New England Partners in Recovery Consortium Submission -
Joint Standing Committee on the NDIS’s Inquiry into ‘The provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition’
About the Submitting Organisation
The New England Partners in Recovery (NEPIR) Consortium is a group of 7 organisations responsible for delivering the Commonwealth Department of Health’s Partners in Recovery Initiative in the New England region of Northern NSW. The Consortium delivers Partners in Recovery (PIR) services across a significant geographic area, with the borders aligned to the old New England Medicare Local boundaries and stretching from Quirindi and Nundle in the South to the Queensland border in the North, and from the Great Dividing Range in the East to Mungindi and Wee Waa in the west. The Consortium is made up of Flourish Australia (lead agency), Anglicare Northern Inland, the
Benevolent Society, Billabong Clubhouse, Challenge Community Services, EACH and GoCo. The PIR
Initiative commenced in July 2013.
NEPIR is currently supporting people, who live with severe and persistent mental health issues and complex needs, to transition to the National Disability Insurance Scheme (NDIS). We commenced the transition process in July 2016 and have recently received an extension which will enable us to continue the transition of the program to the NDIS until June 2019. As such we have significant insight into the provision of services to people with severe and persistent psychosocial disability as they transition into the NDIS, and are well placed to provide input into some aspects being covered by this Inquiry. Thank you for the opportunity to make a submission.
Introduction
The National Disability Insurance Scheme (NDIS) commenced rollout in the New England region of NSW, where New England Partners in Recovery (NEPIR) operates, in July 2016. In accordance with changes to our Department of Health contract, PIR is tasked with transitioning existing PIR participants to the NDIS.
NEPIR is ultimately supportive of the NDIS and its’ anticipated positive impacts for people living with psychosocial disability. The key pillars of the Scheme, being choice and control, will see strong benefits for people with psychosocial disability and other disabilities. Likewise, services will be required to tailor their services to reflect participant goals and are likely to become more effective in the delivery of necessary services. However, we have experienced and foresee a number of difficulties that should be addressed by the National Disability Insurance Agency (NDIA) in conjunction with the Commonwealth and State Governments and the service sector to ensure efficient implementation and ongoing sustainability of the Scheme. NEPIR’s submission as outlined below makes 18 (eighteen) recommendations which are primarily aimed at ensuring that the NDIS is more responsive to the needs of people with psychosocial disability and that those not eligible for the NDIS have certainty in relation to their ongoing access to support.
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Terms of Reference
This submission will address each element of the Terms of Reference, with recommendations against a number of these Terms.
A: the eligibility criteria for the NDIS for people with a psychosocial disability;
From our experience of supporting NEPIR participants to transition to the NDIS, we have encountered an inconsistent and imprecise application of the eligibility criteria for people living with a psychosocial disability. While the overarching NDIS principle of shared eligibility criteria regardless of disability type is supported by NEPIR, the inconsistent application of these criteria to people with psychosocial disability is having detrimental impacts on the people we support.
We have seen people with psychosocial disability being denied eligibility for the scheme based on the type of their mental health diagnosis rather than the functional impact caused by it. This appears contrary to advice from the NDIA and in the NDIS Act 2013 (Cth), which at Section 24 outlines the disability requirements that lead to an eligibility assessment. This section highlights the key Disability Requirements for Scheme participation as being:
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Disability attributable to one or more of physical, social, intellectual, cognitive, neurological, sensory, physical or psychiatric impairments, and
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Permanency, and
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Substantially reduced functional capacity to undertake activities listed under 6 key domains – communication, social interaction, learning, mobility, self-care and self-management, and
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The impairment impact the person’s capacity for social and economic participation, and
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The person is likely to require support under the NDIS for their lifetime. In addition, Section 24(2) allows for the episodic nature of many mental health issues, by recognising that impairments which change in intensity may nonetheless be permanent.
We have been told in some instances that issues like depression (and other mood disorders), borderline personality disorders and post-traumatic stress disorders are not ‘disabilities’ for the purposes of the Scheme. These decisions are currently being reviewed so we are not in a position to comment on the success of reviewing decisions of ineligibility. However, the impact of ineligibility decisions on people with psychosocial disability, who are often vulnerable and have complex needs, is often significant and can be traumatic.
