Lack of transparency and logic in NDIS planning processes

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Healthy Minds

Specialists Clinical Psychologists

Yarrabee Road

The Gap QLD 4061

Tel: (07) 3300 4374 Fax: (07) 3511 1346 Email: admin@healthymindspsychologists.com

Stephen Heydt

Clinical Psychologist

17th September 2019

Joint Standing Committee on the National Disability Insurance Scheme

PO Box 6100

Parliament House

Canberra ACT 2600

ndis.sen@aph.gov.au

Honourable Members,

Submission to the Joint Standing Committee on the National Disability Insurance Scheme: NDIS Planning.

This enquiry is welcomed as at root of difficulties for participants is the proper planning for

people with disabilities, which cannot be delegated to people with no objective

appreciation of what it means to live with a disability.

Having been an independent clinician working substantially with people with mental

5 disabilities for some 40 years it was my great pleasure to endeavour to support many of

my clients to access NDIS as it became progressively available. My clients have extended

from Tasmania to Townsville, across 4 states and to the Northern Territory at various

times over the past 4 or so years. I am based in Brisbane where about 75% of my clientele

reside. My experience has mostly been with primary mental disabilities, although many of

10 my clients simultaneously exhibit the consequences of physical disabilities.

Over the past two years through the direct employment of a colleague to focus almost

exclusively on assisting our clients to achieve funding this has been achieved with some

80 clients and a better than 95% success rate.

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Due to the NDIS not providing up front support for the time consuming provision of

15 assessments and reports this has for the most part been provided on a pro bono basis. On

average this involved 6 hours and as many as 10 with individual participants and as

indicated earlier with around 80 of them. In each case we have also made ourselves

available to attend the planning sessions either in person or by telephone and in most

cases this has been accepted by participants. We have noticed that there is a significant

20 difference in the funding awarded to those who are supported by us in their planning

sessions and those who participate in planning sessions without support. This however is

not easily quantified as obviously all cases are different.

This submission reflects on experiences with NDIS Planning over the past three years.

These include examples of opaque processes and an inability to elicit information behind

25 NDIS decision making, which affect the ability of professionals to properly inform the NDIA

in this. All the information provided in this submission are the result of experiences as

either witnessed directly or by my professional colleagues in my employ.

Over recent months, progressively and detrimentally from a communication perspective

the planning process has had a further layer added. This has been in the appointment of

30 Partner LACs (ostensible charities) to conduct the initial participant planning session.

Unknown elements of the collated information chosen seemingly at random are then

submitted to a NDIA ‘black box’ where the funding decisions are made. This mitigates

against meaningful input. It has transpired on a number of occasions that the

comprehensive, lengthy and time consuming reports which have been requested by the

35 NDIA or Partners and provided without any funding support have not been considered and

their presence not even noted by those involved in the plan development. This week on

following up delays in the process for two participants’ assessments have been requested

which had already been supplied. On drawing the planners’ attention to this the reports

were found in the system. One participant has been awaiting a plan since April.

40 Every plan is sent by the NDIA to the participant under cover of a letter offering review if

felt unsatisfactory. This is nonsense. In over 20 cases where reviews have been requested

within the stipulated period only one was finalised (and rejected) before the plans have

expired twelve months later and reviews were in any case required. At this point the

meaningless offer of “a review or a new plan” is usually made. This has been explained by

45 an executive in a partner agency as allowing NDIA to reduce its outstanding plan review

statistics.

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In some cases in following up through NDIA ‘feedback’ (complaints) planners and NDIA

personnel including with ‘manager’ titles disclose personal views which are abhorrent and

contradict NDIS Principles. At least one such person is known from a long standing

50 previous role in Disability Services where the same views were demonstrated.

An irritant as a result of the unfunded supports I provide are the frequent allegations of

conflicts of interests made by NDIA staff. This is in spite of working on an honorary basis

two days a week. On the other hand, NDIA and Partner staff in Tasmania and Queensland

have exhibited direct conflicts in contradiction of Rules and Regulations. These are under

55 investigation by the Commonwealth Ombudsman.

The planning sessions whether conducted by NDIA staff in the past, current LAC Partners

including in Tasmania, N.S.W., or Queensland, whether in person at NDIA, Partner

premises or participant’s homes or by phone are an inconsistent grab bag of approaches.

