Building 1, Level 2, 14 Aquatic Drive
Frenchs Forest NSW 2086
PO Box 361, Forestville NSW 2087
T 02 8977 8300 F 02 8977 8399 E contact@autismspectrum.org.au www.autismspectrum.org.au
ABN 12 000 637 267
Written Submission to the Joint Standing Committee on the National Disability Insurance Scheme –
Thank you for the opportunity to provide a written submission in respect of NDIS Planning.
Autism Spectrum Australia (Aspect) is Australia’s largest not-for-profit provider of services and supports for people on the autism spectrum and their families/carers. Our mission is to provide person centred solutions which are flexible, responsive and evidence informed. In our work, we focus on the strengths and interests of people on the autism spectrum, and we work in partnership with them, their families and their communities. We work to understand people on the autism spectrum from their perspective. Our approach is autism-specific. Our research focuses on best practice. We expect positive change and progress towards positive goals and outcomes. Aspect Therapy provides early intervention, therapy and positive behaviour support services in New South Wales, Victoria, South Australia and the Australian Capital Territory. We currently provide services to 2425 individuals with NDIS funding packages, employing 210 Allied Health Practitioners and Educators.
We provide comment and recommendations on the questions most relevant to our organisation and the partcipants with whom we work.
A. The experience, expertise and qualifications of planners; Aspect Therapy staff see first-hand the impact of the diverse experience, expertise and qualifications of planners. When a plan is produced by a planner who has skills and experience (lived and/or professional) we are able to work with participants to support clearly identified, relevant and functional goals. The planning process leads smoothly into the delivery of services and supports. However, when this is not the case, there is confusion, and time, energy and resources are wasted, with participants missing out on vital supports.
In general, we can attest to a steady improvement in the quality of plans, and this is particularly the case with early childhood plans where there is a greater consistency and quality. However, participants and families are often desperate to get a certain planner because the planner has expertise and understanding. We need a system where there can be confidence in all planners to deliver consistent, high quality plans. No participant should be negatively impacted by a plan that is produced by a planner who does not have the skill to provide this vital service to an appropriate level.
When planners are inexperienced, have little or no understanding of disability, and are poorly supported, we see gross inequities for participants, including funding levels in plans that range from grossly inadequate to excessive.
This plays out most significantly for some of the most vulnerable participants (e.g. low socio economic/ diverse backgrounds, with limited education and capacity) who are not as able to advocate successfully to convince planners of their level of need. In many situations, the level of need would be very evident to someone who is appropriately skilled. The issue is exacerbated further with the participants who receive inappropriate levels of funding often having the least capacity to ask for reviews, or having the means to go through the appeals process. The impact of a participant receiving an inadequate plan is hugely significant on the individual, their family and providers.
Aspect Therapy staff regularly receive reports from families regarding a lack of disability awareness training, understanding of the demands of the caring role, and at times, lack of basic respect shown by planners during the planning process. Aspect Therapy staff also note a lack of autism awareness and understanding, which can result in plans containing unrealistic and/or non-functional goals. There is little understanding of the evidence based around interventions and supports for autistic people. It can be very difficult for families to convince planners of the need to include funding for Assistive Technology trials, as they do not understand the evidence base to support AAC devices for people with autism. There is regular evidence that Planners (and others within NDIS) do not understand that Diagnostic Levels do not equate to level of need for support or funding. We are still concerned that some participants with a Level One Diagnosis of Autism may be denied funding or receive inadequate funding, based on the diagnosis, not on their functional need.
Recommendations:
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All planners to have relevant qualifications and experience.
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All planners to have skills to communicate respectfully and clearly with people from diverse backgrounds.
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National comprehensive training and support to ensure consistency across the country in terms of planning competence and funding packages.
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Planners have access to additional disability-specific support when and as required.
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There are clear and transparent processes for ensuring consistency of both plans and funding packages (auditing, collating feedback, reporting).
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When issues are identified with individual planners, there is support and training provided to upskill or manage performance.
