advocacy for inclusion www.advocacyforinclusion.org
Joint Standing Committee on the National Disability Insurance Scheme
PO Box 6100
Parliament House
Canberra ACT 2600
Via Online Lodgement
6th September 2019
Dear Committee Secretary,
Re: Submission to Joint Standing Committee on the National Disability Insurance Scheme – NDIS
Planning
Advocacy for Inclusion (AFI) is a not-for-profit, independent and individual advocacy service that provides extensive human rights advocacy and supported decision-making support for and on behalf of people with disabilities in the ACT. We provide national systemic advocacy on a range of policy issues affecting people with disabilities from the ACT, including the National Disability Insurance Scheme (NDIS) and Administrative Appeals Tribunal (AAT) support.
We welcome participation in the committee’s inquiring into the implementation, performance and governance of the NDIS and will be sharing AFI’s direct experience in the ACT on NDIS Planning and general access faced by consumers when navigating the NDIS. At the time of writing, we welcome the Australian Government’s move to develop and legislate an NDIS Participant Service Guarantee to improve participant experience. We particularly welcome the Guarantee’s commitment to set new standards, including shorter, agreed timeframes in plan approval and reviews. We hope the Joint Standing Committee’s findings will aid the Guarantee’s work in improving the standard of the NDIS for all participants.
From our experience, AAT case examples and general enquiries seeking advocacy support, people with disabilities, their families and carers remain confused about the NDIS, the processes, and widening service gaps. AFI’s submission regarding NDIS Planning will primarily focus on the decisions regarding access to the NDIS, internal reviews and the AAT process, in our experience. We are concerned that participants of the NDIS are facing a disadvantage in the plan reviews and internal review processes due to:
-
Lack of clear, concise and available information regarding ‘feedback, complaints and reviews’ for participants, their carers and support networks
-
Lack of information regarding reasons for decisions made by the NDIA during plan reviews, i.e. to include or not include supports in the plan, or to not grant access
-
Time delays of internal reviews, leading to formal complaints against the NDIA, frustration from the participant, which can contribute to hostility in AAT reviews.
-
Lack of understanding and disability awareness among LACS, planners and call centre staff
Level 2 Griffin Centre, Genge Street, Canberra City 2601
Ph 61 2 6257 4005 Fax 61 2 6257 4006 Email info@advocacyforinclusion.org
ABN 90 670 934 099
In the ACT, planning and assistance regarding the NDIS have been the responsibility of Feros Care, an organisation funded and supported by NDIA to provide Local Area Coordination (LACS) to the ACT. However, there remains confusion and disparity as to the responsibility of the community organisations as to how much support we provide an individual unfunded before referring to Feros.
Currently, people with disabilities approaching AFI to seek support and assistance in navigating NDIS paperwork and requests is one of the most significant types of enquiries received.1 However, AFI is not funded to provide this support adequately or separately from the NDIA or FerosCare in the ACT – yet there is an expectation that this is ‘advocacy’ and ‘support’. As a resolution, AFI assesses each case accordingly, prioritising AAT Review cases and whether there is the equivalent of a hidden iceberg of other issues lurking underneath and not identified in the initial intake. By opening the floodgates to assist each individual with NDIS pre-planning or review paperwork will fundamentally cut into the time and capacity of the advocates’ availability on low funding. Issues uncovered from advocates when agreeing to assist a client with their NDIS pre-planning or review assessment have varied from guardianship constraints which the individual would like to exercise their self-determination in their plan review, child protection and family support, justice interfaces, housing modifications or equipment to live independently but need to be negotiated and so forth.
The confusion of what constitutes as ‘advocacy’ and ‘support’. In response and due to low capacity to actively assist unless crisis or intervention is required, AFI has redirected the enquiries received back to Feros Care. In some cases, Feros Care has denied that supporting individuals’ access from the NDIA from the application point, has been their responsibility, creating confusion among people with disability, their families and carers of who to contact at the first instance when requiring support for their NDIS enquiries. We remain unmoved in the ACT that it is the responsibility of Feros Care until corrected otherwise.
The Bilateral Agreements between State and Territory Governments and the Commonwealth Governments
continue to compromise the NDIA’s ability to implement the NDIS as intended as the number of participants entering the scheme continues to grow.2 The Productivity Commission reported in 2013 that the NDIA continues to focus too often on participant intake, not focus on outcomes in the planning process and upholding market development. This is what AFI experience: we see a scheme moving too fast without focus on choice and control of individuals and without filling significant gaps that are spotted from the ground. With limited funding, advocacy organisations are being held responsible for crisis intervention when the NDIA and
jurisdictional health, justice and education interfaces arise. Despite Bilateral Agreements between
Commonwealth, State and Territory governments, there is no agreement, understanding or supporting infrastructure in place of who is ultimately responsible in a crisis situation within-participant NDIS plans.
