Skip to main content
Have a personal or library account? Click to login
Negotiating the Administrative Burden: The Navigation of Welfare Services by Parents with Disabled Children Cover

Negotiating the Administrative Burden: The Navigation of Welfare Services by Parents with Disabled Children

Open Access
|Nov 2023

References

  1. Albertini Früh, Elena, Kaja Larsen Østerud, Janikke Solstad Vedeler, Cecilie Høj Anvik, and Sigurd Eid Jacobsen. 2023. “Er Koordinatorordningen for Familier med Funksjonshemmede Barn Bærekraftig?”. [Is the coordinator function for families with disabled children sustainable?]. Tidsskrift for omsorgsforskning 2: 7991. DOI: 10.18261/tfo.9.2.7
  2. Barr, Megan, Jill Duncan, and Kerry Dally. 2021. “Parent Experience of the National Disability Insurance Scheme (NDIS) for Children with Hearing Loss in Australia”. Disability & Society 36(10): 16631687. DOI: 10.1080/09687599.2020.1816906
  3. Bekken, Wenche, Borgunn Ytterhus, and Sylvia Söderström. 2021. “In the Next Moment, I Answer, It Is Not Possible. Professionals’ Experiences from Transition Planning for Young People”. Scandinavian Journal of Disability Research 23(1): 338347. DOI: 10.16993/sjdr.783
  4. Blum, Linda. 2007. Mother-Blame in The Prozac Nation: Raising Kids with Invisible Disabilities. Gender & Society 21(2): 202226. DOI: 10.1177/0891243206298178
  5. Blum, Linda. 2015. Raising Generation Rx. New York University Press.
  6. Goodley, Dan. 2007. “Becoming Rhizomatic Parents: Deleuze, Guattari and Disabled Babies”. Disability & Society 22(2): 145160. DOI: 10.1080/09687590601141576
  7. Green, Sara. 2007. “‘We’re tired, not sad’: Benefits and Burdens of Mothering a Child with a Disability”. Social Science and Medicine, 64(1): 150163. DOI: 10.1016/j.socscimed.2006.08.025
  8. Gundersen, Tonje. 2012. “Human Dignity at Stake—How Parents of Disabled Children Experience the Welfare System”. Scandinavian Journal of Disability Research 14(4): 375390. DOI: 10.1080/15017419.2011.592955
  9. Herd, Pamela, and Donald Moynihan. 2019. Administrative burden: Policymaking by other means. Russell Sage Foundation. DOI: 10.7758/9781610448789
  10. Jacobsen, Sigurd Eid. 2023. “Social Class, Disability, and Institutional Interactions: The Case of Families with Disabled Children in the Welfare State”. Disability & Society 0(0). DOI: 10.1080/09687599.2023.2230349
  11. Jacobsen, Sigurd Eid, and Kjetil Klette Bøhler. 2023. “Affective Citizenship: Social Exclusion of Families with Disabled Children During the COVID-19 Pandemic”. In Citizenship and Social Exclusion at the Margins of the Welfare State (pp. 123133). Routledge. DOI: 10.4324/9781003347279-11
  12. Johannessen, Lars E. F. 2019. “Negotiated Discretion: Redressing the Neglect of Negotiation in ‘Street-Level Bureaucracy’”. Symbolic Interaction 42(4): 513538. DOI: 10.1002/symb.451
  13. Kittelsaa, Anna, and Jan Tøssebro. 2014. Foreldrenes Erfaring Med Hjelpeapparatet. [Parents’ Experiences with Welfare Services]. In J. Tøssebro and C. Wendelborg (Eds.). Oppvekst med funksjonshemming (pp. 1135). Gyldendal Akademisk.
  14. Lareau, Annette. 2011. Unequal Childhoods: Class, Race, and Family Life. University of California Press. DOI: 10.1525/9780520949904
  15. Lipsky, Micheal. 2010. Street-Level Bureaucracy: Dilemmas of The Individual in Public Service. Russell Sage Foundation.
  16. Malacrida, Claudia. 2003. Cold comfort: Mothers, Professionals, and Attention Deficit Disorder. University of Toronto Press. DOI: 10.3138/9781442673038
  17. McKeever, Patricia, and Karen-Lee Miller. 2004. “Mothering Children who Have Disabilities: A Bourdieusian Interpretation of Maternal Practices”. Social Science & Medicine 59(6): 11771191. DOI: 10.1016/j.socscimed.2003.12.023
