Submission 2522
Securing the NDIS for Future |Securing the NDIS for future generations
Submission by NDIS participant
Introduction
The Labor Government would have you believe this bill is about a reform to return the scheme to its original intent. However, nothing could be further from the truth. This Bill in its current form strips the very core foundations of the NDIS. The scheme was a National insurance scheme for all Australians, something that is absent in both the current language being used in parliament and the Bill itself.
All participants, their families and supporters agree that the NDIS needs urgent reform, however, under the current ACT, this must be codesigned between the Government and people with disabilities. This draft of the Bill has left us blindsided and left us scrambling to provide a response to the Bill that was tabled less than 48 hours after the budget was handed down.
The NDIS was a scheme for all Australians not just the estimated 500,000 severely to profoundly disabled people needing daily assistance to live an ordinary life. The NDIS was designed to offer more than basic quality care. It offered participants support their way! Enabling disabled people to make choices about who supports them and how. Some of these choices were as simple as who they allowed to come into their homes and when they took a shower.
We’re not talking about luxury holidays or trips to a day spa. (what participants choose to do when they’re out in the community is their choice. These choices are not about what they look like to onlookers but basic human rights. Access to water, food and shelter, basic hygiene, and dare I say it, “The right to social connection. “ A percentage of us choose to use our supports to do paid or voluntary work.” If I didn’t have community access support I would not be able to make and sell artwork and volunteer at community events.
The original design had three tier supports.
Tier 3
While it is true that the NDIS was only meant to provide individualised plans for around 500,000 participants (we need to allow for population growth in there). In what was then known as Tier 3 for permanently disabled participants who needed daily supports to ‘live their best lives.’ The disabled community is now asking the government to supply reasonable and necessary supports to enable all Australians with disabilities, where a disability is permanent, stable or otherwise.
Tier 2
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Securing the NDIS for Future |Tire 2 is now what the government is calling Foundational Supports: This is where early intervention supports should sit such as the proposed Thriving Kids and other rehabilitation programs. Some of these participants over time may be able to be supported in the general community e.g Medicare, hospitals, mental health services and community groups.
Some participants who should be supported by foundational support over time will be transitioned back to community supports. While for others they will continue to need Tier 2 supports or eventually moved to the individual plans provided by the NDIS.
As it stands neither state nor federal government fund non-individual supports, previously referred to supports under ‘block funding’. Plain and simple, it is all or nothing. The responsibility for funding foundational or community supports remained with State Governments. However, the states saw their financial contribution to the NDIS as meeting the support needs of people with disabilities. Full stop!
That left us with a situation where you either entered the scheme or there was no formal support network available. Sadly for some disabled Australians and their families, they are left to struggle on their own. In a strong economy like ours this is inexcusable. The states need to muscle up and own their responsibility to reinstate foundational supports.
The pillars of the original design
Pillar 1 Insurance Scheme for all Australians. All Australians paid into
The Scheme through an increase in the medicare levy.
The language used in the current bill does not support this pillar. The design that will result if this Bill passes moves away from an insurance scheme to a welfare scheme where you need to prove your level of impairment, but there is no other way you can receive the support. In the case of children, most supports will be reclassified as parental support. But at what age does parental responsibility end?
Pillar 2 Social Model of Disability Care
As opposed to the medical model of care, this is where we move away from seeing disabled people as patients. Under this model, it is not our impairment that disables us but the structures and systems on which our society operates.
This Bill reverts back to a medical model of care, whereas previously social support was seen as vital for participants health and wellbeing. Support under the NDIS will focus on addressing needs related solely to a person impairments. I can see this change makes it easier to regulate the disability sector, however, I feel the Bill will lead to the over regulation of services. More regulation leads to needing to provide more documentation. The gathering of this information may lead to mental health issues for participants and those who assist them.
Pillar 3 Social Reform through economic and social participation
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Securing the NDIS for Future |One of the key reforms was to encourage social and economic participation in the community for participants and their families. ‘Respite’ would allow parents and caregivers to return to study or work. Many of my support workers have lived experienced of disability through being parents of children with disabilities. The causal nature of the disability sector provides, is ideal employment for this cohort. The Bill will change this opportunity. The support needs of the children will become the responsibility of their parents placing financial and emotional strain, thus reduction in income and social networks. We have already had deaths as a result of the introduction of the Bill.
Pillar 4 Social Reform that includes Choice and Control
The NDIS shifted the focus of disability support, support plans became individualised,
focused on their goals and what they needed to achieve their goals. The planning focus
considered participants location, type of accommodation, and informal supports.
This individualised approach gave participants choice and control when implementing their plan.
These choices gave participants and families choices around services they accessed, who
could come into their home, support workers and how and who would assist them to manage
our plans. We no longer needed to use registered providers. Something we had not had
before the NDIS was created.
In a market driven economy this should have created greater competition to seek to provide
excellence in services and service provision. Instead of a way to regulate the marketplace,
pricing caps were introduced. All providers, thus decided to charge the cap rate and it was
business as usual. There was little incentive for participants to shop around. This led to
myself and many other participants choosing to use independent service providers including
support workers.
While I see some advantages to greater regulation in the scheme this regulation removes
many of the choices that participants enjoy.