Priority recommendation: Governments must set clearer boundaries at the operational level around ‘who supplies what’ to people with disability where there are NDIS vs Interface (i.e. health, justice, child protection and support, employment, education and other areas that are managed by State and Territory governments and overseen by Commonwealth Government).
The incidence, severity and impact of plans
AFI welcomes the positive changes that the NDIA are making to improve participant pathways. However, there is much needed cultural shift in how staff interact with people with disabilities in the planning and review processes.
1 Echoes view of Commonwealth Ombudsman: “In several locations, we were concerned to find that many participants, and even key support organisations (like advocates, peak groups and peer support groups), were not aware of the availability of LACs to assist with pre-planning work, plan implementation and/or to provide referrals to mainstream services”, Submission by the Commonwealth Ombudsman (2017) Response to Productivity Commission’s Issues Paper, ‘National Disability Insurance Scheme Costs’, p.7 2 Productivity Commission, NDIS Costs Position Paper, June 2017, p. 13.
2
As an advocacy organisation, it is our responsibility to advocate and supply the right information back to our clientele through their process. We find the call centre is providing conflicting information and advice to participants, are unable to speak clearly or adjust language accordingly or the ability to understand and address complex needs over the phone in a patient and undemanding manner. Unfortunately, participants have informed AFI advocates of planners who have demonstrated a severe lack of understanding, compassion or knowledge of disability in general. It is crucial that planners and LACS are trained in disability awareness, sensitivity awareness of culture or religion and an understanding of the local area population and what services are available.
CASE STUDY
A participant tells an example of a follow-up conversation regarding their plan with an NDIS decision maker and asked whether they had pursued X treatment. The treatment was not available in Australia. The participant asked where the planner had heard of the treatment and the response was a Google search.
Advocates at AFI have raised the inconsistency of quality checking of plans for NDIS participants and the details of the plans themselves. A core value of the NDIS is that it promotes choice and control in the hands of the participant. However, we see confusion of people with disabilities who are not in the drivers’ seat of their own plan when the plan developed by the NDIA is not what they envisioned, asked for or were made aware of alternative ideas until later, only to be told there is a lengthy review process rather than a simple, quick modification to a plan.
The performance of a LAC or planner should be measured by the quality of their plans and the quality of their exchanges with participants. Participant satisfaction with their plans and their interaction with planners should also be monitored and evaluated through the ongoing NDIS evaluation framework. All planning meetings should be recorded to ensure that all evidence provided by participants, their carers or chosen supports are appropriately matched to a planner or LAC for quality-assurance purposes as part of any monitoring and evaluation process and the assistance in advocacy cases.
CASE STUDY
AFI had a client who had been an NDIS participant through 2 plans. An advocate attended their third planning meeting to discover that this participant only had one disability listed on their NDIS file. The participant, in fact, had six diagnosed conditions causing functional impairment, but only one had been recognised and noted by previous planners. Unsurprisingly, the supports which had been requested made a lot more sense when NDIA realised the mistake – and supports which had been refused in the first two plans were finally approved in the third.
Sharing of information for people with high and complex needs who require support and assistance to navigate the NDIS is highly dependent on information and resources regarding the planning process, particularly for the criteria of support, plan implementation and what questions may be asked. For many clients navigating the NDIS, information and support have been the problematic aspect and who to go to for support and assistance. The level of information provided during planning meetings can be inconsistent or different for some people with disabilities to process quickly and efficiently in a single meeting, particularly when use of bureaucratic or jargonistic language is present with the assumption that support for the individual is sure and available.
3
Only recently, AFI has been involved in a confusing information sharing debacles that impacted both time and the ability for advocates to communicate with NDIA staff, including planners, regarding their client’s matters. While the issue has been resolved with a positive outcome that led to NDIA tightening their policies and procedures on information sharing between NDIA staff and advocacy organisation’s, it is an example of how unclear information can cause delays, anxiety and frustration for all parties involved.
CASE STUDY
A client approached AFI for assistance with getting information from NDIA. She said her caseworker and herself were ‘hitting the same brick walls’ when trying to communicate with NDIA. The client had appealed access request rejections for both her and one son, as well as having appealed her other son’s plan. The client said she had no response from NDIS, and when she contacted them, they denied receiving information from her despite evidence of an NDIA email acknowledgements/stamped hard copies as proof of her contact. The client also said that she had been told by them that there was a note on her file saying not to give out any information regarding the matter.