  18. McLaughlin, Janice. 2019. “Understanding Disabled Families: Replacing Tales of Burden and Resilience with Ties of Interdependency”. In N. Watson, A. Roulstone, and C. Thomas (Eds.), Routledge Handbook of Disability Studies (pp. 479491). Abingdon, Oxon: Routledge.
  19. McLaughlin, Janice. 2023. “Bringing Disability Studies and Youth Studies Together to Enhance Understandings of Youth Transitions”. Journal of Youth Studies: 116. DOI: 10.1080/13676261.2023.2182674
  20. Mladenov, Teodor, and Ina Dimitrova. 2022. “Epistemic Injustice as a Bridge Between Medical Sociology and Disability Studies”. Sociology of Health & Illness. DOI: 10.1111/1467-9566.13479
  21. Nowak, Herawati I., Malin Broberg, and Mikaela Starke. 2013. “Parents’ Experience of Support in Sweden: Its Availability, Accessibility, And Quality”. Journal of Intellectual Disabilities 17(2): 134144. DOI: 10.1177/1744629513486229
  22. Office of the Auditor General of Norway. 2021. “Investigation of Health and Care Services for Disabled Children”. Riksrevisjonen 3(15): 20202021.
  23. Østerud, Kaja Larsen, and Cecilie Høj Anvik. 2023. “‘It’s Not Really Michael who Wears Me Out, It’s the System’: The Hidden Work of Coordinating Care for a Disabled Child”. Critical Social Policy: 0(0). DOI: 10.1177/02610183231199661
  24. Runswick-Cole, Katherine. 2007. “The Tribunal Was the Most Stressful Thing: More Stressful than my Son’s Diagnosis or Behaviour”. Disability and Society 22(3): 315328. DOI: 10.1080/09687590701259674
  25. Ryan, Sara, and Katherine Runswick-Cole. 2008. “Repositioning Mothers: Mothers, Disabled Children and Disability Studies”. Disability & Society 23(3): 199210. DOI: 10.1080/09687590801953937
  26. Skagestad, Linn Julie, Sigrid Østensjø, and Oddbjørg Skjær Ulvik. 2023. “Young Adults with Disabilities and their Transitions to Adult Life and Services: A Sociocultural Analysis of Parents’ Perspectives on their Involvement”. Scandinavian Journal of Disability Research 25(1): 106118. DOI: 10.16993/sjdr.890
  27. Strauss, Anselm Leonard. 1978. Negotiations: Varieties, Contexts, Processes, and Social Order. Jossey-Bass Inc. Pub.
  28. Tavory, Iddo, and Stefan Timmermans. 2014. Abductive Analysis: Theorizing Qualitative Research. University of Chicago Press. DOI: 10.7208/chicago/9780226180458.001.0001
  29. The Norwegian Directorate of Health. 2018. Koordinator i Kommunen og Spesialisthelsetjenesten [Coordinator in the Municipality and Specialist Health Service]. Helsedirektoratet. https://www.helsedirektoratet.no/veiledere/rehabilitering-habilitering-individuell-plan-og-koordinator/individuell-plan-og-koordinator/koordinator-i-kommunen-og-spesialisthelsetjenesten.
  30. Thomas, Gareth M. 2021. “Dis-mantling Stigma: Parenting Disabled Children in an Age of ‘Neoliberal-Ableism’”. The Sociological Review 69(2): 451467. DOI: 10.1177/0038026120963481
  31. Thomas, Gareth M. 2022. “A Legacy of Silence: The Intersections of Medical Sociology and Disability Studies”. Medical Humanities, 48(1): 123132. DOI: 10.1136/medhum-2021-012198
  32. Traustadottir, R. 1991. “Mothers who Care: Gender, Disability, and Family Life”. Journal of Family Issues 12(2): 211228. DOI: 10.1177/019251391012002005
  33. Tveit, Anne Dorthe, and David Lansing Cameron. 2013. Utfordringer når Foresatte Skal Medvirke på Tjenestetilbudet til eget Barn [The Challenges when Parents Become Involved in Official Plans for their Children]. Nordic Studies in Education 32(3–4): 321332. DOI: 10.18261/ISSN1891-5949-2012-03-04-11
  34. Yin, Robert K. (2018). Case Study Research and Applications: Design and Methods. SAGE.
DOI: https://doi.org/10.16993/sjdr.1044 | Journal eISSN: 1745-3011
Language: English
Page range: 391 - 403
Submitted on: Jun 14, 2022
Accepted on: Oct 26, 2023
Published on: Nov 27, 2023
In partnership with: Paradigm Publishing Services

© 2023 Sigurd Eid Jacobsen, published by Stockholm University Press
This work is licensed under the Creative Commons Attribution 4.0 License.