The loss of the very foundation of the NDIS
It is my view that the bill does not return the NDIS to its original intent, rather the Bill
proposed changes knock out the four foundation pillars of the NDIS. Without these pillars,
the core of the NDIS will collapse.
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Securing the NDIS for Future |The changes proposed will be devastating to our disability community. We fear the
governance powers as spelt out in schedule three will lead to a loss of the empowerment
disabled people gained for the first time in history. The development of the NDIS as the
equivalent of a human rights movement.
Schedule 3 allows ministerial powers to make changes without seeking approval of both
houses of parliament or even cabinet. We as a community know our has fight for a system
that protected our human rights will be destroyed.
As it is written this Bill gives participants no protection against further cuts to NDIS. How ironic that a Bill title, Securing the NDIS for future generation will lead to the NDIS becoming a shell that will crumble over time.
My personal fears and tears
I am a 58 year old with complex neurological and physical disabilities, with limited informal support. For me, that means poor balance, inability to walk any distance, poor coordination, speech impairment and limited energy reserves – meaning I have difficulty with communication, regular seizures and difficulty swallowing. My complex support needs mean I need to have someone with me 24/7. This means I struggle to navigate barriers created by the structure of our society, including physical and attitudinal barriers.
Despite this, I am very active in the arts and culture community. I have served on many boards giving voice to disabled people and my passion is to work towards inclusion in the Arts. This Bill puts my life’s passion and everything I have fought for at risk. The Labor Government sees the employment of disabled people in the arts sector as unreasonable and unnecessary. Therefore, definitely people with disabilities have no business visiting an art gallery or going to the theatre. This is not what I call living an ordinary life should look like.
My impression is, the public assumes my social participation looks something like ‘having haircuts and going to the movies’. If I am doing these things the actual costs of these activities are definitely not paid for by the NDIS. OK even if I was using my supports to do these activities, that’s my right. It is reasonable I would need to do my shopping. Between you and me, I hate shopping.
Not that it is any of your business, I use my community participation funding to attend medical and therapy appointments. As an artist I visit art galleries, exhibitions and other networking events. In addition to running a small microbusiness, I volunteer at community art galleries.
When I travel interstate for work these are work expenses, these expenses included flights and accommodation for my support worker unless I am successful at gaining grants. The Introduction of the NDIS saw funding for disabled artist paused as many people assumed the scheme would extend to the disability arts sector. This arts funding is one stream of income
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Securing the NDIS for Future |for working artists so was never going to be funded by the NDIS. Slowly as State and National funding bodies realised this, programs for disabled artists were reinstated.
For me, a few nights in a tourist park is a luxury, while other working Australians get to enjoy overseas holidays. I am not seen as financially contributing, rather an expense to the tax payer. The treasurer tells me the economy can’t afford. While tier three was designed for people with my limited function. I do not feel in any way that this Bill secures my participation in the NDIS in the future due to the ministerial powers that are proposed. In fact, I see myself sitting in a hospital bed or nursing home, because of risk of death due to choking on my food or drink if I had insufficient supports.
I am fearful the new functional test will not be designed for someone like me with complex and specialised needs. I am yet to receive my impairment notice, which determines which of my many disabilities will be assessed. If it is determined that my functional abilities relate to my Cerebral Palsy and not my seizures, which often require emergency medication administrated by a trained support worker, may not be considered, thus, I would lose 24/7 supports.
This is even more complicated as it is which impairment affects a particular function. For example, my dysphagia could be due to the aging process associated with my cerebral palsy, or it could be seen as a symptom of Functional Neurological Disorder. If it is unclear to specialized neurologists, then how does the NDIA decide? If it is deemed only my CP, will supports associated with my dysphagia be deemed not reasonable or necessary which could lead to potential death by choking.
However, that is not the end of my assessment. The Bill is moving to tighten the eligibility of the NDIS. One way this will be achieved is disabled people will need to prove they have exhausted all other treatment options and therapies before being eligible for support under the NDIS. We know the extent of the Health Ministers powers. What if the Minster decides to extend this ruling to existing participants, especially disabled people in my situation.
For example have not tried every treatment of epilepsy could the minster decide I am no longer eligible for support related to function loss due to seizures. This Bill outline when the government will start the cuts to the NDIS and have been very clear the would like to commence using the tools and powers from July 1. What isn’t clear are the future cuts they will make to the scheme, as a result of no longer needing to come back to parliament.
My concern although Labor talks about tighter regulations making it harder for neglect and abuse to occur and a focus of stamping out fraud. The Bill makes no guarantee that if the measures in the legislation fails to meet its current targets, further cuts won’t be made by the minister.
I ask the Senate to ‘call the government out’, on our behalf. Given this Bill does not secure the NDIS for future generations. Rather it threatens to destroy the core of the NDIS and leave
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Securing the NDIS for Future |the rest to crumble. It does not use strong economic principles nor balance cost and reform. It divides the disability community and leaves us with uncertainly and in harms way.
The reform of the NDIS must focus on strengthening the rights of people with disabilities; the States reestablishing foundational supports, unite all Australians, and be based on strong economic measures, acknowledging what people with disabilities, their supporters and employees bring to the social and economic contribution of our communities around Australia.
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