Stephen Heydt

Adjunct Associate Professor

Clinical Psychologist

Healthy Minds

Clinical Psychologists

Positive Behaviour Support Specialists

Yarrabee Road

The Gap QLD 4061

Tel: (07) 3300 4374 Fax: (07) 3511 1346 Email: admin@healthymindspsychologists.com Yarrabee Therapies Pty Ltd t/a ABN: 27151352804

18 June, 2024

Honourable Senators,

Apologies for the length of this document.

1. This submission will encourage and seek to justify a root and branch review of

the National Disability Insurance Agency (NDIA) and the NDIS Quality and

Safeguards Commission (Commission) and their respective and sometimes

contradictory functions. This to occur before amending legislation.

While there has been a Royal Commission into Disability and a review of the NDIS, there

has been no review of the Agency or Commission functions, beyond reducing costs of the

former, and that, seemingly simplistically, by announcing reducing access and individual

funding, while increasing the regulation, namely, prescription and proscriptions by the

latter.

Paradoxicality, both efforts have resulted in increasing costs of supplying supports at the

same remuneration inevitably leading to a reduction in the quality of services provided.

While there have been many press releases and ministerial statements as to the

importance of the NDIS and its continuance, participant families are in no doubt as to the

likely impact of cost cutting. Providers too have no doubt of the imposition of increased

productivity, regulation and policing. This objective includes the aggregation or massing of

services to ever larger providers, with an inevitable loss of individual attention and quality.

This will be demonstrated through the case studies below.

There appears to be a significant disconnect. While appropriately reinforcing the

uniqueness of every person with disabilities, there has been a simultaneous conflating of

disabilities.

For people with physical disabilities the world is entirely distinct from those with mental

disabilities. For example, highlighting ‘choice and control’ for people, who have the

cognitive ability to exercise this right, is self-evidently appropriate. Providing this without

checks and balances to people unable to either, at all or easily make such decisions has

questionable veracity. Exploitation and neglect are not only possible but probable and nextensive.

The complexity of this is not vested simplistically in intelligence. While a person with nsignificant intellectual impairment may be effectively and correctly adjudged to need nas assistance to a lesser or entire extent in some decisions, a person with a restrictive eating ndisorder and superior intellect may be just as or even more so, unable to make daily nfunctional life sustaining decisions.

The NDIA has through a short list of trite phrases sought to simplify such dilemmas, losing nsight of the only objective measure of effective functioning being some form of standardised assessment, only for example, the World Health Organisation Disability Assessment Schedule and the World Health Organisation Quality of Life Assessment.

The Agency must have proper information to reconcile the unreconcilable, namely, quality of life, disability, and human rights to effectively fund the reasonable and necessary needs. It does not do this. Instead, the mooted amendments to the relevant Acts and for example, as outlined in the June Sustainability Report of the Australian Government Actuary, dated 16 October 2023, suggests analysis already based on disability averaging and an intended move to more diligently or perhaps, prescriptively implement this as a funding model across the Scheme.

The NDIS Commission has then further sought to simplify this through the progressive proscription of all restrictive practices; delegating these responsibilities to self-assessed ‘behaviour support practitioners’, a euphemistic road to hell, who may or may not have meaningful or any qualifications and experience in directly working with people with disabilities. In turn such prescriptions are expected to be implemented by disability support workers who are not required to have any qualification; they may often have no means of effective communication with their participants. As will be exemplified below this can have literally deadly consequences for people with disabilities.

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2. This submission will seek to justify the appointment of an NDIS Ombudsman to

intercede, mediate and arbitrate, before participants and their carers approach the

Administrative Appeals Tribunal (AAT), more recently the Administrative Review Tribunal (ART), which will be referred to throughout this document as ‘Tribunal’.

Approaching the Tribunal is an exhausting and demoralising experience. In a known case the NDIS AAT Team appointed lawyers in a formal hearing, without foundation and with tacit endorsement by the presiding Member, accused parents of abuse and neglect to the extent that a parent attempted suicide, requiring hospitalisation. The participant needed 24/7 in home respite care, at the cost of the Scheme.

The Commonwealth Ombudsman’s role when experienced, has been to only revert matters to the NDIA, causing some minimal alacrity.

