The impact of individualised funding on the wellbeing of mothers raising an autistic child in Aotearoa New Zealand
DOI:
https://doi.org/10.11157/anzswj-vol34iss3id980Keywords:
Autism, individualised funding, wellbeing, mothers, disabilityAbstract
INTRODUCTION: How best to support the wellbeing of mothers raising autistic children is an emerging issue of importance due to the growth in autism diagnoses. While the move to individualised funding has been seen to promote autonomy for disabled people and their family to make decisions about services to meet their needs, it has also received criticisms, leading to inequitable processes and outcomes. The purpose of this research was to explore how individualised funding has impacted on mothers raising autistic children and their wellbeing.
METHODS: A qualitative approach, combining semi-structured interviews and the theoretical underpinning of social constructionism, was used to interview seven mothers in 2020 to discuss their experiences of raising an autistic children and how individualised funding has impacted on them. Thematic analysis was used to analyse the data collected.
FINDINGS: Key findings indicated that caring for an autistic child has an ongoing negative impact on mothers’ overall wellbeing and the individualised funding did not seem to ease the stresses of caring.
CONCLUSION: Mothers raising an autistic child in Aotearoa New Zealand face complex funding systems, which are difficult to navigate. Individualisation of disability funding frameworks continues to create barriers and negatively impact the wellbeing of mothers. Wellbeing requires the funding support to see the family as a unit of care instead of the individualisation of a child’s needs. Results of this study urge practitioners and policymakers to support parents raising an autistic child in a more flexible and holistic way to meet the unique circumstances of a family.
References
Bennett S., & Bijoux D. (2009). Investigation of individualised funding and local area coordination-type processes: A literature review. Bennett and Bijoux. https://www.moh.govt.nz/notebook/nbbooks.nsf/0/35BEDCA1D3A3E3A0CC2579AC006AD413/$file/Investigation%20of%20 Individualised%20Funding.pdf
Bennie, G., & Georgeson, S. (2019). Negotiating new disability practice contexts: Opportunities and challenges for social workers. In K. O'Donoghue & R. Munford (Eds.), New theories for social work practice: Ethical practice for working with individuals, families and communities (pp. 81-99). Jessica Kingsley Publishers.
Bevan-Brown, J. (2004). Ma ̄ori perspectives of autistic spectrum disorder: Report to the ministry of education. Ministry of Education. https://www.educationcounts.govt. nz/publications/special_education/5479
Bigby, C., Tilbury, C., & Hughes, M. (2017). Social work research in the field of disability in Australia: A scoping review. Australian Social Work, 71(1), 18–31. https://doi. org/10.1080/0312407x.2017.1364397
Bishop-Fitzpatrick, L., Dababnah, S., Baker-Ericzén, M. J., Smith, M. J., & Magaña, S. M. (2018). Autism spectrum disorder and the science of social work: A grand challenge for social work research. Social Work in Mental Health, 17(1), 73–92. https://doi.org/10.1080/153 32985.2018.1509411
Cantero-Garlito, P. A., Moruno-Miralles, P., & Flores- Martos, J. A. (2020). Mothers who take care of children with disabilities in rural areas of a Spanish region. International Journal of Environmental Research and Public Health, 17(8). https://doi.org/10.3390/ ijerph17082920
Carey, G., Crammond, B., & Malbon, E. (2019). Personalisation schemes in social care and inequality: Review of the evidence and early theorising. International Journal for Equity in Health, 18(1). https:// doi.org/10.1186/s12939-019-1075-2
Carey, G., Malbon, E., Reeders, D., Kavanagh, A., & Llewellyn, G. (2017). Redressing or entrenching social and health inequities through policy implementation? Examining personalised budgets through the Australian national disability insurance scheme. International Journal for Equity in Health, 16(1). https://doi.org/10.1186/s12939-017-0682-z
Carey, M. (2017). Qualitative research skills for social work: Theory and practice. Routledge.
