NDIS participant awaiting first plan after 8 months | External submission

Submission to Joint Standing Committee on the National Disability Insurance

Scheme inquiry in NDIS planning.

Submitted by Dougie Herd

(NDIS participant – still waiting for his first plan after 8 months!)

I live in the Australian Capital Territory where I work as the Executive Director (CEO) of a non-government organisation providing support coordination and plan management services to almost 200 NDIS participants, and additional supports to people with disability and their families not receiving NDIS supports.
I have been a wheelchair user for 35 years as the result of a swimming accident in 1984. I have a spinal cord injury with irreparable damage to my C5, C6 and C7 vertebrae. I have irreversible quadriplegia with paralysis in all four limbs, no triceps or finger function and other functional impairments.
I submitted my access request and medical evidence to become a participant with the NDIS on 6 January 2019. Eight months later I am still waiting for my first plan to be issued.
The unexplained and inexplicable delay in approving my status as an NDIS participant, arranging my first plan meeting and developing my first plan – all processes determined by the NDIA and over which I have had neither choice nor control – illustrate what NDIS Minister Stuart Robert MP called in August 2019 “unacceptable” delays, waiting times and NDIA timeframes.
I agree with the Minister. And I want to place my personal experience of what I regard as an unacceptable and unreasonable delay in processing my NDIS access request in the context of my professional life, working in the disability sectors of Scotland and Australia for more than 30 years.
My professional / employment history and personal life have been entwined in policy and operational ways for 3 decades. Since arriving in Australia 20 years ago I have worked in disability advocacy, disability policy advice, disability services provider reform, leading disability support

provider teams and – somewhat ironically it now seems – being part of the Senior Executive Service leadership team that launched the NDIS in 2013.

My uniquely relevant work history in Australia includes:

 5 years as Executive Officer of a systemic advocacy NGO for people with physical disability living in NSW.  6 years as Executive Officer of the Disability Council of NSW, the official State Government advisory body to successive Ministers for Disability – including John Della Bosca and (now Senator) Kristina Keneally.  3 years in the NSW and National offices of National Disability Services working initially on NSW disability services reform around new models of individualised funding, and latterly reform responses to the introduction of the NDIS.  2 years as the Branch Manager of the National Disability Insurance Agency’s Communications and Engagement teams leading up to, during and after the launch of the NDIS by Prime Minister Rudd on 1 July 2013.  1 year and counting as CEO of a Canberra based NGO providing support coordination and plan management services to hundreds of NDIS participants.

My involvement with and understanding of the NDIS is not simply personal. Working to promote greater social inclusion for people with disability and enhance choice and control within a rights-based framework has been my professional life’s work for over three decades on two continents.
I have personal insight and experience coupled with a demonstrable professional record of achievement of empowering people with disability.
I am disappointed, frustrated and disempowered by the eight month – and still counting – duration across which the NDIA has failed to complete my access request and planning process. Even now, I have no idea when I will receive my first plan or if it will meet my reasonable and necessary support requirements. I have neither read nor seen what the NDIA is considering because the NDIA prohibits its out-sourced LAC provider from sharing with me the information its employee submits to the Agency delegate – who I will never speak to or meet – who will make decisions about my life.

10.Chronology of my access request to the NDIS – still not completed

6 January 2019 – I submitted my Access Request and Medical Evidence form to the National Disability Insurance Agency.

27 March 2019 – I was phoned by an unidentified person from the NDIA who told me I needed to submit documents proving my residency status (I am an Australian citizen) and evidence of my home address. Immediately after the phone call I sent the requested information to the NDIA, including:

 Photo of the personal information page of my Australian passport.  A utilities bill showing my home address in the ACT.

6 May 2019 – I phoned the NDIA national call centre to ask about progress with my access request. I was told that no decision had been reached by that date. I complained to the operator that 4 months had passed since I made my initial application. I was told my complaint would be noted and “escalated”.

19 June 2019 – I received the unsolicited email quoted below – which left blank where my name should appear. I was surprised because despite the email’s reference to “recent contact” with the NDIA I had not, in fact, been in contact with the Agency for more than one month. The email states:

Dear

We’d like to get your feedback about your experience with the National Disability Insurance Scheme (NDIS).

We’re inviting participants, their families and carers to tell us about what they thought of their recent contact with the NDIS.

We want to build the best Scheme we can. Listening to you and learning from you helps us to improve.

Please let us know about your experience with us by answering some short questions. Please log in to the myplace Participant Portal or find out more on the NDIS website.

If you are not registered for the myplace Participant Portal, find out how to register here.

If you would like to find out more about the survey, please call the NDIA Contact Centre on 1800 800 110.

The survey won’t take long.

The feedback you provide will be help us to improve the Scheme for all participants.

Thank you for your help.

24 June 2019 – I phoned the NDIA national call centre to ask what “recent contact” they were referring to because I had not been in touch with the NDIA for weeks while I waited for the long delayed outcome of my access request.

During my call I asked about progress with my access request and was told it had been approved on 18 June. No one from the NDIA had contacted me to advise me of this decision.

