NDIA Accountability Project

Impact of parenting program access on children with neurodevelopmental and sensory disabilities

‹ PrevPage 1 of 5 · Source p. 1Next ›

Joint Standing Committee Inquiry—Current Scheme Implementation and Forecasting for the NDIS

Submission, February 2022

A/Professor Trevor Mazzucchelli, Curtin University

Emeritus Professor Bruce Tonge, Monash University

Professor Sharon Dawe, Griffith University

2

Joint Standing Committee Inquiry—Current Scheme Implementation and Forecasting for the NDIS

Terms of Reference

As part of the committee’s role to inquire into the implementation, performance and governance of the National Disability Insurance Scheme (NDIS), the committee has decided to conduct an inquiry into current scheme implementation and forecasting for the NDIS, with a focus on how the NDIS is implemented and funded, and what supports are or should be available for people with disability in addition to the NDIS. The committee will inquire into and report on current scheme implementation and forecasting for the NDIS, with particular reference to:

a.  The impact of boundaries of NDIS and non-NDIS service provision on the demand for NDIS
    funding, including:
              i.    the availability of support outside the NDIS for people with disability (e.g.
          community-based or ‘Tier 2’ supports), and
              ii.    the future of the Information, Linkages and Capacity Building grants program;
b.  The interfaces of NDIS service provision with other non-NDIS services provided by the States,
     Territories and the Commonwealth, particularly aged care, health, education and justice
     services;
 c.  The reasons for variations in plan funding between NDIS participants with similar needs,
    including:
              i.    the drivers of inequity between NDIS participants living in different parts of Australia,
              ii.   whether inconsistent decision-making by the NDIA is leading to inequitable
            variations in plan funding, and
             iii.   measures that could address any inequitable variation in plan funding;
d. How the NDIS is funded, including:
              i.    the current and future funding sources for the NDIS,
              ii.    the division of funding between the Commonwealth, States and Territories, and
             iii.    the need for a pool of reserve funding;
e.  Financial and actuarial modelling and forecasting of the scheme, including:
              i.    the role of insurance-based principles in scheme modelling, and
              ii.    assumptions, measures, and methodologies used to forecast and make projections
          about the scheme, participants, and long-term financial modelling;
  f.  The measures intended to ensure the financial sustainability of the NDIS (e.g. governance,
    oversight and administrative measures), including:
              i.    the role of state and territory governments, and the Disability Reform Ministers
           Meetings,
              ii.    the arrangements for providing actuarial and prudential advice about the scheme,
         and
             iii.    the way data, modelling, and forecasting is presented in public documents about the
           NDIS, (e.g. NDIS Quarterly Reports and Reports by the Scheme Actuary), and
         iv.   measures to ensure transparency of data and information about the NDIS;
g.  The ongoing measures to reform the scheme including:
              i.    the new early childhood approach, including whether or how early intervention and
           other supports intended to improve a participant’s functional capacity could reduce
             their need for NDIS funding, and
              ii.    planning policy for personalised budgets and plan flexibility; and
h.  Any other related matters.

PAFRA Comments

We are writing on behalf of the Parenting and Family Research Alliance (PAFRA)—a multidisciplinary research collaboration of experts from leading Australian universities and research centres [www.pafra.org]. The alliance is actively involved in conducting research, communication, and advocacy pertaining to parenting, families, and evidence-based parenting support. PAFRA is supported by the Australian Research Council Centre of Excellence for Children and Families over the Life Course.

Summary of Submission

  • Parenting programs have been shown to enhance lasting skill development associated with participation and day-to-day functioning in children with neurodevelopmental and sensory disabilities.
  • An inadvertent consequence of the National Disability Insurance Scheme (NDIS) is that fewer parents are accessing evidence-based parenting support and fewer children benefiting from optimal parenting practices.
  • The NDIS should incorporate mechanisms to permit greater access and participation in evidence- based parenting support.