In another example, a person we support was deemed eligible for the Scheme, but the Support Facilitator (the worker who provides support under PIR) was informed that the person’s eligibility might be changed in the future because the person’s main diagnosis is depression and there is uncertainty about whether this qualifies as a disability for NDIS purposes.
On other occasions, the focus on the ‘primary’ disability to the exclusion of other disabilities fails to capture the very complex needs of people with co-morbid factors and can lead to a package not reflective of their needs. The mixed messages around the importance of diagnosis versus the importance of functional impact in assessing eligibility underlies an inconsistent approach to the disability requirements and impacts confidence and certainty in the Scheme.
On the permanency element of the disability requirements we have also had an inconsistent application of the requirements as outlined in the Act. On at least two occasions, eligibility has been questioned or declined due to a condition not being ‘fully treated and stabilised.’ NEPIR is not able to find a reference to this phrase in NDIA guiding documentation or legislation, and it has been our experience that in many instances there might be numerous available treatment options but limited or no opportunity to test each one. Likewise NDIA were not able to find reference to this phrase when asked for an explanation of the ineligibility decision that was based on this phrase.
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Furthermore, an ineligible decision and the resulting delay in getting appropriate NDIA funded supports ‘wrapped around’ people with psychosocial disability, particularly following the withdrawal of other programs, might exacerbate issues experienced by people and significantly contribute to their ongoing symptoms.
In addition, early experiences in our region of New England NSW suggests that in many locations Local Area Coordinator (LAC) teams and NDIS Planners generally have a low level of understanding of mental health issues. Many of these staff appear to have backgrounds in physical or intellectual disability, and as a result their understanding of mental health, and in particular its episodic nature, is still developing. While there will inevitably be development and greater expertise acquired over time in regards to mental health issues, until this expertise is acquired the application of eligibility criteria to people with psychosocial disability is likely to be inconsistent.
Recommendations
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The NDIA, in consultation with relevant experts, should develop clearer, more detailed guidance on the application of eligibility criteria for people with psychosocial disability, to reduce inconsistent decision making by LACs and Planners.
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An appropriate provider/s should be engaged by the NDIA to deliver training and education for planners and LAC staff on psychosocial disability, mental health issues, impacts on daily living, recovery focused support models and strengths based language.
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NDIA and the mental health sector to work collaboratively to identify and implement effective strategies for sharing of information between the mental health sector and the NDIA/LAC agencies.
B: the transition to the NDIS of all current long and short term mental health Commonwealth Government funded services, including the Personal Helpers and Mentors services (PHaMs) and Partners in Recovery (PIR) programs, and in particular;
i. whether these services will continue to be provided for people deemed ineligible for the NDIS;
The transition of PIR participants to the NDIS has been slow moving and characterized by inconsistent decision-making and substantial changes to implementation as the transition rolls out. Many of the policy changes which impact PIR service delivery agencies appear to be caused by a lack of effective communication between the Department of Health (PIR funding body) and the NDIA. Fundamental elements of the transition, such as access processes, reporting requirements, guidance materials and allocation of Coordination of Supports in plans are continually changing and still not finalised eight months after transition commenced. PIR organisations are working as effectively as possible to progress the program transition, but ongoing uncertainty is impacting workloads and staff morale across our Consortium members and other PIR organisations and creating anxiety for the people we support.
As an example of inconsistency between information supplied by DOH and NDIA about PIR program transition, PIR program guidelines require us to assist eligible PIR participants to test eligibility and transition participants to the Scheme as soon as practicable. However, advice received from the NDIA Northern NSW Engagement Team indicated we should not test eligibility for our participants until directed to do so by NDIA. The contrary advice is not an isolated incident and makes it far more difficult for PIR to implement transition of participants to the NDIS as we have to delay implementation in order to seek clarification.
While the NDIS is built on choice and control, the absence of alternative arrangements almost forces participants with psychosocial disability to apply for the NDIS or risk unavailability of services. This is particularly true of the PHaMS program, where progressive cuts to funding levels have led to a significant reduction in services to existing participants. In this transition period, the withdrawal of
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services before new NDIS funded services arrive to take their place is creating significant service gaps.
