Rights Information & Advocacy Centre Inc.
SHEPPARTON GEELONG
72 Wyndham St, Shepparton, Vic 3630 11/23-31Gheringhap St, Geelong, Vic 3220 PO Box 1763, Shepparton, Vic 3630 Phone (03) 5222 5499 / Fax (03) 5222 5677 Phone (03) 5822 1944 / Fax (03) 5831 1610
MILDURA BENDIGO
272 Eleventh St, Mildura, Vic 3500 122 Queen St, Bendigo, Vic 3550
PO Box 2641, Mildura, Vic 3502
Reg. No. A0010543J Phone (03) 5021 0265 / Fax (03) 5023 6208 Phone (03) 5443 0550 / Fax (03) 5443 5178
ABN: 42 401 261 070
HORSHAM
185 Baillie St, Horsham, Vic 3402
Phone 0437 710 032
6 September 2019
Submission to the Joint Standing Committee on the National Disability
Insurance Scheme (NDIS): NDIS Planning
The Rights Information and Advocacy Centre Inc. (RIAC) welcomes the opportunity to contribute to the Joint Standing Committee on the National Disability Insurance Scheme – NDIS Planning inquiry.
About RIAC
RIAC is a not for profit organisation empowering communities across 22 local government areas operating throughout central and north western Victoria, Geelong and southern NSW providing information and advocacy support to individuals, families, carers and communities.
RIAC is funded by the Commonwealth and Victorian Governments to provide issue based individual and systemic advocacy assistance to people living with a disability.
RIAC is also funded for the National Disability Insurance Scheme Appeals Program, which plays an important role in ensuring that National Disability Insurance Scheme (NDIS) decisions are fair and robust.
RIAC has been involved in the NDIS since implementation in the Barwon region in 2013. RIAC has been informed by our work and engagement with people with disabilities their families and community sector organisations of the various challenges surrounding NDIS Planning.
Reference Items
We will address the following identified reference items within our submission:
a. the experience, expertise and qualifications of planners; b. the ability of planners to understand and address complex needs; c. the ongoing training and professional development of planners; d. the overall number of planners relative to the demand for plans; e. participant involvement in planning processes and the efficacy of introducing draft plans; f. the incidence, severity and impact of plan gaps; g. the reassessment process, including the incidence and impact of funding changes; h. the review process and means to streamline it;
i. the incidence of appeals to the AAT and possible measures to reduce the number; j. the circumstances in which plans could be automatically rolled-over; k. the circumstances in which longer plans could be introduced; l. the adequacy of the planning process for rural and regional participants; and m. Any other related matters. a. The experience, expertise and qualifications of planners; Barriers: Local Area Coordinators (LAC) conducting plan reviews which can cause inaccurate and misconstrued information being forwarded to NDIA delegates for Plan approval. It creates a middleman approach, which makes the NDIA seem faceless to participants. Plans compiled by LACs, compared to NDIA Planners, cause increased inconsistency in plans and decreased faith in LACs and the NDIA for participants and the wider community. LACs not fully understanding how NDIA funding can be utilised. LACs often telling participants how to use their Plans without fully understanding their situation due to time constraints and therefore, limiting many people with disabilities to mundane activities. Lack of choice and control – sometimes LAC’s disregard the person with a disability’s needs. Often LAC will respond to a client’s request as “the NDIA won’t fund that”, without seeking clarification whether it is reasonable and necessary and offering options for appeal and review. Inconsistent plans based on which NDIA delegate approves the plan. Plans for participants of similar needs can vary significantly depending on experience and qualification of the delegate. This creates uncertainty through the whole planning process. This causes anxiety with families at the planning stage and causes animosity towards LACs and the NDIA.
o Example: two children in the same family with Autism Level 2 and very similar medical reports and needs requested to the LAC. The plans went to two different NDIA Planners, one plan was returned with an $11,000 Core Budget, and the other with a $0 Core Budget.
NDIA Planners not qualified to make decisions about Plans regarding participants they have never met. This model is not consistent with section 4(3) of the NDIS Act 2013 People with disability and their families and carers should have certainty that people with disability will receive the care and support they need over their lifetime.