An AFI advocate called NDIA and asked what was needed to provide to be able to discuss any clients with them. They said to email proof of clients’ consent to the NDIS enquiries email. The advocate then emailed the client’s completed consent to share and authority to act as advocate forms to the NDIS enquiries email and received the following email in response:
Thank you for your recent enquiry to the National Disability Insurance Agency (NDIA).
The information we require to complete your enquiry includes three points of identification for the participant/child representative (e.g. date of birth, phone number).
If you could please provide this information at your earliest convenience, we will be able to progress your enquiry.
Alternatively, you can call us on 1800 800 110 between 8am and 8 pm.
Thank you again for your enquiry.
National Disability Insurance Agency
T 1800 800 110 Please note responses received by this mailbox will not be responded to.
Four weeks later, the advocate called the NDIA to provide the 3 points of identification. They said she was not listed on the participant’s account. The advocate then verified she had sent the consent to share information and authority to act as advocate to the NDIS email as requested. NDIA said they had not received the email.
4
CASE STUDY – CONT.
The advocate confirmed that she had received the response confirming receipt of the email and requesting three points of identification. The NDIA staff member asked if the participant was with the advocate then, and when she responded no, they said the participant, or their parent had to give the ID. The advocate queried why she needed to provide further ID when she had provided consent forms. The NDIA staff member placed the advocate on hold to search for the consent forms, then returned and said it takes some time to read the emails and transfer the information to the participant’s account. The staff member requested the advocate call in a week.
The following day, the advocate met with the participant called NDIA on speaker phone. The client asked to add her advocate to her son’s file. The NDIA staff member (a different one) refused to add the advocate to the file and said that an advocate could not be added over the phone to the case of a participant if they had a current plan running. The NDIA staff member said the advocate would need to attend an NDIA office and provide 100 points of identification and complete a form there which needed to be signed by the advocate and the participant then return the form to the office.
After negotiation of consent agreement, the NDIA staff member agreed on the phone to add the advocate to the participant’s file as she was rejected from NDIS so did not have a current plan in place at the time. The NDIA staff member requested advocate’s birth date, phone number and business address.
In contrast, on the day the advocate originally emailed the consent to share to the NDIA, she had also separately emailed another client’s consent to share. The advocate received no reply to it, and 3 days later phoned NDIS and was able to access her client’s information as the consent to share had been received and found she had been added to their file.
In a period of six months, an outcome had been reached. It was found other advocacy organisations had faced similar issues with consent, identification and miscommunication of policies on the NDIA’s side. All advocacy organisations received an email of ‘Interim Escalation Process for NDIA Matters’ stating:
“Consent is not required to be provided on an NDIA specific consent form. It can be provided on any form that covers the requirements for express consent.
For escalations regarding plan reviews, email ––––––––––, Branch Manager of the Review Team. For other crisis escalations, email the relevant State/Territory Contact”
The case study is an example of why less vague information sharing is necessary for people with disabilities to understand why their review has been unsuccessful or if more information is required or needed. Often, AFI advocates have untangled what has been the mistakes and medicalised (not socialised) language of medical practitioners, allied health professionals and other supports to make an individual’s case for NDIS funding or review in request for further equipment validated to the social model of disability. Often the participant is not told, in a Plain English fashion, what aspect of their NDIS application or request for review had been unsuccessful.
AFI is also concerned that participants appear to be receiving very inconsistent and at times, misleading advice, from planners and NDIA staff, that also filters to service providers and support coordinators assisting clients. The NDIA must support planners and LACS with clear policy and guidelines to provide consistent advice to participants about the planning process, criteria for supports, and how plans may be implemented. The context of the ACT, FerosCare require support, monitoring and evaluation to ensure that NDIA’s policies, procedures and guidelines are consistent.
5
NDIA Reviews
From an advocate’s perspective, the process has been to wait and advise the client as such – it is common for a participant to wait over 6 months or more. During this time, the participant is often without adequate support, funding or services in place. In our experience and upon request, NDIS call centre staff has advised AFI advocates that although it is noted on their screens that a review is in motion, they cannot see where the review process is up to, the date of review or any further notifications relating to an individual case beyond assisting with general enquiries.
