Carer of a person with disability
I am writing to advocate for the strongest of Advocacy protections for people with disabilities which impact on their decision making.
Furthermore, I would like to place my following evaluation of the NDIS generally on the public record and would request please your feedback.
Evaluating the NDIS
9 July 2015
By Adam Mamone
Reflections on the National Disability Insurance Scheme (NDIS) from a Carer of family members with disabilities and Disability Professional.
The National Disability Insurance Scheme (NDIS) is producing a macro level change to Australian disability services which seeks to provide a national support system focused on the needs and choices of people with disabilities (PWD)(NDIS, 2013). By exploring reviews of the trial sites, this paper will evaluate some of the current (and likely) NDIS’s policy achievements and unintended policy consequences.
Overview of the NDIS
The NDIS is the new approach to disability support which facilitates person-centred support for persons with significant and permanent disability (NDIS, n.d.a). This approach is the first of its kind in Australia to provide PWD with a legislated right to support (NDIS, 2013). NDIS funding is based on an insurance system where eligibility is assessed and then the person’s support funding is approved (NDIS, n.d.a.).
According to the legislation (NDIS, 2013), the policy has two broad requirements. Firstly, the National Disability Insurance Agency (NDIA) is required to respect the informed choices of PWD, provide support to PWD when communicating with the NDIA, engage carers appropriately and build community trust. Secondly, the NDIS Board is required to ensure the sustainability of the NDIS and manage risk, partly by ensuring that the scope of support plans is both necessary and reasonable.
History of Disability policy
Since 1991, the Commonwealth State Territory Disability Agreement has provided the agreed frameworks for national delivery of services (DSS, 2014). As a result of a request from the Gillard government, the Productivity Commission undertook a review of the disability support system (McClelland, 2014). According to the review (Productivity Commission, 2011), the system is underfunded, inequitable, inefficient, fragmented and lacks choice. Consequently, the Commission recommended that the system needs to be national, reliable and coherent – with improved funding and targeting of resources, changing the locus of choice to PWD.
The NDIS’s purpose is to assist eligible people to achieve their goals by the funding of necessary and reasonable supports which take into account existing informal and formal supports (NDIS, n.d.c). Eligible participants are people with permanent and significant disability who require help with activities of daily living or who require early intervention services (NDIS, n.d.d).
In July 2014, the Parliamentary joint standing committee (PJSC) reported on the implementation and administration of the NDIS during the first nine months of the scheme’s operation utilising data collected from public hearings from some of the trial sites. Briefly, these results included that:
• more than 54000 PWD had support plans completed.
• significantly variable plans had been completed depending on the planner.
• workforce shortages were identified.
• service providers expressed concerns regarding their financial sustainability.
• a significant number of plans appear to have not been activated.
• only three percent of PWD managed their own plans.
It is critical that these same areas are reviewed again prior to the full roll out of the NDIS.
Another evaluation called the NDIS Citizen’s Jury Scorecard Project was completed between September 2014 and May 2015 and evaluated some of the trial sites (PWDA, 2015). The project evaluation utilised a process called deliberate democracy to include the views of both Australians that help fund the NDIS and the participants themselves. Over a period of three and a half days, the citizen’s jury evaluated the evidence presented by NDIS participants. Additionally, a social media forum and three focus forum groups for clients with intellectual disability were completed. The forums collated information in order to make policy recommendations (Hendriks, cited in Bridgman & Davis, 2004).
Briefly, the results of the NDIS evaluation confirmed that some PWD were achieving quality outcomes. These included that:
• many participants felt that they were now at the centre of the planning process and had greater control.
• most unmet needs were being met
• some PWD were becoming more independent, obtaining employment and enrolling in study courses.
Recommendations included the need for:
• government provided services not being withdrawn until alternative providers are available.
• development of safeguards for more vulnerable PWD to protect them from abuse.
• the NDIS website to be more accessible.
• development of a quality assurance system.
• participants having sufficient time to complete their plans.
• well-trained planners utilising a quality control framework such as the International Organization for Standardization (ISO).
The ISO provides assistance to organisations so that it can evaluate its prioritisation of both economic and societal responsibilities (ISO, 2015). Although voluntary, one evaluation of this success is the International Standard ISO 26000 (ISO, 2015). The ISO 26000 provides guidance on community responsibility by providing assistance on general global business definitions relating to social responsibility terms, characteristics of community responsibility, human rights and practices and principles related to social responsibility (ISO, 2015). Although organisations cannot be certified against this guidance, they can be evaluated in relation to this guidance (Frost, 2010). Pressures for organisations to comply with ISO 26000 emanate from governments, clients and associations (Frost, 2010). Refining ISO 26000 to the extent that it incorporates auditing is suggested in order to assist policy evaluation as well as social work’s role in the NDIS’s new world of commercialised welfare provision.
