Submission 1930

THE PURPOSE, INTENT AND SCOPE OF THE NDIS – THE PROMISE

I am a 70-year-old nominee and former volunteer and professional advocate for people with disability. As a young mother in the 1990’s I saw the efforts of those who went before me to advocate for a rights-based approach to support. It was something almost delivered over 40 years ago, but instead the Medicare Scheme was introduced. A brilliant initiative, for universal health-care. After more than 4 decades, the promise of the NDIS was almost realized. Certainly, during the trial sites and initial roll-outs in each state, it appeared we had the mechanism for the National Disability Strategy to deliver the nation’s obligations under the UN Convention on the Rights of Persons with Disability.

However, for many years, under the Scott Morrison government, the Scheme was systematically expanded and the purpose seemed to be all things to all people, and therefore the entity the NDIA grew exponentially with requisite spending to scrutinize, manage, account and then litigate the participants and applicants.

As an advocate, I have seen both wonderful transformations, as well as terrible tragedy and torment at the hand of this very entity – the loss of life while waiting for supports, and the torment of protracted legal battles that inevitably resulted with outcomes on the side of most participants despite the huge costs in legal battles. I have seen disabled advocates pass away in this timeframe.

I am terrified of the changes that this Bill will bring. To have the Minister enabled with such sweeping powers, especially when this will be passed onto any other Minister who may oppose the Scheme in its entirety is tantamount to fascism.

THE PURPOSE OF THIS BILL

All governments will attempt to appease those ‘haves’ over the ‘have nots’ when it comes to a government Budget and spending. Unfortunately, the loud and persistent misinformation from mainstream media has divided the nation. The general public that was largely supportive of the NDIS as it rolled out, have been divided and now seem to view the Scheme as a large tax-payer burden not worth it. The false information about the scale of fraud has created a deep mistrust of disabled people and cast them and their families as bludging fraudsters. It is understood that ‘integrity leakage’ – the whitewashed language to describe the so-called rorts and overspend, is not as bad as similar issues in Medicare, Centrelink or Australian Tax Office.

It appears that the fall-guys for budget cuts will be disabled people, let down by the very government that promised to save the Scheme and return it to its former ideology.

CHOICE AND CONTROL

The right to self-management and direct employment.

This catchphrase is often bandied about as is ‘co-design’ but both are elusive and rarely supported by the NDIA itself.

Submission 1930

My daughter , and I have been directly hiring support staff since we both gave up on traditional service provision in 2010 (a full 9 years before roll-out in our area). is 37 years old and has a very significant intellectual disability. We initially hired students and stay-at-home mums who we trained ourselves and found that the workers were more loyal to her, were more attentive to her needs and wants, and my daughter’s confidence and opportunity to exercise her autonomy in her own home had elevated her in the esteem of her community.

With the NDIS rollout, we continued to hire directly but employed her support staff rather than contractors or sole traders, and over the years, we have built well-structured Policies & Procedures within a sound Human Resource Management system. We provide formal induction that includes intensive training both on-site and online, during the 8-10 week probationary period. Ongoing professional development, both in person and online are conducted regularly as are team meetings. ’s staff are much better equipped than anyone from any service provider and if they move on, are highly skilled as a result of their time working in our team. We do not get any acknowledgement or consideration for this, however we prefer that the workforce get upskilled because it is peopled by many who have entered this field with little regard for the Participants other than easy ways to make money.

      ’s team, which fluctuates far too readily, does however, comprise some very dedicated people – two of whom rise above any others. Neither of these wonderful women work for any other participants.

One support worker began as a student 14 years ago, and she now has her own counselling business. She elects to work with my daughter for a couple of shifts per week as they have a strong bond and care for each other deeply.

Another has been with us for about 6 months, and we hope that they will grow old together. She has supported to make incredible progress on her goals and I can foresee that in a couple of years, she will have made friends (her biggest goal), run her microbusiness and develop her personal interest areas to a level of having a larger retinue of skills and interests and social circles.