28 June 2019 – I received a letter from the NDIA advising me that my access request had been approved.

26 August 2019 – Meeting with Feros Care local area coordinator to conduct my “planning conversation” intended to lead to the development of my first NDIS plan.

During the meeting I gave to the local area coordinator a hard copy version and email copy of the NDIS “Planning Booklet 2” created by the NDIA which – as recommended by the NDIA – I completed in advance of my meeting with the Feros Care LAC.

I have attached a copy of my completed booklet for information.

According to the NDIA its Planning Booklet 2 is intended to assist participants with:

 Understanding your current supports and preparing for your planning meeting

o To get ready for your meeting, think about your current supports and who provides them, and what supports and services you may need to achieve your goals.

o Complete this booklet on your own or with someone’s help and bring it with you to your planning meeting. Consider any relevant reports or assessments you will need to bring with you as well.

 Attending a planning meeting to create your plan

o Learn about what will happen in your planning meeting, who you will meet with, and who you can bring along with you.

 Receiving your approved NDIS plan

o Learn how you will receive your NDIS plan, and what to do next.

6 September 2019 – Awaiting news of progress, notification of the outcome of my planning discussion and decision by the NDIA on my first plan. 8 months to the day. Still waiting. 8 months.

11.Observations on the NDIS planning environment, processes and operations

a) Although this may appear obvious to any reasonable person, the well documented and widespread failings of the NDIS planning processes during at least the last two years – including but not limited to time delays which the current Minister calls “unacceptable” – are exactly that: unacceptable.

b) The eight month delay I have experienced – and which continues even now – has exacerbated the effects of unmet needs I have for reasonable and necessary support across a broad range of functional limitation.

These include:

i. Further deterioration of my faulty wheelchair, long overdue for replacement. ii. An extended period of living without formal support for daily living tasks such as toileting, showering, dressing. iii. No funded support for my continence aids.

iv. A longer period with formal support at home with household tasks, essential garden maintenance, etc.

v. Further delay to investigation of the best options for home modifications to our kitchen (so I could make some contribution to household chores) and step-free access to our rear yard (so I could make some contribution – however minimal that might be) to garden maintenance). vi. Further deterioration in my already limited functional capability and limited strength because I have had no formal support from specialist therapy staff (such as an exercise physiologist). vii. No support to help me maintain in working order the specialist vehicle modifications of my car, even though I am unable to use public transport in the ACT without assistance.

c) The delays I have encountered are not uncommon, not new and not unknown to the NDIA Executive, the NDIA Board, the State, Territory and Commonwealth Ministers whose governments make up the formal partnership that controls the policy.

The systemic problems and failings of NDIS planning processes have been known about, described and documented in a broad range of studies and enquires including those of the Productivity Commission, in my own jurisdiction the 2018 ACT Legislative Inquiry in the operation of the NDIS and through the work of the Australian Parliament’s Joint Standing Committee on the National Disability Insurance Scheme.

d) It is my contention the current NDIA arrangements for developing participant plans woefully undermine and thwart – at best – the spirit, intensions and requirements of the NDIS Act 2013.

Section 31 of the NDIS Act “Principles relating to plans” states:

The preparation, review and replacement of a participant’s plan, and the management of the funding for supports under a participant’s plan, should so far as reasonably practicable: (a) be individualised; and (b) be directed by the participant; and (c) where relevant, consider and respect the role of family, carers and other persons who are significant in the life of the participant; and

(d) where possible, strengthen and build capacity of families and carers to support participants who are children; and (da) if the participant and the participant’s carers agree—strengthen and build the capacity of families and carers to support the participant in adult life; and (e) consider the availability to the participant of informal support and other support services generally available to any person in the community; and (f) support communities to respond to the individual goals and needs of participants; and (g) be underpinned by the right of the participant to exercise control over his or her own life; and (h) advance the inclusion and participation in the community of the participant with the aim of achieving his or her individual aspirations; and (i) maximise the choice and independence of the participant; and (j) facilitate tailored and flexible responses to the individual goals and needs of the participant; and (k) provide the context for the provision of disability services to the participant and, where appropriate, coordinate the delivery of disability services where t

Section 32 of the NDIS Act “CEO must facilitate preparation of participant’s plan” states:

(Section 32.c) … the CEO must commence facilitating the preparation of the plan as soon as reasonably practicable, having regard to the obligations of the CEO under the rules to commence facilitating the preparation of other participants’ plans.

I would also draw the Committee’s attention to Section 33 of the NDIS Act “Matters that must be included in a participant’s plan”.

e) My eight month wait to be provided with my first NDIS plan is, by any stretch of the imagination, unreasonable and calls into question whether or not the rights I have as a participant under the terms of the NDIS Act are being met.

f) The decision by the NDIS Board and / or the NDIA CEO to out-source a significant proportion of NDIS plan preparatory work (including the development of my first plan) diminishes the possibility that I can genuinely exercise choice and control of my plan’s development. The current processes are deficient in many, crucially important ways:

i. The NDIA delegate who will decide on what is reasonable and necessary in my plan has never met me, spoken to me or – as far as I am aware – seen or read the NDIA’s Planning Booklet 2 which, on the

published advice of the NDIA, I completed in advance of my meeting with the outsourced LAC employee.