Please note: The Agency, on its web sites, in literature, and explanatory documents favours fictitious case studies. This submission will only describe actual cases. While all circumstances are factual, participants will be deidentified, genders will be obscured and funding examples will be rounded to, as far as is possible, blur identification of participants by the Agency. Even then it is expected that the NDIA or Commission may seek to and will be able to identify our clinic’s participants. This is deemed necessary as a result of experience.

• In a completely unrelated context NDIS Commission staff researched deidentified details

of a participant through the Commission’s portal, divulging this in correspondence.

• Judging only by their titles, senior staff of the NDIA inappropriately identified and

divulged details of an officially protected individual internally, and externally to a Local Area Coordinator subcontractor.

• In another matter a participant was identified and their personal data used in unrelated

correspondence with a provider.

• Senior staff of the Commission have had to be advised on several occasions that emails

have been incorrectly addressed, containing participant’s personal information which did not appear to be appropriate in any external correspondence.

The NDIS

The NDIS was welcomed by people with disabilities and seen as their hope of levelling up. After 10 years it is difficult to understand its principles and or to see how they are upheld.

• At present (This page current as of 17 April 2024) the NDIS web site states:

• “The NDIS provides funding to eligible people with disability to gain more time with family and friends, greater independence, access to new skills, jobs, or volunteering in their community, and an improved quality of life.

• The NDIS also connects anyone with disability to services in their community. This includes connections to doctors, community groups, sporting clubs, support groups, libraries and schools, as well as providing information about what support is provided by each state and territory government.

• The NDIS now supports over 500,000 Australians with disability to access the services and supports they need.

• This includes supporting approximately 80,000 children with developmental delay, ensuring they receive supports early so that they achieve the best outcomes throughout their lives.“

“SDA helps to stimulate the market to produce high quality, contemporary,

   accessible, well-designed housing for participants with SDA funding in their plan.

SDA funding is paid directly to SDA providers to cover the building and maintenance

   costs."1

Now, as it would appear that the objective has been met, the Agency and its Minister

complain that, in effect, the Scheme is too successful.

There was no apparent understanding of how the available supply of services would be

able to meet the demand, with an unavoidable effective inflationary blow out in costs.

While no expert in economics, but having sought expert academic advice for this

submission, and as explained, the outcome was inevitable. It seems likely that paying a

completely unqualified person as a support worker up to 40% more than a registered

nurse or 15% less than a casual teacher but almost 50% more than a permanent teacher’s

annual salary, would distort the wider worker economy, as it appears to have done. It

would also inevitably attract fraudsters. The apparent regularly expressed surprise at the

proliferation of profiteers suggests that Australian public service has learned nothing from

the myriad of government funded employment, tertiary education, child care, or any capital

works partnerships. There is further no evidence of the Agency or its advisers’ understanding of the well established principle,

 "To  reduce  the  frequency  of  misbehavior  by  normally  well-intentioned
  individuals, policymakers need to be aware that classic approaches to limiting
 corruption sometimes increase the likelihood that good people will engage in
 misconduct."2

More simply in an area of direct experience, in advising Australian public services on behavioural probity and corruption prevention, its mere publicising leads to its expansion, through increasing knowledge of opportunity.

A more cynical interpretation

A more cynical interpretation is that a mushrooming of costs and resultant corruption is built in to the expression of new projects, in which case the present hand-wringing in relation to the NDIS is all the more inexplicable.

The above and following economic information was sought out of concern to better understand the underpinnings of the cost reduction efforts of the NDIA. For this lay person’s benefit, as explained by a Queensland university based academic, he advised that the approximately 160,000 people employed and paying tax in the Scheme contribute about one third of its costs or at present some fifteen billion dollars. Reduction in costs would lead to reductions in services and increased unemployment at a cost to the economy. In addition he estimated that of the total Plan costs shown within the annual financial statements, at a minimum twenty percent returns to the Government in direct and indirect (GST) tax, while suggesting this could be as high as thirty percent. He further explained a taxation multiplier effect, and that a rapid downscaling of the Scheme while being economically deflating may precipitate negative growth, as much for its psychological effect as directly. If correct, while the efficiency of the targeting of the Scheme must be improved for the participants’ benefits, the present almost weekly briefings as to the Schemes unafordability, both now and into the future, are questionable.

