Submission To The Government Regarding Ndia

National Disability Insurance Scheme

Inquiry To Probe Ndia Capability And Culture

Terms Of Reference:

a) the capability and culture of the ndia with reference to operational processes and procedures, and nature of staff employment.
b.) the impact of ndia capability and culture on the experience of people with disability and ndis participants trying to access information, support and services from the agency,
c). any other relevant matters

15 november 2022

Executive Summary of Recommendations contained in this submission

Multiple disabilities (two or more disabling conditions) be stated under Primary Disabilities so as to accurately provide the data required for reasonable and necessary supports. (Page 5)
The Planning Conversation/Questionnaire be updated so as to include appropriate data and assessment of the disabled person. Data analysed in Participant Outcomes Summary more effective. (Pages 6-7)
Staff employed by NDIA be required to have adequate training and experience in understanding disabled persons with complex needs. Competency at distinguishing between mild, moderate, severe disablement, degenerative conditions, as well as age related increasing health issues. (Pages 3-4)
A Case Manager, an Allied Health professional, for each severely disabled participant be allocated. (page 7, page 9)
For a Review of a Reviewable Decision, NDIA staff need to be suitably qualified so as to make correct assessment decisions and to deliver quality, appropriate supports for those impacted by severe disablement. (pages 3-4)
In the Planning process, any Independent Occupational Therapy reports using the WHODAS 2.0 be aligned and interpreted with the NDIS WHODAS 2.00 for analysis of results. (Page 5)
Direct communication with the NDIA staff who have authority and competency, rather than using outsourced companies. (Page 7)
Certainty of care – plans that are satisfactory to be rolled over without the need for reassessment until a change in circumstances is evident. (Page 8)
Impact of progressing to the Administrative Appeals Tribunal. (Page 8-9)
Hospital - A holistic approach be taken to support a participant who is hospitalized, with choice and control being determined by the disabled participant to use the social/community inclusion budget. (Health care system to take care of the patient’s clinical care.) (Pages 10-11)
Final comment (Page 12)

INTRODUCTION

This submission is detailed from the perspective of the participant experience and that of her disability advocate.

I am the mother and advocate of a 47- year-old daughter who transferred from Disability SA to the NDIS in 2017. She was born with Spina Bifida and hemiplegia and has been wheelchair -bound since the age of three years. For nearly fifty- years, we have had experience with the various government organizations that have been involved with the services and support of severely disabled individuals. This includes Domiciliary Care, Novita, Disability SA, and since 2017, the NDIS.

The capability and culture of the NDIA, and its operational processes and procedures, is of the utmost importance in assuring participants and their families that they will get the support that they need.

We provide assurance to people with permanent and significant disability …… that
   they will get the support they need.1

SUBMISSION

I would like to commence by posing some questions, making some statements, and providing examples as to the operational processes and procedures employed by the NDIA. I make comment on the Agency having appropriately trained staff so as to deliver a sustainable NDIA. The impact of the experience in dealing with the NDIA is also expressed.

What is the capability of NDIA staff to understand participants with high complex needs who are living independently in the community and coping with severe disablement, declining health, and aging?

1. How does a NDIA Delegate ensure that the basic level of required supports is
  considered appropriately when making a clinical judgement and determining
  the plan budget for those who have multi-factorial health needs? Are the NDIA
    staff qualified to make correct assessment decisions to deliver quality,
   appropriate supports for this group of participants?

          i)In time for a scheduled Light Touch Revue, the 121-page
      Conversation/questionnaire was completed by the LAC. In addition, an
     independent assessment was completed by the Occupational Therapist
    who is employed by                                                                             .

What principles do we follow to create your plan? | NDIS

i)

The Occupational Therapist’s comprehensive 26-page Functional Capacity and Needs Assessment clearly stated what was required for a reasonable and necessary support package that would be effective and beneficial for a participant with complex support needs, and taking into consideration the severe decline in the health of the participant, that would not likely ever improve, and included the participant’s goals and aspirations. The requested supports were precisely half of the daily support needs that were recommended by the disability scoring system.

Cost-cutting objectives were more important to the NDIA rather than providing the participant with an appropriate level of support for the circumstances.

Five separate issues were identified as having insufficient funding. This included hours of support, assistive technology, support coordination, continence aids, and therapy assistance – the provided documentation was either not read, not understood, or ignored.

