The National Disability Insurance Scheme: Administrators' Perspectives of Agency Transition to ‘User Pay’ for Early Intervention Service Delivery

Abstract

THE LAUNCH OF THE National Disability Insurance Scheme (NDIS) in Australia announced changes to the ways people with disabilities and families access services. These changes cover delivery of early childhood early intervention to families with infants and young children with disabilities. In July 2013, the NDIS was rolled out nationally in three pilot sites. This funded phenomenological study was conducted in one pilot rollout site with administrators from two agencies delivering such services. Analysis of the data identified factors that challenged professional practice and personal philosophy. The findings suggest that the long-term financial viability of community agencies is at risk. A crucial dilemma emerged concerning parent choice: to what extent does a ‘user pay’ system impose limitations to services being delivered in a family centred way?

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References

Banks

M. E.

(2003). Disability in the family: A lifespan perspective. Cultural Diversity and Ethnic Minority Psychology, 9(4), 367–384.

Britner

P. A.

, Morog

M. C.

, Pianta

R. C.

, & Marvin

R. S.

(2003). Stress and coping: A comparison of self-report measures of functioning in families of young children with cerebral palsy or no medical diagnosis. Journal of Child and Family Studies 12(3), 335–348.

Bronfenbrenner

(1992). Ecological systems theory. In Vasta

(Ed.), Six theories of child development: Revised formulations and current issues. Philadelphia, PA: Kinglsey.

Bruder

M. B.

(2000). Family-centred early intervention: Clarifying our values for the new millenium. Topics in Early Childhood Special Education, 20(2), 105–115.

Bruder

M. B.

(2010). Early childhood intervention: A promise to children and families for their future. Exceptional Children, 76(3), 339–355.

Carpenter

(2005). Early childhood intervention: Possibilities and prospects for professionals, families and children. British Journal of Special Education, 32(4), 176–183. https://dx-doi-org.web.bisu.edu.cn/10.1111/j.1467-8578.2005.00394.x

Cridland

E. K.

, Jones

S. C.

, Magee

C. A.

, & Caputi

(2014). Family-focused autism spectrum disorder research: A review of the utility of family systems approaches. Autism, 18(3), 213–222. https://dx-doi-org.web.bisu.edu.cn/10.1177/1362361312472261

Currie

, & Kahn

(2012). Children with disabilities: Introducing the issue. The Future of Children, 22(1), 3–11.

Davies

, Davis

, & Sibert

(2002). Parents' stories of sensitive and insensitive care by paediatricians in the time leading up to and including diagnostic disclosure of a life-limiting condition in their child. Child: Care Health and Development, 29(1), 77–82.

10.

Davis

, Clifton

, & Papadopoulos

(2015). Identifying autism early: The toddlers at risk of autism clinic model. Journal of Paediatrics and Child Health, 2015(1), 1–5. https://dx-doi-org.web.bisu.edu.cn/10.1111/jpc.12832

11.

Dodds

, Saggers

, & Wildy

(2009). Constructing the ‘ideal’ family for family-centred practice: Challenges for delivery. Disability and Society, 24(2), 173–186.

12.

Dunst

C. J.

(2007). Early intervention for infants and toddlers with developmental disabilities. In Odom

S.L.

, Horner

R.H.

, Snell

, & Blacher

(Eds.), Handbook of developmental disabilities (pp. 161–180). New York, NY: Guilford Press.

13.

Dunst

C. J.

, & Dempsey

(2007). Family–professional partnerships and parenting competence, confidence, and enjoyment. International Journal of Disability, Development & Education, 54(3), 305–318. https://dx-doi-org.web.bisu.edu.cn/10.1080/10349120701488772

14.

Dunst

C. J.

, & Trivette

C. M.

(2009). Capacity-building family-systems intervention practices. Journal of Family Social Work, 12(2), 119–143. https://dx-doi-org.web.bisu.edu.cn/10.1080/10522150802713322

15.

Early Childhood Intervention Australia. (2013a). Making a start. Building support for your child and family (2nd ed.) Retrieved from www.eciavic.org.au/documents/item/573.

16.

Early Childhood Intervention Australia. (2013b). A proud day Australia with DisabilityCare Australia now a reality! [media release]. Retrieved from www.eciavic.org.au/documents/item/454.

17.

Folkman

, & Moskowitz

J. T.

(2000). Positive affect and the other side of coping. American Psychologist, 55(6), 647–654.

18.

Gadamer

H. G.

(1987). Hermeneutics as practical philosophy. In Bayner

, Bohman

, & McCathy

(Eds.), After philosophy end or transformation (pp. 319–350). Cambridge, MA: MIT Press.

19.

Giorgi

(1983). Concerning the possibility of phenomenological research. Journal of Phenomenological Psychology, 14(Fall), 129–170.

20.

Guralnick

M. J.

(2011). Why early intervention works: A systems perspective. Infants & Young Children, 24(1), 6–28. https://dx-doi-org.web.bisu.edu.cn/10.1097/IYC.0b013e3182002cfe

21.

Hassall

, & Rose

(2005). Parental cognitions and adaptation to the demands of caring for a child with an intellectual disability: A review of the literature and implications for clinical interventions. Behavioural and Cognitive Psychotherapy, 33(1), 71–88. https://dx-doi-org.web.bisu.edu.cn/10.1017/S135246580400178X

22.

Head

L. S.

, & Abbeduto

(2007). Recognizing the role of parents in developmental outcomes: A systems approach to evaluating the child with developmental disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 13(4), 293–301.

23.

Heideggar

(1962). Being and time (J. Macquarrie & E. Robinson, Trans.). Oxford, UK: Basil Blackwell.

24.