Any push towards forcing us to use registered or indeed any direct support service providers will strip away all the gains my daughter has made and will be the biggest source of anxiety and sorrow to our family in all her years.

Auto-mated Decisions and Algorithms with no right of appeal

What country are we living in? How does this align with empowerment and equity for disabled people whose voice has been left out of any conversations about this Bill. I know (as do many other participants and family members) that the voice of large service providers has taken the ear of government.

The notion of these kinds of treatments are synonymous with RoboDebt and are directly contradictory to the election promises of this government – to SAVEOURNDIS. Instead it is set on the same path as their predecessors with a vengeance to destroy this Scheme.

Submission 1930

As an advocate for the Human Rights Act in Queensland and for a national Human Rights Bill, I am ashamed of our country right now. It appears that only the rich and powerful, the mighty and loud get anywhere currently. It begs the question of the values of our elected peers who seem to have little to no regard for vulnerable people – disabled people who, with support and the ‘affirmative action’ that the NDIS should enable, are employers, contributors, consumers, employees and volunteers, sportspeople, participants.

REGISTRATION

Support Needs

     lives in private rental and has done so for the past 14 years. She lives alone currently in a house that suits her needs to have a garden and a large backyard that is private, in a quite location away from busy streets. She likes to play soccer, cricket and backyard totem tennis in her yard whenever she wants…sometimes this is only for short periods of time but may be several times a day as transition between household tasks or returning home.

She is very active and goes to the gym 5 days per week and horse rides weekly. pays for these activities herself but is supported by a worker to do so.

Her disability Is compounded by absence seizures (epilepsy) that has intensified over the years, which can affect her sleep and her ability to focus, and can provoke pain, extreme irritation and agitation and therefore affect her behaviour.

Behaviour Support is provided by a registered practitioner, who is very collaborative, provides home visits and training sessions to staff both individually and as a whole team.

Speech Pathology is provided by a registered practitioner, who works with my daughter and at least two members of the team to assist my daughter with her language and practical conversation skills to enhance her social and communication skills.

Exercise Physiology is provided by a registered practitioner as my daughter has some physical issues pertaining to scoliosis, and pronated feet, which, despite customized orthotics, affect her balance, mobility, coordination, strength and pain to her knees and hips.

My daughter’s personal care support needs are extremely light touch. She can manage most things herself but needs supervision and verbal support mostly, with occasional assistance in cleaning up in the toilet after bowel motions.

It is unreasonable to require my daughter’s support workers to become registered considering the information provided above.

I also believe that as self-manager, I am highly attuned to higher standards of support, care and outcomes than any direct support service provider. I provide excellent value for money given the free hours per week that I devote to my daughter’s team and the support model, and scrutinize the purpose and value for where every dollar is spent.

Submission 1930

Is it reasonable to expect that I be registered? As mentioned, I am now 70 and looking towards my succession, with another family member to step into my role in a much lighter capacity, as I train a team leader to take on more management responsibilities.

FUNDING AND CUTS

The issue of contractors vs employees is a problem that was never addressed by the NDIA at the outset. The NDIA ‘let the market rip’ with support workers (often with no or very little experience with anything to do with disability let alone as providers. These contractors and sole traders have price-gouged participants for years, using the Price Guide to charge across the board regardless of the type or level of support or responsibilities involved.

Yet many people with disabilities are forced into hiring contractors because the support workers refuse to be hired as employees. The Fair Work Commission and the Australian Taxation Office “Closing Loopholes” has been a wake-up call for many participants, but not so for the support workers! The NDIA MUST make it clear about the types of supports that can be delivered under a contract and those that must be an employment arrangement, rather than merely relying on participants and nominees to decipher the meaning from the FWC and ATO.

Alternatively, the NDIA, the ATO and FWC make an exemption to enable all participants to hire contractors.

In October 2023, I submitted a Change of Circumstances Request application. I did this because ’s father experienced some serious health issues and required hospitalization for some time. As he lives closest to , he is often required to fill in when support staff are unavailable for various reasons (illness, car trouble, family emergencies, pet care etc).