Recommendations: Co-designing of plans between the participant, LAC and NDIA. NDIA Delegate to provide a draft Plan NDIA Delegates to meet participants and LAC together if participants have questions regarding their draft Plan Improved communication and training between LACs and NDIS LAC role to be revised so they are not primarily responsible for the planning meetings. LACs are better utilised for linkages and support to understand, implement Plans and assist to gather evidence. Increased staffing cap to enable NDIA Delegates time to get Plans correct initially The co-design of plans approach is consistent with section 4(8) of the NDIS Act 2013
People with disability have the same right as other members of Australian society to be able to determine their own best interests, including the right to exercise choice and control, and to engage as equal partners in decisions that will affect their lives, to the full extent of their capacity.
b. The ability of planners to understand and address complex needs; Barriers: LACs planners with lack of training and understanding omit critical information for the NDIA. This causes concern when it is apparent the NDIA are relying on report from LAC rather than reading all of the specialist evidence for a participant. Difficult for an NDIA delegate to understand a participant’s needs if they have never met. Participants who find planning meetings uncomfortable can easily omit important information, which would assist the LAC to understand their needs. Participants can present well at meetings without being able to articulate and advocate for what they need. Participants not being supported to obtain appropriate evidence from specialists. Support Coordination being denied for participants – only very complex participants appear to be getting this support in their plans. This leaves participants who may not fit the category of “very complex” but need more support than what LACs can offer them to connect with services, understand and utilise their plan.
Recommendations: See recommendations in a. above. All people with disabilities and their families may have complex needs. To ensure plans correctly reflect the complexities of people the NDIA should invest the time at the planning stages to consider these needs. Section 4(12) of the Act should be taken into consideration to address the complex needs of participants - The role of families, carers and other significant persons in the lives of people
with disability is to be acknowledged and respected. The complexities of the NDIS
administrative process are becoming increasingly difficult for families to cope with. The LAC should have capacity to support participants during points of crisis, but also to proactively provide support to prevent points of crisis.
c. The ongoing training and professional development of planners; Barriers: Reported lack of sensitivity and misunderstanding of people’s disabilities. The NDIA maintains on their website that transport should be categorised into levels and the website still inaccurately refers to the McGarrigle decision from the AAT that was overturned by the Federal Court. The NDIS planners are continuously telling participants they get a “contribution” to transport. This is all inconsistent with the Federal Court McGarrigle decision that supports should be fully funded.
Recommendations: Increased training regarding relevant legally binding outcomes of Federal Court decisions Improved training for NDIA and LACs in the following areas: o Cultural competency training for working with Aboriginal and Torres Strait Islander
People
o Mental Health
o Human rights obligations under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) o Understanding diversity in disabilities and not making assumptions and generalisations
d. The overall number of planners relative to the demand for plans; Barriers: Consistent reports from LACs and NDIA Planners that they are time constrained as excuses for delays and unresponsiveness – participants losing faith in the process. LACs not explaining or supporting participants in understanding their plans in a way suitable for the participant due to time constraints. Planning meetings going ahead despite lack of evidence, the participant needs for the right supports and participant receiving no support to obtain this evidence. LACs are under strain with unreasonable expectations from the NDIA. We have heard LACs say “our case load is too high to be expected to do linkages” LACs not implementing plans (when no Support Coordination) in a timely manner and sometimes not at all leading to underspending of plans. Feedback from LAC’s is that the NDIA planners who approve plans engage in minimal discussion about the justification of supports and do not give the opportunity for additional evidence, questions or clarification to be asked to the participant or professional supports due to time constraints.
Recommendations: Same as part a. above LAC to have a more supportive role for participants to prepare and gather appropriate evidence for planning meetings Improved communication between LACs and participants: KPIs for LACs to respond to participants (we receive multiple complaints from participants who never hear from their LAC until we are involved)
e. Participant involvement in planning processes and the efficacy of introducing draft plans; RIAC is highly supportive of introducing draft plans. Parts a-d above have identified various barriers for participants that could be resolved by introducing this. Although this step would be more resource intensive at the planning process, it has the following benefits:
Resolve misunderstandings saving time and resources spent from the sector submitting reviews and appeals. Restoration of participant’s faith in the NDIS planning process if they are being included. Time for participants and their families/support team to understand their plan and support categories. Reduction in internal and external reviews.