Carroll, M. (2016). Othering and its guises. Philosophy, Psychiatry, & Psychology, 23(3-4), 253–256. https://doi. org/10.1353/ppp.2016.0026
Cartwright, L. (2020). Using thematic analysis in social work research: Barriers to recruitment and issues of confidentiality. Sage Research Methods. https://doi. org/10.4135/9781529708455
Centre for Disease Control and Prevention (CDC). (2022, March 2). Data and statistics on autism spectrum disorder | CDC. https://www.cdc.gov/ncbddd/autism/data.html
Charmaz, K. (2019). Experiencing stigma and exclusion: The influence of neoliberal perspectives, practices, and policies on living with chronic illness and disability. Symbolic Interaction, 43(1), 21–45. https://doi.org/10.1002/symb.432
Drysdale, H., & Van der Meer, L. (2020). Rates of autism spectrum disorder diagnoses for children
and adolescents in the Hutt Valley region of New Zealand between 2012 and 2016. Research in Autism Spectrum Disorders, 73. https://doi.org/10.1016/j. rasd.2020.101547
Fleming, P., McGilloway, S., Hernon, M., Furlong, M., O'Doherty, S., Keogh, F., & Stainton, T. (2019). Individualized funding interventions to improve health and social care outcomes for people with a disability: A mixed-methods systematic review. Campbell Systematic Reviews, 15(1–2). https://doi.org/10.4073/csr.2019.3
Foley, K., Attrill, S., McAllister, S., & Brebner, C. (2020). Impact of transition to an individualised funding model on allied health support of participation opportunities. Disability and Rehabilitation, 43(21), 3021–3030. https:// doi.org/10.1080/09638288.2020.1725157
Galpin, J., Barratt, P., Ashcroft, E., Greathead, S., Kenny, L., & Pellicano, E. (2017). “The dots just don’t join up”: Understanding the support needs of families of children on the autism spectrum. Autism, 22(5), 571–584. https:// doi.org/10.1177/1362361316687989
Gavidia-Payne, S. (2020). Implementation of Australia's national disability insurance scheme. Infants & Young Children, 33(3), 184–194. https://doi.org/10.1097/ iyc.0000000000000169
Gobrial, E. (2018). The lived experiences of mothers of children with the autism spectrum disorders in Egypt. Social Sciences, 7(8), 133. https://doi.org/10.3390/ socsci7080133
Goedeke, S., Shepherd, D., Landon, J., & Taylor, S. (2019). How perceived support relates to child autism symptoms and care-related stress in parents caring for a child with autism. Research in Autism Spectrum Disorders, 60, 36–47. https://doi.org/10.1016/j. rasd.2019.01.005
Goodwin, S., & Huppatz, K. (2010). The good mother: Contemporary motherhoods in Australia. Sydney University Press.
Hickey, H., & Wilson, D. (2017). Whānau hauau: Reframing disability from an Indigenous perspective. MAI Journal: A New Zealand Journal of Indigenous Scholarship, 6(1). https://doi.org/10.20507/maijournal.2017.6.1.7
Htut, M., Ho, E., & Wiles, J. (2019). A study of Asian children who are diagnosed with autism spectrum disorder and available support services in Auckland, New Zealand. Journal of Autism and Developmental Disorders, 50(6), 1855–1865. https://doi.org/10.1007/s10803-019-03936-y
Hyman, S. L., Levy, S. E., & Myers, S. M. (2020). Identification, evaluation, and management of children with autism spectrum disorder clinical report. Pediatric Collections: Autism Spectrum Disorder, 6–74. https://doi. org/10.1542/9781610024716-part01-ch002
Juergensen, K., Mattingly, R., Pitts, T., & Smith, A. F. (2018). Autism spectrum disorder: Investigating predictive diagnostic relationships in children 3 years of age and younger. Early Years, 41(1), 79–90. https://doi.org/10.10 80/09575146.2018.1490891
Klin, A., Wetherby, A., Woods, J., Saulnier, S., Stapel-Wax, J., Klaiman, C., Jones, W., Rubin, E., Scahill, L., Bearss, K., Gunter, C., Courtemanche, C., Lemieux, A., Cox, C., Mandell, D., Van Decar, J., Miller, R., & Shireman, C. (2015). Toward innovative, cost-effective, and systemic solutions to improve outcomes and well- being of military families affected by autism spectrum disorder. Yale Journal of Biology & Medicine, (88), 73–79.