While only operating from a relatively small sample of 300 participants over the years of the NDIS, the only word that appears to sum the conduct of the Agency and more recently since its advent, that of the NDIS Commission, and used widely within the sector, seems to be ‘chaotic’. The shear volume of material produced by the NDIA and Commission, for immediate adherence or penalty, is impossible for participants and is a major distractor if not detractor for providers. There seems no appreciation within either entity of the impact of this volubility of so called resources and directions on the supports, formal and informal, and therefore on the lives of the people it was designed to serve. In particular the Commission must be highlighted for its issuing, correcting and retracting of information.

At the commencement of the roll out my clinic employed a provisional psychologist to assist people, who needed it, to transition to the NDIS. While most clients automatically transitioned from State to the NDIS, the result was almost always inadequate and appeals were necessary. In the years prior to the roll out it appears that all States had sought to minimise their costs, including shuttering agencies well ahead of the implementation (for a Queensland example, Evolve Services, inter alia). For people who were new to disability

• services we helped with the completion of forms, obtaining clinical diagnoses and
• functional assessments, and supporting people in initial meetings. No funds were sought
• or available for this. In the first two years 140 people were assisted. 139 were successful
• at the first Access attempt.

The first item in the Service Charter is “Transparent”, namely, “We will make it easy to access and understand our information and decisions.“3

The following examples are provided from our small clinic NNDIS participant cohort to illustrate the level of ineffectiveness of the Agency in seeking to direct funding appropriately. In our experience three quarters of all Plans are either over or under funded, at least by 25% and often to ridiculous extents. The costs to the Scheme of being appealed, reviewing and reissuing are nothing compared with the emotional and physical burden on participants and their families.

On the positive side, the NDIS provides funding to improve people’s lives, but in such a manner as to suggest its inappropriate design and implementation. Given low level of complaints that are published on the Agency’s dashboard, a logical assumption is that the Agency is inclined to over rather than under fund. While theoretically this may appear to be good, in practice it seems that some people are having their functional capacity reduced by excessive funding. The actual examples below showcase both situations.

Case example 1.

As part of our assisting people access the NDIS, we assisted several first responders who had been discharged from work on mental health grounds. All were long serving, in stable relationships and circumstances, had been diagnosed with PTSD, were isolated except from immediate family, and were suffering from deteriorating mental and physical health, including repeated hospitalisations. In the roll out, four were assisted with Access applications to the scheme. Three gained immediate access and significant funding. The fourth was rejected with no reason given. A NDIS Act S.100 review of decision request was made and this too was rejected with the templated delegate’s response citing S.34 (the same grammatical and paraphrasing errors in the response has been noted in such decisions from different delegates over the years).

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This was the first occasion, of now fourteen that we have been involved in an AAT Appeal.

Within 72 hours of completing the online AAT application form, an email was received from the Agency with a Plan attached. This was for approximately double the funding required for the number of physical, psychological and occupational therapy and support hours that were requested in the psychologist’s letter attached to the Access request. There was no initial Plan meeting or call. That Plan was rolled over at the end of twelve months, after a telephone meeting, with additional funding, which has reoccurred each year since, even though the participant has never come close to using all the funding in the Plan.

All four of these participants have seen significant increases in Plan funding each year upon the renewal of their Plans, which some have sought to use to their maximum, rather than essential benefit; for example, additional domestic support when the therapeutic focus is on improved self-sufficient functioning, and when greater community engagement was regarded by professionals and family as beneficial, additional funding for daily support worker home attendance has increased isolation.

Case example 2.

A young woman with a professional university qualification, full time employment, with her own vehicle, annual solo overseas trips, living at home, with an autism spectrum condition.

Funding was sought for social skill development and direct support with community peer engagement. A total Plan was recommended by us of some $10,000. The Initial Plan provided by the Agency was for in excess of $100,000. The participant and family found numerous means to utilise the funding to its maximum. For reasons of professional confidentiality it was not possible to raise this with the NDIA except in general terms. The participant was discharged by us due to concerns about the improper use of the Plan and its detrimental consequences for her future improved functioning and independence, including reduction in structured community participation by reducing work hours and increased time at home alone.

Case example 3.

A teenager with autism, less than 0.1 percentile cognitive functioning, and severe aggression to others, was referred by a public health paediatrician.