f. The incidence, severity and impact of plan gaps; Barriers:
Constantly changing plans can create payment issues with providers. There are significant delays regarding provider reimbursements because of errors with NDIS plans. Providers
await payments for months and months and on occasions are withdrawing vital services to participants. Escalation process with the NDIA Finance department is not effective. Providers invoicing participants directly for payment when NDIS does not resolve errors. Example: the NDIA owed the Taxi Network $5,000 which was overdue and despite multiple attempts to escalate this the NDIA did not pay the taxi network, the Taxi network withdrew services. The vulnerable participant missed day programs and his host family paid the $5,000 out of their own funds so the service could be reinstated. The host family are still seeking reimbursement which has been promised for the last 5 months
Recommendations: Increased support from the NDIA Finance Department to support NDIA Planners, LACs, Support Coordinators, Participants and anyone else making enquiries. Improved escalation pathways for finance Timeframe commitments to resolve financial complaints
g. The reassessment process, including the incidence and impact of funding changes; Barriers: Lack of funding continuity and fluctuating uncertain plans from year to year for participants is concerning. Reports from participants and providers is that these changes impact how services can work effectively. Even though participants can show evidence support is required, the NDIA reduces funding which has adverse consequences. Fluctuating plans from year to year especially impacts participants with psychosocial disability who may have a severe functional impairment and services cannot work effectively if funding is fluctuating. If a participant is seeking an internal review of their plan, the focus of their next plan becomes about justifying why the support they need is necessary. By the time the review is addressed months of potentially critical treatment has been lost. People fear if they don’t spend their funding they will lose their funding in the next plan. There are many reasonable explanations why participants are unable to spend their funding. E.g. Unable to find appropriate providers, crisis situations, issues with service providers. Funding changes without warning can also have negative impacts on other mainstream services and can leave vulnerable participants with out of pocket expenses for necessary services which the NDIS previously funded. NDIS Planners and decision makers are not having any regard to the operation and effectiveness of participant’s previous plans. The NDIS Act Section 33 5(f) states “In deciding whether or not to approve a statement of participant supports under subsection (2), the CEO must: have regard to the operation and effectiveness of any previous plans of the participant.
No reimbursement from the Agency if a participant appeals decision from Plan that is
overturned. Delays in the review process mean participants experience out of pocket expenses for vital supports, which should have been funded initially. The impact of funding decisions is often unknown to planners and disregarded. The mental distress we see participants and their supports experience from these decisions can be devastating.
o Example: Host Family Payments were ceased by the NDIS without notification to families. This left vulnerable individuals and host families without payments until this was reinstated months later causing financial strain on families. As a result of this, some
Host Families were forced to cease providing support to participants. Host Family Payments have now been reinstated without any reimbursements.
o Example: MEPACS Alarm System for a client was previously funded by NDIS and when no longer funded by NDIS the Participant was invoiced personally without consenting.
Recommendations: Same as part a. above The co-designing of plans and draft plans Communication regarding funding changes and the implications of these changes for the participant and their holistic support network to ensure minimal disruptions.
h. The review process and means to streamline it; Barriers: Delays in review process leads to decline in mental health and faith in the NDIS process, leads to disengagement and continuity of supports and significant out of pocket expenses for necessary supports Delays are often still outlasting the expiration of NDIS Plans Delays disrupt the flow of the current plan, often leading to inefficient use of funds and time of therapists and support coordinators
Recommendations: Implementing more resources to the planning stage to circumvent the need for many reviews Legislative time frames for reviews Raising staffing cap to ensure volume of reviews can be addressed in a timely manner.
i. The incidence of appeals to the AAT and possible measures to reduce the number; Barriers: NDIS Planners and decision makers can often disregard previous outcomes of the AAT process. This disregards the NDIS Act Section 33 5(f) “In deciding whether or not to approve a statement of participant supports under subsection (2), the CEO must: have regard to the operation and effectiveness of any previous plans of the participant. The effect of the above means participants are required to re-submit reviews each year for supports that were approved from the AAT process. This affects each plan and the vital supports, especially if transport is in dispute. This creates isolation especially in regional and remote areas. The NDIS are continuously extending plans when participants are in the Tribunal process. This results in many issues for participants including: o New service agreements need to be implemented each time o Providers are not willing to take participants with short plans as there is no guarantee that the plan will be extended o Confusion of how to implement a plan extension as there is very little assistance to navigate this, especially if the participant does not have support coordination. o The Tribunal is requiring the NDIA to submit a separate application in relation to plan extensions when a participant has an open AAT matter. This is resulting in participants having limited supports while involved in the slowly moving AAT process.
Recommendations
Planners to take into account the above legislation when reviewing a participants plan. If a decision has been made by NDIA senior decision makers at any point (either usual planning process or AAT) that a support is reasonable and necessary, and there are no significant changes for the participant that the previous decision should still be relevant when undertaking a scheduled plan review. The recommendations in this submission will ensure there has been every opportunity for the participant and their support team to be involved in the funding required to support the participant.