Lalvani, P. (2011). Constructing the (m)other. Narrative Inquiry, 21(2), 276–293. https://doi.org/10.1075/ ni.21.2.06lal
Laragy, C., & Fisher, K. R. (2020). Choice, control and individual funding: The Australian national disability insurance scheme. Choice, Preference, and Disability, 133–154. https://doi.org/10.1007/978-3-030-35683-5_7
Laragy, C., & Ottmann, G. (2011). Towards a framework for implementing individual funding based on an Australian case study. Journal of Policy and Practice in Intellectual Disabilities, 8(1), 18–27. https://doi.org/10.1111/j.1741- 1130.2011.00283.x
Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. SAGE.
Lounds, J., Seltzer, M. M., Greenberg, J. S., & Shattuck, P. T. (2007). Transition and change in adolescents and young adults with autism: Longitudinal effects on maternal well-being. American Journal on Mental Retardation, 112(6), 401. https://doi.org/10.1352/0895-8017(2007)112[401:ta ciaa]2.0.co;2
Malbon, E., Carey, G., & Meltzer, A. (2019). Personalisation schemes in social care: Are they growing social and health inequalities? BMC Public Health, 19(1). https:// doi.org/10.1186/s12889-019-7168-4
Manning, J., Billian, J., Matson, J., Allen, C., & Soares, N. (2020). Perceptions of families of individuals with autism spectrum disorder during the COVID-19 crisis. Journal of Autism and Developmental Disorders, 51(8), 2920–2928. https://doi.org/10.1007/s10803-020-04760-5
Manohar, H., Kandasamy, P., Chandrasekaran, V., & Rajkumar, R. P. (2019). Early diagnosis and intervention for autism spectrum disorder: Need for pediatrician-child psychiatrist liaison. Indian Journal of Psychological Medicine, 41(1), 87–90. https://doi.org/10.4103/ijpsym. ijpsym_154_18
Ministry of Health. (2018, May 28). Autism spectrum disorder support. https://www.health.govt.nz/your-health/services- and-support/disability-services/types-disability-support/ autism-spectrum-disorder-support
Ministry of Social Development. (2019). Carers’ strategy action plan 2019–2023. https://www.msd.govt.nz/ documents/about-msd-and-our-work/work-programmes/ policy-development/carers-strategy/carers-strategy- action-plan-2019-2023.pdf
Ministry of Social Development. (2021). New ministry for disabled people. https://www.msd.govt.nz/about- msd-and-our-work/work-programmes/disability-system-transformation/ministry-for-disabled-people- establishment-unit/index.html
Minnes, P., Perry, A., & Weiss, J. A. (2014). Predictors of distress and well-being in parents of young children with developmental delays and disabilities: The importance of parent perceptions. Journal of Intellectual Disability Research, 59(6), 551–560. https://doi.org/10.1111/ jir.12160
Oprea, C., & Stan, A. (2012). Mothers of autistic children. How do they feel? Procedia - Social and Behavioral Sciences, 46, 4191–4194. https://doi.org/10.1016/j. sbspro.2012.06.224
Ozgur, B., Aksu, H., & Eser, E. (2018). Factors affecting quality of life of caregivers of children diagnosed with autism spectrum disorder. Indian Journal of Psychiatry, 60(3), 278. https://doi.org/10.4103/psychiatry. indianjpsychiatry_300_17
Parenteau, C., Bent, S., Hossain, B., Chen, Y., Widjaja, F., Breard, M., & Hendren, R. (2020). The experience of parents of children with autism spectrum disorder during the COVID-19 pandemic: A qualitative analysis. https:// doi.org/10.21203/rs.3.rs-46426/v1
Perry, M. A., Ingham, T., Jones, B., & Mirfin-Veitch, B. (2020). “At risk” and “vulnerable”! Reflections on inequities and the impact of COVID-19 on disabled people. New Zealand Journal of Physiotherapy, 48(3), 107–116. https://doi.org/10.15619/nzjp/48.3.02
Purcal, C., Fisher, K. R., & Laragy, C. (2014). Analysing choice in Australian individual funding disability policies. Australian Journal of Public Administration, 73(1), 88–102. https://doi.org/10.1111/1467- 8500.12063
Ritchie, J., Lewis, J., Professor of Social Policy Jane Lewis, Nicholls, C. M., & Ormston, R. (2013). Qualitative research practice: A guide for social science students and researchers. SAGE.