We ask that the Joint Standing Committee on the National Disability Insurance Scheme consider the following:

Regarding TOR:

  c. The reasons for variations in plan funding between NDIS participants with similar needs,
    including:
         i.   the drivers of inequity between NDIS participants living in different parts of Australia,
         ii.  whether inconsistent decision-making by the NDIA is leading to inequitable variations
         in plan funding, and
         iii. measures that could address any inequitable variation in plan funding

Since the Australian Government’s NDIS came into full operation in 2020, agencies are no longer block funded to provide parenting support. Instead, parents negotiate with NDIS planners for the services they will receive within their disability support plan1. There is inconsistency in the provision of parenting support through the NDSI and confusion amongst parents, service providers, and NDIS planners as to whether parenting support may be funded through the scheme. Parenting support is less likely to be provided since it requires parents (and NDIS planners) to have to have knowledge of parenting programs, their benefits, and to advocate for them. Further, compared to individually delivered parenting programs, group programs are less likely to be funded because these require multiple parents/caregivers to request the same service. The consequence is that parents are less likely to access this form of support, and children do not benefit from optimal parenting practices during their formative early years2.

Regarding TOR:

 g. The ongoing measures to reform the scheme including:
         i.   the new early childhood approach, including whether or how early intervention and
       other supports intended to improve a participant’s functional capacity could reduce
         their need for NDIS funding, and
         ii.   planning policy for personalised budgets and plan flexibility.

Parents and caregivers have a central role in optimising their children’s development and wellbeing3. Children with neurodevelopmental disabilities, such as autism, cerebral palsy, foetal alcohol spectrum disorder, and intellectual disability, typically require high-impact teaching practices and

Additional Opportunities

additional opportunities to learn communication, language and daily-living skills4. Parents and carers are children’s first teachers and have a pervasive influence on children in their early years. Parenting practices have been found to be an important modifiable factor for optimal child development5. As such, it is vital that parents of children who have a range of disabilities receive high-quality support for their important role.

How do Children with a Disability Benefit from Parenting Support?

Parenting affects many different aspects of a child’s development. Parenting is the common pathway through which many interrelated developmental goals relating to children’s language, hour capacity for self-regulation, relationship with siblings and peers, cognitive functioning, mental health, and overall well-being can be supported1. Specifically, for children with developmental disability, the lasting benefits of parenting support has been shown to:

  • Promote language and communication (e.g., initiating communication, vocabulary, functional use of communication)7, 8, 9, 10.
  • Build social and peer interaction skills (e.g., joint attention, play skills)11, 12, 13.
  • Enhance daily living skills (e.g., dressing skills, toileting skills)14, 15.
  • Strengthen emotion-regulation, reduce challenging behaviour, increase children’s community participation, and learning readiness16, 17, 18.
  • Reduce mental health symptoms and enhance children’s wellbeing19, 20, 21.

How do Families with a Child with a Disability Benefit from Parenting Support?

Parents and other family members also benefit from participating in parenting programs. Parents of children with a disability who participate in evidence-based parenting support report:

  • Enhanced parenting skills5, 20, 21.
  • Less conflict within the home5, 16, 20, 21.
  • Less stress5, 20, 21, 22.
  • Stronger and happier relationships with all family members5, 20, 21. Enhanced parenting skills, less conflict and stress, and stronger relationships within the home increase parents’ capacity to support their children’s development23, 24.

Is Parenting Support Cost Effective and Likely to Reduce the Need for Future NDIS Funding?

Evidence-based parenting programs typically result in considerably more savings than the cost of implementing them1. In the case of parenting support for families who have a child with a disability, cost savings often stems from an increased capacity of parents to return to work5. They also represent a means of sustainable support for children with a disability25, 26, 27.