We had applied for more funding so that instead of fortnightly weekends and several holiday times with family, we budgeted and requested an increase of funds so that staffing could be applied for weekends with the exception of monthly weekends and two weeks at Christmas.

This request did not appear to be given any consideration as the plan was renewed with little change. Recently the only change has been the loss of Assistive Technology (for which we usually purchase customized orthotics). The need for further support was deemed that we should pay support staff less because we self-manage! The workforce in our area is woefully thin, and certainly under skilled to work with my daughter, which is why we invest heavily in training. We only manage to scrape by in the Plan because of staff shortages.

Given the Plan is self-managed and that we hire employees directly (with super, PAYG etc), the claims are made for entire payroll and not divided into categories for Daily Living or Social and Community Participation. Payroll is merely claimed from the Daily Living category, or if a payrun is significantly reduced due to staff reduction.

If Social and Community Participation is cut by 50%, ’s Plan which is already underfunded will be slashed even further, and her aged parents will have to continue to fill

Submission 1930

the gap. ’s parents would like to take a holiday, but funding cuts to the Plan would consign us to providing unpaid support until we die.

Reasonable and Necessary for :

My daughter flourished into adulthood when she first moved into her own private rental, directed her own staff and commenced her life with autonomy, confidence and a sense of purpose unlike ever before in her experiences. She enjoys living in a house that is spacious for her furniture and sporting equipment, her musical instruments, and the musical recording gear that she is just now learning to use.

Her home is not typical of social or public housing, as she has, in 16 years on the waitlist, never been offered anything suitable. She needs a large yard, a quite street, and distance from neighbours and busy roads – most disability housing is high density, on main roads and close to public transport and shops.

   needs her support workers to drive her everywhere. She cannot catch public transport

unassisted, and walking to most bus stops is often too far.

   has enjoyed living with a housemate (found on Flatmates.com.au) from time to time, and

this takes significant effort and screening to find a good match. She does not enjoy the company of other disabled people. was raised with her elder sister and her friends, boyfriends and social circles and has always gravitated to other young non-disabled members of social groups.

Her experiences with traditional group support activities was immensely unsuccessful – was only interested in the support workers, and at times, there were conflicts between her and other participants within the group, that required them to be separated or sent home. The history of being isolated in classrooms with a teacher-aide during school years is the source of her desire for 1:1 relationships. This followed into the post-school life with the day service, which we found very unsatisfactory despite it being one of the better services in the area.

  moved to 1:1 support so she could pursue her own interests, and activities. She

volunteered at that service for several years, twice weekly, performing office tasks independently. We requested that the service staff provide incidental support or guidance from their own staff with whom she worked, for even 1 of those days, so that she could use some of the support hours for social activities. However, they refused and they refused to pay her. Following that, we began hiring directly.

The right to choose where, how and with whom we live.

This is a fundamental human right, yet the Bill is proposing fiscal cuts that will inevitably force people into shared care and living arrangements – the very issue that the NDIS was formed to redress!

Any pressure to force to share living or care arrangements with any other participants will create highly stressful conflicts that would escalate and lead to potentially violent situations or the

Submission 1930

My Recommendations:

Fraud and Abuse:

• I support the need for the Quality & Safeguards Commission to pursue and prosecute all and any abusers of the Scheme, particularly direct support service providers who enable or cause abuse, neglect and harm. I recommend that jail sentences be harsher, and financial penalties and banning orders be made public in mainstream media.
• Participants who have knowingly entered the Scheme through fraudulent means should be dealt with as any who may rort Medicare, Australian Taxation or Centrelink – it appears that the media account of participant fraud has been hugely overstated.
• Participants and or family members who have claimed for items mistakenly should be given the same leeway as proposed earlier with the introduction of the excluded lists. If the NDIA was doing its job, it would contact those individuals and explain why their claims were rejected. At no time, should it be delayed, nor should Participants and their families be left with a large debt. NDIA should facilitate ways for money to be recouped from the Plan in affordable increments where required.

