Jodie Herbert
hello@abilitypathways.au 0477 828 957
Carer Submission
Submission from Jodie Herbert, Mother, carer and disability advocate, Canberra, ACT
Re: NDIS Community Participation Funding, Transport and Employment Supports
I am writing this submission as a mother, carer and advocate for over 20 years.
I have three children, all with varying degrees of autism. For more than two decades, I have lived the reality of raising children with disability, navigating systems that often underestimate them, and fighting for the support they need to build real lives in the community.
My oldest son, McKye Herbert, is 21 years old. He was diagnosed with non-verbal autism at the age of two. When he was little, I was told by a neurologist that I should give up on him and focus on my other son, because McKye would spend his life “sitting on the floor, spinning things”.
That neurologist’s statement has stayed with me for nearly two decades.
At first I cried at the cruelty in that statement for four solid days. Then I picked myself up, as so many Carers/Parents need to do, and set myself a task to give him the very best chance at having a good life I could.
In 2007, I built a program of 42 hours of intervention in place for McKye every single week, and kept this up until his 17th birthday.
Today, McKye is an NDIS success story. He has held an award-wage job for two full years. He earns wages, pays tax, receives superannuation, accrues leave, contributes to the Canberra community, and is proud of the work he does.
His story was recently featured in The Canberra Times because it shows exactly what the NDIS can achieve when funding is used well, and a copy of this story is attached to this submission.
McKye’s success did not happen by accident. It happened because his NDIS Community Participation funding gave him the chance to build a real employment pathway slowly, safely and properly.
McKye’s pathway to work
McKye always wanted to work outdoors and work hard. He loves gardening, mowing, labouring, using his body and being part of a practical team. But like many people with complex disabilities, he could not simply walk into a job interview, complete a standard recruitment process, travel independently to different job sites, talk with customers, read work plans and begin work without structured support.
His employment pathway began with volunteering.
For six months, McKye used his NDIS Community Participation funding to do volunteer gardening with support. This gave him the chance to learn what work felt like without the pressure of immediate paid employment. He was able to practise turning up, following instructions, staying with tasks, managing the sensory and social demands of the worksite, building stamina, and learning how to be part of a team.
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After that, he completed a three-week job trial.
That trial gave his employer a chance to see McKye’s capacity in a real work environment. It also gave McKye time to show what he could do. Without his community participation funding and that supported trial, he may never have been offered the job opportunity, because traditional employment systems are not designed for people like him.
McKye was then offered his first award-wage job.
He was placed on six months probation, like any other employee. During that time, his NDIS Community Participation funding continued to support his disability-related needs at work. That support was not replacing the employer’s responsibility. It was helping McKye manage the disability barriers that could have otherwise caused the job to fail.
To assist him not to fail, I engaged the supervision of a 3rd party DES consultant to act as intermediary between McKye and his employer. Using this model, our family have successfully navigated many of the usual employment issues such as gaining reliable shifts because routine is best for him, accurate pay, gathering compliance documentation, arranging transport to and from job sites, and communications between his employer and his mother (his advocate).
Once McKye successfully passed probation, we requested NDIS Employment Support funding through the NDIA so he could continue working.
He has now been employed in an award-paying job for two years. He pays tax, receives superannuation, accrues leave and is a contributing member of society.
Why Community Participation funding mattered
Community Participation funding was the kick start. It helped McKye move from isolation into volunteering, from volunteering into a job trial, from a job trial into probation, and from probation into ongoing employment.
That is exactly the kind of pathway the NDIS should be supporting.
For people like McKye, Community Participation is not a social luxury. It is not just about outings, haircuts and movies. It is not simply about keeping someone busy during the day at a disability daycare.
It is the bridge between home and community.
It is the bridge between disability support and employment.
It is the bridge between being written off and being given a chance to thrive, to shine and to be seen as an equal. McKye’s Community Participation funding helped him build:
● routine ● public behaviour
● stamina ● team participation
● confidence ● safety awareness
● work tolerance ● emotional regulation
● communication with co-workers ● trust with support workers
● task persistence ● real workplace expectations2
These are not soft outcomes. These are employment foundations.