Recommendations

  • The benefits of evidence-based parenting support for children and families should be promoted to NDIS planners, parents/guardians, and agencies providing NDIS supports.
  • While the primacy of individual service selection should be retained, mechanisms should be introduced that will increase access and participation in evidence-based parenting programs including group programs. Organisations need to be funded to organise and deliver parenting support.

References

1Buckmaster, L., & Clark, S. (2019). The National Disability Insurance Scheme: a quick guide (Research Paper Series, 2018-19, Issue. https://www.aph.gov.au/About_Parliament/Parliamentary_Departments/Parliamentary_Library/pubs/rp/rp1819/Quick_Guides/Nati onalDisabilityInsuranceScheme 2Einfeld, S. L., Sanders, M., Tonge, B., Gray, K. M., Sofronoff, K., & The MHYPEDD Team. (2018). Is the statewide delivery of Stepping Stones Triple P effective? https://pfsc.psychology.uq.edu.au/article/2018/10/statewide-delivery-stepping-stones-triple-p-effective 3Doyle, F. L., Morawska, A., Higgins, D. J., Havighurst, S. S., Mazzucchelli, T. G., Toumbourou, J., … Sanders, M. R. (2021, May 21). Policies are needed to increase the reach and impact of evidence-based parenting supports. https://doi.org/10.31234/osf.io/732ws 4National Research Council. (2001). Educating children with autism. The National Academies Press. https://doi.org/doi:10.17226/10017 5Sanders, M. R., & Mazzucchelli, T. G. (2018). How parenting influences the lives of children. In M. R. Sanders & T. G. Mazzucchelli (Eds.), The power of positive parenting: Transforming the lives of children, parents and communities using the Triple P system (pp. 5-31). Oxford University Press. 6Laski, K. E., Charlop, M. H., & Schreibman, L. (1988). Training parents to use the natural language paradigm to increase their autistic children’s speech. Journal of Applied Behavior Analysis, 21(4), 391-400. https://doi.org/doi: 10.1901/jaba.1988.21-391 7Kaiser, A. P., Hancock, T. B., & Nietfeld, J. P. (2000). The effects of parent-implemented enhanced milieu teaching on the social communication of children who have autism. Early Education and Development, 11(4), 423-446. https://doi.org/10.1207/s15566935eed1104_4 8Meadan, H., Ostrosky, M. M., Zaghlawan, H. Y., & Yu, S. (2009). Promoting the social and communicative behavior of young children with autism spectrum disorders: a review of parent-implemented intervention studies. Topics in Early Childhood Special Education, 29(2), 90-104. https://doi.org/http://dx.doi.org/10.1177/0271121409337950 9Rakap, S., & Rakap, S. (2014). Parent-implemented naturalistic language interventions for young children with disabilities: A systematic review of single-subject experimental research studies. Educational Research Review, 13, 35-51. https://doi.org/10.1016/j.edurev.2014.09.001 10Roberts, M. Y., & Kaiser, A. P. (2011). The effectiveness of parent-implemented language interventions: A meta-analysis. American Journal of Speech - Language Pathology, 20(3), 180-199A. https://doi.org/10.1044/1058-0360(2011/10-0055) 11Keen, D., Rodger, S., Doussin, K., & Braithwaite, M. (2007). A pilot study of the effects of a social-pragmatic intervention on the communication and symbolic play of children with autism. Autism, 11(1), 63-71. https://doi.org/10.1177/1362361307070901 12Kasari, C., Gulsrud, A. C., Wong, C., Kwon, S., & Locke, J. (2010). Randomized controlled caregiver mediated joint engagement intervention for toddlers with autism. Journal of Autism and Developmental Disorders, 40(9), 1045-1056. https://doi.org/10.1007/s10803-010-0955-5 13Vismara L. A., & Lyons G. L. (2007) Using perseverative interests to elicit joint attention behaviors in young children with autism: Theoretical