For people who are not deemed eligible or choose not to test their eligibility, PIR services will continue to be provided until the indicated conclusion of the program on 30 June 2019 (recently extended in the New England from the original conclusion date of 30 June 2017). This presents greater certainty that PIR participants will receive necessary support for at least the next two and a half years. We have been advised that Continuity of Support arrangements for PIR participants and participants in other Commonwealth funded mental health programs will be advised in due course. Our understanding from the Hunter Trial site is that 80-90% of PIR participants are deemed eligible for the Scheme and will receive funded supports through the NDIS, but that the number of eligible Day to Day Living (D2DL) and Personal Helpers and Mentors (PHAMs) participants who are eligible for NDIS is significantly lower. As a result, Continuity of Support arrangements will be vital for a large number of people currently supported through Commonwealth mental health programs who won’t be eligible for or interested in accessing the NDIS. Until these arrangements are advised there will be a significant degree of anxiety and uncertainty experienced by both people living with psychosocial disability and the sector which supports them.
Recommendations
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NDIA and DOH should urgently finalise PIR transition arrangements to provide certainty for staff and people living with psychosocial disability. This could include consideration of the feasibility of existing rollout timeframes.
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The Government should finalise and release Continuity of Support arrangements as a matter of urgency so that people who are not eligible or are unsure about applying for the Scheme have information and clarity about their options for the future.
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Until Continuity of Support arrangements are finalised, progressive cuts to PHaMS should be reconsidered to ensure continuity of service provision during this transition phase.
C: the transition to the NDIS of all current long and short term mental health state and territory government funded services, and in particular;
i. whether these services will continue to be provided for people deemed ineligible for the NDIS;
As New England PIR is a Commonwealth Government funded program we do not feel we have the depth of expertise to make detailed comment on this point. However, we do know that the NDIS is intended to cater for 60,000 people with psychosocial disability by the time it is fully rolled out. This number represents only a small proportion of the estimated 600,000 Australians who have a severe mental disorder (DoHA 2013). It is therefore essential that other mental health programs offered by state governments continue to be provided in order to meet community need. We understand that in NSW key state funded mental health programs, such as the Housing and Accommodation Support Initiative (HASI), are not transitioning into the Scheme at this point in time. Such programs need to be maintained to cater to the vast majority of people with significant mental health issues who will not be eligible for the NDIS.
We understand that where State funded mental health programs continue to run, participants receiving support through these programs may also receive ‘top-up funding’ from the NDIS to address any gaps in the service they are currently receiving. We believe this is a good strategy in the interim period where State Funded Mental Health Programs and the NDIS co-exist.
Recommendation
- Relevant State Governments should continue to fund state based mental health programs in the interim period while Commonwealth funded programs are transitioning to NDIS, to ensure continuity of care for people who are not eligible for NDIS and to meet the high level of community need for mental health support services.
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- NDIA should continue to make ‘top-up’ NDIS funding available for people accessing State funded mental health programs where there are psychosocial disability needs which are not able to be met by existing State funded programs.
D: the scope and level of funding for mental health services under the Information, Linkages and Capacity building framework;
Currently, only $132 million is allocated to ILC funding, with the lion’s share of the original funding now paying for LACs. This means that only 0.6% of the total NDIS budget is available for achieving the ILC’s important goals: that is, building the capacity of mainstream services to be inclusive of people with disability; and making sure that people with disability and their families have the skills, resources and confidence to participate in the community.
The level of funding - and its short-term nature - is not at a sufficient level for mental health and other disability support services to effectively improve access to mainstream services and build capacity for individuals and their families. The ILC will not replace funding for existing programs that provide specialised, ongoing support for people with a mental health issue who are not eligible for the NDIS.
Without this ongoing support, the needs of those with mental health issues are likely to escalate, pushing them into the NDIS. This is at odds with the insurance approach of the Scheme and its focus on providing the right support at the right time to reduce lifetime costs.
Recommendation
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The level of funding remaining for the ILC program should be reviewed, given the important and ambitious aims of the program.
