I am making this submission because:
I am an Occupational Therapist with many years experience helping people with disabilities to gain and maintain functional independence, and ideally to find and main productive work.
I have worked in schools, rehabilitation centres, and also in the Department of Veteran’s Affairs.
I have the lived experience as a parent of 3 sons; one son is now 40 years old and lives with autism.
As the mother of this (now) 40 years old man, I will refer to autism in this submission, but I include similar invisible disabilities in the propositions I offer.
Autism if a lifelong condition that results in significant discrimination and frequently poverty, since people with autism find it very difficult to gain and maintain a job.
My son has never had access to an ongoing service that could offer guidance and support. Despite many attempts to become part of the workforce, including the successful completion of two university degrees, he is currently unemployed. With only a modest level of support, it is very likely that this outcome could have been avoided. He has considered suicide several times.
This son’s life, and mine, would have been very different if he had been able to access continuing NDIS support services to help him understand social interactions and workplace expectations that underlie work performance evaluation. This guidance would have enabled him, and me to live an enjoyable and productive life.
I want to draw attention to the fact that there are many people live with a disability that may not immediately be apparent –as well as autism, these include PTSD, ADHD, persistent pain, chronic fatigue, mental health disorders, brain injuries, hearing loss and similar conditions that cannot be seen, but which nevertheless have a huge impact on their lives.
People with an invisible disability face serious barriers to participate in mainstream life. Without access to appropriate disability services, they find it difficult to be selected for suitable work, and maintain a job. Many people with an invisible disability also find it difficult to engage with people, and maintain a circle of friends who can offer emotional and/or practical support to live a more ‘normal’ life.
I strongly support the NDIS as a life-changing breakthrough in the way we as a society, treat people with a disability. There are many factors leading to the significant increase in the cost of the NDIS: I believe a major element has been the discovery of the previously hidden/unexplored extent of people with different kinds of disabilities who have previously had NO access to professional support services.
It is necessary for governments to pursue cost savings by simplifying processes, improving management, prosecuting fraud and eliminating rent seeking etc. BUT simply because a person has not previously had access to a suitable disability service does not imply that they have no need for
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services to assist them live a fruitful life. I recognise that preparing a budget involves making difficult choices between competing priorities; but I do not believe there is a sustainable case to remove sections of the disability community from accessing NDIS support while the Government continues to rebate the cost of diesel excise to the very profitable mining sector, or to spend eye watering amounts on the possible acquisition of nuclear submarines.
I do not consider the Commonwealth Government is treating people fairly when they provide extremely generous support to veterans suffering psychological damage, while at the same time limiting other Australians who live with similar invisible conditions from accessing appropriate services that can improve their capacity to live a good life.
There is no doubt that people with invisible conditions frequently face stigma, marginalisation and intolerance in schools, workplaces, in public places, and even in their families. They often find it very difficult to find suitable work, and to maintain employment. Frequently, they face encounters with police and the legal system. Yet there is no doubt that people with invisible disabilities can live a good life, provided they have access to suitable support services throughout their life. Limiting the provision of adequate services through the NDIS will maintain a large cohort of people with a disability who suffer. They strive to live their lives as best they can, but frequently they face a life lived with no job, no family or friends, and no likelihood of change to their condition or lifestyle. Often this means people with invisible disabilities live on the street. In a nation that maintains a tradition of fairness and equality, this cannot be considered to be acceptable.
Numerous people have a disability that is not obvious: they all deserve the same level of consideration as is already given to people who use a guide dog, a wheelchair, or who are veterans with PTSD.
It is important that the NDIS should operate as a single Australia wide Commonwealth agency serving people with a disability, in a similar way as Medicare The NDIS is the only agency that offers a nationwide service for people with a permanent and significant disability that affects their functional capacity.
A national disability system funded by the Commonwealth of Australia provides the same kinds of services across Australia. Anyone seeking a disability support service, can access a service through the nearest NDIS agency.
This means that if a client, or their family moves to a new location, they can quickly find another disability service.
Dividing responsibility for the provision of services between the Commonwealth and the States is very likely to lead to a similar situation as we have now in the health services, where there are endless and wasteful negotiations between the two levels of government over where responsibilities lie for the provision of quality services.
A single Commonwealth disability service agency has the capacity to register all disability service providers in Australia.
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A centralised system allows the NDIS to maintain high standards of service delivery.
A national disability service provider enables the government to enforce systems to prevent fraud or overservicing.
