Submission to the Joint Standing Committee on the National
Disability Insurance Scheme’s
Inquiry into Independent Assessments
March 2021
About Noah’s Ark
Noah’s Ark is a non-government organisation that was founded in 1971. We provide services to children with disabilities and other additional needs (0-12 years) and their families and carers. Noah’s Ark provides National Disability Insurance Scheme (NDIS) services from 20 locations across metropolitan and regional Victoria, ACT and Albury NSW. Last year these programs reached over 2,500 families. We have been involved in the NDIS from its commencement, in the Barwon and ACT trials. Noah’s Ark is also involved in the Victorian Kindergarten Inclusion Support, Pre-School Field Officer and Parent to Parent Programs. We provide training and resources nationally and internationally.
Noah’s Ark has played a major role in the introduction of best practice services and support for inclusion in children’s services for young children with a disability in Victoria and nationally. We have strong links to early childhood intervention researchers and fields internationally.
Noah’s Ark welcomes the opportunity to provide information to the Joint Standing Committee on the National Disability Insurance Scheme’s Inquiry into Independent Assessments in relation to children 7-14 years of age.
John Forster CEO
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Background
The NDIS, in the Access and Eligibility Policy with Independent Assessments,1 and associated Planning Policy for Personalised Budgets and Plan Flexibility2 consultation papers, proposes major changes for NDIS participants over 7 years old in relation to independent assessments, access to the Scheme, participants personalised budget and plan flexibility, and changes to the planning process. The consultation papers have been developed in response to criticism about the current approach to access, eligibility, and planning processes due to “…inconsistencies and variability in the scope, type and quality of information provided, and frustrations for all concerned, where clarifications are sought and further information has to be obtained, creating uncertainty, and delaying decision making.” 3 (p6)
The proposal outlined in the consultation papers fundamentally changes the approach to individualised planning that was central to the establishment of the NDIS. Under the original model, decisions were made based on assessments provided by professionals working with the participant, a planning meeting that discussed goals and a budget built on achieving those goals. For most participants, access to the Scheme was based on having been in a State /Territory program before the NDIS or having a diagnosis which was on a List that granted access.
The proposed approach changes the focus from diagnosis and goals to a measure of functional capacity determined by an Independent Assessment (IA). This new approach effectively shifts responsibility for decisions about access and level of funding to the results of the IA. The aim appears to be to introduce a simple process for deciding access and funding allocations, which will replace the uncertainties of decisions made by NDIS delegates, who are public servants.
The limitation of what is proposed is that people with a disability are in very different circumstances because of the impact of their disability and their desired level of social participation. In addition, bypassing professionals who know a person’s capabilities because of working with them over time to preferencing assessment results from ‘independent’ practitioners and using tools which are not designed for this use, is stepping into the unknown. It proposes a simple solution to a complex problem, and in doing so creates new risks that individuals with disabilities will be disadvantaged.
Noah’s Ark supports the need for a more consistent and equitable approach to NDIS access and planning decisions and a focus on individual’s functional capacity and the influence of
1 NDIS (2020). Independent Assessment Framework. Retrieved from: https://www.ndis.gov.au/participants/independent-assessments/independent-assessment-framework 2 NDIS (2020). Planning Policy for Personalised Budgets and Plan Flexibility Consultation paper. Retrieved from: https://www.ndis.gov.au/community/have-your-say/planning-policy-personalised-budgets-and-plan-flexibility 3 Australian Government Department of Social Services & The National Disability Insurance Agency (2021). Joint Submission to the Joint Standing Committee on the National Disability Insurance Scheme’s Inquiry into Independent Assessments.
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environment, health and other individual factors outlined in the IA Framework.4 However, there are specific issues that must be considered in relation to children with disability and their families. The proposed approach is not in the best interests of the child. Furthermore, an IA approach is contrary to what we know enables access to, and engagement with, services for families experiencing disadvantage.
Issues
IA is not a new idea in the and there is much to be learnt from others about the risks and benefits of such an approach. For example, independent doctors and clinical psychologists are contracted for the Disability Support Pension assessment, and the Australian Government utilises a national panel of assessors for Supported Employment assessments. In Victoria, the Department of Education and Training contracts an independent provider to conduct assessments for the Program for Students with a Disability. In the USA, many states use a vendor-based system for conducting independent assessments for early intervention (EI) services for children with developmental delay/disability. Other US states ensure multi- disciplinary authentic, criterion and norm-referenced eligibility assessments, through the local service providers who meet practice standards and utilise an established suite of measures.
In addition to learning from the experience of state/territory, commonwealth and international approaches, Noah’s Ark also recommends that the NDIS revisit the approach to IA through the lens of participants – in this instance, children and their families. The proposed approach has 6 steps within the access and eligibility process through IA and a further 7 steps within the planning process. That is 13 steps before the family can begin to engage with service providers and implement the plan. This arduous process does not address the current challenges described in the consultation paper, including that the NDIS is confusing and frustrating and is too complex and difficult to navigate. 5 (p5).
- Workforce
One of the underlying issues related to implementation of IA is the unprecedented workforce pressures the sector is currently experiencing. There is a shortage of paediatric allied health practitioners with the skills, knowledge, and experience to work effectively with children with disability and their families through the provision of independent assessments. Furthermore, it appears that the eight organisations selected to conduct IAs by the NDIS have experience in aged care, disability employment, rehabilitation, and therapy services for adults. To the best of our knowledge, none have the necessary expertise to conduct assessments with children and the recruitment of new graduates for this purpose is clearly inadequate. The results of child assessments often have significant implications for children and their families and must be conducted by highly skilled and experienced practitioners. Indeed, the prospect of a child being assessed by someone who neither knows the child nor has extensive paediatric experience should be regarded as irresponsible.