B. The ability of planners to understand and address complex needs; Aspect Therapy provides support to many participants who have extremely complex needs and significant behaviours of concern. There is a lack of transparency in how funding allocations are made, and it is hard to understand how clients with complex needs do not receive adequate funding when reports from providers and others who have an indepth understanding of the needs of the participant, have clearly articulated the complexity and challenges in providing support.
The processes involved in seeking additional support is unclear and inconsistently applied, although in some regions, we are developing contacts who can intervene to ensure that plans are adequate to provide the necessary support.
It is very difficult when planners do not understand the current requirements involved in developing positive behaviour support plans that include restrictive practices, resulting in inadequate funding beingmade available to provide intensive and comprehensive support plans. In some situations, planners will not include funding for the development of behaviour support plans until there is a behaviour support plan developed – this circular argument is frustrating and confusing for participants. Therapy funding and
therapy staff are needing to develop behaviour plans which should be adequately and separately funded.
In some situations, planners are making recommendations in relation to the delivery of specific services that are not appropriate given the complexity of the situation, e.g. making recommendations about therapy in group settings when individual support is required because of safety concerns. In such situations the plan does not need to stipulate the setting, and at other times there needs to be additional funding as therapists must travel to delivery supports in a range of community settings. Planners could work to understand where therapy is likely to occur, and increase allocations to ensure that the number of therapy hours are achieved and not impacted by travel charges.
Recommendations:
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All planners to have basic training and understanding of trauma informed practice, mental health and complex needs and seek support if it is clear the participant has complex needs that are beyond their experience.
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All planners to have an understanding of the new legislation such as the Quality and Safeguarding Commission requirements for Positive Behaviour Support Planning and timelines.
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All planners should receive training so they are able to identify restrictive practices and put in place adequate funding for Improved Relationships support when they identify there is a need.
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All planners receive training in how to respectfully engage participants in their own planning process. C. The ongoing training and professional development of planners; Covered in previous comments.
D. The overall number of planners relative to the demand for plans; Aspect Therapy is aware of differences in waiting times for families, regions that have a higher percentage of plans that expire before new plans are in place, and more planning meetings being offered over the phone even when participants would prefer a face to face meeting. These situations cause concern for participants and may also impact the continuation of therapy services at times.
Recommendations:
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There is a national reporting process on waiting times and numbers of plans expiring so that this can be monitored.
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Additional resources can be deployed to cover regions with concerning wait-times. E. Participant involvement in planning processes and the efficacy of introducing draft plans; It is difficult to understand if there has been a drive to do more plan reviews over the phone, resulting in a significant impact on participants feeling as though they are actively involved in the process, significantly exacerbating communication issues. When a planner is involved in subsequent plan reviews and plan development, trust is more easily developed and participants report more involvement. It also allows the planning process to be more efficient. Plans may be able to roll over with additional information added, rather than starting from scratch each time. Having a differnet planner for each new plan requires the family to re-tell their story from scratch, multiple times, causing frustration for participants and families. Less time is then available to be spent on reviewing progress and future goals due to the time it takes to familiarise the new planner with the participant’s situation.
Participants often invite their therapists to attend planning meetings and this can be a very positive way of encouraging the participant to be actively involved with the therapist supporting their engagement, the participant’s preparation, and provide additional information that might be needed. Participants should be encouraged and supported to involve the services they need to engage successfully. Face to face
meetings or reviews via video conferencing (which can be done using phones e.g Facetime, Skype or Zoom) are more successful ways of engaging than over the phone (unless a telephone meeting is requested).
Often participants believe the plan is a draft but are informed that it has already been finalised when they try to provide additional information or clarify a point of confusion. This makes it difficult to correct any errors, particularly in the set-up (portal or self-managed). Draft plans would help participants have confidence their plans will successfully outline their situations and include the goals that are a priority for the participant and family.
Recommendations:
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Participants should be able to have a choice in how their planning occurs (eg face to face or over the phone) and who attends.
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Draft plans should be provided so errors can be corrected within a timeframe.
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When possible planners should be involved in subsequent planning process and plans updated rather than rewritten.