Without that funding, McKye would not have been ready for work. Without that support, his employer would not have had a safe and sustainable way to give him a chance. Without that pathway, McKye may still be sitting at home being treated as someone who had nothing to contribute.
Transport is critical to McKye’s employment
McKye’s support worker picks him up from home at the beginning of his shift and drops him back home at the end of the day. This transport support is critical to McKye’s ability to work.
McKye is not only non-verbal autism 3, he is also Alexic.
Alexia is the profound inability to read or use any form of written language or symbology, including augmented communication, signlanguage, talking cards, gestures, even road and toilet signs are difficult for him. This means he cannot safely or independently catch public transport, particularly where travel would require two or three bus changes across Canberra.
His work also requires him to travel to different job sites and carry equipment. McKye is extremely portable. He understands about 80% of what is spoken to him, and he learns what to do by watching and observing others. However, expecting McKye to manage multiple bus changes, while carrying work gear would not be realistic, safe or practical. Without supported transport, McKye would not be able to reliably get to work. Without reliable and trusted transport, McKye would not be able to keep his job.
For McKye, transport is not an optional extra. It is part of the employment support that makes work possible.
Why McKye needs 1:1 support at work
McKye’s communication skills are very limited. He cannot speak, he cannot read, he cannot advocate for himself, and he cannot thoughtfully respond to bullying, confusion, assess danger or risk or deal with conflict.
Once at the job site, he is unable to communicate with the home owner, explain what he intends to do, or provide any gardening advice. He can do the gardening job, but communication related to the job is beyond him. That is the job of his support worker – his biological prosthetic communication support.
At the same time, McKye understands a great deal of what is said to him, particularly direct instructions. This is one of the reasons he is such a valued member of the gardening crew.
He can work hard. He can follow instructions. He can stay on task. He can be shown what to do and then keep going until the job is done.
But he cannot manage customer service. He cannot discuss job requirements with paying customers at job sites. He cannot read work plans. He cannot independently communicate concerns, negotiate changes, explain what has happened, or advocate for himself if something goes wrong.
That is why he needs 1:1 support on the job.
His support worker works alongside him. When McKye is mowing, his support worker may be hedging. When McKye is painting, his support worker may be sanding. When McKye is weeding, his support worker may be pruning.
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They are not standing over him. They are working alongside him, always nearby, watching for safety, helping him understand instructions, supporting communication, and making sure he remains included and successful, and always teaching him through observation.
That support allows McKye to be a real worker, not a passive participant.
It allows the employer to run a real business.
It allows customers to receive a professional and inclusive service.
It allows McKye to contribute, earn wages and be seen as a valuable member of the team.
The Pathways employment model
The model that helped McKye work is simple, practical and good for everyone.
The employer pays McKye’s award wages. The employer charges commercial rates to customers for the gardening and labouring services provided. McKye is treated as a real worker, not as a charity case.
The NDIS funds the disability-related employment support McKye needs to be successful at work.
That means the employer and the customer receives the benefit of two people working for the price of one wage, because McKye’s support worker is funded through the NDIS. The business can remain commercially viable, the customer pays a normal commercial rate, and McKye receives proper wages, tax, superannuation and leave.
This is a practical employment model that works.
It does not ask small businesses to carry the full cost of disability support. It does not ask disabled workers to work for free. It does not trap people in endless preparation with no real job at the end.
Pathways creates a real pathway into real work.
This is the kind of model Australia should be building, not cutting.
The human outcome
McKye is not just employed. He is growing as a person.
He feels empowered, strong, confident, resilient and included.
For people with complex disabilities like McKye, real inclusion takes a village. People with significant communication disabilities are often profoundly isolated. McKye cannot speak, cannot read, cannot advocate for himself and cannot easily explain what he thinks, feels or needs. His family relies heavily on watching his behaviours to know if he is comfortable and happy or not.
That makes him incredibly vulnerable.
But he is also a very hard worker. He is the crew member of choice when there is a big job because he goes and goes and goes until the work is done.
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Most of all, McKye is learning that he can think for himself.