Unintended policy consequences
Cognitive Disabilities & the NDIS
The NDIS may not meet all of the needs of some disability groups. An unintended result of the NDIS, which paradoxically concerns PWDs’ choice, is that it may reduce the meaningful choices that persons with cognitive disabilities make due to fear/actual exploitation. As some PWD have non supportive family and friends, without an effective advocate with the person’s interests at heart, the PWD is at risk of being exploited due to having funding which they control. Additionally, as businesses/corporations are driven by the need to accumulate shareholder profits, some may seek to control the source of their profits: the person with a cognitive disability.
Lack of voice
Furthermore, the NDIS has privileged the voice of certain disability groups while minimising others (Thill, 2015). For example, although people with intellectual disabilities (PWID) are estimated to be 60 to 70% of the participants of the NDIS (Inclusion Australia, 2015), the design and implementation of the NDIS has arguably had minimal meaningful input from PWID and their carers (Bigby, 2014). This lack of representational consultation is argued to have resulted in the NDIS’s assumptions being inconsistent with the complex context of PWID (O’Connor, 2014).
Assumptions of the NDIS
O’Connor (2014) argues that these assumptions include that:
• PWID or their supporters will be adept at communicating their needs to a NDIA assessor.
• provided funds will be managed by the individual or another manager.
• money can be utilised to buy supports from different sources.
• purchased supports will be better than the current disability services.
• if an individual is not eligible for an individual funding arrangement then they will be directed to an accessible mainstream service.
Is the NDIS roll out too fast?
According to Windholz (2014) the speed of the NDIS design and development is likely to bring with it a number of unintended problems. Firstly, the sudden investment of funding is likely to result in a “honey pot” (p. 90) impact where both competent and incompetent services are attracted to PWD, sometimes with more commitment to profitmaking than helping the PWD. This may result in harm to the vulnerable PWD who is now controlling finances. Additionally, harm may occur to smaller service providers who cannot compete with profit orientated multinationals (Baker, cited in Windholz, 2014). Secondly, there is risk of harm to PWD. The NDIS requires a quality assurance and safeguarding framework which includes provider certification against standards and enforceable monitoring against these standards. However, this framework is yet to be developed (DSS, 2015). In the short term, the NDIS is reliant on current state and territory regulation which presents concerns including: lack of robustness, increased demand volumes and lack of flexibility (Windholz, 2014).
Is everybody represented?
According to the NDIA organisation, the scheme’s intent is to include the perspectives of PWD/carers during the exercise of their statutory functions (NDIS, n.d.b). Consequently, the membership of the Independent Advisory Council is intended to be representative of PWD. However, it appears that the Commonwealth Minister has not appointed appropriate members as none appointed have intellectual disabilities (NDIS, n.d.b).
Focusing resources on the NDIS seems to have had the effect of taking resources away from other programs. For example, in December 2014 the Federal Liberal government announced that it would reduce the amount of Peak Body funding by forty percent and only fund select organisations, defunding eight Peak Body’s’ representing two hundred thousand members with sensory, physical and intellectual disabilities (Inclusion Australia, 2015). This is despite the recent evaluations of the NDIS which recommended that the NDIS consult with individuals with intellectual disabilities and their carers in order for their needs to be better reflected in the NDIS’s support system (Inclusion Australia, 2015). Consequently, the defunding of this historically marginalised and numerically significant group will likely result in their voices yet again being silenced (Inclusion Australia, 2015).
Privatisation of Government disability services?
In New South Wales, the introduction of the NDIS has been linked to the withdrawal of government provided services (NDIS, n.d.f). This is likely to have numerous consequences, particularly for PWID who have complex support needs. Firstly, some PWID and their families can have difficulties with engaging with services as they require a more time intensive and flexible response which has not been occurring in the NDIS trial sites (Soldatic, van Toorn, Dowse, & Muir, 2014). Secondly, some people with multiple diagnoses, such as mental health and intellectual disability, require the collaboration of multiple agencies (Windholz, 2014). Such collaboration is difficult to achieve with smaller services who have been provided with minimal resources by the NDIS. Thirdly, under Ageing, Disability & Homecare, PWID with complex needs have three levels of assistance, from local front line support to specialist regional support to state level specialist support (NSWDFCS, 2013). In contrast, the NDIS is only assisting with front line assistance (n.d.e). Furthermore, although the NDIS is funding the training of carers in behaviour support, it is not funding the general training of staff which is likely to result in less competent support (NDIS, n.d.e). Fourthly, the NDIS does not provide a safety net for PWD. For example, the NDIS does not fund timely crisis support accommodation or case management (NDIS, n.d.e).
In conclusion, although the NDIS is still in its trial phase, evaluations completed so far have been encouraging. Nevertheless, unintended consequences of the policy include those associated with client groups who have challenged/impaired decision making, the roll out being too fast, and the removal of government provided services. These issues have been highlighted by various parties but they remain unresolved. Consequently, further evaluation of these issues would appear to be critical prior to the full rollout of the scheme. Furthermore, addressing these unintended outcomes during a slower and more measured roll out pace would assist the NDIS to reach the lofty expectations created by the proponents.
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