F. The incidence, severity and impact of plan gaps; Participants and providers are impacted by plan gaps, and we appreciate recent changes to reduce the impact (with plans being extended when a new plan is not in place before the previous plan expires). However, it is still very concerning that when a plan is nearing its end date, participants have not been contacted about a review. Often therapy reduces at this time so funding can be extended, although providers are told that they should not stop servicing these participants. Aspect has processes in place to ensure we do not overspend plans. However, if there is a gap providers may need to place participants back on extensive waitlists, causing significant frustration for participants and creating time consuming processes for service providers.
Previously, plans were only extended when the new plan was in place, so providers had to bear the brunt of not being paid for months at a time, and were only able to extend the old service booking once the new plan was loaded. This was unacceptable and placed financial stress and additional administrative workload on providers.
As a provider we are also impacted by plans that end earlier than indicated because a review was completed ahead of time without being requested. This impacts on participants and providers as services provided during that time period then come out of the new funding.
Recommendations:
- Clearer processes about plan gaps and communication with participants and providers about individual arrangements (this could be through the portal).
G. The reassessment process, including the incidence and impact of funding changes; It is challenging for participants and providers when there are significant changes in funding from one plan to the next. It is unclear at times whether planners have read NDIS reports that have been supplied, and at times planners have made it clear they are concerned the provider has not always reviewed reports that are on file. Providers are unsure whether they are encouraged to provide recommendations about therapy levels e.g. types and frequency. Planners can give very mixed messages about this, and could instead provide information about how funding could be reduced at times. Providers can also help support participants work towards successfully reducing funding if there is time to do this. Providers are skilled in transition planning participants, and this helps reduce anxiety.
It is clear many planners do not understand that participants may struggle to find therapists to provide the level of support they have been funded for, and this should not be used as a reason for reducing future funding. Participants continue to be concerned about this issue, and some have reported that this issue is why funding has been reduced. Many participants who are accessing funding get desperate to use all the funding in their plan, and this can be challenging for providers when clinically there may not be evidence to support that more therapy is better.
Recently participants have been upset by letters regarding eligibility reviews and the timing of these communications in conjunction with or just after “normal” plan reviews. It can be unclear for families when they have been moved from EI funding to full scheme, and how the reassessment process is connected. We have had families undergo a plan review, get a new plan and, within days get a communication outlining the review of eligibility. This is providing extremely mixed messaging, and increases levels of stress. It is unclear what information is required, and families are struggling to access diagnostic services, especially if they cannot pay for private assessments (again, significantly impacting low socio economic/diverse backgrounds families). Waitlists for assessment services, both public and private, are lengthy.
Aspect Therapy clearly believes that complex cases and plans including Improved Relationships funding need to be thoroughly reviewed each year (and sometimes need to be reviewed more regularly) and there should be easier ways to trigger more responsive plan reviews in these cases.
Recommendations:
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If funding is to be significantly reduced, there is a transition period where providers can help develop supports to bridge this period.
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Planners read NDIS review reports and seek advice from providers or internal supports if they require further information before making significant changes in funding levels.
H. The review process and means to streamline it; It would be useful to understand how plan reviews are prioritised so that providers could support participants when a plan review is required because of a change in circumstances. The process seems very inconsistent, slow and challenging for participants. Providers are also placed in difficult situations when they are supporting participants with significant challenges but not enough funding is available because of a change in circumstances or new challenges. Participants might miss out on places in evidence-based interventions if their review is delayed.
Recommendations:
- Clearer processes, which are clearly articulated, with published timelines.
- Ability for resources to be moved nationally to plug identified gaps.
- Resources in place to address issues for complex situations in a timely way – with clearly identified priorities.
I. The incidence of appeals to the AAT and possible measures to reduce the number; Aspect Therapy believes there would be fewer plans that are appealed if the initial planning process is completed by competent planners, with consistent training, expertise and support. If participants felt they were fully engaged in the process, there would also be less time spent on reviews and appeals. Sufficient feedback needs to be given so participants can understand that the review process was comprehensive.
