Submission 4229 — Ms Helen Said — NDIS Future Generations Bill | External submission

(Securing the NDIS for future

Submitted by Helen Said, Melbourne

[please use my name but redact my phone number and email address: ]

Introduction

I am making this submission as a person with a disability, a parent of an NDIS client and as a professional and volunteer working in the field.

MY LIVED EXPERIENCE

I am a late diagnosed Autistic, a migrant and a single parent
I am the mother of an Autistic adult who went through early intervention, and currently receives NDIS services, and I assist in applying for those services

MY PROFESSIONAL EXPERIENCE

Member of La Trobe University’s Childhood Autism Phenotype Team and have co-authored several research papers concerning the needs of CALD families with Autistic children, (links on page 11 of this submission)
Previously worked as a school integration aide, private tutor to disabled students, community support worker and public transport disability services officer

MY VOLUNTEER EXPERIENCE

Member of the Autistic Self Advocacy Network’s Advocacy Advisory Group
Convener, Victorian Labor’s Multicultural Ageing and Disability Policy Subcommittee
Co-founder, Neurodivergent Labor
Co-facilitator, Neurokindred’s Multicultural Autistics’ Discussion group
Guest speaker, Reframing Autism and Neurokindred conferences
Graduate, Reframing Autism’s inaugural Autistic Welfare course In this submission, I will make recommendations and elaborate on my main concerns with this Amendment:
A) the inherently undemocratic nature of rushed NDIS public consultation timelines
B) Subsection 25B(4) opens the door to withdrawing NDIS services to disabled immigrant non-citizens, former prisoners and other disadvantaged minorities
C) the potential of Sections 40A, 30(1A), 45(B), and 182(4) to harass and penalise neurodivergent individuals with unstable housing and executive functioning deficits
D) Changes to Section 34(1)(aa) which ignore the cumulative and compounding effective of multiple or inter-related disabilities, where these don’t individually meet NDIS access criteria
E) Cuts to Social & Community Participation funding by 50%, to Capacity Building funding by 10% - these cuts will impact quality of life, emotional wellbeing and job readiness of NDIS clients
F) Subsections 34(1G)-(1H), the ‘presumption’ that parents are responsible for providing substantial care and support for kids, including supervision, personal care, transport, emotional support and behavioural support - this downplays the additional pressures and responsibilities of parenting medically fragile, disabled or neurodivergent children, and pushes women back into the home
G) Current government arrangements are based on the outdated Medical Model of Disability, with insufficient disability representation at all levels of decision-making

My recommendations at a glance:

Extend the deadline of this NDIS Amendment submission process by a further month to allow more lived experience engagement and feedback
Allow 50% more time for all government disability related submission processes (relative to comparable non-disability related submission processes), in recognition of the increased time needed for disabled people and their family members and carers to plough through government documents and contribute their lived experience
Allow every disabled person to access NDIS supports, for which they would ordinarily be eligible, without excluding certain groups or persons
The NDIS must ascertain participants’ communication preferences at the time of assessing their needs and eligibility for services
All NDIS communications must be made in accordance with the recorded preferences of clients
The government should not have the power to revoke an NDIS plan because of miscommunication or lack of participant response
The NDIS should keep its own records of receipts and payments and not burden disabled people with unnecessary or intimidating paperwork
Under no circumstances should an NDIS recipient owe a debt to the NDIA, except where clients are found guilty of deliberate fraud.
Maintain the ‘whole of person’ approach to funding supports
Publicly explain and defend NDIS expenditure as an investment in Australia and its people, any of whom could become disabled at any time
Postpone the cuts to NDIS Social and Community Participation and Capacity Building activities in order to conduct an in-depth review, to determine their success in improving life outcomes for disabled people and their value for money in terms of reducing government expenditure further down the line.
Recognise that the care and support of disabled children is a team effort involving parents, schools, professionals and disability support provision. Support parents to support their children
Protect women’s right to work and superannuation regardless of the disability status of their children
Fully implement DRC recommendation 5.6, which includes creating a Department of Disability Equality and Inclusion with disabled employees
Make Disability Action Plans mandatory for all registered political parties, with reporting requirements on DAP implementation

