National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1350
Submission regarding the proposed changes to the NDIS.
I am the mother of a 30 year old child with multiple disabilities. M has a tracheostomy, due to deformities in the the size of her skull (microcephaly) mouth and jaw since birth. She has intellectual disability, cerebral palsy, is non-verbal and needs assistance for mobility. Since the NDIS became available, M has been able to move out of home and lives with her 3 carers who provide one on one support across the entire week.
M requires assistance through the night for suctioning her tracheostomy and re- inserting it when she pulls it out. This continues throughout the day. She requires assistance for everything she does including all toileting, mobilizing, communication, social and emotional support.
When M was under age 5, she attended speech therapy, OT and physio. However when she went to school, she was no longer eligible to use the community service funded OT early intervention. This was at the time before the NDIS was set up, when the current government states – that the supposed “States provided programs for children requiring early intervention”. At that time there was one of only about 3 private practices in Townsville and, being on the carers pension we were unable to access these services. My daughter had almost no access to Speech Therapy, OT or Physio apart from a couple of appointments per year through the Cerebral Palsy League. We had to apply to the Variety Club to obtain a speech device.
I am an Occupational Therapist, and, having had to leave my PO4 job in Queensland Health in order to look after M in 2001, I started a private practice when she was about 6 years of age. With all the overheads, my income was so low from running this business I still qualified to stay on the carer’s pension for quite a few years. My priority has always been to help families and children, and I used the available “Helping Children With Autism” Rebates that were available.
The NDIS meant that M was able to move out of home and I was free to expand my business to help as many children with learning difficulties, developmental delays, autism spectrum disorder and ADHD, dyslexia, dysgraphia as I was able. This was up to 150 children and their families per week, as I was able to train other OT’s with the strategies that made a real difference. I registered my business, and provide an accredited service. Because I have been in operation for 24 years, I have seen the long lasting effects of intervention, where children I have helped are functioning well in the community.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1350
The proposed changes to the NDIS act will greatly affect the clients that my business works with. Parents greatly benefit from 1-2 years of regular therapy as it takes time to assess children, and problem solve their unique presentation. Level 2 children with ASD require high levels of intensive therapy for behavioural issues that if left treated end up affecting everyone in their community.
As an experienced, senior Occupational Therapist, with over 35 years’ experience, with an NDIS business. I’ve been able to use the specialised experience I gained as a mother of a child with multiple disabilities to be able to help other parents of children with learning difficulties, ASD, ADHD and other disabilities. My business has grown and now helps up to 150 families per week to access help, therapy, training and assistance for parents to maximize the potential of their children’s development.
The current NDIS plan to return this area of treatment provision to community services, schools and day cares neglects the important area of parent training (which is not individualized enough in Parenting courses) as it depends on a child’s unique attributes and challenges.
I have tried to keep abreast of the proposed changes to the NDIS and it seems that the government is trying to “do away” with private practitioners like myself. I can only find assistance available through a few medicare rebates which will not help parents obtain the individual attention their children need. GP’s seem to be favoured to perform developmental assessments, which doesn’t seem practical at all as children need time and spaces to play for proper assessment to take place.
In NSW private providers seem to be not incorporated in the Thriving Kids scheme. Is this a deliberate thing to cause businesses of mum and dad therapists to go broke? We businesses pay tax back on the hard work we are doing. Has the government allowed for the fact that if the businesses close, for carer parents like ourselves we will have to go back on the pension? The community will miss out on the experience of therapists who have 10+ years experience with clients with disabilities, including ASD and early intervention.
Subsections 4(5) and (11)
Omit “reasonable and necessary”, substitute “NDIS”.
The NDIS needs to stay flexible with the meaning of “reasonable and necessary”. To limit the provision to “NDIS” supports is too limiting. It doesn’t allow for creativity and the uniqueness of individuals in their situation and is instead returning to an institutionalised view of disabled people.
Capacity building supports are essential. They do develop skills. For instance a child who develops reading skills will have a much better potential for work than one who slips through the system and remains illiterate. In my work, I’ve been able to help
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1350
children develop the skills they need for literacy through working on attention and concentration, pre-literacy skills, improving memory capacity, visual discrimination skills, visual perceptual skills, calming their bodies so that they can stay in one room instead of being stuck in “fight/flight”. I’ve been able to help children who are avoidant due to skills deficits to re-engage in school and become high achievers.
Many of our clients have a need for social and community supports. This is particularly important for teens who require considerable help with their social skills.
I can confidently report that for many of our clients, support workers keep our clients out of the justice system. The influence of male support workers on teenage male clients is essential to help them to integrate into the community and to assist with “the village” raising the teenager. Without the support worker, children and families will be trapped in the cycle of poverty and repetition of behavioural concerns that develop within the family unit.
The new expectation that a person needs to have received “All available treatments” before they can access the NDIS is absolutely problematic! I cannot stress this enough.
This is “big city” thinking. In country areas, private therapists may be all that is available to participants. There should be diverse accessibility of therapy services to participants in all areas. Access to treatment is what the NDIS should be all about. As a family on the carer’s pension, before the NDIS we had almost no ability to access capacity building supports. Therapy is essential. Wheelchairs are essential for children with mobility problems. Mobility itself assists with the development of cognitive capacity. That research is well established. To say that someone cannot access support for a wheel chair until they have had all ‘treatments’ is insane.
With respect to amendments to plans – allowing 90 days – this is terrible news for people who have dependence on the NDIS for essential supports. Circumstances can change very quickly and the NDIS is seeking to be inflexible to the needs of disabled people.
It is the same with psychosocial supports. The ability to attend stadiums, community gatherings is part of making people better. It helps fight depression, mobility issues, fitness issues, social issues. It is unfair to prioritize other areas of funding such as buildings, roads, unions before the basic rights of access have been granted to those who need it. Children with level 2 autism and their families require access to OT’s experienced in the treatment of sensory disorders to enable families to access the community. OT’s know the strategies to desensitize these children and adults to sensation and enable them to access normal community supports.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1350
When considering “permanence” of disabilities – We were told that our daughter was likely never to walk and her Paediatrician prescribed her a wheelchair. My vision was for our daughter to walk, and we insisted on helping her to walk everywhere. She now lives in a high set house (accessing the steps with help from her carers) and even at age 30 she is getting stronger. Her peers that were wheelchair dependent have not progressed so well and many are no longer with us. M capacity building funding has worked over the last 10 years to help her grow stronger where her health is comparable to someone who is not disabled even though she is tube fed and has a tracheostomy.
Imagine if the government no longer supported my daughter to access capacity building supports, or social and community supports? My 30 year old daughter would need to return to live with her 60 year old parents, who would have to resign from the community help they in turn engage in. 1000’s of children and their families would miss out on the benefits of their experience and learnings that is currently provided because of the wonderful NDIS.