For his entire schooling the objective had been for the child to attend at school for 2 hours a day. Most days he was unable to attend for an hour. While at school, for safety, he was

supervised, rather than educated, alone in a class with two staff, with panic alarms and

two way radios for safety. He had physically injured a number of staff and fellow students.

Each day his mother waited outside the school to remove him when he became heightened. On taking him home, both while in the car and on arrival at home, she was often attacked by him. While at school on many occasions the school would lock down and require police attendance due to his behaviour. When called to his home police would always attend with at least four officers. At times paramedics would jointly attend. On one occasion nine police including a superintendent and five paramedics including a complex care specialist were required to try to ensure everyone’s safety.

On referral the child had a NDIS Plan that did not allow two to one support and therefore was not possible to implement while ensuring the participant’s and workers’ safety, let alone protecting his mother. The only capacity building therapy included in the Plan was for behaviour support. Proper intervention design was impossible due to the funding not allowing sufficient personnel and their meaningful training in the implementation of learning (note: individualised formal behaviour therapy is referred to as teaching and learning).

A request for review under the NDIS Act S.100 was refused and a subsequent S.42 was also refused resulting in a Tribunal appeal. After 18 months of drip feeding funding, and only hours before the commencement of the formal Tribunal hearing, the parents received an email with a Plan for over one million dollars of funding. This level of funding was never requested.

Due to COVID19 and school lockdown immediate intensive behaviour therapy was initiated, with extensive training of all supports and employment of qualified professionals including a psychologist and Board Certified Behaviour Analyst. All support workers had completed at least two years of university in related areas, several were graduates undergoing post graduate training and supervision.

Over twelve months, for the first time, the participant learned basics of reading, writing and counting, to dress, personal hygiene, and to moderate his aggressive and impulsive behaviour. He was introduced to pleasurable activities he could choose, or not, after their introduction. He was able to access the community including shopping with his mother and with support. He was engaged in a community RSPCA program, learned to sleep alone, and the family had its first holiday (self funded with paid supports) in fifteen years.

To imbue such changes robustly in teens takes longer and is more complex than earlier life

intervention, so a five year plan was designed. It was expected that after this period the

person would be able to engage in the community and participate in activities of personal

interest; he showed particular and unusual aptitude for simple movie making which was

seen as possibly articulable into meaningful remunerative employment, or just greater skill

to persue the pastime.

At the end of the twelve month Plan period, almost half the previous Plan was unspent.

The Agency provided a new Plan which showed the unspent funding was rolled over and

another over one million dollars provided, again, never requested.

Just some six weeks later, and with no forewarning, a new Plan for just two hundred

thousand dollars was provided only for support workers but no therapeutic input or even

behaviour management. The decision letter accompanying it included ungrammatical nsentences, extensive unrelated arguments, and was signed by a delegate who

subsequently advised was leave at the time. An appeal resulted in some behaviour support funding, but no funding for therapists or even therapy assistants, as the NDIA describes and thereby endorses people carrying out therapy with no qualifications.

Since then, and now for some further 18 months or a total of 38 months over four and a half years, the parents have been engaged with the NDIA in the Tribunal. There has been no funding for therapy for 18 months, and most of the participant’s first year gains have been lost. During various Tribunal processes the NDIA has sought at least four independent reports as well as being provided those of a community paediatrician, a public health team, a hospital team, a general practitioner, a clinical psychologist, a Board Certified Behaviour Analyst and a Commission endorsed positive behaviour support practitioner, all of which it appears to reject. It has obtained advice from its Technical Branch, which concernedly focused on criticising our clinic website, which we deliberately do not maintain as we do not have capacity to accept additional clients.

Our various direct and indirect dealing with the Technical Branch must raise questions as

to the incumbents qualifications and suitability. Their identity and qualifications are never formally disclosed. One, who participated in a conciliation meeting, claimed membership of an AHPRA registered profession while not being registered.

The young person in question is now an adult with no legal guardian due to the decision of

the Queensland Tribunal and their focus on rights. The general lack of understanding of

the dire circumstances of some people with mental disabilities and their families seems to

be poorly understood until they make most unfortunate headlines.