Hence, an internal review, a Review of a Reviewable decision was requested.

ii)

The decision from the NDIA delegate responsible for the Review of a Reviewable Decision was questionable with a follow up letter stating, “no change.” and the delegate at the NDIA stating that she is satisfied with the Plan. Citing explanations from the NDIA Act for each issue, was unconvincing.

iii)

Of further concern is that the delegate making this decision remains anonymous, only providing a Christian name, with no further contact within the NDIA being available. The sole recourse is to speak with a Local Area Coordinator who has no authority to change anything, it being an out-sourced company.

This is not putting the participant at the forefront of decision-making. It is giving the NDIA all the choice and control. There is no transparency as to decision making of a participant’s plan. There is no confidence that the NDIA is giving choice and control to the severely disabled participant

Note: After progressing to the Administrative Appeals Tribunal, all five issues were deemed to be reasonable and necessary, and an appropriate Plan was supplied. The capability and training of the staff employed in the Review of Reviewable decision process needs to be enhanced urgently to prevent the need to progress to the AAT.

The NDIA classifies a participant’s Primary Disability

The NDIA classifies a participant’s Primary Disability by using the coding from the International Classification of Diseases, ICD, as set out by the World Health Organisation, WHO. In the Planning process, the NDIA only uses a single disability and does not acknowledge a participant as having two or more disabling conditions that severely impact their day- to- day life. For example:

Condition	Code
Spina Bifida	Q05.2
Associated Hemiplegia	G81
Epilepsy	G40

Currently, NDIS participants who may have one or more disabilities for which they need assistance, their primary disability is the disability that impacts most on a person’s daily life.

From the above example, and using Spina Bifida as the Primary disability, the NDIA is not recognizing that the remaining two issues significantly effect daily life and functional capacity, especially having hemiplegia.

It is recommended that multiple disabilities be acknowledged and stated under Primary Disabilities so that a suitable plan can be implemented.

For the Functional Capacity and Needs Assessment, the NDIA uses the World Health Organization scoring system, WHODAS 2. This is the same assessment system used by independent Occupational Therapists and includes the Care and Needs Scale, CANS:

How is it that the NDIA interprets the content differently from an independent and reputable, senior, Occupational therapist to determine a participant’s requirements? There are three scoring methods used for the WHODAS 2.0 analysis – Simple score, Complex score (and its percentile) and Average score (and its descriptor)

Is the NDIA discounting the recommendations as determined by the WHODAS 2.0 method of assessment of disability or interpreting results differently and is therefore failing to supply the reasonable and necessary support packages in the first instance? This then, necessitates further internal reviews, supplying of further evidence and reports, and progressing to the Administrative Appeals Tribunal to get any satisfaction, all of which is costing much more in taxpayer dollars, unnecessarily.

World Health Organisation Disability Assessment Schedule 2.0 - Interview (WHODAS-interview)- NovoPsych

Page 6

The process of using a Planning Conversation/Questionnaire for the purpose of providing a participant’s plan, does not provide a platform where there is an opportunity to convey the actual circumstances, a decline in health, and its impact on the day-to-day life of the disabled individual. Furthermore, it is not transparent. The data collected from this Conversation is also used in the NDIA Participant Outcomes Summary and may not be giving an accurate analysis of disabled participants.

To understand how a participant’s plan has been formulated, it is necessary to obtain the 121-page Planning Conversation/Questionnaire, under Freedom of Information. It reveals the following:

i) One notes that there is an Internal Rating, a number that is specified, but what does that number equate to? Is the LAC correct or not, when assigning this rating? Where is the transparency?

ii) Cutting and pasting from a previous Planning Conversation is evident and revealed outdated, inaccurate data that has not been updated to reflect current circumstances.

iii) The Planning Conversation/Questionnaire feels very much like one is applying for a Credit card. The data is collected via the Questionnaire and this input is fed into an algorithm so as to produce the end result, i.e., a Plan that is insufficient for the participant’s needs.

iv) There are multiple questions with answers that fail to provide a correct assessment and give rise to real concern as to the suite of tools being used to create a participant’s plan. For example:

a) Question: “Are you looking for work?” Answer by LAC: “No, and not looking for work.” Correct data input ought to state: UNABLE TO WORK. Due to a significant decline in health, participant can never work again.

b) Question. “Are you currently working in a paid job?” Answer written by LAC: “No and I don’t want one. Do not participate (not working and not looking for work.)” Correct answer ought to be UNABLE TO WORK.

