01 June 2026

Senate Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

I wish to make a Submission to the Senate Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 (Inquiry) on behalf of my daughter ( ), an NDIS participant. This Submission outlines the impact changes made to ’s funding this month will affect my daughter and should be read as an example of what already happens when support needs are cut.

Further cuts will exacerbate the issues outlined below, for and for others similarly affected.

Personal background

My name is . My daughter is a 34-year-old young woman who has Down syndrome.

Case study

      lives independently five days a week with her friend, ‘       ’, who also has Down

syndrome, in a small house in suburban Western Australia, and currently spends two nights a week with her parents. She has accessed NDIS support for a number of years. She has recently had her NDIS plan reviewed. We requested that her plan be rolled over, but in fact she has had her supports cut by one-third. This is of course before any proposed generic cuts are introduced.

      is about 148 cm tall (she is very small and looks about 12); has fine motor skills

issues and is visually impaired because of congenital cataracts. She is literate, can use a mobile to text and communicate, has fluent speech with an occasional stammer, wears glasses and is visually functional but her vision and balance are compromised. She was born with a congenital heart defect repaired at birth, but consequently has a leaky heart valve which will need to be replaced. Her cardiologist has stressed the vital need for regular and challenging exercise, both to help postpone but also to prepare physically for the inevitable surgery.

      lives independently of her parents, with no live-in support.

She works in open employment for 14 hours a week, volunteers for a further four hours a week, and participates in gym, swimming, ten pin bowling, and competes in ball room dancing. All these activities are opportunities for her to meet with friends, form social connections with colleagues and engage with and be visible in her local community. She also has season memberships of NBL basketball and AFL football teams. All of these activities are funded independently, from her own income or by her parents.

She also participates in a cultural arts program, Disability in the Arts, Disadvantage in the Arts, Australia (DADAA), funded via NDIS, which she attends for three hours a week, where she has made video programs based on cooking, and is currently producing interview-based podcasts for Radio DADAA.

At her recent NDIS assessment, the decision-maker was not present but the decision-maker’s representative reported to us that the decision-maker had already described , prior to our meeting, as ‘capable and confident’. The decision maker, who did not speak to us or , appears to have cut ’s funding on the basis of ’s achievements.

Without underplaying ’s achievements, of which as a parent I am incredibly proud, I consider this a serious misrepresentation, based on a failure to recognise the huge role that structured support plays in ’s rich life. has achieved remarkable things but only with support: from parents; DADAA staff, work colleagues, and support workers. Remove the supports and the edifice crumbles.

   works three mornings a week at a local supermarket; and a further two mornings a week at a University child care centre. She also volunteers there a further four hours a week.

As well as employment, this is a source of community engagement for enabling her to interact with colleagues (including participating in out-of-work activities), clients and parents of children, and the general public. Both her employers choose to pay her a full hourly award wage for her work, and consequently, her disability support pension (DSP) is reduced significantly, as is appropriate. Were she working in Supported Employment in a Disability Enterprise, she would earn a pittance and her DSP would be paid at the full rate.

       is supported by her colleagues in the child care assistant role, and by an external disability employment supporter (not funded by NDIS) at the supermarket, who visits her perhaps 30 minutes per fortnight. However, her employment is also supported significantly by her parents, in terms of problem solving in the workplace, liaising regarding leave and health, and over-arching support regarding behavioral issues which occur relatively frequently.

       is currently working with a counselor regarding behavioral issues which impact significant on her workplace and community integration and acceptance. Funding for this has been provided via NDIS.

Role of support workers under previous NDIS package Daily living activities

       is largely independent in activities of daily living. She and her housemate      share household tasks: cooking, cleaning, garden tidying etc. However for higher level activities, such as food prep with knives especially chopping hard vegetable, managing timetables or finances, monitoring health, hygiene and safely, and some aspects of personal care such as clothing suitability, computing and telephone issues, or most things related to fine motor skills, she needs ongoing support, itemised below. Her parents play a role in monitoring finances, paying rent, form filling, advising income fortnightly for the purposes of DSP, completing taxes, liaising with employers and with employment support workers, filling out prescriptions and monitoring medications, hair cuts, managing medical appointments, podiatry, ophthalmologist etc. Parents also organise eg gym memberships, dance competitions and costumes, lesson schedules etc.