Other adults with similar functioning and behaviours of concern, directly known and living

under State guardianship are cared for 24/7 alone, on a two to one staffing basis with

teams of as many as 13 permanent employees. Some live entirely isolated, out of

community site, with their workers and professionals proscribed from identifying them and

their circumstances. A year of reading the Disability Royal Commission Reports and

requests to State Governments has failed to identify any data on the number of people in

Australia kept in segregation, with no external oversight. In a personal exchange the Chief

Executive of a large Australian charity estimates there may be over twenty thousand

people living in such circumstances. The cost of just one such person in 2024 has been

advised as budgeted at well over one million dollars.

This person is nineteen and physically robust. His parents cannot care for him without

further assistance than the Agency presently funds. With a projected life at minimum of 70

years, and likely and hopefully much more, under such care, with a baseline of one million

dollars and annual cpi of 3%, his care will cost the tax payer one hundred and twenty

million dollars. That does not include accommodation, disability pension, medical and

dental, possible legal, and all the other attendant potential overheads.

While no guarantees can be made, even halving the cost of care by the proper provision of

therapy for the reasonable future, would seem to be most effective and its absence

neglectful of the person, the family, and every member of the community.

It is well understood that this is a simple extrapolation, for which the writer is not specially

qualified and that there may be more complex matters at play. It is nevertheless observed

that psychologists are extensively trained in statistical analysis and of these clinical

psychologists more so, regularly writing professional reports analysing data. As a

profession we are numerate.

Case example 4.

At the commencement of the Brisbane roll out our clinic was approached to provide a clinical report for a middle aged man with moderate intellectual impairment. He lived alone with daily support provided by one support worker, who assisted him for eight hours a day, up to six days a week in all tasks. At night he was usually alone watching TV. A footy fan, he attended local games when his support worker was available.

Prior to the NDIS, his older parents had supplemented funding from the State to ensure it was sufficient to employ the support worker who had been recruited by them. He had previously done similar work overseas. The supports provided were entirely functional with no therapy or efforts to improve functioning. The family seemed not to be of the view that this was possible.

With the advent of the NDIS the support worker had assumed the role of advisor of the care of the man. The support worker represented the participant in the telephone planning meeting on the orally expressed confirmation of the participant, who would have had minimal to no understanding of the nature of the proceedings.

The support worker advocated to Self Manage funding asserting to the family that he would do this on the person’s behalf. On receipt of the Initial Plan he assumed the roles of Support Coordinator, managing the Plan, all support provision, and employed his partner to assist.

The participant had relatives living overseas and each year visited for two to three weeks. The support worker was from the same country and he and his partner would accompany the person on the trip with all expenses and all hours away paid. On a later single contact, the parents were unaware of the amount of the NDIS funding and evinced no concerns other than that occasionally the support worker would ask them for some funds, but “very much less than they had previously provided.”

Only conducting the assessment and writing a report we were never, nor should we have been, aware of what funding was obtained nor how it was being used. Being concerned as to the possible exploiting of the person and their funding we approached the Queensland department as well as the Agency, neither of whom would discuss the matter with us.

Case Examples

Case example 5.

A severely cognitively impaired, non-verbal child with autism living with his family. Father was a stay at home carer as the child was inclined to hurt himself whenever left unattended. The house only had upstairs bedrooms and the child had fallen over handrails, and walked through closed glass windows, causing injury.

The NDIA agreed to fund a downstairs bedroom. For cost reasons it would only fund a flat metal roof, in Queensland. The summer temperature exceeded 45 degrees. Requests for air-conditioning were refused. As stated the child had no concept of glass and the bedroom had large unstrengthened floor to ceiling glass panes. A request for this to be changed was also refused. Eventually it became too much for them and the family moved elsewhere to a single level home. The room built by the NDIA was converted into a garage by the new owners.

Case example 6.

An older teenager with cerebral palsy living at home with family in a Queenslander. She was unable to navigate the stairs and her father had to carry her up and down until he injured his back. A quote for remodelling the stairs to not be as steep and create landings was obtained, reportedly costing some $6,000 for the alteration. The NDIA insisted that a specialist architect and occupational therapist write reports, for just under $4,000. They determined that an elevator be installed. The final cost was in excess of $100,000. It was a single person device. As the participant also suffered from epilepsy as identified in reports, it would be unsafe for her to travel alone in it with the chance of the mechanism failing, she becoming stuck in it preventing access, or in case of some other emergency.