However, there remains no definition of what defines a ‘reasonable practicable’ amount of time as to when the NDIA needs to complete an internal review. Plans are expiring before the NDIA is reviewing them, which applicants are worse off without the support they are eligible. The NDIA has admitted, that “it is ‘accepted best practice’ to acknowledge requests (usually by reply email or telephone) and it is confident most staff members do so. However, the NDIA advised it does not have formally documented procedures or a timeliness standard for acknowledging review requests”.3 Without communication in place on NDIA’s side, the participant should still have time and a benchmark of seeking alternative supports that could benefit them without fighting the NDIA.4
CASE STUDY
An NDIS participant and AFI client had appealed the decline of her original NDIS application and the original decision was overturned under internal review as an outcome. However, this process took over 1 year (May 2018 – later May 2019), during which the client received no communication from NDIA, except from an automatic reply acknowledging receipt of the letter she sent appealing the decision.
The client contacted AFI because she was not being told any information when contacting NDIS and the information she was being told was conflicting, confusing and creating anxiety. She did not even know whether a review was underway. After a lengthy time delay, the advocate was told that the client’s review was being processed. That was all the client and the advocate heard until the day the client was directly informed that the decision had been overturned and she was granted access.
We suggest the need a formal triage process and/or a time limit in delivering internal review decisions because currently, it is ‘indefinite’ and near impossible to find out how the internal review is coming along. We also acknowledge that there is a range of informal interim measures that available, but in experience, but may not be common knowledge or sourced unless an advocate is involved. Matters that have been placed for internal reviews are allocated to an individual decision-maker within the NDIA, and thus, it is difficult to determine when enquiring as to whether that individual decision-maker had started considering the matter. At other times, it has been difficult to obtain confirmation regarding whether the application for review has even been acknowledged/received which poses difficulties on the advocate assisting the participant with their matter.
AAT Process – Picking Up Pieces of Internal Reviews
AFI is funded to support people with disabilities through the AAT process. Since undertaking funding to supply AAT support, AFI has seen a steady increase where planning applications have not been properly administered in the first instance and when the individuals have less supports in place to assist in the application process and timing of plan reviews.5
3 Commonwealth Ombudsman (2018) Administration of reviews under the National Disability Insurance Scheme Act 2013: Report on the National Disability Insurance Agency’s Handling of Reviews, p.15 4 Ibid, p.16 5 Productivity Commission, NDIS Costs Position Paper, June 2017, p. 2.
6
In our experience with the AAT appeal processes, we note several concerns regarding the fairness and efficiency of dispute resolution in the AAT between the NDIA and participants. This includes extensive delays prompted by the NDIA during and throughout the AAT appeals process and delays in seeking reports to support the NDIA’s positions and rescheduling of hearings, causing more anxiety and stress upon the participant.
In the circumstances in which plans could be automatically rolled over, we suggest this should apply:
-
Where there is no change of circumstances and the participant doesn’t want a review
-
If participants opt to roll over, things like a change of circumstances can continue to be an avenue to trigger a review should the plan no longer be adequate at a later date
-
Where safeguarding mechanisms are required to be in place to make sure that participant was not avoiding review due to the process being traumatic nor stressful etc. (which, given the state of review process now, would not be implausible!)
Where a plan isn’t reviewed on time, and there is a plan gap, potential idea that plans should automatically roll over on a pro-rata rate until a review is conducted/new plan decision reached. This will ensure that participants are not stressed that they are going to be left without funding. It will also remove issues around backdating and refunding of participant supports which were incurred during the gap.
In the incidence of appeals to the AAT and possible measures to reduce the number of applications to the AAT, the answer is relevantly simple: more communication in the planning process for participants and during an internal review. In AFI’s case, most applications to the AAT occur through our organisation due to lack of communication, lack of response and confusion of process. Communication between the internal review decision-maker and participant to obtain additional information and clarify what the participant needs to provide will give them an opportunity for better preparation, advocacy and accommodating time delays to get in with medical professionals and potential ‘assessments’ at the current AAT stages.
We anticipate that not only will people be able to be better prepared and provide better evidence etc, but also a better understanding of reasons may lead some people to accept the outcome (not from resignation, but simply understanding what the NDIS provides/who it does/doesn’t give access to etc.) which will lead to more organisation trust and less disgruntled participants. Current reasoning of decisions made by the NDIA is either non-existent, inadequate, or full of jargon and pulled from a template which doesn’t actually explain properly (or in Plain or Easy English format) as to why someone didn’t get access to the NDIS or requested support.
In conclusion, AFI welcomes the current efforts of the NDIA to improve delivery for all NDIS participants. This cannot be done without flexibility in response to circumstances of individual participants and should be balanced with equity and transparency in all levels of decision-making. With a robust, clear and accessible system of internal reviews and AAT processes available to participants, their carers and support networks, the NDIA is heading in the right direction. We will continue to work positively with the NDIA, and we look forward to continuing future collaboration following this submission.
Yours Sincerely,
Bonnie Millen
Senior Policy Advisor
Advocacy for Inclusion
7