A) Rushed NDIS consultations are inherently undemocratic The universally held principle of the disability rights movement is “Nothing about us without us.” If the government is serious about consulting the disability community, all public consultation processes must take into consideration disabled people’s access needs. Many disabled people require support worker assistance to formulate or transcribe their ideas or needs into a submission. Others experience health issues, burn-out or episodic disability. This means that many disabled people need more time to produce submissions to governments, based on their lived experience. Their input is essential in enabling them to access the goods and services that give them the basic dignity and autonomy that the rest of society takes for granted.

Similarly with parent-carers or other family members – the workload of caring for disabled family members, as well as earning a living and running their households, leaves carers with very little spare time to write submissions based on their own firsthand knowledge. Giving disabled people and their carers a reasonable amount of time to read proposed government legislation and formulate a response is crucial for eliciting the lived experience voice and getting things right for disabled people and their families.

The public has not had enough time, either in this consultation process or in the “Thriving Kids” consultations, to formulate and send in their points of view, and are being over-ridden by “experts”. This rushed process promotes a perception that the disabled community viewpoint isn’t valued, that disability needs are a burden and disabled people should be grateful for what they’ve got, that “experts” know better than people with lived experience, that the NDIS is a drain on the economy that is best contained and managed by “experts”.

My recommendations:

Extend the deadline of this NDIS Amendment submission process by a further month to allow more lived experience engagement and feedback
Allow 50% more time for all government disability related submission processes (relative to comparable non-disability related submission processes), in recognition of the increased time needed for disabled people and their family members and carers to plough through government documents and contribute their lived experience

B) Ministerial power to exclude groups can lead to discrimination I refer to Subsection 25B(4), which allows the Minister, with State and Territory agreement, to make Rules to exclude other groups or people who receive certain supports. While we might expect the current government to continue allowing immigrant non-citizens, or non-permanent residents, to access the NDIS, the same could not be said of any future Liberal-National Coalition government, a future One Nation government or a minority government which is wedged by an ascendant Far Right opposition or cross bench.

Already, Federal Opposition Leader Angus Taylor has declared his intention to deny non-citizens 17 items of welfare, which includes the NDIS, if the Coalition forms government in 2028. This draconian policy appears to be an attempt to upstage the ascendant One Nation, which routinely scapegoats migrants for economic and social problems.

Denying services to non-citizens would particularly impact the Chinese-Australian community, as the Chinese government does not allow its citizens to become dual citizens. Immigrants from China, who wish to maintain travel, inheritance or other citizenship rights in their home country, are therefore unable to take up Australian Citizenship. Should they become disabled, Permanent Residents who maintain Chinese Citizenship could become entirely dependent upon their Australian Citizen family members to care for them.

Subsection 25B(4), could be implemented in ways which get around the Disability Discrimination Act eg by defining categories of visa holders who are ineligible for certain supports, or by carving out exceptions to anti-discrimination laws for certain age groups, disability groups, former prisoners, or any of Pauline Hanson’s targets (in which case, former prisoners might be in the clear…)

Denial of NDIS services, as proposed by the Federal Coalition Leader and suggested by Subsection 25B(4), could force disabled people from numerous CALD communities to depend on families for disability support. Total dependency means

family members unable to pursue studies or work to establish themselves in Australia if they must stay home to care for disabled relatives
Australia misses out on the skills of migrants who have to leave the workforce and care for relatives, the very skills that Australia sought in allowing them to migrate here in the first place
Without disability support from outside the home, there would be virtually no avenue for disabled immigrants, who can’t understand the system or travel independently, to raise the alarm if they experience domestic abuse (the levels of abuse experienced by disabled people being notoriously very high)
second class care for disabled immigrants, trapped by traditional attitudes eg being patronised or hidden away, being totally reliant upon untrained family members and unable to access NDIS independence skills training or job training
Of particular concern is the impact on women’s unpaid workload and earning capacity when the family is considered primarily responsible for managing disability related needs.