It is almost impossible to believe that whatever plan I finally receive from a delegate who has never met me could be genuinely “individualised” (Section 32.a) or “be directed by the participant” (Section 32.b)

ii. I have never seen the LAC employee’s submission – based on her understanding and notes of her one, 90-minute conversation with me and my partner. And currently NDIA enforced rules prohibit me from seeing or receiving a copy of whatever is sent from the LAC to the real decision-maker, the NDIA delegate. I have no choice in this operational matter, no control over it and I play no part in directing it, despite what the NDIS Act says about the my role in the NDIS.

iii. I will not see my plan until after the irrevocable decision taken by the NDIA delegate. There is currently no formal or informal mechanism for correcting factual inaccuracies, addressing omission, or discussing the relative weightings given by the delegate to the essentially arbitrary but inflexible demarcations between COOR and CAPACITY BUILDING allocations.

iv. The inflexibility of the current arrangements and the persistent – but obtuse – insistence that any variation of a plan must be treated as if it is a wholly new plan forces participants down time-wasting, resource intensive and further delayed bureaucratic routs involving REVIEWS OF REVIEWABLE DECISIONS or if no corrective action is taken by the NDIA to the ADMINISTRATIVE APPEALS TRIBUNAL.

g) The out-sourcing of NDIA planning activity (but, one notes, NEVER plan or financial decision-making authority) to Local Area Coordination ‘NDIS partners’ has several adverse and detrimental consequences for the NDIS, for NDIS participants and for the wider Australian community:

i. The individualised, person-centred relationship intended to be at the heart of the choice and control principle of the NDIS between the participant and an NDIS planner with decision-making powers has

been severed or – even worse – never created for tens of thousands of participants like me. ii. The NDIA has no idea what I – Dougie Herd as an individual – need or want from my formal and informal supports. At best the NDIA delegate gets a flavour of what a LAC employee captured in her notes in one, 90-minute meeting. I don’t direct anything the NDIA delegate decides. iii. The outsourcing of plan preparation results in NDIA delegate errors – not because such delegates are inherently incapable of reaching cogent decisions but because they never meet participants in my outsourced environment, and they don’t know what I need. The wholly avoidable results are the far too many REVIEWS, LIGHT

TOUCH REVIEWS, REVIEWS OF REVIEWABLE DECISIONS, tussles

before or at the ADMINISTRATIVE APPEALS TRIBUNAL.

The current planning arrangements and processes don’t simply or only undermine, if not breach, the NDIS Act. They are disempowering, inefficient, wasteful, time-consuming and costly.

iv. As a direct consequence of the outsourcing of plan preparations the NDIA cannot fulfil its lawful duty to NDIS participants AND the local area coordinator ‘NDIS partner’ cannot fulfil the original intention for it (used to be known as ‘tier 2’). The Agency was meant to focus on participants. LACs were meant to contribute to attitudinal and operational barrier-reduction in the so-called mainstream. Through this distribution od responsibilities the promise of the NDIS is that – over time – it would  Maximise choice and control over individualised reasonable and necessary supports for the most profoundly disabled 460,000 Australians (approximately 8% of the total) through NDIS participant plans; AND  Through LAC activity in concert with the mainstream of human services create a more inclusive society for all Australians with disability.

Neither of these founding principles and strategic priorities are currently being achieved. One need look no further than the most recently published NDIS Quarterly Reports and thematic reports to find confirmation in the NDIA’s own analysis that – despite the good

work being done – the current arrangements are failing a sizeable proportion of the participant base and the wider community of Australia as a whole. For example, see:

 Utilisation rates of funds already allocated to participant plans which – nationwide – has never exceeded the low 70 per cents.  Employment rates for those 25 years and over after one year as an NDIS participant – down one percentage point.  The range of inclusion indicators across age, location and disability types that tell us in many key areas roughly one third of all participants report no change or lower levels of inclusion and / or personal agency AFTER joining the NDIS.

h) There many operational, relationship, administration and policy changes that the NDIA Board could authorise immediately to improve access to, engagement with and the time frames of the NDIS planning environment. Most of them have been comprehensively set out in the tower of Inquiry reports that the Agency and government stakeholders have commissioned and considered.

i) Finally, it seems crystal clear to me that the structural challenges sand shortcomings of the NDIS planning environment – although not exclusively a consequence of this catastrophic mistake – can be traced directly or indirectly to the deeply-flawed decision by the Commonwealth Minister to impose an arbitrary and – as we have seen since – disruptive and distorting staffing cap on the NDIA.

j) The staff cap should be lifted and within the global budget for the NDIS the NDIA Board, acting on the advice of the NDIA CEO, should be free and empowered to take strategic decisions that restore the original intentions for the NDIS.

k) LACs should be restored to being local area coordinators not quasi- planners.

Dougie Herd.

6 September 2019