It is appreciated that such a comprehensive scheme does not lend itself to simple drop

60 down menus but the apparent absence of applied logic in the process is concerning. On a

few occasions planning seems to be a platform for the interviewers’ beliefs and

convictions. These include the nature and merits of disability and the needs of the

participant. Planners have reflected that they know of a family member, friend or

neighbour, or seen on television a person with a similar disability by which they are

65 seemingly informed. Different assessment instruments including the WHO-DAS and Pedi

CAT are used inconsistently even when far more substantial assessments and reports are

provided. Planning sessions have lasted from twenty minutes to two hours, with no

correlation to the participant’s circumstances or disability. On two occasions planning

sessions were concluded and then a subsequent session was scheduled without

70 explanation. Once the contact person effectively called the participant a liar for indicating

that a session had already been conducted. In that case notwithstanding the details of

location, date, time, and name of the planner and my presence the second planning

session was conducted. The lack of professional expertise of planners is most concerning.

Even some evincing appropriate qualifications have disclosed that they are such recent

75 graduates as to to broadcast their lack of expertise and even worse lack of empathetic

understanding.

That supports or lack thereof for many people with disabilities are a matter of life or death

seems to lack appreciation in the NDIS context. I have been approached by media for

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comments on two cases where deaths have occurred. While a Coroner may conclude a

80 death is accidental in that there was no intent, in both cases they were described as

avoidable. The lack of attention in the NDIA to the criticality of care is apparent to me

every week in working in support of those with high needs. That the NDIS Quality and

Safeguards Commission has seemingly been established to monitor everyone except the

NDIA will no doubt be cause of further enquiry in years to come. Cases of neglect by the

85 NDIA, likely as a result of poor planning processes and the monitoring of the

implementation of those plans are already being submitted to the Royal Commission.

For reasons of efficiency it is intended to only provide a couple of examples from which it

is hoped that the Honourable Committee Members may be able to develop an

understanding of the difficulty for participants and providers in the Planning process

90 together with other information already ascertained.

One example of this behaviour by NDIA staff was to a 22 year old man with an intellectual

disability receiving a disability pension and lifelong attention and ‘support’ from

Government Departments. He was told that ‘choice and control’ meant that he had to take

responsibility for his plan and it was incumbent on him to find the supports he needed. This

95 was quite outside his functional skills. He sat at home watching television and eating fast

food on his own in what can only be described as terrible circumstances. Some months

later a philanthropist was able to obtain appointment as guardian and take control of his

affairs. Even at that point the NDIA staff member who was designated a manager refused

to engage meaningfully with the guardian. During a meeting to review funding the guardian

100 a health professional of many years standing was moved to display anger towards the

NDIA staff. This resulted in threats of various sanctions and exclusion from the process.

To provide some indication of the lack of logic in some of the awarding of funding one of

our more complex clients was a young woman with autism and severe cerebral palsy

which left her paralysed from the neck down. She was previously supported by Disability

105 Services. She lives independently with support and has no immediate family. In the first

instance her NDIS supports were completely inadequate as well as the fact that she was

not provided with funding for support coordination. More than once this resulted in her

having to call an ambulance to assist her in going to the toilet as her support worker had

not arrived and was not responding to calls. This occurrence even prevents her from

110 getting out of bed in the morning. The agency through which this person was employed

were unable to find anyone at short notice. Once when paramedics arrived they needed to

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call fire and rescue because while the woman had been provided with funds to install a

remote controlled electronic front door lock she had not been provided with sufficient

funding to include the battery back-up system. Due to a power failure at the time the front

115 door was inoperable and fire and rescue had to attend on top of the ambulance to assist

this woman to go to the bathroom. The indignity involved for her in requiring this amount of

attention which in any case arrived too late for her self esteem and confidence can not

even be imagined by the majority of us who have never been in such a predicament.

The lack of transparency in regard to funding was epitomised by funding of a participant

120 based in Tasmania. She initially received some eighteen thousand dollars in total which

was completely inadequate for the supports she required. Her aged parents contacted

their Member of Parliament. Within two weeks and without further enquiry by NDIA or

provision of any information her plan was arbitrarily increased to some nearly fifty

thousand dollars with total flexibility as to how it could be spent. The lack of any visible

125 process in arriving at either of these outcomes is surprising and concerning. In this

particular participant’s case the surprises continued in that after her first year and on

review, she was awarded the largest sum for support coordination over a period of a two

year plan than has been able to be discovered (through social media) as being awarded to

anyone anywhere in Australia. This is well in excess of funding typically awarded for

130 specialist support coordination. Due to my therapeutic role with this client I do not provide

any services in relation to any other funding and the client has an independent support

coordinator, plan manager and support worker provider organisation. I add this due to the

frequent accusations of conflict of interest by NDIA staff.