My recommendation:

Allow every disabled person to access NDIS supports, for which they would ordinarily be eligible, without excluding certain groups or persons

C) Powers to revoke plans, demand receipts and impose debts penalise homeless, multiply disabled and neurodivergent participants Under Section 40A, the NDIA will suspend a participant’s plan where they are trying to get information from a participant, and the participant is not contactable. The NDIA would be required to make ‘reasonable attempts’ to contact the participant, and if they are unable to contact them after 90 days, the NDIA can suspend the plan. The Explanatory Memorandum suggests that reasonable attempts might include letters, but the Bill does not require the contact attempts be accessible.

I have firsthand experience of inaccessible communication. At the time that the NDIS began contacting participants about upcoming changes, just over a year ago, I was tutoring an intellectually disabled, totally blind NDIS participant from an immigrant family in basic numeracy and grade 1 braille. The NDIS letter arrived at her house, the parents opened the letter, threw out the envelope and handed the letter to me, thinking it was in braille and English, so I must be able to read it. As I had only learned the basics in braille, I was able to make out that it was from the NDIS, but not much more. Eventually my daughter, who was also an NDIS participant, received a print version of the letter, which I took to their house, read to them, and explained in plain English.

Obviously, the NDIS went to the trouble of producing a braille letter for blind recipients. What did the NDIS do wrongly in their attempts to be notify blind clients of upcoming changes?

The NDIS failed to consider the compounding effects of intellectual disability, total blindness and non-English speaking family background
The NDIS was unaware that not all blind people read braille. Some prefer voice technology only, and either opt not to learn braille or give up braille. Some have other dexterity related disability which prevents them from reading braille with their fingertips and, in the case of my student, some have multiple disabilities which cause the school, government or Vision Australia to (wrongly) consider it impractical to give a totally blind student the gift of literacy

• The NDIS failed to consider that some blind people are accustomed to having their

correspondence read to them by a sighted support worker, or have a support worker act upon their correspondence in some way, and made no attempt to find out whether their blind recipients preferred print, large print, braille or audio format. A simple solution would have been to include large print and regular sized print along with the braille correspondence

There are a myriad of communication requirements and preferences of people with other disabilities and intersectional issues eg Deaf and hearing impaired, blind-deaf, intellectual disability, non-speaking and socially anxious Autistics, non-English speaking, war trauma combined with both English and community language illiteracy as well as the digital divide. While endlessly questioning disabled applicants about their eligibility for services, it seems the NDIS does not try to find out, or act upon, its clients’ accessible communication requirements, preferring instead to police them over their inability to understand or respond to its own preferred methods of communication. This demonstrates the need for disability representation in government and its departments, with sufficient time and avenues for disabled people to make their needs known to government agencies.

Under Section 30(1A), if participant is not contactable for 90 days after the plan has been suspended, the NDIA would be able to revoke their NDIS access. This power to revoke an NDIS plan indirectly discriminates against disabled people who are disproportionately homeless or move house frequently because they are unemployed, precariously employed, or have behavioural or psychological issues stemming from their disability, or arising from social disadvantage associated with their disability.

Even more ominous is the proposition of NDIS Robodebt posed by Section 45(B). This Section requires people to keep records and evidence about claims: 3 years for participants, 5 years for nominees and 7 years for providers The kinds of records that will need to be kept will be set out in Rules not yet

made. If a claim is paid and a person does not keep the required record, they will automatically owe a debt to the NDIA. There are no exemptions or defences (Section 182(4)).

This brings to mind the time when I was newly separated, fighting for child custody and my share of the family home, dealing with Centrelink, house moves, menopause, undiagnosed Autism, school refusal, a death in the family and pursuing an intervention order. When I asked my lawyer to re-send some documents, I copped a lecture from his admin officer who said, “You were told to keep your documents in a safe place.” I was lucky to be able to keep myself in a safe place. I was thoroughly bureaucracy fatigued. I was new to Centrelink benefits and, as a conscientious undiagnosed Autistic, I had no idea that I didn’t need to read the two pages of threats, that accompanied my Centrelink statements, every fortnight.