and clinical implications for understanding motivation. Journal of Positive Behavior Interventions, 9(4), 214–228. https://doi.org/10.1177/10983007070090040401 14Kroeger, K., & Sorensen, R. (2010), A parent training model for toilet training children with autism. Journal of Intellectual Disability Research, 54(6), 556–567. https://doi.org/10.1111/j.1365-2788.2010.01286.x 15Russell, P. S. S., John, J. K., Lakshmanan, J., Russell, S., & Lakshmidevi, K. M. (2004). Family intervention and acquisition of adaptive behaviour among intellectually disabled children. Journal of Learning Disabilities, 8(4), 383-395. https://doi.org/10.1177/1469004704047506 16Koegel, L. K., Stiebel, D., & Koegel, R. L. (1998). Reducing aggression in children with autism toward infant or toddler siblings. Journal of the Association for Persons with Severe Handicaps, 23(2), 111-118. https://doi.org/10.2511/rpsd.23.2.111 17Kurani, D., Nerurka, A., Miranda, L., Jawadwala, F., & Prabhulkar, D. (2009). Impact of parents’ involvement and engagement in a learning readiness programme for children with severe and profound intellectual disability and complex needs in India. Journal of Intellectual Disabilities, 13(4), 269-289. https://doi.org/10.1177/1744629509355751 18Shelton T. L., & Barkley R. A. (1992). The role of parent training groups in the treatment of attention-deficit hyperactivity disorder. Child and Adolescent Psychiatric Clinics of North America, 1, 519–536. https://doi.org/10.1016/S1056-4993(18)30601-1 19Kousha, M., & Kakrodi, M. A. (2019). Can parents improve the quality of life of their children with attention deficit hyperactivity disorder? Iranian Journal of Psychiatry, 14(2), 154. https://doi.org/10.18502/ijps.v14i2.995 20Ruane, A., & Carr, A. (2019). Systematic review and meta-analysis of Stepping Stones Triple P for parents of children with disabilities. Family Process, 58(1), 232-246. https://doi.org/10.1111/famp.12352 21Tellegen, C. L., & Sanders, M. R. (2013). Stepping Stones Triple P-Positive Parenting Program for children with disability: a systematic review and meta-analysis. Research in Developmental Disabilities, 34(5), 1556-1571. https://doi.org/10.1016/j.ridd.2013.01.022 22Moes D. (1995). Parent education and parenting stress. In R. L. Koegel, and L. K. E. Koegel (Eds.) Teaching children with autism: Strategies for initiating positive interactions and improving learning opportunities (pp. 79–93). Paul H. Brookes. 23Woodman, A. C., Mawdsley, H. P., & Hauser-Cram, P. (2015). Parenting stress and child behavior problems within families of children with developmental disabilities: Transactional relations across 15 years [Empirical Study; Longitudinal Study; Quantitative Study]. Research in Developmental Disabilities, 36, 264-276. https://doi.org/http://dx.doi.org/10.1016/j.ridd.2014.10.011 24Hartley, S. L., Seltzer, M. M., Barker, E. T., & Greenberg, J. S. (2011). Marital quality and families of children with developmental disabilities. International Review of Research in Developmental Disabilities, 41, 1-29. 25Lord, C., & Bishop, S. L. (2010). Autism spectrum disorders: diagnosis, prevalence, and services for children and families. Social Policy Report. Volume 24, Number 2. Society for Research in Child Development. https://files.eric.ed.gov/fulltext/ED509747.pdf 26Matson, M. L., Mahan, S., & Matson, J. L. (2009). Parent training: A review of methods for children with autism spectrum disorders. Research in Autism Spectrum Disorders, 3(4), 868–875. https://doi.org/10.1016/j.rasd.2009.02.003 27McConachie, H., & Diggle, T. (2006). Parent implemented early intervention for young children with autism spectrum disorder: A systematic review. Journal of Evaluation in Clinical Practice, 13(1), 120–129. 10.1111/j.1365-2753.2006.00674.x