Rummery, K. (2006). Disabled citizens and social exclusion: The role of direct payments. Policy & Politics, 34(4), 633–650. https://doi.org/10.1332/030557306778553132
Runswick-Cole, K., & Goodley, D. (2017). The “Disability Commons”: Re-thinking mothering through disability. The Palgrave Handbook of Disabled Children’s Childhood Studies, 231–246. https://doi.org/10.1057/978-1-137- 54446-9_16
Ryan, S., & Runswick-Cole, K. (2008). Repositioning mothers: Mothers, disabled children and disability studies. Disability & Society, 23(3), 199–210. https://doi. org/10.1080/09687590801953937
Seale, C. (2017). Researching society and culture. SAGE.
Shepherd, D., Goedeke, S., Landon, J., & Meads, J. (2020). The types and functions of social supports used by parents caring for a child with autism spectrum disorder. Journal of Autism and Developmental Disorders, 50(4), 1337–1352. https://doi.org/10.1007/s10803-019-04359-5
Shepherd, D., Landon, J., Goedeke, S., & Meads, J. (2021). Stress and distress in New Zealand parents caring
for a child with autism spectrum disorder. Research in Developmental Disabilities, 111. https://doi.org/10.1016/j. ridd.2021.103875
Simpson, A., Stewart, L., & Douglas, J. (2016). The Plan(ner) is always changing: Self-directed funding for children with hearing loss. Deafness & Education International, 18(3), 151–158. https://doi.org/10.1080/14643154.2016 .1214025
Simpson, K., Yeung, P., & Munford, R. (2022). Responses to abuse, neglect, and trauma of children with intellectual disability: Experiences of social workers and health practitioners in Aotearoa New Zealand. Aotearoa New Zealand Social Work, 34(1), 72–87.
Small, Z. (2021, October 29). Government announces new Ministry for Disabled People. NewsHub. https://www. newshub.co.nz/home/politics/2021/10/government- announces-new-ministry-for-disabled-people.html
Smith, S., & McQuade, H. (2021). Corrigendum to exploring the health of families with a child with autism. Autism. https://doi.org/10.1177/13623613211027494
Social Workers Registration Board. (2021, March 29). Core competence standards | Social workers registration board. https://swrb.govt.nz/practice/core-competence- standards/
Spain, D., Mason, D., J Capp, S., Stoppelbein, L., White, S., & Happé, F. (2021). “This may be a really good opportunity to make the world a more autism friendly place”: Professionals’ perspectives on the effects of COVID-19 on autistic individuals. Research in Autism Spectrum Disorders, 83. https://doi.org/10.1016/j. rasd.2021.101747
Tabatabai, A. (2019). Mother of a person: Neoliberalism and narratives of parenting children with disabilities. Disability & Society, 35(1), 111–131. https://doi.org/10.1080/09687 599.2019.1621739
Taylor, J. (2011). The intimate insider: Negotiating the ethics of friendship when doing insider research. Qualitative Research, 11(1), 3–22. https://doi. org/10.1177/1468794110384447
Taylor, L. J., Eggleston, M. J., Thabrew, H., Van der Meer, L., Waddington, H., Whitehouse, A. J., & Evans, K. (2021). An investigation of adherence to best practice guidelines for autism diagnosis in New Zealand. Autism, 25(7), 2087–2100. https://doi.org/10.1177/13623613211015757
Thomas, G. M. (2020). DIS-mantling stigma: Parenting disabled children in an age of “neoliberal-ableism”. The Sociological Review, 69(2), 451–467. https://doi. org/10.1177/0038026120963481
Tuhiwai -Smith, L. (2012). Decolonizing methodologies: Research and indigenous peoples. Zed Books.
