VALID Inc
235 Napier Street
Fitzroy Vic 3065
Telephone 03 9416 4003
Senate Hearing Submission 19 September 2017
Joint Standing Committee on the National Disability
Insurance Scheme inquiry into and report on the transitional arrangements for the NDIS.
Victorian Advocacy League for Individuals with Disability Inc www.valid.org.au ABN: 94 976 328 100
- Introduction VALID is the peak advocacy organisation for adult Victorians with an intellectual disability and their families. We have supported hundreds of people with disability and their families during the NDIS Trial Phase and now during the full transition to the NDIS.
VALID was a strong supporter of the campaign for the introduction of the NDIS and remains convinced it is the best model able to deliver outcomes for people with disability in a sustainable manner.
VALID was one of the first and main advocacy organisations to identify and campaign on the issue of Unmet Needs. From the late ’80’s and throughout the ’90’s, we worked continuously to have governments confront the issues of duplication and overlap, and to address the cruel waiting lists for services. To see those waiting lists now being eliminated, and to see people now accessing the services they need, is something that must not be forgotten or taken lightly.
In our experience, the NDIS has brought huge improvements to the lives of many people with disabilities, especially people who have never received support and people who are able to navigate the new system well. There is a danger, in the context of current transition issues, of overlooking these very significant achievements.
The comments and suggestions made in this submission are intended as constructive feedback intended to help the scheme achieve its full potential. They should not be misinterpreted as any weakening of our support.
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- VALID’s Role VALID is an independent advocacy organisation run by and for adults with an intellectual disability and their families. Our various activities are funded by a range of programs, including the Victorian Government and the NDIA.
Along with our ongoing individual and systemic advocacy work, we:
Support and facilitate peer support groups across Victoria (currently 30 statewide) Provide supported decision-making support to NDIS participants who have no informal networks (currently 76) Are developing a model of volunteer-based decision-making support (the Choice
Mentors Scheme)
Deliver information sessions on NDIS to people with intellectual disability and their families (app. 3,000 attendees in past eighteen months) Deliver training in planning and capacity-building skills to people with intellectual disability and their families (app. 1,500 attendees in past eighteen months) Support and facilitate four large-scale self advocacy networks across Melbourne and work in partnership with services to support a multitude of smaller self advocacy and consumer committees Provide representation to the NDIA Intellectual Disability Reference Group and the
Victorian Government’s NDIS Implementation Task Group
Conduct large-scale Disability Expo’s in NDIS roll-out sites (average 100 exhibitors) Host the largest conference for people with a disability and families in Australia (Having a Say has average 1,300 attendees) Work in alliance with other Inclusion Australia (NCID) Agency Members, and represent Inclusion Australia (NCID) within Inclusion International.
- Transition Issues Given the scale, size and complexity of the NDIS reform, it is not surprising there are problems and issues during transition. What has been disappointing, however, is the overall lack of effective collaboration and communication between Commonwealth and State jurisdictions to address and resolve these problems and issues; even more disappointing, the lack of effective collaboration and communication with people with a disability and families to identify problems and co-design solutions.
If this was a relay race, we might describe it as a baton being passed from one runner to the next, with neither party managing to get a firm grasp, to match the other’s pace, nor to carefully transfer those who might otherwise be dropped and left behind. For many people with a disability able to ‘run their own race’, or who have families able to support them in their journey, the transfer has been relatively smooth; for those who need more intensive preparation and/or more specialised support, however, the experience has often been a grueling marathon.
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‘I was a part of the Every Australian Counts campaign. Firstly, I was informed by Julia Gillard, by Kevin Rudd, and by Tony Abbott, that it would be easier to get equipment with the NDIS. And this hasn’t happened. I like to think I’m a strong person. I can really advocate for myself. But this situation, it’s made me question a lot about myself, and my strength.
’At times, I have been wanting to give up because I thought that it was going to be useless and not worth it. And in the review meeting, I was in tears, and I don’t do that. The frustration of it all just got to me. I have anxiety, and it’s always worse when I’m stressed. This situation has escalated my anxiety. I feel like no one is listening to me. This has brought me to breaking point. I feel like I have to yell, and still no one is listening. I don’t know what’s going to happen day-to-day. These problems with the NDIS – I’m stressed. I’m emotional. I have panic attacks. At times, I can be hysterical. If I’m stressed, I don’t eat properly. Sometimes I can’t sleep. At the end of the day, I just want a wheelchair that’s going to be suitable for me. I don’t think it’s a hard request.’ (Simone S.)