I believe the burden of proving and re-proving disability and coping with NDIS changes, as well as the disadvantages and discriminations inherent in having serious or visible disabilities, could make it very difficult for some disabled people to keep their documents in a safe place. Under these Sections, blameless people will have the finger pointed at them and accumulate unfathomable amounts of NDIS Robodebt, inevitably leading to further poverty and even suicides.

Autistics with PDA may feel the need to self-manage their NDIS plan but may lack the executive functioning to furnish such receipts – why are the receipts needed when the evidence of the services was already submitted to make the claims in the first place?

The high rate of homelessness of disabled people and the episodic nature of mental illness means that addresses may inadvertently not be updated. The inaccessible and potentially intimidating contact of

these  bureaucracies may be  difficult  to  deal  with, and does not  take  into  consideration

neurodivergence and other conditions which make it difficult for people to comply and respond.

My recommendations:

The NDIS must ascertain participants’ communication preferences at the time of assessing their needs and eligibility for services
All communications from the NDIS must be made in accordance with the recorded preferences of clients

• The government should not have the power to revoke an NDIS plan because of

miscommunication or lack of participant response

The NDIS should keep its own records of receipts and payments and not burden disabled people with unnecessary or intimidating paperwork
Under no circumstances should an NDIS recipient owe a debt to the NDIA, except where clients are found guilty of deliberate fraud.

D) Undoing ‘whole of person’ approach disadvantages people with multiple and inter-related disabilities The Bill undoes the ‘whole of person’ approach to funding supports (from the 2024 amendments to the NDIS Act (Section 34(1)(aa). The 2024 changes enabled a support to be funded if it relates to a need ‘arising from’ an impairment that meets NDIS access requirements. The change means that the NDIA would only fund supports needed directly because of an impairment that meets the access criteria.

This is likely to impact people with multiple and interrelated disabilities. Many years ago, as a former integration aide, I witnessed this blunt instrument application of formal needs assessments of my students. For example, an Australian-born student, growing up in a non-English speaking household, with a mild hearing impairment, and possible mild intellectual disability, didn’t meet the Education Department’s funding criteria for EAL language support, deafness or intellectual disability and was awarded no funding. They were told to sit with the integration aides who were assisting other students. Another student, who was Autistic, with literacy and behavioural issues, including a tendency to run away, was awarded no funding because they had a high IQ and had educated themself to an impressive level through various non-print media. This student also didn’t qualify for funding because they had a “learning disability” not an “intellectual disability”, even though they had a safety risk.

Autistics often have multiple and inter-related disabilities which cause compounded difficulties and disadvantages. This is the case with an Autistic (who prefers not to be identified) who has low needs Autism, low muscle tone, motor planning issues and is quite small. While their muscle tone and co ordination may or may not meet formal disability criteria, combined with their motor planning difficulties and small size they are significantly disadvantaged in performing physical tasks and maintaining fitness. After being kicked off therapies, under the old system, at the age of 6, they have finally started benefitting from NDIS exercise physiology and occupational therapy, which is helping them perform practical tasks and achieve independent living arrangements. Under the proposed changes, they are likely to lose some or all of these NDIS services. This would render them less likely to achieve the level of skill, practical organisation and physical strength required to maintain their own home, juggle full time work and household responsibilities, care for a family of their own or help support their ageing relatives.

Someone needs to tell the Disability Minister that a stitch in time saves nine. Therapies to support increasing capacity and wellbeing is money well spent, that can reduce reliance on services long term and transform many welfare recipients into taxpayers. NDIS services are an investment in the people of Australia, any of whom could become disabled at any time. Lack of nuance in application of formal needs assessments will have far reaching implications for Autistics with co-occurring conditions and other multiply disabled people.