The Occupational Therapist Assessment for Functional Needs and Care,

needs to be thoroughly read and the recommendations incorporated into the decision making process in order to provide an appropriate plan. Listng multiple disabilities under Primary disabilities so as to provide accurate data in the Planning Conversation will likely be of benefit for participants with diverse needs and circumstances.

There is no opportunity to state that participant left the workforce with Total and Permanent Disablement, due to further health issues. Participant had worked full time for 18 years and is now often bed idden. Capacity Building budget for social or economic participation has the potential to be affected by this incorrect data collection input. The Planning Conversation has to be right for the Scheme to work and there needs to be provision for appropriate responses to questions.

People with disability should be supported in all their dealings and communications with the Agency and the Commission so that their capacity to exercise choice and control is maximised in a way that is appropriate to their circumstances and cultural needs.3

It is impossible to interact directly with the NDIA due to partner companies being used – Baptcare are an outsourced company and act as the LAC. They have no authority to change anything. Using a company such as Serco as the primary answering service for the NDIA does not seem appropriate if one cannot be connected through to a NDIA staff member. Participants with high complex support needs, or their advocates, need to have direct contact with a Delegate within the NDIS who is suitably qualified (an Allied Health professional) and one who has the knowledge and authority to respond to any questions or requests.

National Disability Insurance Scheme Act 2013 - Legislation

People with Disability

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.

    Why then are the NDIA subjecting participants and their families in having to proceed to the AAT in order to get the care and supports that they need? What sort of a culture or capability is this, other than bureaucracy and cost-cutting objectives?

    Participants with higher and complex needs that will not improve over time, should have the certainty of an appropriate support package that is meeting their goals and aspirations and should be rolled over and continue as is, until a change is necessitated. A reassessment date ought not be necessary. This would provide certainty, avoid unnecessary stress and anxiety, and have enormous savings benefits for the NDIA. It would prevent Allied Health professionals, Assistive technology retailers, Continence aids suppliers, having to continually repeat reports, re-quoting, wasting time, and costing money.

The impact of progressing to the Administrative Appeals Tribunal in order to get a suitable plan.

        i) The Agency is using internal and external, "top end of town" lawyers so as to be a formidable force against the disabled participant.

         ii) How can the NDIA justify this kind of behaviour and what sort of culture is endemic within the Agency where they are fighting against the very people for whom the NDIA was created?

          iii) Why should severely disabled participants and their family members or advocates have to proceed to the AAT in order to get the reasonable and necessary supports for their disability and that are aligned with their goals, objectives, and aspirations?

iv) Pursuing a participant for exceptionally personal information on health-related matters in order to justify the required level of support (high intensity) equates to bullying and an invasion of a physically disabled person’s privacy. Had the Agency lawyers read the T- documents for the tribunal, they would already have known the answers to the questions they were demanding.

v) The impact of the additional stress on the participant and their family, created by the NDIA in having to proceed to the AAT, rests fairly and squarely on the question of the entire culture within the NDIA, its operational procedures, and its capability – it has definitely not improved the health and well-being of either the participant or family.

Suitably trained and qualified Allied Health professionals need to be engaged internally and at the Review of a Reviewable decision. They need to be accessible to the participant or the advocate for communication and discussion and act as a Case Manager. Otherwise, the participant remains as an anonymous individual with a NDIA number.

The money that is being wasted by the NDIA when participants need to progress to the AAT in order to obtain a satisfactory plan is contributing to making the system an unsustainable one. Lawyers both for the Agency and the participant are engaged, copious additional reports from Allied Health professionals are needed, Assistive technology is re-costed, participant Impact statements are created, and the entire stressful process is unacceptable. The Occupational Therapist’s 26-page report stated what was necessary. One questions if it was ever read? So much money is being wasted unnecessarily.

Having proceeded to the AAT, where is all this private information now stored? Who has access to it? Does it get uploaded to the participant’s file, or does the participant need to go through this entire process again at the next review?