At home, he volunteers to make me tea in the morning. He notices when the bins need emptying and takes action. He plugs in his younger brother’s iPad so it is charged the next time it is needed. Working has taught him to observe, reason what needs to be done, and make the decision to do it.
You can understand what McKye is saying by using your eyes, and by listening carefully to his tones and sounds, and paying attention to how he responds to questions.
He is communicating all the time. The world just has to slow down enough to notice.
Other families and carers who hear about what McKye has achieved are astounded. They know how hard it is to get a person with complex disability from home into community, from community into volunteering, from volunteering into a job trial, and from a job trial into real paid employment.
McKye is an NDIS success story. But he is also a warning.
This kind of outcome will not happen for other people with complex disabilities if this Bill is approved and NDIS Community Participation funding is reduced to the point where the pathway disappears.
Why the proposed reforms are concerning
I am deeply concerned about any NDIS reform that reduces Community Participation funding up to 99.9% without understanding how that funding is actually being used.
When Community Participation funding is used well, it can create employment outcomes. It can reduce long-term dependence. It can build confidence, contribution, social connection and economic participation.
McKye is proof of that.
Cutting this funding risks removing the very support that helps people move towards work.
For many participants, especially people with intellectual disability, autism, psychosocial disability or complex communication needs, employment does not begin with a resume. It begins with being able to leave the house, tolerate other people, follow a routine, practise tasks, manage anxiety, build trust, travel safely, communicate with support, and learn how to participate in ordinary community life. That is Community Participation.
If the NDIS only funds employment support after a person is already “job ready”, many people like McKye will never get there. They need the earlier bridge. They need the practical, supported steps that come before employment.
McKye’s story shows that Community Participation funding offers a lot more than haircuts and movies, as Anthony Albanese announced recently in the media. It is not separate from employment or life. It is critical to finding those opportunities to participate. For many people, it is the first stage of employment.
What is the cost of the NDIA cutting the wrong supports
If McKye had not received Community Participation funding, he may not be working today. Instead of earning wages, paying tax and contributing to the community, he may have remained isolated, dependent and excluded.
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His support worker would not have a job.
His employer may not have a business.
His customers may not benefit from the social impacts of using an inclusive gardening service.
Removing this funding will not save the NDIA money in any meaningful sense. It would simply shift the costs back onto social services, onto families, carers, health services, crisis systems and the broader community.
As a carer, I know what happens when supports are removed too early or not provided at all. Families collapse. Families carry the burden. Mothers carry the pressure. Siblings carry the caring responsibilities instead of building their own lives. People with disabilities lose skills, confidence and opportunity.
This Bill is wrong. The NDIS should be focused on building capacity, not cutting the very supports that create it.
McKye’s life changed because someone gave him a chance, and because his NDIS funding made that chance possible.
What I am asking decision-makers to understand
I am asking decision-makers to look carefully at the real purpose of Community Participation funding before making changes that could harm people like my son.
Community Participation funding should be recognised as a legitimate pathway to employment, because you can only apply for Employment Supports funding once you have the job. And that is the Gap that the NDIA refuses to see.
This is especially critical for participants who have significant communication needs, and require gradual, supported exposure to work-like environments before they can move into paid work.
The NDIS should support models that help participants:
● volunteer safely as a first step ● complete supported job trials ● build workplace stamina and routine ● receive support through probation ● access supported transport to work and job sites ● receive 1:1 support where disability-related needs require it ● transition into ongoing award-wage employment ● access Employment Support once the job is established
This is not wasteful spending. This is smart investment. 1 in 5 Australians have a significant disability. 20% of them are non-verbal.
McKye’s story is not just a nice story. It is evidence of what is possible when NDIS funding is used with purpose.
My son was written off at the age of two.
Today, he is a worker. He has a job, a purpose, a payslip, superannuation, leave entitlements, pride, and a place in his community.
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He is a valued member of a team. He is a contributing member of society. He is a real person in the eyes of his co-workers and support team, and in the eyes of the Canberra community.
That did not happen despite the NDIS. It happened because of it.
NDIS used wisely is not a handout. It is a hand up.
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