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Original Articles

‘I’m not really sure but I hope it’s better’: early thoughts of parents and carers in a regional trial site for the Australian National Disability Insurance Scheme

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Pages 1365-1381 | Received 22 Oct 2014, Accepted 09 Sep 2015, Published online: 14 Oct 2015

References

  • Al-Krenawi, A., J. Graham, and F. Al Gharaibeh. 2011. “The Impact of Intellectual Disability, Caregiver Burden, Family Functioning, Marital Quality, and a Sense of Coherence.” Disability and Society 26 (2): 139–150. doi:10.1080/09687599.2011.543861.
  • Australian Bureau of Statistics (ABS). 2011. Census QuickStats 2011, Newcastle. Accessed March 13, 2015. http://www.censusdata.abs.gov.au/census_services/getproduct/census/2011/quickstat/UCL102004?opendocument&navpos=220
  • Australian Institute of Health and Welfare (AIHW). 2007. Aboriginal and Torres Strait Islander People with Disability. Accessed March 13, 2015. http://www.aihw.gov.au/indigenous-observatory-disability
  • Australian Institute of Health and Welfare (AIHW). 2013. Disability Support Services: Services Provided under the National Disability Agreement 2011-12. Accessed March 13, 2015. http://www.aihw.gov.au/publication-detail/?id=60129543841
  • Australian Productivity Commission (APC). 2011. Disability Care and Support. Canberra: Publisher.
  • Barnes, C. 2007. “Disability Activism and the Struggle for Change: Disability, Policy and Politics in the UK.” Education, Citizenship and Social Justice 2: 203–221. doi:10.1177/1746197907081259.
  • Bundy, A., B. Hemsley, J. Brentnall, and E. Marshall. 2008. Therapy Services in the Disability Sector: Literature Review. NSW Department of Ageing, Disability and Home Care. https://www.adhc.nsw.gov.au/__data/assets/file/0007/228139/10_Therapy_Services_Disability_Sector.pdf
  • Butteriss, M. 2012. “NDIS: In Context.” Journal of Social Inclusion 3: 102–107.
  • Carpenter, B. 2007. “The Impetus for Family-centred Early Childhood Intervention.” Child: Care, Health and Development 33 (6): 664–669. doi:10.1111/j.1365-2214.2007.00727.
  • Corlett, J., and A. Twycross. 2006. “Negotiation of Parental Roles within Family-centred Care: A Review of the Research.” Journal of Clinical Nursing 15 (10): 1308–1316. doi:10.1111/j.1365-2702.2006.01407.
  • Council of Australian Governments (COAG). 2012. National Disability Agreement Council on Government Financial Relations. Canberra: Commonwealth of Australia.
  • Davis, K., and S. Gavidia-Payne. 2009. “The Impact of Child, Family, and Professional Support Characteristics on the Quality of Life in Families of Young Children with Disabilities.” Journal of Intellectual and Developmental Disability 34 (2): 153–162. doi:10.1080/13668250902874608.
  • Department of Aging, Disability and Home Care (DADHC). 2013. National Disability Insurance Scheme Fact Sheet. Accessed March 13, 2015. www.adhc.nsw.gov.au/about_us/strategies/.../ndis_fact_sheets
  • Dew, A., K. Bulkeley, C. Veitch, A. Bundy, M. Lincoln, J. Brentnall, G. Gallego, and S. Griffiths. 2013. “Carer and Service Providers’ Experiences of Individual Funding Models for Children with a Disability in Rural and Remote Areas.” Health and Social Care in the Community 21 (4): 432–441. doi:10.1111/hsc.12032.
  • Dickens, K., L. R. Matthews, and J. Thompson. 2011. “Parent and Service Providers’ Perceptions regarding the Delivery of Family-centred Paediatric Rehabilitation Services in a Children’s Hospital.” Child: Care, Health and Development 37 (1): 64–73. doi:10.1111/j.1365-2214.2010.01125.
  • Dodd, J., S. Saggers, and H. Wildy. 2009. “Constructing the ‘Ideal’ Family for Family-centred Practice: Challenges for Delivery.” Disability and Society 24 (2): 173–186. doi:10.1080/09687590802652447.
  • Espe-Sherwindt, M. 2008. “Family-centred Practice: Collaboration, Competency and Evidence.” Support for Learning 23 (3): 136–143. doi:10.1111/j.1467-9604.2008.00384.
  • Fereday, J., C. Oster, and P. Darbyshire. 2010. “Partnership in Practice: What Parents of a Disabled Child Want from a Generic Health Professional in Australia.” Health and Social Care in the Community 18 (6): 624–632. doi:10.1111/j.1365-2524.2010.00935.
  • Fordham, L., F. Gibson, and J. Bowen. 2012. “Information and Professional Support: Key Factors N the Provision of Family-centred Early Childhood Intervention Services.” Child: Care, Health and Development 38 (5): 647–653. doi:10.1111/j.1365-2214.2011.01324.
  • Franck, I. S., and P. Callery. 2004. “Re-thinking Family Centre Care across the Continuum of Children’s Healthcare.” Child: Care, Health and Development 30 (3): 265–277. doi:10.1111/j.1365-2214.2004.00412.
