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 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 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.
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.
2
Page 3
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 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 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 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 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 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 graduates as 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
Page 4
comments on two cases where deaths have occurred. While a Coroner may conclude a
deadth 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
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
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
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
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
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
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
4
Page 5
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 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 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 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 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 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. 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
Page 6
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
6
Summary
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 2) Lack of stipulated processes 3) Compromising intervention by unknown players at various stages of the processes 4) Apparent conflicts of interest within NDIA Partners and the NDIA itself 5) 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
7