Submission to the Joint Standing Committee on the National
Disability Insurance Scheme
6th September 2019
Physical Disability Council of NSW
3/184 Glebe Point Road, Glebe NSW 2037
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Who is the Physical Disability Council of NSW?
The Physical Disability Council of NSW (PDCN) is the peak body representing people with physical disabilities across New South Wales. This includes people with a range of physical disability issues, from young children and their representatives to aged people, who are from a wide range of socio-economic circumstances and live in metropolitan, rural and regional areas of NSW.
Our core function is to influence and advocate for the achievement of systemic change to ensure the rights of all people with a physical disability are improved and upheld.
The objectives of PDCN are:
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To educate, inform and assist people with physical disabilities in NSW about the range of services, structure and programs available that enable their full participation, equality of opportunity and equality of citizenship.
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To develop the capacity of people with physical disability in NSW to identify their own goals, and the confidence to develop a pathway to achieving their goals (i.e.: self-advocate).
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To educate and inform stakeholders (i.e.: about the needs of people with a physical disability) so they are able to achieve and maintain full participation, equality of opportunity and equality of citizenship.
Introduction:
The Physical Disability Council of NSW (PDCN) appreciates the opportunity to provide feedback to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) on its inquiry into NDIS Planning, as part of its role to inquire into the implementation, performance and governance of the NDIS.
The NDIS is one of the most important social reforms in Australian history and will provide individually funded support to an estimated 460,000 Australians with disability when roll out is completed in 2020. At its foundation the NDIS seeks to provide participants and their families greater choice and control over the disability supports they receive. Given the scale of the transition to the NDIS, the implementation of the scheme has not been without significant challenges.
Since 2016 PDCN has run numerous capacity building programs to assist people in accessing the NDIS and implementing NDIS plans. This has included NDIS Ready workshops, NDIS Plans in Practice workshops and NDIS self-management workshops. Through these programs, PDCN has followed several NDIS participants from pre-planning to plan implementation and has observed numerous issues with the implementation of the NDIS and with the consistency of the planning process. These issues will be outlined within this submission.
PDCN acknowledges that, since the May Federal election, the Federal Government has been proactive in reviewing the NDIS and its implementation, for example by establishing the Joint Standing Comminute on the NDIS and conducting a review of the NDIS Act. It is still too early to 2
see what recommendations these reviews will make and what effects they may have, however PDCN is optimistic they will be positive and lead to change for people with disability.
This submission will use responses and case studies from a recent survey conducted by PDCN to highlight experiences with the planning process and illustrate the flaws and inefficiencies raised by our members who are NDIS participants. It will then make recommendations for how the planning process could be improved. Please note, all case study participant names have been changed within this submission.
Case Study 1
John is a complete paraplegic who lives on the NSW North Coast. John has been a NDIS participant for three years – he is on his third plan – and in that time has experienced three different planners, all with varying degrees of experience and knowledge about his disability. John found his most recent planner to be ineffectual and not aware of his specific needs, particularly regarding assistive technology. The process for obtaining assistive technology is arduous and burdensome. John had some assistive technology needs arise post-planning and he lodged an amendment with the NDIA. John was then contacted by the NDIA who advised they had received the application and would get back to John with the outcome. That was 10 months ago and John is yet to receive an outcome and is still waiting for essential supports, which he has self-funded in the meantime.
The problems with the NDIS planning process are in part a lack of communication on how to prepare for a planning meeting or plan review, and the length of the process. The planning process would be considerably improved by giving people the opportunity to see what is lodged with the NDIA, followed by the opportunity to view a draft plan, making the process for accessing
supports such as assistive technology more streamlined, and trusting people’s ability to
understand their needs – John survey respondent no. 36
In PDCN’s observations, attain funding for home modifications and assistive technology appears to be an arduous, time-consuming process that requires participants to obtain quotes and trial equipment before funding can be included in a plan. This means participants are often left without
vital services Some participants have been using assistive technology and had home
modifications for several years and long before the NDIS was introduced. They are experts in their own lives, they know what they need, and the process to obtain these supports should not be more complicated than it needs to be – particularly when it comes to replacing ‘like for like’.