My recommendations:

Maintain the ‘whole of person’ approach to funding supports
Publicly explain and defend NDIS expenditure as an investment in Australia and its people, any of whom could become disabled at any time

E) Cuts to Social & Community Participation and Capacity Building will harm disabled people and increase expenditure further down the line The Minister has announced that the Government intends to cut Social and Community Participation funding by 50%, and cut Capacity Building funding by 10%. This is the direct result of Social and Community participation being scandalised in the media and by Far Right spokespeople – disabled people have been depicted as being given haircuts and outings by the NDIS, when in fact they have been given support workers who enable them to access haircuts or outings on the same basis as everybody else. The government needs to stand up to these misrepresentations instead of capitulating to them and cutting this expenditure. Social and community participation reduce reliance on psychological support, improve wellbeing and assist in job readiness - money well spent!

It is abhorrent that allowing disabled people to shop, exercise or access recreation on the same basis or at the same rate as everybody else is questioned and scandalised. It is not the duty of disabled people to stay out of sight out of mind in the community; rather, it is the duty of the government to make disabled people more visible and accepted in the life of the community. Disabled people don’t need to feel grateful for being allowed to exist and demand nothing more…. Which century are we living in?

Cutting community participation and capacity building will cause social isolation and result in many disabled people experiencing physical, mental and emotional deterioration, which will exacerbate their disabilities. Lack of community participation services will infantilise many disabled adults by making them more reliant upon ageing parents for outings and assistance instead of moving through the world in a more age-appropriate way, using support workers who share their interests and with whom they can build peer bonds. Again, a blunt instrument approach to disabled people’s needs seems to be behind this announcement, along with a lack of belief in the value of building the capacity of disabled people.

My recommendations:

Postpone the cuts to NDIS Social and Community Participation and Capacity Building activities in order to conduct an in-depth review, to determine their success in improving life outcomes for disabled people and their value for money in terms of reducing government expenditure further down the line.

F) The ‘presumption’ that parents provide substantial care will deprive disabled kids of qualified support and drive women out of the workforce

Subsections 34(1G)-(1H) would require the NDIA to consider the ‘presumption’ that parents are responsible for providing substantial care and support for kids, including supervision, personal care, transport, emotional support and behavioural support.

This presumption is at odds with what we know about children with challenging behaviours and high needs Autism, where parents need to learn to identify and control sensory triggers, manage meltdowns or seizures, work constructively with PDA attributes, implement speech pathology and other therapists’ learning plans, interpret their children’s non-verbal communication and engage children in social interaction and turn taking. I have become more aware of the needs of parents with higher needs Autistic children, with speech and intellectual delay, through my current involvement in an Autistic Advisory Group, which is reviewing La Trobe University’s learning material for Speech Pathology students.

This NDIA ‘presumption’ gaslights the parents of Autistic kids and kids with challenging behaviours. These parents need extra support to understand and respond to their children’s issues and have many extra responsibilities to manage children’s therapies, behaviours, emotional triggers and medical issues. Children’s quality of care will suffer if parents receive less guidance or resources in meeting their child’s needs.

Not every family can afford the transport costs of children who have physical or social difficulties accessing public transport or who cannot easily transfer in and out of a family car. The NDIA ‘presumption’ will shift more and more expenses, behaviour management and strenuous physical assistance onto already over-stressed families.

Of particular concern is the impact on women’s unpaid workload and earning capacity when the family is considered primarily responsible for managing disability related needs. Through these cynical

attempts  to  shift  disability  care back onto  families, women  will  lose income, work  skills,

superannuation and work-life balance. Families may lose their homes if a parent needs to quit work to manage the additional needs of a disabled child.

Rightly or wrongly, the media links two recent family murder cases, involving the killing of Autistic children, with cuts to NDIS services. Regardless of the truth or otherwise of these claims, it takes a village to raise a child, especially a disabled child. Let’s be that village instead of off-loading social responsibilities onto highly stressed families. Let’s be the village that has a place for women in the workforce and a place for disabled people in society.