Due to a parent also becoming unable to navigate the stairs and the lift failing numerous times in its first months, the family sold and moved to a new home. The home and lift were demolished in under a year and town houses built on site.

Case example 7.

A young adult with a university humanities degree, extreme emotional dysregulation with her family but not elsewhere, attended at least two but perhaps as many as four, week- long yoga, retreats funded as respite care, costing $6,000, per week.

Case examples of the deaths of participants:

Again, respectfully reminding that we are a tiny provider of high intensity functional improvement and skill development to people referred with challenging behaviours, and their families. That we have had the following occur in such a small cohort should be deeply concerning. We are advised that as all three cases were a result of natural circumstances they do not require further investigation. The Agency has been notified of them.

• A middle aged women with chronic illness, requiring frequent inpatient treatment, cared for her adult daughter with disabilities. She was discharged from one of her treatments. The public hospital had assisted with an NDIS Access application prior to her discharge. Their understanding was that support was in place. She was subsequently unwilling to again attend hospital for necessary treatment as there was no one to care for her daughter. She contacted us during this period to assist her daughter but provided no information as to her own situation. By the time the scheduled appointment to conduct an assessment arrived, she had died with her NDIS Plan only arriving subsequently. We continue to assist the daughter who receives NDIS SIL funding.

• A middle aged man living with intellectual disability and a congenital heart condition. He had longstanding support workers and was living in SIL accommodation. His NDIS funding included a behaviour support plan, which didn’t identify and therefore authorise restrictive practices. The person became infected with a virus. His support workers wanted to seek medical assistance but the man refused having a longstanding known aversion to medical treatment. While being aware of his chronic physical condition they also knew of his aversion and felt they had no authority to call for medical assistance, and he did not present as an emergency. While alone the man had a cardiac arrest and died, being found some time later. He was subsequently reported to have had viral pneumonia.

• A young woman tetraplegic living independently with all wake time support. Shortly after

Other matters (only for example):

The NDIA has created a number of functions for its own ostensible assistance. Some appear to be duplications and triplications of Agency services, others have subsumed services provided by other agencies. Still others have distanced family members from their relatives through the redirecting of responsibility away from families and to NDIA functions and even to nominees.

The Agency at 30 June 2023, reports: “the NDIA workforce was 13,690, comprising: … 5,441 full-time equivalent (APS) employees, … 2,139 contractors, … 5,899 outsourced workers, comprising 4,917 PITC partner staff, (and) 974 National Contact Centre staff…”,4 apparently costing the $1.75 billion reflected in the accounts.

This does not include the staff costs hidden in the ‘Participant plan expenses’ item of $228 million for Plan Management for six months5, and $428 million for six months for Support Coordination6 amounting to over $3 billion to administer the scheme. Surely this is excessive? Questions to the Agency about benchmarking against other services internationally have never received a response. It is almost impossible to identify responsible personnel directly or even through the call centre to elicit information. Once a call centre requested responses was obtained five weeks later. Usually responses require resorting to complaints through local members and senators.

Partners in the Community/Local Area Coordinators: These organisations in major cities appear to provide cover and obscure access to Agency staff. While engaged in initial planning, PITCs function of coordination and support has, among our participant cohort

• never amounted to more than providing an email with web sites as to possible services,

which given the minimal literacy among our clients and limited availability of services, was

seldom of any use.

In instances PITC personnel in planning minimised participant’s needs with the

subsequent NDIA planner further so doing. PITC contacts during planning meetings to the

point of an agenda seeming apparent, were active in negating the need for Support Coordination. In several cases upon appeal, Level 3 coordination was funded. In others for unknown reasons as described above Plans would be developed for significantly inflated amounts. The Agency reports of participant facing staff appear a misnomer. Five known to be considered so, while having contact with PITC providers, have no contact with participants.

Plan Managers: The NDIA invented this category to describe fund re-disbursement agencies. They fill no role that meets a description of to manage. What its intention may have been is impossible to discern. While their brief is to provide a degree of education about funding and its expenditure, not one of our clients has been availed of such except in the form of complex budget reports well outside their understanding and apps which don’t seem to work for our clients. This function is then duplicated by the Agency.