Jennings

D. J.

, & Hanline

M. F.

(2013). Developmental screening referrals: Child and family factors that predict referral completion. Topics in Early Childhood Special Education, 33(2), 102–111. https://dx-doi-org.web.bisu.edu.cn/10.1177/0271121413489038

25.

Larkin

, Watts

, & Clifton

(2006). Giving voice and making sense in interpretative phenomenological analysis. Qualitative Research in Psychology, 3(2), 102–120.

26.

Mitchell

, & Sloper

(2002). Information that informs rather than alienates families with disabled children: Developing models of good practice. Health and Social Care in the Community, 10(2), 74–81.

27.

Moore

T. G.

(2012). Rethinking early childhood intervention services: Implications for policy and practice. Paper presented at the 10th Biennial National Conference of Early Childhood Intervention Australia, and the 1st Asia-Pacific Early Childhood Intervention Conference, Perth, Western Australia.

28.

Moran

(2000). Introduction to phenomenology. London, UK: Routledge.

29.

Morris

(2013). Troubled families: Vulnerable families' experiences of multiple service use. Child & Family Social Work, 18(2), 198–206. https://dx-doi-org.web.bisu.edu.cn/10.1111/j.1365-2206.2011.00822.x

30.

Patton

M. Q.

(1990). Qualitative evaluation and research methods (2nd ed.). Newbury Park, CA: Sage.

31.

ProBono Australia. (2012). Budget: Disability organisations welcome funds for the NDIS. Retrieved 22 November, 2016, from https://probonoaustralia.com.au/news/2012/05/budget-disability-organisations-welcome-funds-for-ndis/.

32.

Productivity Commission. (2011). Disability care support: Inquiry report, executive summary (No. 54, 31 July, 2001). Retrieved from www.pc.gov.au/inquiries/completed/disability-support/report/disability-support-executive-summary.pdf.

33.

Raising Children Network. (2016). Early intervention for children with a disability. Retrieved 30 November, 2016, from http://raisingchildren.net.au/articles/ndis_early_intervention_video.html/context/1685.

34.

Rouse

(2012). Family-centred practice: Empowerment, self-efficacy, and challenges for practitioners in early childhood education and care. Contemporary Issues in Early Childhood, 13(1), 17–26. https://dx-doi-org.web.bisu.edu.cn/10.2304/ciec.2012.13.1.17

35.

Ruggerone

(2013). Science and life-world: Husserl, Schutz, Garfinkel. Human Studies, 36(2), 179–197. https://dx-doi-org.web.bisu.edu.cn/10.1007/s10746-012-9249-6

36.

Shonkoff

, & Meisels

S. J.

(2000). Handbook of early childhood intervention. Cambridge, UK: Cambridge University Press.

37.

Smith

J. A.

, Flowers

, & Larkin

(2009). Interpretative phenomenological analysis: Theory, method and research. London, UK: Sage.

38.

Smith

J. A.

, & Osborne

(2003). Interpretative phenomenological analysis. In Smith

J.A.

(Ed.), Qualitative psychology (pp. 53–80). London, UK: Sage.

39.

Strong

, Wald

, Miller

, & Alwan

(2005). Current concepts in screening for noncommunicable disease: World Health Organization consultation group report on methodology of noncommunicable disease screening. Journal of Medical Screening, 12(1), 12–19.

40.

Thompson

C. J.

, Locander

W. B.

, & Pollio

H. R.

(1989). Putting consumer experience back into consumer research: The philosophy and method of existential-phenomenology. The Journal of Consumer Research, 16(2), 133–146.

41.

Tomasello

N. M.

, Manning

A. R.

, & Dulmus

C. N.

(2010). Family-centered early intervention for infants and toddlers with disabilities. Journal of Family Social Work, 13(2), 163–172. https://dx-doi-org.web.bisu.edu.cn/10.1080/10522150903503010

42.

Trute

, & Hiebert-Murphy

(2002). Family adjustment to childhood developmental disability: A measure of parent appraisal of family impacts. Journal of Pediatric Psychology, 27(3), 271–280.

43.

van Manen

(1990). Researching lived experience. Human science for an action sensitive pedagogy. Ontario, Canada: The State University of New York.

44.

Viscardis

(1998). The Family-centred approach to providing services. Physical & Occupational Therapy in Pediatrics, 18(1), 41–53. https://dx-doi-org.web.bisu.edu.cn/10.1080/J006v18n01_03

45.

Watson

(2008). ‘Something you have to do’—Why do parents of children with developmental disabilities seek a differential diagnosis? Development Disabilities Bulletin, 36(3), 168–198.

46.

Wilson-Costello

, Friedman

, Minich

, Fanaroff

A. A.

, & Hack

(2005). Improved survival rates with increased neurodevelopmental disability for extremely low birth weight infants in the 1990s. Pediatrics, 115(4), 997–1003. https://dx-doi-org.web.bisu.edu.cn/10.1542/peds.2004-0221

47.

Woolfenden

, Posada

, Krchnakova

, Crawford

, Gilbert

, Jursik

& Kemp

(2015). Equitable access to developmental surveillance and early intervention—understanding the barriers for children from culturally and linguistically diverse (CALD) backgrounds. Health Expectations, 18(6), 3286–3301. https://dx-doi-org.web.bisu.edu.cn/10.1111/hex.12318

48.

Young

, Jones

, Starmer

, & Sutherland

(2005). Issues and dilemmas in the production of standard information for parents of young deaf children—parents' views. Deafness and Education International, 7(2), 63–76.

49.

Young

, Tattersall

, Uus

, Bamford

, & McCracken

(2004). To what extent do the characteristics of the object of evaluation influence the choice of epistemological framework? The case of universal newborn hearing screening. Qualitative Health Research, 14(6), 866–874. https://dx-doi-org.web.bisu.edu.cn/10.1177/1049732304265971