’W’s NDIS plan was completed in August 2016. He has severe autism, intellectual disability, obsessive compulsive disorder, epilepsy and a history of physical and sexual abuse in care. He lives in DHHS-provided accommodation with two others – one co-resident has regularly physically assaulted him since moving in three years ago. W’s family are advocating for him to move into a home of his own, and hoped the NDIS would provide a pathway towards Specialist Disability Accommodation.
‘W has lost access to a critical service since becoming an NDIS participant due to limited transport funding and reduced access to a private vehicle which is required to ensure the safety of W and his support workers (e.g. seat-belt lock and harness, Perspex screen between passenger and driver). W’s family have received mixed messages from the NDIS about whether they would fund the lease or purchase of the specialised vehicle he requires. W’s family have repeatedly requested information from the NDIS about the SDA approval process and have not received clear advice. Until SDA is approved, W must continue living in an unsafe environment where he is routinely assaulted by the co-resident. There is no certainty that if he moved into an SDA property that he would have access to any form of transport.’ (VALID Advocate Case Notes)
- Planning Issues Over the past eighteen months, VALID has supported many people who have been let down or failed by the NDIS planning process.
‘It is now over 14 weeks since the review of (our son’s) plan. And over 6 months since both the plan interview and the request for a review of (his) plan. On our return from overseas we contacted NDIS seeking information on the current status of the review. We received a return phone call from NDIS informing us that (his) plan review “is in the system”. Up until now I believed that “the cheque is in the mail” response was so old and unbelievable that no one bothered to use it anymore….’ (Dad A)
’Mother of a 23 year old girl with severe physical and intellectual disabilities who is non verbal. Complex case. Part of funding was stopped incorrectly as someone somewhere thought she had transitioned to NDIS but hadn’t even had contact with NDIA.
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Can’t seem to reinstate funding so been pushing for NDIS through a number of avenues. Was contacted by NDIA planner and only offered a phone interview next week - no face to face offered….’ (Case Intake notes)
’J’s NDIS plan was completed in August 2016 and has been in dispute for the past 12 months. C has severe autism, intellectual disability, bipolar disorder, epilepsy and a history of extreme abuse in care. He lives with his mother, who is his sole informal support and has multiple serious health issues. He requires constant supervision and full support in all tasks 24/7 and all service providers in the region have refused to work with him – his mother self manages his funding and directly employs all support staff in order to receive any services at all.
’J’s Individual Support Package (ISP) was significantly underfunded and was supplemented by one-off funding by DHHS year after year, however it did provide the flexibility for necessary supports, e.g. funding for purchase and running costs of a private vehicle modified to manage violent behaviours of concern while travelling. J’s NDIS plan does not provide the equivalent supports as the ISP and his quality of life has reduced since entering the NDIS.
’J’s NDIS plan has been reviewed twice, and is now scheduled for case conference at the Administrative Appeals Tribunal because essential supports are considered not reasonable and necessary by the NDIS. In the past 12 months, J’s behaviours of concern have escalated with increasing self-harm and property damage (note: the NDIS does not pay for disability related property damage unlike the ISP) and his mother’s health issues are becoming critical.
‘All relevant information to inform the NDIS planning process was provided in writing to the NDIS planner in the first planning meeting, however the planner admitted she did not and would not read it, instead forming an NDIS plan based on the funding amount shown in the ISP. VALID has committed hundreds of hours to J’s case to resolve the funding issues which could have been avoided with a properly considered and resourced planning process.’