Tupou, J., Curtis, S., Taare-Smith, D., Glasgow, A., & Waddington, H. (2021). Māori and autism: A scoping review. Autism, 25(7), 1844–1858. https://doi. org/10.1177/13623613211018649
United Nations. (2020, September 30). Convention on the rights of persons with disabilities (CRPD). https://www. un.org/development/desa/disabilities/convention-on-the- rights-of-persons-with-disabilities.html
Unluer, S. (2015). Being an insider researcher while conducting case study research. The Qualitative Report. https://doi.org/10.46743/2160-3715/2012.1752
Vivanti, G. (2019). Ask the editor: What is the most appropriate way to talk about individuals with a diagnosis of autism? Journal of Autism and Developmental Disorders, 50(2), 691–693. https://doi.org/10.1007/ s10803-019-04280-x
Weiss, J. A., Wingsiong, A., & Lunsky, Y. (2013). Defining crisis in families of individuals with autism spectrum disorders. Autism, 18(8), 985–995. https://doi. org/10.1177/1362361313508024
Yates, S., Dickinson, H., Smith, C., & Tani, M. (2020). Flexibility in individual funding schemes: How well did Australia's national disability insurance scheme support remote learning for students with disability during COVID-19? Social Policy & Administration, 55(5), 906–920. https://doi.org/10.1111/spol.12670
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2022 Aotearoa New Zealand Association of Social Workers
This work is licensed under a Creative Commons Attribution 4.0 International License.
Authors who publish with this journal agree to the following terms:
By completing the online submission process, you confirm you accept this agreement. The following is the entire agreement between you and the Aotearoa New Zealand Association of Social Workers (ANZASW) and it may be modified only in writing.
You and any co-authors
If you are completing this agreement on behalf of co-authors, you confirm that you are acting on their behalf with their knowledge.
First publication
By submitting the work you are:
- granting the ANZASW the right of first publication of this work;
- confirming that the work is original; and
- confirming that the work has not been published in any other form.
Once published, you are free to use the final, accepted version in any way, as outlined below under Copyright.
Copyright
You assign copyright in the final, accepted version of your article to the ANZASW. You and any co-authors of the article retain the right to be identified as authors of the work.
The ANZASW will publish the final, accepted manuscript under a Creative Commons Attribution licence (CC BY 4.0). This licence allows anyone – including you – to share, copy, distribute, transmit, adapt and make commercial use of the work without needing additional permission, provided appropriate attribution is made to the original author or source.
A human-readable summary of the licence is available from http://creativecommons.org/licenses/by/4.0, which includes a link to the full licence text.
Under this licence you can use the final, published version of the article freely – such as depositing a copy in your institutional research repository, uploading a copy to your profile on an academic networking site or including it in a different publication, such as a collection of articles on a topic or in conference proceedings – provided that original publication in Aotearoa New Zealand Social Work is acknowledged.
This agreement has no effect on any pre-publication versions or elements, which remain entirely yours, and to which we claim no right.
Reviewers hold copyright in their own comments and should not be further copied in any way without their permission.
The copyright of others
If your article includes the copyright material of others (e.g. graphs, diagrams etc.), you confirm that your use either:
- falls within the limits of fair dealing for the purposes of criticism and review or fair use; OR
- that you have gained permission from the rights holder for publication in an open access journal.