4 Ibid 5 Ibid
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The development of a workforce for children does not appear to be a priority in the development of the NDIS. A workforce strategy that addresses the need for a comprehensive range of training options for those working in the field across pre-service, in-service, and postgraduate training is critical. These issues have been described for the broader workforce, but not the childhood sector, in the Joint Standing Committee on the NDIS Workforce Interim Report. 6 Noah’s Ark recommends the NDIS ensure issues related to the sector working with children and young people are addressed in the upcoming National Workforce Plan.
- Assessment Tools
It is beyond the scope of this submission to comment in detail about the suite of assessments intended for use. However, we have read the IA Selection of Assessment Tools paper (NDIS, 2020c) and note some concerns. One key issue is that assessment tools are only valid for the purposes they were designed for. The selected suite of assessment tools was not designed to provide the information needed to develop a plan budget. Despite the intent that “From late 2021, information from participant’s independent assessment(s) will be used as a key input to determine a participant’s personalised plan budget”. 7 (p18), there is no information currently available on exactly how the NDIS plans to calculate support budgets using data from the assessments. This requires clarification if the NDIS is to address one of the current challenges described in the consultation paper about the lack of transparency around how the NDIA makes decisions. 8 (p5). The current approach, which appears to be using assessment tools for purposes for which they were not designed, including adding some form of scoring, and without proper scientific rigour, opens the NDIS to questions about the validity of the assessment.
- Elements of Best Practice in Assessment
There are also some aspects to the proposed approach and suite of measures that are not supported by research on eligibility assessment for children. Whilst some best practice elements have been addressed in the criteria in the IA Framework, (including the need for suitable governance, future research, coverage of developmental domains, reliability, validity, and functional content with the chosen measures), there are additional criteria that should be considered. Macy & Bagnato offer a framework of standards for judging assessment in that include eight elements: Acceptability, Authenticity, Collaboration, Evidence, Multi-factors, Sensitivity, Universality and Utility.9
6 Australian Government (2020). Joint Standing Committee on the National Disability Insurance Scheme NDIS Workforce Interim Report. Retrieved from: https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/National_Disability_Insurance_Scheme/workforce/Interim_Report 7 Australian Government. The Department of Social Services & The National Disability Insurance Agency. (2021). Joint Submission to the Joint Standing Committee on the National Disability Insurance Scheme’s Inquiry into Independent Assessments. 8 Ibid 9 Macy, M., & Bagnato, S. J. (2010). Keeping it “REAL” with authentic assessment. NHSA DIALOG, 13(1), 1-20.
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Two of the issues in these standards that we believe have not been given due consideration in the IA Framework include:
3.1 Collaboration
Collaboration with parents of children being assessed for eligibility is obviously critically important. Collaboration with a multi-disciplinary team of professionals is also essential. Parents of children with a disability have typically been worrying about their child’s development for a long time before they interact with the NDIS. They have sometimes been involved in screening assessments through their local Maternal and Child Health Nurse, medical assessments through the GP, developmental assessment with a Paediatrician, eligibility assessments for additional support at preschool and school, and/or specialist assessments with the audiologist or allied health practitioner. The approach proposed in the IA Framework is not clear about the extent to which information provided by these other professionals is either welcome or utilised. The synthesis of perspectives from parents and a range of professionals who know the child and family provides more robust information on which to make decisions about eligibility and planning.
3.2 Multi-factors.
The IA Framework indicates that “Some people present with a degree of complexity that requires more in-depth deliberation than assessment findings can provide on their own. The complexity, nuances and intertwining factors may need to be examined more closely or may prompt more questions that need to be answered”. 10 (p24). We suggest that children, by the very nature of their dependence on parents/caregivers, and the unpredictable nature of the developmental trajectory early in life, present with complexity that requires a more robust approach to assessment, including ecological data. This ecological approach includes collection of data across multiple methods, sources, settings, and occasions, and is described in Macy & Bagnato standards as ‘multi-factors’.11 Such an ecological approach to assessment should also include assessment of family support needs.
- An integrated and developmental approach
We recommend the NDIS develop an approach to improving early identification, referral and eligibility practices that is better integrated into the current service system, respects the role of families in their child’s life, is in line with best practice guidelines and also ensures a more consistent and equitable approach to NDIS access and planning decisions. Established international frameworks might prove helpful. 12
10 Ibid 11 Ibid 12 Dunst, C. J., Trivette, C. M., Appl, D. J., & Bagnato, S. J. (2004). TRACElines.
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An integrated and developmental approach also requires further research to examine:
- The role of conventional and authentic assessments in determining eligibility.
- The degree to which conventional tests accomplish or do not accomplish eligibility and planning decisions.
- The development of more appropriate authentic measures that will enable the right children to receive the right support at the right time.
- Children’s voice and agency
Finally, it is critical that children with disabilities have their life experiences valued in any decision-making process. Supporting children to develop their own agency is an important developmental process. Children with disabilities have the right to be recognised as ‘experts in their own lives’. Any process that does not value their voice and the people who support them, including their family and the professionals who work with them, is counterproductive to building the supportive community the child and the NDIS need to succeed.