(VALID Advocate Case Notes)
VALID’s strong experience is that the quality of a person with disability’s life is often under pinned by the quality of their planning ‘vision’. We therefore endorse the observations of the DPC submission:
’One area of concern during transition has been the practice of completing participants’ plans over the phone. While this may be an efficient approach, it is not an effective approach for all participants – particularly those with cognitive, psychosocial and other mental health disabilities, as well as participants who are less able to advocate for themselves and have limited access to others who can advocate on their behalf…
‘Victoria is aware of anecdotal evidence of some individuals being contacted by telephone in circumstances where it would be very difficult for them to deal effectively with the planning process. There are also some reports that families of young children with a disability or developmental delay have not fully understood the implications of what they have agreed or their ability to request a plan review…
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‘Furthermore, anecdotal evidence suggests many participants are unhappy with their plan once it is in place. Participants are currently only able to view their plan after it has been finalised and are unable to review a draft of their plan following planning discussions.’ (DPC
Submission to NDIS Transition Inquiry)
‘Some House Supervisors signed Access Request Forms and Service Agreements on behalf of the participant, and/or held NDIS planning meetings without an advocate regardless of DHHS’ advice. There seemed to be a lack of clear, written advice given to House Supervisors on who could sign which documents, and who would sign Service Agreements on behalf of participants who do not have capacity to understand the documents…
’House Supervisors were contacted by service providers (e.g. day services) demanding a copy of the participant’s NDIS plan and threatening to withdraw services on the next business day to individuals if House Supervisors did not comply. House Supervisors were made aware by DHHS that they should not provide a copy of a participant’s plan to any service provider, but were not given clear advice on what to do where service providers were demanding access to information…
’House Supervisors frequently answered information gathering questions without considering the full extent of the support they provide to the individual. For example, the NDIS planner would ask whether the individual needs assistance with showering, and the House Supervisor may say ‘No’, despite the individual requiring assistance to prepare for showering, prompts during the shower, and full assistance with dressing afterwards. VALID prompted House Supervisors to consider all questions as if the individual had no support in place at all to complete the task. NDIS funding is contingent on these questions being answered accurately.’ (VALID Advocacy Report)
VALID has welcomed DHHS and the Agency’s recent acknowledgment of these planning issues, and is encouraged by the development of an improved new participant pathway. We also endorse and highlight the following commitments drawn from the NDIA’s submission to this inquiry:
’In terms of current practises to deliver high quality plans, the NDIA has established a National Technical Advisory Team, with a primary focus on: Driving consistency in the application of the NDIA’s “reasonable and necessary” decision making framework, tools and operational guidelines, within the context of the NDIS Outcomes approach; Providing technical advice and support to NDIA staff and partners in relation to unusual or rare disability-related needs, or complex service delivery matters; Contributing to tactical research that informs best-practice service delivery; and, Supporting the application of insurance principles within the disability sector.
The technical advisors support planners, partners and delegates to develop and approve reasonable and necessary NDIS support plans in areas requiring specialist knowledge. Advisors work directly with internal and external staff in coaching and mentoring roles.’ (NDIS Submission.)
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Whilst we welcome these commitments, VALID questions whether the Agency has sufficient policy-making freedom and budget capacity to truly deliver on its promise. We therefore endorse the Productivity Commission recommendation that: ‘The Australian Government should reconsider the staffing cap on the National Disability Insurance Agency, given the importance of developing internal capability and expertise.’
(Draft Recommendation 10.2: Productivity Commission Position Paper on National Disability
Insurance Scheme NDIS Costs)
We also note this view was supported by Victoria’s Department of Premier and Cabinet:
‘Victoria considers that a significant cause of transition issues are the limitations placed on the NDIA’s operating costs and subsequent resource constraints. The NDIS is an insurance based scheme and it is essential that the insurance principles which underpin it operate effectively so it does not revert to a welfare model. To this end, the NDIA needs to be given greater operational autonomy over its budget and staffing arrangements so it can make greater up front investments during this critical transition period and minimise future costs…’ (DPC Submission)
- Issues for people requiring specialised supports ’M’s NDIS plan was approved in June 2017. M has an intellectual disability and multiple complex mental health diagnoses which severely impact on her everyday life and result from abuse by family and in a range of institutional settings. M lives in motel accommodation as all other attempts at supporting her to live in the community have failed. M wants to stay in the motel and all services involve agree that moving her into a different housing arrangement would likely cause a catastrophic mental health breakdown.
’M’s ISP met her needs and provided some funds towards the cost of accommodation as well as money towards some meals and clothing. She also received intensive case management which was an essential part of the model of support that has helped her to build stability over the past 10 years. M’s NDIS plan was made for six months only and requires M to have a range of assessments completed however she refuses to consent based on past experiences of abuse. Without the assessments, her housing situation is at extreme risk and she is likely to be admitted into long-term psychiatric care.
’The hours for Support Coordination in her plan was significant compared with other NDIS participants, but does not match the level or type of support provided under previous case management arrangements. M now says she wants to withdraw from the NDIS because the process is too intrusive and too inflexible and causing her unbearable stress. M now has increasing angry outbursts and she is more abusive towards support staff since she became an NDIS participant. M’s NDIS plan must take into account her individual needs and arrangements and fund items that have been proven to work best over time.