  • Goodley, D., and C. Tregaskis. 2006. “Storying Disability and Impairment: Retrospective Accounts of Disabled Family Life.” Qualitative Health Research 16 (5): 630–646. doi:10.1177/1049732305285840.
  • Hannah, S. K., and S. Roger. 2002. “Towards a Family-centred Practice in Pediatric Occupational Therapy.” Australasian Occupational Therapy Journal 49 (1): 14–24. doi:10.1046/j.0045-0766.2001.00273.
  • Jansen, S. L. G., A. A. J. van der Putten, and C. Vlaskamp. 2013. “What Parents Find Important in the Support of a Child with Profound Intellectual and Multiple Disabilities.” Child: Care, Health and Development 39 (3): 432–441. doi:10.1111/j.1365-2214.2012.01381.
  • Joint Standing Committee on the National Disability Insurance Scheme (JSC). 2014. Progress Report on the Implementation and Administration of the National Disability Insurance Scheme, July, 2014. Canberra: Commonwealth of Australia.
  • Knight, K. 2013. “The Changing Face of the ‘Good Mother’: Trends in Research into Families with a Child with Intellectual Disability, and Some Concerns.” Disability and Society 28 (5): 660–673. doi:10.1080/09687599.2012.732540.
  • Lilley, R. 2013. “‘It’s an Absolute Nightmare’: Maternal Experiences of Enrolling Children Diagnosed with Autism in Primary School in Sydney, Australia.” Disability and Society 28 (4): 514–526. doi:10.1080/09687599.2012.717882.
  • MacKean, G. L., W. E. Thurston, and C. M. Scott. 2005. “Bridging the Divide between Families and Health Professionals’ Perspectives on Family-centred Care.” Health Expectations 8 (1): 74–85. doi:10.1111/j.1369-7625.2005.00319.
  • Maglajlic, R., D. Brandon, and D. Given. 2000. “Making Direct Payments and Choice: A Report on the Research Findings.” Disability and Society 15 (1): 99–113. doi:10.1080/09687590025793.
  • Moore, T. G. 2011. DEECD Early Childhood Intervention Reform Project: Revised Literature Review. Melbourne, Victoria: Department of Education and Early Childhood Development.
  • National Disability Insurance Agency (NDIA). 2014. NDIS Our Sites. Accessed August 18. http://www.ndis.gov.au/about-us/our-sites
  • New South Wales (NSW) Government. 2011. Inquiry into a National Disability Long Term Care and Support Scheme: NSW Government Response to the Draft Report on Disability Care and Support. Accessed March 13. http://www.adhc.nsw.gov.au/__data/assets/file/0010/237493/NSW_SUB_v26_13_May_final_cover.pdf
  • Nupponen, H. 2007. “Prevention and Early Intervention: Innovative Practice Model ‘Down Under’ in South-East Queensland, Australia.” Child Care in Practice 13 (4): 367–386. doi:10.1080/13575270701488758.
  • Ottmann, G., C. Laragy, and M. Haddon. 2009. “Experiences of Disability Consumer-directed Care Users in Australia: Results from a Longitudinal Qualitative Study.” Health and Social Care in the Community 17 (5): 466–475. doi:10.1111/j.1365-2524.2009.0085.
  • Pearson, C. and S. Riddell. 2005. “Personal Assistance Policy in the UK: What’s the Problem with Direct Payments?” Disability Studies Quarterly 25 (1): 1‒11. http://dsq-sds.org/article/view/525/702
  • Read, J., C. Blackburn, and N. Spencer. 2012. “Disabled Children and Their Families: A Decade of Policy Change.” Children and Society 26 (3): 223–233. doi:10.1111/j.1099-0860.2012.00435.
  • Riddell, S., C. Pearson, D. Jolly, C. Barnes, M. Priestley, and G. Mercer. 2005. “The Development of Direct Payments in the UK: Implications for Social Justice.” Social Policy and Society 4 (1): 75–85. doi:10.1017/S1474746404002209.
  • Spandler, H. 2004. “Friend or Foe? Towards a Critical Assessment of Direct Payments.” Critical Social Policy 24 (2): 187–209. doi:10.1177/0261018304041950.
  • Thompson, D., and E. Emira. 2011. “‘They Say Every Child Matters but They Don’t’: An Investigation into Parental and Carer Perceptions of Access to Leisure Facilities and Respite Care for Children and Young People with Autistic Spectrum Disorder (ASP) or Attention Deficit, Hyperactivity Disorder (ADHD).” Disability and Society 26 (1): 65–78. doi:10.1080/09687599.2011.529667.
  • Truesdale-Kennedy, M., R. McConkey, P. Ferguson, and P. Roberts. 2006. “An Evaluation of a Family-centred Support Service for Children with a Significant Learning Disability.” Child Care in Practice 12 (4): 377–390.10.1080/13575270600863291
  • Trute, B., D. Hiebert-Murphy, and A. Wright. 2008. “Family-centred Service Coordination in Childhood Health and Disability Services: The Search for Meaningful Service Outcome Measures.” Child: Care, Health and Development 34 (3): 367–372. doi:10.1111/j.1365-2214.2008.00819. doi:10.1080/13575270600863291.

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