It is important that the Commonwealth Government is the provider of support services for all people with a disability so there is a consistent service that can be monitored for service excellence.
A national disability service agency can monitor the level of client satisfaction.
A single national disability service provider enables the collection of data to establish the extent of diverse disabilities across the nation. This is important data that is not currently collected.
A single Australia wide disability service agency is the same as for veterans: the Commonwealth Government maintains a consistent service across Australia no matter where the veteran lives. ***************************************
As an Occupational Therapist, I watched clients who had received intensive treatment in the hospital fail to make progress after their discharge to the community. The reasons for this were different in each case, but a common theme was the lack of a suitable services offering the kinds of supports they needed. Where services were available, they were fragmented, disconnected and frequently very limited.
The NDIS has overcome inequitable outcomes for people living with a disability in the community.
My lived experience is one of endless searches for a service that could offer the kind of support that my son and I needed. Despite the fact that our family lived in capital cities, and that I pursued every possible lead that I found, I was unable to find any service that could offer ongoing support that my son needed.
I found that all services stopped when children reached school age. He was on his own, and needless to say, his school days were miserable. Despite his disability, he completed school, and then gained two university degrees, but autism is a condition that affects the person for their entire life. Since completing his studies, my 40 year old son has struggled to find on-going employment. He has worked in numerous roles including a metal fabrication company, an insurance company, a telephone pollster, Uber driver, and a parcel delivery service, but he has never found stable, ongoing work. Each job was terminated.
A few years ago, this man was successful in being selected as part of a small group that was provided with supported entry to work in the Commonwealth Public Service. At the end of the program, he was offered permanent employment with a Commonwealth department. For a year or two, he was showcased by the Department as evidence of the success of the program, but he was unable to access ongoing advice. As his confidence grew, he began to apply for vacant positions in other Commonwealth agencies to upgrade his income. He was successful applicant in one of these jobs, but he was unable to maintain the role since neither the agency, nor my son had the skills to manage his work situation. As a result, he is once again unemployed. It is clear, that despite his intellectual competence, this man will continue to find it difficult to maintain a job unless he has access to suitable ongoing guidance. This cannot be quickly offered by any disability agency unless they have a good understanding of his condition.
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Is that the best we can do in Australia? A highly motivated and intelligent individual is confined to the fringe of employability, and live a diminished life? He has demonstrated that with a small amount of support, he can contribute productively in the workplace. Surely it will be a much better result if NDIS provides that support?
Providing brief, but regular support and guidance does not take much time; frequently it is offered perhaps once a month, as a 30 minute consultation over a cup of coffee. During these short support sessions, the person with the disability can seek advice; or the advisor may offer guidance on potential issues that an autistic person may not be aware of, but which are likely to occur. The difference in outcomes is profound if contact is regular and ongoing, especially for a person with an invisible disability. Over time, the contact can diminish as the person with the disability becomes more competent with the ups and downs of everyday life. A regular short prevention interview can explain what is likely to happen, or save a potential dismissal, but only if these services are provided across Australia.
When the NDIS appeared, I thought at last there would be a single agency with the capacity to understand each individual person with a disability and help them and their families. At last, there is a single agency with the capacity to see each person with a disability as an individual, and as a nationwide service, they could enable assess to suitable services that would enable people with a disability to live as independently and as productively as possible.
I would be happy to provide more details on living life with an autistic person if you wish.
The NDIS should be operated Australia wide as a Commonwealth agency in a similar way as Medicare
The NDIS program can make a real difference to life outcomes by
providing nationwide by a Commonwealth agency as an ongoing, consistent advisory and/or delivery service for people with a significant and permanent disability being available to the person with a disability, or their family, or their employer with approval of the person with the disability providing and maintaining a consistent offering across Australia.
Currently, the NDIS offers a national wide service for people with a significant and permanent disability that affects their functional capacity.
It is important that the Commonwealth Government acts as the disability service provider, or as the commissioner of the providers of support services for people with a disability, so the NDIS will provide the same range of services across Australia.
With a nationwide focus, anyone seeking disability support can access a service through the nearest NDIS agency. This means that if a client, or their family, moves to a new location or a different state, they can quickly find the NDIS service.
This is the same kind of arrangement as for veterans: veterans who need a support service can access a suitable local provider under the Commonwealth Government umbrella. In this way, the Commonwealth Government maintains a consistent service across Australia, no matter where the veteran lives.
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