Input into AAT processes is very costly for providers (only some time seems to be covered for preparing information and it can be costly quoting this time for lawyers to agree). It also places providers in difficult
situations when participants assume the provider will be supportive of their requests, which might not be what we would recommend.
Processes seem to be more adversarial than needed with mediation not attempted.
Recommendations:
- Putting resources in place to ensure quality plans are created that are consistent and based on growing evidence of what is effective.
J. The circumstances in which plans could be automatically rolled-over; Aspect Therapy believes there are many plans that could be rolled over, especially if goals are open ended (sometimes planners are including very specific goals that are better to be developed by providers). We would recommend more plans rolling over but with clear processes to follow if there is a need for funding to be reviewed.
We believe it is better to have plans rollover for longer periods, with new planning meetings to occur to support major transitions (e.g. starting High School, finishing High School).
If NDIS review reports were prepared nine months into the plan period these could be reviewed and plans rolled over if progress was being made and there were clearly articulated next steps to continue to work towards agreed outcomes. If there were concerns, the planner could then meet with the participant to develop a new plan before the plan expires.
Recommendations:
- NDIS review reports are used to inform the process about plan roll-overs.
- Plans that are rolled-over could be reviewed if circumstances change.
- Major transition points should trigger new plans (rather than the annual review). K. The circumstances in which longer plans could be introduced; Longer plans could be introduced where long term and stable goals are developed and low risk supports are in place. The planning process could also update plans rather than rewrite them.
Recommendations:
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Identify plans that may be able to be extended beyond a 12 month period at the point it is first developed.
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Encourage planners and participants to update plans rather than think a whole new plan needs to be developed – these plans could be extended at plan review time.
L. The adequacy of the planning process for rural and regional participant Aspect Therapy provides services in remote settings and recently experienced a one size fits all planning process for all the particpants receiving Capacity Building Daily Living supports from Aspect. It was clear no historical information was taken into account, and a formula was generated and applied in multiple plans. There were several examples of particpants receiving exactly the same funding amount for service implementation, despite having very different needs and goals. This is completely against the principles of individualised planning and is not supporting best outcomes for the participants.
We also believe that in some regional and remote areas where it can be difficult to engage providers, there is a role for planners or coordinators to work with identified providers to create cohorts. This would ensure sustainability for providers, and ensure access to quality supports for participants in these regions. This
should not, necessarily, limit choice but will ensure services can be efficiently provided.
Recommendations:
- Plans for participants in regional and remote areas should still be based on individual need.
- Sustainable servicing can be provided more easily by providers if there is a cohort of participants to support, and reducing travel costs, and increases efficiency.
Additional Comments
There are continuing issues when a plan review triggers a new plan with new plan dates, making it difficult for providers to recoup funding for services that have been delivered in the interim. If changes do not impact that support budget, it would be helpful if the agency communicated with the provider who has made the service booking, so solutions can be actioned and new service bookings created so sessions are not rejected.
There are significant issues when plans are set up incorrectly by the agency (e.g. how they are to be managed). There appears to be a increased motivation by planners to encourage participants to plan or self manage where there is limited compliance of service quality. It is time consuming and costly for providers when it is clear particpants and their families are not capable of, or wanting to self-manage. It requires extensive administration time to support a participant to change the funding stream, and services provided in the period before this is corrected are very difficult to claim eg if the participant did not want the plan to be set up as plan managed they will not engage a plan manager for that period. This seems to be a more common issue than we would have expected.
Planners do not seem to adequately check on a participant’s or representative’s ability to self-manage. This is an area that needs to be skilfully handled.
Planners are not aware or trained appropriately on support categories and price changes. This has a significant impact on providers who spend significant time reviewing the new price book and terms and conditions. It is very disappointing when particpants are provided inaccurate information from planners who appear to be transitioning to advocates without having a comprehensive understanding of the objectives of the scheme. For example, following recent price guide changes, a number of planners explicitly told particpants providers could not charge for travel when providing therapy.
Recommendations:
- Planners understand the impact of their actions and advice on participants and providers and meet the key objective of the scheme by providing particpants with choice and control, with their needs being heard and articulated in the plan.