Representative from NDIA with appropriate delegation to provide clear feedback and
instructions to be present at case conferences (on the minimal occasions this has occurred the process is highly efficient). Continue to build the capacity and efficiency of the Early Resolution Team to ensure a more streamlined process. NDIA to consult regularly with Advocacy and Legal organisations regarding the efficacy of the AAT process
j. The circumstances in which plans could be automatically rolled-over; Recommendations: Plans to be for a participant’s lifetime that are reviewed from time to time or when there is a change in circumstances. This would take the pressure off the Agency to have continual reviews, they could be more efficient with RORD submissions, access requests, and supporting the people the scheme was meant to support. If a support meets the criteria for reasonable and necessary in one plan for it to consistently continue in following plans unless there is a significant change in circumstances. Provide the option for participants to roll over their plan if their circumstances haven’t changed and the evidence suggests it is appropriate for supports to continue.
k. The circumstances in which longer plans could be introduced; Recommendations: Longer plans could be introduced with the co-designing of plans model. If requested by a participant and suitable for their circumstances, this could be appropriate. For longer plans to be implemented the change of circumstances process for an early plan review would need to be reliable to address any unexpected shortfall of the plan. Alternatively a model where plans are to be for a participant’s lifetime and reviewed on a needs basis as stated above.
l. The adequacy of the planning process for rural and regional participants; Barriers: Planners need to be realistic about the services provided Transport should be fully funded which is problematic for participants who live in rural and regional areas
Regarding Remote Classification
o NDIA (noting is a Commonwealth Agency) has adopted the Monash Model in
determining extra supports/ benefit for the individuals who reside in a remote area by way of increased support rates to allow accessing services.
o The adopting of the Monash Model though discriminates against people with a disability as the definition of ‘remote’ varies from the definition of remote under other Cth agencies eg. the Australian Taxation Office.
o e.g. Warracknabeal Post code 3393. o People can access remote Salary Packaging benefits via the Australian Taxation Office who live in this postcode. The Monash Model (NDIA) though still classes 3393 as ‘regional”.
Recommendations
Classification of areas need to be consistent throughout Cth Government departments to avoid confusion. NDIA to update their Operational Guidelines regarding transport to be consistent with the Federal Court McGarrigle decision and appropriate training for planners to understand this.
m. Any other related matters. LACs being instructed not to provide support to participants who are currently engaged with the Administrative Appeals Tribunal (AAT) leaving them unable to coordinate implementation of current plans. Removal of case management from the Disability Sector with no replacement under NDIS – creation of an enormous gap in services for many participants. Appropriate options for participants where case management has been removed but is still necessary. Access to Delegates as to any other professional ie be able to phone them directly. Fully implement the current Aboriginal and Torres Strait Islander Engagement Strategy NDIS and ensure it is incorporated into all induction and training within the NDIA. The First Persons Disability Network has created a 10 point plan and blueprint for the way forward which RIAC also endorses and hopes is incorporated into any future initiatives or thinking from the NDIA in relation to working with Indigenous Communities: https://fpdn.org.au/ten-priorities-to-address-disability-inequity/
Case Study
28/08/2017 – A family sought the assistance of RIAC for a review of a reviewable decision (RORD) for their 29 year old son. At this time, the RORD had already been submitted some time before the first advocacy meeting. The family reside in regional Victoria and have little supports in the area for their son to access. After many discussions with the Agency, the mother decided that she wanted to proceed to the Administrative appeals tribunal. Copious amounts of information was provided, with many teleconferences and conciliation meetings which were held in the AAT process. Approximately 12mths was spent proving that the transport (among other things) was a reasonable and necessary support that must be fully funded. During this time, the participant was not able to access all of his services that were funded, as the transport funding was insufficient. This caused stress and isolation for the participant and his mother who was required to stay at home with her son. The outcome of the external review was successful for the participant and the much needed reasonable and necessary supports were put in place. The case was closed on 17/08/2018
Moving forward another 12 months to August 2019, the participant’s mother contacted RIAC, as there had been a scheduled plan review. The approved plan had been cut significantly. The mother was extremely upset and distressed that the process that they had been through over the past 24 months was going to have to be re-lived. There had been no changes to her son’s needs, in fact it was reported that he had the best year of his life so far. His parents were organising their first holiday without their son, as the supports he received were finally adequate. However, there had been a change to the support that the participant’s mother could provide. She was now a carer of her elderly and palliative mother, which required visits to Melbourne three or more times a week. She could not always be there to provide all the support to (her now) 30 year old son. Again, an internal review was submitted, and again the wait has begun for a decision and again the participant cannot access his supports that were deemed reasonable and necessary only 12 months earlier.
Again, we thank the Joint Standing Committee for the opportunity to provide input into this inquiry. RIAC hopes to see the NDIS thrive for the benefit of participants, their families and all support networks. The implementation of the NDIS currently requires significant improvements to ensure the obligations of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) are upheld. The objects of the NDIS Act 2013 also reiterate commitment to the UNCRPD, however without action the commitment becomes mere words. If recommendations from this inquiry are implemented in a timely manner Australian’s impacted by disability can restore their hope in the NDIS system to become a true example of upholding the rights of people with disabilities.
Yours sincerely,