’These support arrangements have been arrived at through careful and consistent tailoring of supports and housing arrangements jointly supported by committed, expert case management and regular advocacy support to arrive at a best fit solutions. It is the independent expert opinion of those who know M best that to pull out anyone of these
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support arrangements will cause significant distress, set off negative behaviours and lead to much more expensive service remedies.’ (VALID Advocate Case Notes)
It is our strong view that many people who need specialist supports have been subjected to unprecedented levels of confusion, frustration and despair. In our experience, the transition has frequently failed:
People with complex support needs, including people with behaviours of concern and/or who are hard to reach
People with intellectual disability who are in the justice system
Parents with an intellectual disability
People with intellectual disability with limited informal supports
People self-managing their package (including situations where family members undertake the self-management activities; onerous insistence on 6 monthly reviews for people who are self-managing large NDIS packages)
Children with disability who exhibit behaviours of concern and are at risk of relinquishment
Children with disability in shared family care arrangements
People with disability with ageing parents, especially people with intellectual disability who exhibit behaviours of concern
In our view, they are being failed because there is:
A lack of an agreed and transparent ‘transition plan’ governing the hand-over of State responsibilities to the NDIA, including a comprehensive ‘due diligence’ and risk assessment A lack of adequate staffing to ensure adequate time for planning A lack of appropriately skilled staff to ensure quality planning processes A lack of organisational capacity in NDIA to ensure appropriate recruitment, supervision, training, monitoring and management A lack of organisational agility and freedom to respond to emergent issues, develop clear policy responses and ensure consistent organisational responses A bureaucratic ‘rules-bound’ culture impeding the ability of NDIA staff to respond to issues with commonsense, compassion and discretion A ‘hands-off’ approach to service development, even in areas of thin market A lack of person-centred practice in the planning associated with people with disability in the ‘intensive stream’ A lack of person-centred practice in the application of ‘reasonable and necessary’ for people with complex support needs A lack of understanding of the ‘inter-sectionality’ of issues facing parents (especially women) with disability who have children with disability Lack of support for people who are self-managing, including families undertaking the self management activities on the participant’s behalf
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On the plus side, however, we are encouraged by the NDIA’s continual readiness to face up to its challenges. We note a more recent emphasis on the need for greater co-design opportunities, as well as a greater emphasis on the need for staff training. For instance, we are reassured that the following training schedule is now addressing many of the issues that have been so problematic.
’NDIA has been running a training refresh program for all staff. This has been delivered as a face to face 5 day program and the agency will continue to have a rolling schedule of mandatory training.
The topics covered in the 5 days include.
· Insurance Principles and Scheme Sustainability
· Reasonable & Necessary.
· Typical Support Packages
· Plan Delegate Approval. · Quality
· Guided Planning Questions
· NDIA Critical Conversations
· Complaints
· Plan Management
· Provider Support
· Plan Implementation, Monitoring & Review
· Understand in-kind funding
· Payment Integrity
· Quality Control
· Disability Awareness
Each topic has a set of sub activities. For example, plan implementation, monitoring and review covers:
· Understand the importance of quality plan implementation and plan review and how this links to participant outcomes · Understand the tasks required to support participants implement their plans · Understand the tasks involved in plan monitoring and plan review · Understand in-kind funding · Explain the price guide and flexibility and demonstrate its application to participant plans · Develop quality plan review goals’ (Advice from NDIA)
We are also greatly encouraged by the work of DHHS Intensive Support Team, which has been doing more to prepare people with complex needs for NDIA planning, and liaising closely with NDIA in the effort to ensure a smoother transition. This team is also playing a more proactive role in trouble-shooting and working with NDIA to resolve problem areas. (For example, Clyde St., the positive behavioural support service provided to twelve children with behaviours of concern.)
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- Recommendations Many of the challenges during the roll out of the NDIS are genuinely complex and require thoughtful, comprehensive approaches.
VALID recommends that these approaches include: Increase in mechanisms that help the NDIS utilise the learning from the state and territory ISP experiences An increase in specialised training of NDIS Planners & Delegates This specialist training to be co-designed with people with disability and their families NDIS to only use experienced Planners and Delegates in planning for people with complex support needs Government to lift the NDIS staff cap during the Transition, as per the draft recommendations of the Productivity Commission Inquiry into NDIS Costs Increase in the early co-design of all NDIS systems
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