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State and Commonwealth Governments need to provide assurances to people with mental health issues and their families that they will continue to be able to access appropriate specialised community mental health supports, where they are not eligible for the NDIS, to assist them to maintain their independence and wellbeing.
E: the planning process for people with a psychosocial disability, and the role of primary health networks in that process;
We are in the early stages of the planning process for the people we support and are developing our expertise in this area. In many instances, the planning process has been a positive one for people with psychosocial disability and has provided them with the opportunity to outline their needs and goals and to have these addressed. The NDIA’s focus on goals and strengths once Plans are completed is a positive aspect for people and aligns closely with the recovery principles practiced in the mental health sector.
In many instances however, there can be a tension between the ‘recovery model’ of care as practiced by mental health programs such as PIR, PHaMS and D2DL which focus on strengths and potential, and the Scheme’s focus on disability and its impact during the access and planning process. If not recognized and sensitively handled, this can have negative impacts on the recovery journey. The requirement of asking people with psychosocial disability to recount events of unwellness and to provide the LAC or the NDIA evidence of traumatic events can be significantly retraumatising for the people we support.
In a recent example, during a planning meeting involving a PIR participant, the applicant was asked to describe the traumatic events in his past which led to a PTSD diagnosis. After recounting years of continued abuse from parents, two occasions where a step-father figure attempted to stab him, and intense bullying at school, the PIR participant later reported sitting up until the early hours of the following morning sobbing, while his wife talked him through his suicidal thoughts. While a range of
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complex factors were involved in this scenario, the NDIA assessment process played a contributory role. It highlights the need for greater awareness and understanding on the part of NDIA/LAC staff, to ensure appropriate and sensitive handling of such matters.
In our region, to NEPIR’s knowledge the Hunter, New England and Central Coast Primary Health Network (HNECC PHN) have not undertaken work in the planning process for people with psychosocial disability. However, NEPIR believes the PHN has an important role to play in educating General Practitioners (GPs) and other health professionals about the NDIS and how to help people to achieve positive funding outcomes. GPs play a central role in supporting access requirements by providing evidence of diagnosis and the functional impact of this on the person’s day to day life. But in many instances, GPs are more likely to focus on immediate health and medication needs, rather than taking a more holistic approach. There is a need for GP education and the provision of tools and resources to assist them to understand the NDIS and their role in supporting people with mental health issues to gain access.
Recommendation
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The NDIA should develop strategies, including education and training of its’ staff, to increase understanding of recovery practice and strengths based language and their applicability to the access and planning phases of NDIS transition.
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PHN’s should take an active role in educating GP’s and other health professionals on the NDIS and how to assist people accessing the Scheme to achieve positive outcomes.
F: whether spending on services for people with a psychosocial disability is in line with projections;
New England PIR believes it is too early to comment on whether spending on services for people with a psychosocial disability is in line with projections. However, we do know from the COAG Disability Reform Council’s Quarterly Report (October 2016) that the proportion of people with psychosocial disability who joined the Scheme in the first quarter of 2016/17, as a proportion of all people joining the Scheme in that period, was low at 5.8%. Further, the COAG report tells us that the eligibility rate for people with a psychosocial disability applying for the Scheme is one of the lowest, at 69.4%. (This compares to an eligibility rate of 95.9% for people with intellectual disability).
The COAG report also tells us that the Scheme is already experiencing a number of cost pressures arising from various factors including higher than expected numbers of children entering the Scheme, increasing package costs, and a mismatch between benchmark package costs and actual package costs. The report identifies that these pressures require a management response to ensure sustainability. It would be very disappointing if the slower take-up of the Scheme by people with mental health issues were to inadvertently become a ‘management response’, as part of the approach to contain costs. People with lived experience of mental health issues should not be further disadvantaged simply because they were a late inclusion into the Scheme, and the Scheme has not sufficiently evolved to appropriately take their needs into account.
Negative media reports about the level of funding for the Scheme, such as those in the ACT in late 2016 regarding the under-estimation of NDIS demand in the ACT and subsequent ‘filling’ of available packages, has the effect of seriously impacting confidence in the Scheme for an already vulnerable group of people.