ANY OTHER RELEVANT MATTERS

Hospital and the NDIA

It is understood that whilst a participant is hospitalized, they are the responsibility of the Health Care system and not the NDIA. Doctors, nurses, and Allied Health professionals provide the care that is centred around the patient’s clinical condition and also cater for their disability needs that are usually part of in- home care and Assistance with Daily Life from the Core Budget funding.

A severely disabled individual who is hospitalized may face many challenges resulting from their physical and or psychosocial disabilities and these are not the duty of the Health Care system to remedy. Living with severe disability is inherently difficult and when a NDIA participant is hospitalized it seems appropriate to take a holistic approach to provide the support that looks at the whole person. This includes their physical, emotional and social wellbeing.
There appears to be an over-reliance by the NDIA on the availability of the informal support network of the participant, and it is therefore appropriate to take into consideration the different age profiles of primary disability groups.
For a mature age adult who is hospitalized, the support that would have once been available to them, as a child or teenager, may no longer be so.
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  o  Take the case of a participant who is in their late forties. They are likely to have aging parents, deceased grandparents,
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deceased aunts or uncles, and may or may not have siblings who are able to sit beside a bedside for weeks on end whilst the participant is in hospital.

      As an example, a paraplegic maybe undergoing surgery for a pressure sore injury and is only permitted to lie-down (and not sit up) for weeks or months in hospital. Or, a participant may have a fracture, be bed-ridden in hospital, or awaiting surgery in addition to a lengthy hospital stay – during this time, for their well-being, they need to remain connected, to family, to their Carers, and to community.

A patient-centred approach (that is not included as part of the health-care system) and one that effectively meets the needs of the disabled individual whilst hospitalized, is suggested.

Enabling social participation from a familiar Carer/support-worker, whilst hospitalized would be of clinical benefit for the well-being of the disabled individual, should they so desire.

It is therefore recommended that if there are goals, objectives, and aspirations that incorporate a budget supporting some hours for social and community inclusion, then the participant should be able to exercise his or her choice and control, and have the flexibility to use this budget so as to help them remain connected whilst in hospital with a familiar carer.

Using the social and community inclusion budget would enable a participant to have their familiar carer/s spend some time with them, provide stability, maintain a supportive environment, initiate conversation, provide comfort and distraction, help prevent depression, and motivate the disabled person towards their recovery and eventual hospital discharge. It improves their daily living which is not something that the health system is able to provide.
The participant runs the real risk of losing their familiar carer (for good) due to hospitalization. This places a person at serious disadvantage because of their disability.
Remaining connected and having social interaction with their familiar Carer, including psychological support, seems to represent good practice and maximises quality of life whilst the participant is in hospital. It complements the informal supports that are available to the participant.
Under the above circumstances it seems reasonable and necessary that the NDIA funding from the Core Budget be used, if the participant should so desire.

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.

FINAL COMMENT

The Australian public is fortunate to have a system in place that caters to the support needs of its severely disabled citizens. The idea of correlating all requirements, i.e., daily support needs, continence aids, assistive technology, social and community inclusion, transport subsidies, under one umbrella works well - Core Supports, Capital Supports, and Capacity Building supports.

However, it is difficult to understand why the NDIA has been implemented as such a complex Scheme. The funding structure is complicated, determining what is deemed as Reasonable and Necessary for an individual’s needs cannot easily be assessed, and the entire Scheme feels impersonal and unnecessarily bureaucratic in nature.

Disability SA and formerly Domiciliary Care worked very well at a State level. A disabled client had a single Occupational Therapist assigned to them who was familiar with their client and the challenges that were evident due to the disability. They were extremely capable and well qualified to understand the particular disability and the required support needs. Using the Disability Services Act of 1993 as a guide, the O.T. had the capacity to provide for the funding and provision of disability services in accordance with certain principles and objectives; and for other related purposes.7 It was a more personalized and simplified system than the current NDIS Scheme.

It is stated that the NDIS has improved the lives of many people with disability but there are significant issues with the management of the Scheme.8 I trust that this submission relating to the lived experience of a severely physically disabled participant whose health issues are increasing with age and will never improve, will provide some helpful information into the capability and culture of the NDIA and its processes.

It is hoped that the processes and procedures of the NDIA can be improved so that a sustainable NDIA to support our most vulnerable persons in society can be effectively delivered as an efficient, financially sustainable, and well- managed Scheme.