CHOICE AND CONTROL HOME AND LIVING

• I do not support any measures that would change the quality of life my daughter currently enjoys. This includes Plan funding cuts that essentially force her into shared living or shared care – the results would be disastrous, and she could be forced into situations that result in engagement with criminal justice system. I have seen the results of indefinite and repetitive treatments on disabled people for minimal infringements which have led to a lifetime of abuse and torture.

REGISTRATION Self-Management – Direct Employers

• I do not support that any registration be required of self-managers or direct employers. As outlined above, self-managers and direct employers provide a huge service to the workforce and to the NDIA with no specific funding or even allowances for the work we do. Instead, it might be worthwhile to ask if there is anything the NDIA can do for us!

SIL and any congregated living

• I support the mandatory registration of Supported Independent Living (SIL) where the providers are direct support or accommodation services. From my advocacy against congregated care such as boarding houses, hostels and group homes, that they were not made to be registered to enter the Scheme is a huge oversight.
• I do not support the imposition of registration on Participants and nominees who direct their own supports and services and operate within the SIL context.

Personal Care

• Personal care is a broad term, and where a person has high and complex support needs in some areas does not necessarily equate to high and complex personal care.
• I do not support the requirement for ’s support workers or for me to be registered for this function.

Submission 1930

PLAN FUNDING CUTS

 1.  As outlined above I do not support cuts to Social and Community Participation for anyone! The
  mere suggestion that disabled people not be supported to be part of community, to engage in
      life is horrifying.  I do see the needs to reign in the providers for ‘experiences’.  If disabled
   people are to be part of community, then ‘special’ segregated events and group activities which
   are seen as dollar savers for the Scheme are often groups that charge individually and quite
    hefty fees. However, there are many people who cannot engage in inclusive gyms, swim
   lessons, riding lessons or other activities often or usually provided to a group.
   Private lessons for such activities should be funded for the difference in price for a
   private lesson over that of a group lesson.
  There is a plethora of ‘so-called’ inclusive spaces that provide activities primarily to disabled
   people. This is an oxymoron.  If a disabled person can participate in an activity with a group of
   other people with disabilities, then clearly it is more a matter of feeling accepted and belonging.
 Why is this not how people feel in their local general groups?
  Any cuts for Social and Community Participation will leave many people isolated and therefore
   not engaging in their local avenues. This furthers the divide and works contrary to the
 UNCRPD and our own National Disability Strategy.
2.   I recommend that there be NO cuts for this funding category for anyone.
3.  Instead, the NDIS should scrutinize the activities of these so-called inclusive but segregated
  groups and ask them what they can do to open their doors to non-disabled members, and
  model inclusive practices. These providers must welcome the non-disabled community.

COSTS OF SUPPORT

When the NDIA let the market rip and did nothing to curtail the costs of supports by independent support workers operating as contractors, there was not outcry for this to be monitored or controlled. The price guide should have been purely for direct support service providers.

 1.    I recommend that the fees by independents be based on the SCHADS award, with the 12%
   superannuation included, and either a fee for travel OR they claim on their tax.
2. The Fair Work Commission and the Australian Taxation Office “Closing
   Loopholes” has been a wake-up call for many participants, but not so for the
   support workers! The NDIA MUST make it clear about the types of supports that
  can be delivered under a contract and those that must be an employment
   arrangement, rather than merely relying on participants and nominees to
   decipher the meaning from the FWC and ATO.
3.  Alternatively, the NDIA, the ATO and FWC make an exemption to enable all
    participants to hire contractors.

POWERS TO THE MINISTER, AUTOMATED DECISIONS AND ALGORITHMS

 1.    I recommend that the Senate Standing Committee reject Bill in its entirety as it applies to this
    autocratic disempowerment.
2.   I recommend that there be a complaint made to the UNCRPD.