NEPIR anticipates that in the longer-term the Scheme is likely to see significant gains in economic activity and service availability in regional areas, which is likely to offset any under-estimation of the cost of the Scheme. NEPIR looks forward to seeing further analysis of the economic benefits of the NDIS, particularly in regional and remote communities.
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Recommendation
- The Government’s strong commitment to fully funding the NDIS should be made explicit, so as not to cause further concern or alarm for already vulnerable members of the community and their families. Further, the slow take-up of the Scheme by people with psychosocial disability should not be used as a cost management strategy.
G: the role and extent of outreach services to identify potential NDIS participants with a psychosocial disability; and
In the New England area, at this point in time we are not aware of coordinated efforts being made by the NDIA or LACs to identify potential NDIS participants with a psychosocial disability. Existing Commonwealth Government funded programs such PIR, D2DL and PHAMS, and NSW Government programs such as HASI and the public health system, will have an existing cohort of participants who are likely to be eligible for the Scheme. Outside of these cohorts NEPIR is not aware of other outreach services working in this area in any coordinated fashion. As the immediate focus for the NDIA and LACs appears to be on participants transitioning from existing NSW funded disability programs, with new participants not transitioning until July 2018, it is likely that significant efforts will need to be made to engage people with psychosocial disability in the Scheme.
Under the initial PIR contract (2013-2016), a core function of PIR was to actively seek out and assist people living with severe and persistent mental health issues who are socially and/ or geographically isolated. The capacity of PIR to undertake this vital work was significantly limited under the most recent PIR contract, where the introduction of Maximum Client Loads and other measures to limit further expansion of the program have capped our numbers. Once full transition to Scheme occurs and PIR block funding disappears, the availability of appropriately skilled workers with sufficient time to undertake this important engagement work will be virtually non-existent. This is a particular issue in regional areas where the large geographical coverage and low threshold populations will make it particularly difficult to access people in remote towns, particularly where those people may not have been known to the disability or mental health sector previously.
Recommendation
- The NDIA and other Government Departments should work together to develop and fund outreach strategies targeted at rural and remote communities and other isolated or disengaged groups.
H: the provision, and continuation of services for NDIS participants in receipt of forensic disability services;
NEPIR does not feel it has sufficient knowledge of this area to comment. As a general comment, the existing difficulty in effectively engaging with the correctional system to facilitate better pathways for people transitioning back into the community is likely to be exacerbated under a competitive funding model where community managed organisations (CMO’s) are not able to allocate unfunded time to this task.
I: Any other relevant matters
Potential impacts of the competitive funding model on effective service coordination for people with psychosocial disability
New England PIR, like PIR’s around Australia, is a service coordination program which has delivered excellent results for participants by encouraging services and natural supports to work in a more collaborative and coordinated manner. People with psychosocial disability have benefitted from services having the time and funding to work collaboratively to identify innovative solutions. The
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competition model being driven by NDIS, while likely to have a number of positive benefits, does reduce incentives for services to work collaboratively. The pressure on staff and organisations to win ‘business’ in order to fund their own positions has driven anti-collaborative behavior which the sector had made important strides in addressing.
In addition, the lack of available funding for activities outside of direct service provision will place significant strain on the ability of service providers to attend interagency and coordinated meetings which are key elements in building service cooperation and partnerships.
Lack of effective engagement of local Indigenous people and people from CALD backgrounds in
NDIS
Our experience in the New England, where approximately 30% of the people we support in PIR are from Aboriginal or Torres Strait Islander (ATSI) background, is that more work could be done to engage ATSI communities in the NDIS. This is true also of CALD groups, although the numbers of people from CALD backgrounds being supported in New England PIR is very low. In many instances we have encountered a lack of interest and/or understanding about the NDIS with people we support from ATSI backgrounds, which makes encouraging people to test their eligibility difficult. Things like Access Request Forms being sent out in envelopes which make them look like Centrelink letters and the word ‘Insurance’ in NDIS making people think they have to spend money to purchase insurance have been barriers to engagement. Another barrier has been people accepting that they are satisified with the supports that they currently get, without the understanding that service options might be significantly limited once full NDIS transition has occurred. In communities with particularly high ATSI populations which are already struggling with a lack of services, such as Moree and neighbouring villages, services which have seen a reduction in staffing such as PHaMS have not yet been replaced by other services. This is creating service gaps and has seen the loss of some Aboriginal workers with significant experience working with people with psychosocial disability in a culturally appropriate way. It is likely to take some time for new service providers to build up the level of trust and engagement that previous agencies had developed with the Indigenous community, which is contributing to suspicion and uncertainty about the benefits of the Scheme. While we are working through these issues with the people we support in NEPIR, we believe that further work can be done by NDIA to develop culturally appropriate resources and outreach strategies to engage the ATSI community in rural and remote areas.
