disabilities 17:2, pages 143-156.
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Bo Hu & Lei Li. (2020) The Protective Effects of Informal Care Receipt Against the Progression of Functional Limitations Among Chinese Older People. The Journals of Gerontology: Series B 75:5, pages 1030-1041.
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Lowis Charfe & Ali Gardner. (2020) ‘Does my Haltung look big in this?’: The use of social pedagogical theory for the development of ethical and value-led practice. International Journal of Social Pedagogy 9:1.
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Sandra Dowling, Val Williams, Joe Webb, Marina Gall & Deborah Worrall. (2019) Managing relational autonomy in interactions: People with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 32:5, pages 1058-1066.
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Cecilie Basberg Neumann & Tonje Gundersen. (2018) Care parading as service: Negotiating recognition and equality in user‐controlled personal assistance. Gender, Work & Organization 26:7, pages 948-961.
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Lydia Hayes. (2019) 8 good reasons why adult social care needs sectoral collective bargaining. Institute of Employment Rights Journal 2:1.
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Haris Memisevic & Mirjana Djordjevic. 2019. Handbook of Intellectual Disabilities. Handbook of Intellectual Disabilities 91 107 .
Mi Ok kim & 정민아. (2018) A Study of the Community Support System ofr Independence of People with Developmental Disabilities After Deinstitutionalization - Focusing on the Service Experience for Supported Living in the USA and Australia -. Korean Journal of Social Welfare 70:3, pages 51-79.
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Turid Midjo & Karin Ellingsen Aune. (2017) Identity constructions and transition to adulthood for young people with mild intellectual disabilities. Journal of Intellectual Disabilities 22:1, pages 33-48.
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Charlotte Pearson & Julie Ridley. (2017) Is Personalization the Right Plan at the Wrong Time? Re-thinking Cash-for-Care in an Age of Austerity. Social Policy & Administration 51:7, pages 1042-1059.
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PETER SIMCOCK. (2016) Ageing with a unique impairment: a systematically conducted review of older deafblind people's experiences. Ageing and Society 37:8, pages 1703-1742.
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Val Williams & Sue Porter. (2017) The Meaning of ‘choice and control’ for People with Intellectual Disabilities who are Planning their Social Care and Support. Journal of Applied Research in Intellectual Disabilities 30:1, pages 97-108.
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jae-kook Park. (2016) The Effects of Independent Living on Career Self-Efficacy of University Students with Disabilities: Focused on the Moderating Effect of Vocational Training Experience. Korean Journal of Physical, Multiple, & Health Disabilities 59:4, pages 21-42.
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Ciara Brennan, Rannveig Traustadóttir, Peter Anderberg & James Rice. (2016) Are Cutbacks to Personal Assistance Violating Sweden’s Obligations under the UN Convention on the Rights of Persons with Disabilities?. Laws 5:2, pages 23.
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Eshtiak Ahmed, Ashraful Islam, Farhana Sarker, Mohammad Nurul Huda & Khondaker Abdullah-Al-Mamun. (2016) A road to independent living with smart homes for people with disabilities. A road to independent living with smart homes for people with disabilities.
Tomás Sánchez Criado, Israel Rodríguez-Giralt & Arianna Mencaroni. (2016) Care in the (critical) making. Open prototyping, or the radicalisation of independent-living politics. Alter 10:1, pages 24-39.
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Eva Feder Kittay. (2020) Centering Justice on Dependency and Recovering Freedom. Hypatia 30:1, pages 285-291.
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Ignacio Ramos-Vidal & Isidro Maya-Jariego. (2014) Sentido de comunidad, empoderamiento psicológico y participación ciudadana en trabajadores de organizaciones culturales. Psychosocial Intervention 23:3, pages 169-176.
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Kate Caldwell. (2013) Dyadic interviewing: a technique valuing interdependence in interviews with individuals with intellectual disabilities. Qualitative Research 14:4, pages 488-507.
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Alex McClimens, Nick Partridge & Ed Sexton. (2014) How do people with learning disability experience the city centre? A Sheffield case study. Health & Place 28, pages 14-21.
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P. Rabiee. (2012) Exploring the Relationships between Choice and Independence: Experiences of Disabled and Older People. British Journal of Social Work 43:5, pages 872-888.
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Teodor Mladenov. (2013) The UN Convention on the rights of persons with disabilities and its interpretation. Alter 7:1, pages 69-82.
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Sue ThompsonSue Thompson. 2013. Reciprocity and Dependency in Old Age. Reciprocity and Dependency in Old Age 137 177 .
Kirstein Rummery & Michael Fine. (2012) Care: A Critical Review of Theory, Policy and Practice. Social Policy & Administration 46:3, pages 321-343.
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Teodor Mladenov. (2012) Personal assistance for disabled people and the understanding of human being. Critical Social Policy 32:2, pages 242-261.
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Theo Blackmore & Stephen Lee Hodgkins. 2012. Disability and Social Theory. Disability and Social Theory 70 87 .
Christine Kelly. (2011) Making ‘care’ accessible: Personal assistance for disabled people and the politics of language. Critical Social Policy 31:4, pages 562-582.
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Debbie Windley & Melanie Chapman. (2010) Support workers within learning/intellectual disability services perception of their role, training and support needs. British Journal of Learning Disabilities 38:4, pages 310-318.
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Rebecca J. Bond & Jenni Hurst. (2010) How adults with learning disabilities view living independently. British Journal of Learning Disabilities 38:4, pages 286-292.
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Geraldine Boyle. (2010) Social policy for people with dementia in England: promoting human rights?. Health & Social Care in the Community 18:5, pages 511-519.
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Kirstein Rummery. 2010. Challenges and Perspectives for the European Welfare States. Challenges and Perspectives for the European Welfare States 94 108 .
Teppo Kröger. (2009) Care research and disability studies: Nothing in common?. Critical Social Policy 29:3, pages 398-420.
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김진우. (2008) Critical Review on 「Korean Anti-Discrimination Against Disabled People Act」 in Respect of People with Intellectual Disabilities. Social Welfare Policy null:35, pages 169-195.
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Dina Brooks, Barbara Gibson & Dale DeMatteo. (2008) Perspectives of personal support workers and ventilator-users on training needs. Patient Education and Counseling 71:2, pages 244-250.
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Val Williams. (2006) Talking About Care: two sides to the story. British Journal of Learning Disabilities 34:1, pages 59-60.
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