According to the NDIA 2022-23, Annual Pricing Review Report of June, 2023 as quoted above, these services may be costing as much as half a billion dollars a year, to pay invoices, through the Agency’s portal that fills the same function for Agency and Self- Managed Plans.

Support Coordinators: Out of client imposed necessity we registered as Support Coordinators, thereafter to be accused by the NDIA and Commission of conflicts of interest. As a result we moved our participants to other SCs, only to have had each request to return, which we have mostly refused. In many cases families are undertaking all the coordination, with our unfunded assistance, while SCs are being paid. In cases large community SCs have charged, and one for forty hours, after only an initial appointment with a participant. This was advised to the Agency and in the one case refunded. According to the 2022-23 Annual Pricing Review Report, June 2023 (pg. 8), there is a reported proliferation of Support Coordinators since their need for registration was removed. The number of participants supported by each coordinator has decreased, markedly.

Submission

From social media and other sources it seems apparent that parents, and in at least one case a participant who may simultaneously be employed by the NDIA, are undertaking the funded coordination and charging the NDIS. Some of the parents and carers in these situations may also be Self Managing the funding, as is the individual described. Due to the complexity of the Scheme, subjectively, many more parents and carers seem to be withdrawing from employment to care for their children and manage their supports full 时间.

It is strongly suggested that, where possible, families should be formally funded for undertaking the support coordination roles, perhaps on a functional disability related tiered basis. We know many of our parents are unable to work to ensure the care of their children, while managing deficient SCs and exhorting them to pursue their paid role becomes an additional burden.

Finally but of importance, We still encounter aged carers with adult children, who are still providing support, without any knowledge of or support from the Scheme, living only off disability and carers pensions. We are unaware of any outreach to assist these people who when we have encountered them are in dire situations.

It is hoped that this submission finds favour to consider its recommendations.

These are,

1. a root and branch review of the Agency and the Commission, from fresh eyes,
  perhaps with international experience or at least international comparisons,
  and,

2.  the implementation of an Ombudsman style role other than the Commonwealth
 Ombudsman with an ability to mediate between participants and the Agency
   without the involvement of lawyers or engaging in adversarial processes.

There are many other matters that might have been canvassed.

These, not least, are the use of external guidelines with no identified veracity and in contradiction of research, the proliferation of focus groups and Delphi methods in developing the Agency’s and Commission’s functions and the lack of evidence for data based underpinning of the Agency’s approaches to improving the lives of people with

• disabilities, who are unable to speak for themselves.

Another, placing checks on the myriad unregistered service providers who charge

exorbitantly without measurable outcomes. We know a participant who spent $17,600 on

NDIS funded cooking classes at the end of which he was still unable to switch on an

appliance without assistance. A support worker taught him to prepare a simple meal in one

hour.

With the greatest respect to parents and carers of people with disabilities, with first hand

experience of the latter role, knowing how impossibly enervating and depressing it

becomes, each parent and carer only has knowledge of what is extant for their person, not

what can be. Appended is a list of some of our clients successes since the implementation

of the NDIS. Each person has exceeded all expectations of what they might achieve and

the extent to which their enjoyment may be enriched.

Much better targeting of funding need not cost more and likely will cost less and be more

effective. The Scheme has become the metaphorical two humped horse, designed by

committee for exploitation, and derided in marketing forums.

Yours,

Stephen Heydt Adjunct Associate Professor Clinical Psychologist

Author background This submission follows fifty years of work with people with mental disabilities and

after over forty years as a mental health clinician, focused primarily on assisting those with

moderate to severe mental disabilities and others with chronic direct experience of mental

trauma. Presenting diagnoses have been of the nature of neurodevelopmental, neurodegenerative and brain injury, and psychosocial. Disabilities have included all related physical and mental functioning, to varying degrees. Clients have included First Nations and in Australia and other countries people from different cultures, languages, religions, education, socio-economic status, gender diversity, and ability across the lifespan.

Immediate family with acquired brain injury and neurodegenerative disorders, as well as

• personal physical disability have been experienced.

Working with more than 3,000 people over 40,000 individual face to face hours, conducting training and information sessions as well as personal experience has informed a view of the wants and needs of people and their families and carers, and professionals working with them. Of these over 2,000 people have had lifelong disabilities, including many who were minimally to non-verbal, with comorbid congenital or acquired intellectual impairment and challenging behaviours of concern; exhibiting physical violence towards themselves, others and property.