Recommendation
- The NDIA should implement culturally appropriate and specific engagement strategies in rural and remote areas to engage ATSI communities in the NDIS.
Inconsistency in initial eligibility testing and ARF requests
People with psychosocial disability that we support through PIR have experienced significant delays and inconsistency in assisting PIR participants to do initial eligibility testing and having Access Request Forms sent to them for completion. Our experience of going through the National Access team has been varied, with some Access Request Forms sent and being received within the week, whereas others have had to be requested up to three times and have taken 2-3 months to arrive. On some occasions the NAT has contacted or sent ARFs directly to the applicant rather than the nominated contact person, further delaying and confusing the application process as ARFs are then submitted by the person applying for access without sufficient supporting evidence of functional impact. In addition, the approach to initial eligibility testing and sending of Access Request Forms can be very much dictated by who is on the other end of the phone. The inconsistency and lack of clarity is confusing for people with psychosocial disability and the workers supporting them to apply, and should be addressed.
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Recommendation
- NDIA should implement more stringent procedures around initial eligibility testing and sending of Access Request Forms to enable consistency and certainty in the process.
Costing of NDIS services
Further consideration of the costing of services should be made to ensure ongoing viability of the Scheme. There is the risk that organisations will make decisions regarding their service model and future service provision based on activities that attract the highest remuneration and are therefore sustainable in the longer term. Unless this point is addressed, we are likely to see a narrowing of service provision driven by economic considerations and not by participant need. An example is the higher hourly price paid for Coordination of Supports, which is seeing many agencies in the New England area offering Coordination of Supports and group activities but fewer agencies electing to provide core supports due to the lack of margin. In the short and longer term this will potentially create a supply issue, with an oversupply of Coordinators and an undersupply of critical support services. In addition, there is the potential for a gradual reduction in the skill set in the disability service industry as cost pressures reduce available funding which will put downward pressure on wages and opportunities for professional development.
Recommendation
- The NDIA should investigate and address pricing concerns raised by the sector to ensure sustainability of the Scheme and guarantee ongoing quality and supply.
Travel
In the New England region, as in other rural and remote areas, there are often significant geographical distances to be covered to provide support to people. For many people experiencing psychosocial disability, adequate provision for travel and transport is the key factor in enabling access to vital support services. The developing framework around travel and transport under NDIS has created a situation where there is little consistency in how organisations are providing and charging for travel and transport. This creates confusion for people receiving NDIS Individual Funding Plans and for services like New England PIR which will be providing Coordination of Supports. The NDIS should develop a stronger Framework around funding for travel and transport under the NDIS to allow for greater consistency in approach.
Recommendation
- The NDIA should develop a stronger Framework around funding for travel and transport under the NDIS to ensure greater consistency and certainty for people accessing the Scheme and for service providers.
Positive outcomes for people with psychosocial disability who are approved for NDIS supports
NEPIR retains belief in the Scheme as a positive development for many people with psychosocial disability due to the beneficial outcomes experienced by many people we have already supported to access the NDIS. Despite the challenges outlined above, once these challenges have been navigated we have seen a number of packages which are reflective of a person’s needs and goals and enable people with psychosocial disability to access supports that have not previously been available. While we do not believe the sample size is large enough yet to comment on the balance of positive versus negative experiences, the high satisfaction rate advertised by the NDIA is evidence of overall satisfaction with systemic changes driven by NDIS. NEPIR looks forward to ongoing implementation of the Scheme in a way which benefits people with psychosocial disability and provides funding and opportunity to enable them to exercise choice and control and achieve their goals.
Thank you again for the opportunity to provide input into this Inquiry.