Submission 21

17 May 2026

SUBMISSION: NATIONAL DISABILITY INSURANCE SCHEME AMENDMENT (SECURING
THE NDIS FOR FUTURE GENERATIONS) BILL 2026

I understand the need to refocus the NDS. I was there at the beginning at the conference with my friend and
we had such exciting dreams for our children. I have watched it develop into an unending bucket of money
where yet again the loudest voices are being listened to and the voiceless ones are being yet again left
behind.

However, doing a broad brush on policies such as cutting Social and Community Access makes no sense.

I always thought the focus was on one person = one plan.

The government cannot simply broadly state they will take 10% - 50% from every plan.

This will kill people.

Focus on the ones who need community access with extensive support because of physical disabilities or
complex behaviours, who would have otherwise been put into institutions not that many years ago, whose
families are burnt out and need help.

Focus on the problems with getting disability support workers who will take on our complex loved ones and
not just pick the 'easy' ones.

Focus on SDA/SIL companies offering free iPads and free rent to entice vulnerable people into their
properties and then exploit them.

Focus on agency managed plans where your government blindly pays invoices with no input from the client
or their carers to ensure that the services were actually provided.

For context I have attached our story – it is only touching on some of the key elements as it is very hard to
condense nineteen years on the page. But I have tried to outline how changes in policy are not just going to
impact our loved ones. It will have ramifications well down the line.

Please manage these changes with care.

Yours sincerely

Jodi Wood

Submission 21

This is Katy’s Story

Katy is 19 years old.

She was born prematurely with a very low birthweight – a twin.

Katy and her brother were diagnosed with delays before they were one year old.

They were delayed in every milestone – crawling, walking, speech, intellectual. Her brother started to develop quicker than her, as she continued to struggle. She was given a diagnosis at three years old but we have always focussed on where she needs help – which is in every aspect of her life.

She has been in some form of allied health therapy for years. Because of this she can talk but it is very difficult to understand her. She takes everything literally. She tires easily She will not understand many things that you ask of her. She needs plain language.

She had had some wonderful teachers – and some very average ones – over the years. Because of this she can read and do basic maths. She will never dissect Shakespeare or do algorithms but she can read a menu and tell the time. She loves to listen to junior chapter books read to her at night.

She finished school in Year 10 as there was no high school capable of taking her on. To make sure Katy retained what was gained at school, we have worked closely with TAFE NSW to enrol her in suitable self-paced Certificate I courses to maintain her basic educational skills. But she can’t do this on her own, she needs a disability support worker to be there for her due to behaviours.

She will never drive a car. There is no public transport where she lives. She relies on others to go anywhere as she lives in the country 10 minutes from her local centre and around 30 minutes to the closest major town. But this is her home. She has always lived here. And she wants to stay here. Just like the rest of the family.

She will not eat if she is heightened. She will not prepare her own meals. She would not be able to go to the shops alone to purchase appropriate foods. She will eat leftover food with no regard to health or hygiene.

She will not clean herself. The only way Katy will wash her hair is to attend a local salon once a week. This has taken years of working with Katy and the salon to allow this to happen. For example during COVID Katy went over a month without washing her hair.

She walks around with pink headphones on, with two plushy sharks, pacing and stimming and talking to herself. She had very fixed ideas on who is in her inner circle – she does not cope with other people and can become aggressive.

She can scream, spit, abscond, strike out with little warning. We just have to ride it out.

She will never be safe to live completely on her own.

Submission 21

Katy’s Week

We have tried to develop a regular routine during the week for Katy. Like everyone else.

Katy’s current funds do not allow for respite. We have not used respite in years. We have no family in the area. The only way is to ‘save’ disability support worker hours for a brief weekend or we take turns going away.

We try not to use disability support worker services after hours or on weekends to ensure we have enough for the week.

On Monday from 10am to 1pm, a disability support worker supports Katy at home. This might include making LEGO, craft, cooking. This may include a trip to the local shops which is around 20km return.

On Tuesday from 9am to 3pm, a disability support worker gets Katy ready to go out. Today is a learning day. Katy is working on a TAFE self-paced course with her support worker. She also attends an Allied Health Therapy session. This day can include up to 90 km of travel.

On Wednesday from 9am to 3pm, a disability support worker gets Katy ready to go out and have fun. Katy may go to the movies, Questacon, zoo etc. Katy is then driven back to her local town for a weekly hair wash. This day can include up to 90 km of travel.

On Thursday from 10am until 1pm, a disability support worker gets Katy ready to go out. This day is focussed on looking for suitable volunteer opportunities in the local community. This day can include up to 90 km of travel.

On Friday and the weekends, she is at home supported by us. Fridays depend on who has free time so that the other person can focus on work.

In total, Katy is supported for around 18 hours a week. She is transported around 300km a week. This routine happens for at least 48 weeks of the year.

This allows me to work.

This allows her Dad to focus on his high-level consultancy work at home.

This gives Katy a chance to do things that everyone else does.

Based on $70/hr, this costs her plan over $60,000 a year. Travel costs at $1/km are over $14,000.

Katy’s current budget is just barely covering her needs.

Submission 21

Katy’s Family

I have been told by a paediatrician that “she is probably retarded, it’s ok there are schools for that”.

I have been told by government departments to sell our home and move somewhere more appropriate.

I used to be employed in the public sector. I have not worked since our children were born.

I have driven them to appointments.

I have attended therapy sessions.

I have driven Katy to interstate appointments looking for help.

We have taken money out of our mortgage to cover their needs.

I have fought government departments for Katy to attend the most appropriate school for her needs.

I have volunteered at school so if things went pear-shaped I was there to look after her and support her teachers.

I picked her up and dropped her off at school for years as Katy was unable to use the local rural bus service on her own like her siblings.

I have had to chase her down in a shopping centre to medicate her after she has physically assaulted her disability support worker as I am the only one who can do it because of restrictive practices.

I have lost count of how many support workers we have gone through when she has burnt them out with her behaviours and complex needs.

I have also lost count of how many support workers have refused to work with her.

I have tried almost every day-options or group program in the area and we have been unsuccessful in all of them. The only way Katy can go out into the community is with her own disability support worker.

I have only just gone back into the workforce. I can only do part time as I am still the primary contact if things go wrong. I am lucky my work is flexible when a support worker calls in sick and I have to stay at home with Katy.

My husband is working from home so I can go to work – it means there is a responsible adult at home with Katy ALWAYS.

We have just managed to get a balanced life for Katy. NDIS has been a life changer. It’s not perfect, but it’s a start.

If you take away her supports I will have to leave work and take up an unpaid caring role again.

Katy doesn’t want to hang with me – I am uncool. She wants her workers. But if we don’t get enough funding she won’t be able to do this.

I will be 60 in three years time. I have almost no super. My health has been neglected as I have focussed on the children. My doctor is worried about my blood pressure. My joints are wearing out as I still have to help Katy get dressed, shower and deal with her physical outbursts. My husband is worried about me.

I no longer trust that the NDIS will look after Katy if we aren’t around anymore.