Her support workers’ roles in her daily living activities include:

• assisting her to plan her menus and manage pantry supplies
• facilitating grocery shopping (neither nor her house mate drive)

• overseeing health and hygiene routines in the house, such as clearing out past use-by foods
• supervising the weekly cleaning so it reaches an acceptable standard
• assisting with hanging sheets (redacted is too short to reach the sheet clothes line)
• assisting with changing sheets and doona covers
• supervising ironing where necessary eg work uniform
• overseeing cutting up of vegetables (redacted has issues with fine motor skills and is scared of sharp knives become of her visual impairment)
• assisting with oven-cooked items where redacted has difficulties removing hot items safely from oven
• overseeing and reporting to parents where redacted’s clothes need repair or replacement (redacted is not concerned with appearance and does not notice if eg work uniforms or everyday clothes need attention. Occasionally we have even been notified by her employer that her uniform needs repair or replacement. Though she keeps her clothes clean, redacted literally does not notice if things are falling apart)

Support for recreational and community activities

pays for her own recreational activities with the exception of DADAA. However, her support worker as noted above will usually take her to the venue. She does not need support at dancing or bowling; however, a support worker will accompany her to gym. This is essential both to ensure safe use of weights, but equally to support her behaviour in the gym, where she can become upset by loud behaviour, issues with turn-taking, waiting for equipment or people behaving in ways she does not consider fair or appropriate. As noted above, she does have some behavioral issues which make her vulnerable in public places without support.

needs a companion to travel to games of football and basketball, which are all either to night or on the weekend. She and her support worker use public transport but it is incredibly crowded and she could not negotiate this alone. Further, she is not safe by herself in public at night. She also responds poorly to aggressive behavior including swearing or drunkenness at football games in particular, which make her vulnerable and frightened. DADAA

attends DADAA for three hours every week and this was previously funded by NDIS. At DADAA, has worked on video making and production, and photography, with a mentor. She is currently working in a small group on making podcasts for Radio DADAA, entailing researching a subject, preparing interview questions, and conducting the interview. None of this would be possible without support from DADAA staff as doest not have the skills or understanding to do these things by herself, though her confidence and capacity are improving as she is further extended by these activities. Subjects have ranged widely: state and federal politicians such as Senator Jordan Steele John, past Dockers footballers, and a range of sports fans. As a result she was awarded a scholarship and cash prize by the local Soroptimist society. In August this year, it had been intended that she would travel to Canberra with the Radio DADAA crew and a dedicated support worker to spend a day conducting interviews at Parliament House.

What to cut?

’s support budget was cut four weeks ago by over one-third; and with the proposed changes to NDIS, we anticipate further cuts. The question for us as parents is, where can we make these cuts?

has completely lost her dedicated funding for DADAA, which will close off to her the wonderful creative opportunities which she has embraced and which have facilitated her active community engagement and integration. Her developing skills will become redundant, and her voice on Radio DADAA, and visibility across a wide ranging audience, silenced. Funds for DADAA can be drawn from existing funds for community engagement but these funds, already cut by one-third, will then be further reduced. Reducing funds for everyday living activities and community engagement will leave her safety and health (including mental health as she is increasingly confined to her home and cut off from her friends and everyday social life) severely compromised:

• Vulnerable and at risk in the home when preparing meals
• At risk in areas of basic home hygiene
• At risk in terms of health
• Unsupported in everyday activities
• Unable to participate in the social and community engagements she currently pursues (at her own expense) as she is unable to access them without a support worker because of transport issues
• Less visible in the community as she is forced to withdraw from community engagement
• At risk when travelling to events such as football or basketball, if she is able to access them at all All of these factors will henceforth need to be balanced. Some will have to be maintained eg safety in the home and support in accessing shopping, but that will have to be at the expense of accessing community-based and recreational activities as she cannot access them alone because of transport issues. Participating in her ‘three times a week gym and swimming’ routine is absolutely essential for `s health in terms of her ongoing cardiac condition, and this will need to be prioritised. So support in this area and assistance with accessing the gym safely is mandatory. Consequently, her DADAA activities – where she is clearly showing evidence of increasing skills and where her interviewing and radio podcasts are contributing to the visibility of people with disability in the community – will likely have to go. Access to other activities eg bowling and ballroom dancing (where she is competing in disability dance at a high level, gaining medals in most of her competitions) will also need to be cut out. Though NDIS does not cover the cost of these activities, she will not be able to travel to her lessons or activities as they are not accessible by public transport in a timely way. have great potential and, with the help of her support workers, has seized every opportunity made available to her. Her life will be severely impoverished and quite frankly, her walls will close in with the cuts already imposed on her this month. Though she will still be able to access employment, her inability to participate in other social and community activities will go. What else will go once the new cuts are introduced? Once again, cuts to the NDIS – for her, but overall – will see people with disabilities confined in their homes, increasingly invisible, unable to pursue a decent life such as others take for granted, to fulfill their potential or to engage in a normal everyday fashion with friends. This is a historically backward step: a return to the bad old days of segregation, exclusion and invisibility. As an aging parent I fear for my daughter’s future. The full and meaningful life she has been able to lead is evaporating before our eyes, and she and the community will be the poorer for this.

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