Case Study 2
Robert is the father of and carer for Edward, a 39 year old paraplegic. Edward lives at home with his parents Edward is on his second plan. His parents, who had previously self-funded Edward’s supports, were proactive in getting assistance and information when the NDIS rolled out in their area. They tried to be as prepared as possible for their first (and subsequent) planning meeting, to ensure all Edward’s needs were covered. Despite this, Edward’s first plan was limited and did not address all of his needs. His second plan is a marginal improvement, however there are still gaps, particularly when it comes to home modifications. Edward requested home modifications in
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his first plan, but these are yet to be approved. Modifications to the home would mean an increase in Edwards independence, with the ability to prepare his own meals and complete tasks that are reasonable for any 39 year old. Gaining this independence would prepare Edward as his parents age and become less able to support him.
These modifications required detailed quotes and assessments before approval and inclusion in a plan. Edward’s parents have requested a review of his plan, however they are still awaiting the outcome. Robert believes that had home modifications and assistive technology been approved in Edward’s original plan, there would be no need for a review and his plan would be able to be rolled over each year, with only minor reviews for medical supplies, maintenance and occasional replacement.
The problems from our perspective with the NDIS are: The LACs do not appear to have been trained adequately to fully understand the plan writing process so that it includes all the issues that have been discussed and agreed to during a review and including them in a plan so that an item can be actioned when a formal application is submitted. The time it takes from a plan being approved, an application with information and costs submitted and the item approved. Feedback on the progress of an application is virtually impossible to obtain – Robert, survey participant no. 21
PDCN has observed numerous instances where plans could be rolled over or approved for longer than one year, particularly where major home modifications or assistive technology are required. Once the required home modifications and assistive technologies are in place, a participant’s plan could be reviewed every two or three years, or in some cases only as the need arises.
Case Study 3
Mary is the mother and sole carer for Edwina, a young woman with a vision impairment. Edwina has been an NDIS participant for three years. To build and maintain her independence Edwina requires funding for a support worker, daily activities, therapy, allied health and vision support, along with assistive technology and home modifications. Mary was meticulous in her preparation for the planning meetings, however found Edwina’s plans did not meet her needs. Mary has requested two unscheduled planning reviews. The first review took a matter of weeks and the funding requested was reinstated. The second, however, took several months, and although the funding requested was largely reinstated, it was a very stressful time for both Edwina and Mary. Mary is Edwina’s sole carer, does not work and has her own health issues. Edwina recently received her third plan, and funding was reduced by a third, particularly in the areas of daily activities and support workers. Mary and Edwina also need to trial new home modification equipment before it can be included in her plan, which is a lengthy and time-consuming process. The home modifications and assistive technologies requested are pertinent to Edwina as she seeks to build her independence and rely less on her mother as she ages. Mary is going to request another unscheduled plan review, however she is concerned about the length of time it will take and the stress it will place on the family.
I have requested two unscheduled plan reviews that I personally prepared and submitted with the same support documents that I had provided at the scheduled review meetings. The unscheduled
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reviews followed each scheduled approved plan since we joined the NDIS when we were forced to meet with LACs as the outsourced conduit for NDIS who are not qualified to do the initial assessment or draft the plans… NO MORE LACS! They are generally lovely people, but the LAC program is a big part of the problem with the NDIS and has no part in finding the solution. – Mary, survey respondent no. 27
The survey responses indicated that participants and their families believe that LACs and NDIA planners are inconsistent in their approach to planning. LACs and NDIA planners are lacking in the knowledge and experience in asking questions that identify needs and gather the data required to develop the plan. For example, several participants report a lack of understanding of daily support needs – leading to a significant reduction in hours of care in their plan. This in turn leads to an increase in plan reviews, as outlined by the three case studies above. In each scenario, the original planning meeting was carried out by a LAC. It would have been of benefit to the participants had the planning meeting carried out by an NDIA Planner, and they had the opportunity to see a draft plan. It would also allow for a more consultative process with greater liaison between participants and planners and would enable support gaps to be raised and comprehensively addressed during the construction of plans, making the planning process more efficient and reducing the overall number of plan reviews requested.
Recommendations:
Recommendation 1: The NDIA to lift the staffing cap to employ more NDIA planners and ensure NDIA planners are always used for participants with complex disabilities and/or lives. Where a LAC is the NDIA representative in a planning meeting, these LACs need to ensure they are trained and encouraged to work towards understanding individual needs and goals as opposed to pre-empting needs based on disability type and therefore misrepresenting the actual needs of the participant.
Recommendation 2: Introduce draft plans and a more personalised consultation process, to ensure draft plans meet participant needs.
Recommendation 3: Undertake a review of the process for obtaining home modifications and assistive technology with a view to streamlining the process.
Recommendation 4: Introduce a mechanism to rollover plans with clear guidelines for how and when this will occur.
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