My recommendations:

Recognise that the care and support of disabled children is a team effort involving parents, schools, professionals and disability support provision. Support parents to support their children
Protect women’s right to work and superannuation regardless of the disability status of their children

G) Government arrangements based on outdated Medical Model of Disability, with insufficient disability representation at all levels In forming its current portfolios, the Albanese Labor government coupled Disability with the Health portfolios and placed these under the same government minister, purportedly to give Disability more priority. This move ignored recommendations from both the Disability Royal Commission (5.6) and the Disability Discrimination Commissioner, to create a Department for Disability Equality and Inclusion, employing disabled staff.

Pairing Disability with the Health Department feeds into the outdated Medical Model of Disability and undermines the adoption of a more contemporary Social Model of Disability, a model which prioritises removing physical, attitudinal and economic barriers to disability equity and inclusion.

This matters in the context of the current discourse around NDIS funding levels and criteria. The false One Nation / media claims, painting disabled NDIS clients in the same light as “dole bludgers”, eg the NDIS supposedly funding outings and hair-cuts, has received insufficient push-back from the federal government. The government does not have a dedicated Minister for Disability Equality and Inclusion; the only government MP with disability is the newly elected Ali France who does not hold ministerial responsibility. The only other disabled MP is Senator Jordon Steele-John who, while being vocal on the issue of NDIS funding, is not part of the ruling Labor government.

This reluctance by the government, to push back against the Far Right’s misrepresentation of NDIS services, and vilification of disabled people, has led to what is now known as “the NDIS losing its social license.” There was a time when 80% of the population agreed that the government should spend enough money to allow disabled people to have the same rights as everybody else. While we might have expected current economic circumstances to put a dent in that picture, the magnitude of the shift in public opinion can be partly attributed to the lack of disability representation within government and the lack of ministerial arrangements prioritising disability equity and inclusion. Without adequate disability inclusion and leadership, disabled people will continue to be a soft target for cutbacks, and successive governments will continue to raise NDIS eligibility criteria, while cutting services.

There is insufficient will, at many levels of the ruling Australian Labor Party, to improve this picture any time soon. While adding ableism to its Values Statement, and priding itself on being the first Australian political party to adopt a Disability Action Plan, Victorian Labor has yet to implement this Plan. All Victorian Labor DAP goals are several years overdue. While it is Victorian Labor’s policy, adopted at a previous State Conference, to support Affirmative Action for disabled election candidates, this has never been implemented. Under party rules, Labor Enabled Victoria, a rank-and-file disability sub branch, has five elected executive members, as opposed to Victorian Multicultural Labor, which has nine. While LEV has less members than VML, no allowance has been made for the fact that most LEV executive members are disabled and need additional support. This matters. Only full inclusion for disabled political aspirants, and AA for disabled candidates, will overcome the lack of disability representation in parliament and ultimately improve public perceptions of disabled people. Diversity in government leads to better government decisions. Only a governing party which prioritises disability inclusion and representation, at all levels, can properly cater to the needs of disabled people and advance their rights and living standards.

My recommendations:

Fully implement DRC recommendation 5.6, which includes creating a Department of Disability Equality and Inclusion with disabled employees
Make Disability Action Plans mandatory for all registered political parties, with reporting requirements on DAP implementation

These are the published research papers I have contributed to so far. They all involve the needs of CALD families with Autistic children. I have been told by two senior Autism researchers that there has never been any research done, in Australia, into the needs or diagnosis of CALD Autistic adults, despite this being a priority cohort of the National Autism Strategy, and I continue my crusade to change this status quo.

I am a member of La Trobe Uni Autism research advisory groups and have been acknowledged as a co-author of their published research:

Chinese families Autism research: https://www.sciencedirect.com/science/article/pii/S1750946723001277

South Asian families Autism research: https://www.sciencedirect.com/science/article/pii/S1750946724000837

Early intervention https://www.sciencedirect.com/science/article/pii/S3050656525001270

CALD Autism education research (Positive Partnerships and Macquarie University Advisory group member): extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.positivepartnerships.com.au/uploads/ MACQ-60532-Culture-Connection_FINAL.pdf