I am a Brisbane based clinical psychologist and the principal of a small NDIS provider that works directly with participants with high needs and challenging behaviours. Australian work has covered several States and Territories, urban and remote, while overseas work has included directing the Community Mental Health Program for three million refugees across some six countries and eighty refugee camps for the United Nations Relief and Works Agency for Palestinian Refugees and the Mine Action for Peace project with mujahedin and child soldiers in Afghanistan. As a result I have diversity of experience with disabilities as a significant program director, small clinic owner, clinician, sibling, carer, and individual.

Appendix:

A sample of experience (since 2017) in assisting the development of adults with Autism Spectrum Disorder (ASD), brain injury and most with comorbic Intellectual Disability (ID) diagnoses, with severe self and other injurious behaviours of concern, isolation, destructive and/or anti-social behaviour, and impaired academics including literacy and numeracy. The objective is to measurably improve their quality of life and meaningful community roles.

In Australia, employment of people with severe or profound disabilities is 23.9%, compared with 47.8% of people with all disabilities, and 80.3% of people without disabilities. Of the 23.9% an unknown number are employed in repetitive unfulfilling work, often through ADEs resulting in behaviours of concern in the workplace.

All of the 14 people described below have diagnoses of severe or profound disabilities, while 10 have diagnoses including intellectual disability.

Our philosophy [Pre-chorus] “….Be glad, there’s one place in the world… [Chorus] “Where everybody knows your name And they’re always glad you came You want to go where people know, people are all the same You want to go where everybody knows your name” Gary Portnoy.© Where Everybody Knows Your Name (Cheers Theme) 1989.

AG - 32 yo female. Short order breakfast cook - 20 hours a week. Hobbies: movies, long distance tricycle rides. Supported independent living.

AC - 28 yo male. Barista - 15 hours a week. Hobbies: studying medieval history at university one subject at a time. Supported independent living.

RB - 45 yo female. (Previously living rough with child). Logistics in ADF - full time supported civilian role. Hobbies: masseuse, marathon runner and gym attender. Lives independently.

GF - 28 yo male. House painter - full time (under supervision). Hobbies: fishing, heavy metal music gigs. Lives independently in shared house.

PS - 35 yo male. Skid steer loader operator at garden/landscape supplier - 25 hours a week. Hobbies: follower of all codes of football, Friday nights at pub (or footy) with workmates, playing computer games. Lives independently with his family.

ZN - 34 yo male. Bespoke craft maker of teddy bears, objets d’art, and calligraphy.

• Interests: witchcraft, caring for his mother. Lives with his mother, stepfather and two brothers.

• JN - 28 yo male. Creates ‘antique’ posters and sells them online. Lives with his mother, stepfather and two brothers.

• DM - 29 yo transgender male. Online commissioned computer graphic caricatures of people’s pets. Dog and cat owner. Lives independently.

• PJ - 33 yo male. Full time academic research tenure in mathematics at Group of Eight university. Hobbies: coding and simple game app designs, pet snakes, electric scooter. Lives independently in shared home with married colleagues. (Selectively mute).

• CB - 26 yo male. Excluded from school on basis of not coping with environment. Perceived as having a cognitive disability. School requested removal. Achieved double degree in engineering and is presently undertaking PhD. Partnered. Hobbies: magic, cooking. (Selectively mute).

• MG - 35 yo male. Child care aide - full time. Hobbies: horse riding, crafts. Lives at home with large family.

• NK - 27 yo male. ASD 3. Perceived as cognitively disabled. Discharged by psychologist and paediatric psychiatrist. Recommended for youth residential care and Guardianship. Completed undergraduate degree in environmental science and enrolled in research masters. Hobbies: bush walking, butterflies. Occasional babysitting for young sister. Socialising on bush trips. Lives independently.

• JS - 33 yo male. Welder - full time. Interests: church and church outings. Supported independent living in shared home.

• XJ - 21 yo male. Pizza maker - 20 - 25 hours a week. Hobbies: tinkering with cars, fishing and making furniture with grandfather. Lives with grandparents. Transitioning to independent living.