The following two cases are submitted as evidence of the previously mentioned opacity of

135 the process and the lack of ability to derive any rational understanding of what processes

are used for the development of plans including the extent to which professional

documents are examined or in fact not even recognised as being within the system.

The first client was a 10 year old child at the time, of Indigenous heritage in out of home

care with autism and severely problematic behaviour including sexualised disinhibition.

140 She also has impaired intellectual ability. This child’s First Plan was for seven thousand

dollars of which three and a half thousand dollars was allocated to support coordination.

This was the only funding spent in this initial plan. It has been impossible to find out who

supported the child in her application for access or the identity of the support coordinator.

The balance of the funding remained unspent until the plan expired as no one involved in

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145 her care knew of its existence and enquiries to the NDIA were unproductive - even by

Government child safety officers. Not knowing a plan was already in effect I undertook a

number of assessments and provided a report in order to support a plan. These were

provided on a pro bono basis as the availability of funding was only subsequently

discovered when we tried to register the child for access to the NDIS. This child at the time

150 was under the joint guardianship of her mother and the Communities Department. The

mother is similarly disabled with autism and borderline intelligence and has a severe

anxiety in communicating with any public officials. She was quite oblivious of there being a

plan of who may have submitted information for it or the funding availability and for what it

may be used. This particular matter endured with at least two more and possibly a third

155 short term three monthly plan being provided with additional funding but with no appointed

support coordinator and therefore no ability to identify and appoint providers or again use

the funding. Even though the mother and the Department endorsed my appointment as the

Child Representative this was rejected by the NDIA and request for the NDIA to appoint a

Child Representative never eventuated.

160 To the best of my knowledge the most recent plan expired some months ago, there is no

current plan in effect and the child receives no direct supports. Due to my being unable to

exercise my professional obligations of duty of care and given my inability to make contact

with the mother or any other responsible entity I have had to withdraw. In this case we

have a child of obvious vulnerability at an age of preadolescence who is sexually

165 disinhibited. She would be a perfect candidate for reasonable and necessary supports of

therapy and community support to ensure she does not suffer the consequences of her

disability resulting in deteriorating circumstances. In many occasions I have seen similar

children eventually end up in the criminal justice system.

Contrast this with a 22 year old young woman attending university on a full time basis with

170 a part time job of some 14 hours a week who lives with her professional parents. She has

a driver’s licence and a motor vehicle and is quite able to mobilise herself to whatever

extent she desires. She has been able to travel overseas independently in particular to

Japan and has a social circle albeit limited. This young woman attended the planning

session with her mother with a report indicating that she needed some support to increase

175 her social activities. In her First Plan she was awarded over one hundred thousand dollars.

While her family are people of high integrity and both parents are in professional

occupations they nevertheless made every effort to find out how extensively they could

use the funding including enquiring about supported overseas travel upgrading her motor

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vehicle partial funding of clothes to improve her appearance for the workplace, and other

180 supports which may be available well beyond what was reasonable and necessary.

While there was no intention or conduct of any wrongdoing, there was an obvious desire to

use the funds availed to their fullest.

Finally, I would like to highlight the administrative burden and cost. I have endeavoured to

support my clients at no cost to them. The planning process requires extensive reports and

185 this is even more so for early childhood intervention plans. These reports include

functional behavioural assessments, functional analyses, diagnostic assessments, in some

cases psychometric assessments, descriptive assessments. Some of these may need to

be carried out at multiple locations such as different carers where parents are separated

and/or respite care as well as preschool, school, after school, etc. In some cases

190 Indigenous Australians may have even more locations where they typically reside or

participate in activities as well as with many more family members. The lack of advanced

funding for assessments is most detrimental to those with the greatest need due to lack of

family resources and access to funded professional providers.

In summary, difficulties perceived with the NDIS planning system are as follows:

195 1) Lack of transparency

  1. Lack of stipulated processes
  2. Compromising intervention by unknown players at various stages of the processes
  3. Apparent conflicts of interest within NDIA Partners and the NDIA itself
  4. The NDIA through its independence having no accountability to the community it serves 200 6) Lack of support for access for at risk people with potentially the greatest need for

funding and support.

Yours sincerely,

Stephen Heydt

Clinical Psychologist

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