Submission on the NDIS Amendment Bill
Name:
My connection to this issue: I am a disabled woman on the NDIS. I have been an NDIS participant for a few years, after struggling to access affordable support for many years. As a result of the support I have been able to access through the NDIS I am able to work full time as a public servant.
My overall view of this Bill
I am very concerned about this Bill. I do not believe it has been authored by people who work with or know people with disability, have an understanding of the disability sector, or have ever met people on the NDIS.
It is very scary thinking about how I would be without the supports I need, due to a condition I didn’t cause, plan for or expect. I am 26 years old and as someone with a degenerative neurological condition, my working life/career would be short lived without the supports I receive through the NDIS. I want to still be able to walk in 10 years and if my supports were cut, this is much less likely.
I ask that the government withdraw or seriously reconsider this bill.
My key concerns I find the Bill to be generally quite harmful and not based on an accurate understanding of the NDIS ecosystem general, however I have a few key concerns:
● Defining Functional Capacity: ○ This is a very troubling section for me. Functional Capacity is generally defined as “your ability to complete daily tasks and activities in your home, community and work environment.” This is assessed through appropriate and evidence based tools and methods. ○ The definition outlined in the Bill is very different and appears to allow the NDIS to “prescribe methods or criteria to be applied for the purposes of (defining functional capacity.)” It further adds that the NDIS may prescribe what is taken into account when assessing functional capacity. ○ I do not understand why the government would implement such a change, which is not evidence based and only serves to harm people with disability. Why does the government think it knows my functional capacity better than my allied health team? ○ My functional capacity is not something the government should determine. Especially as they are 1. Not my allied health team, who see me regularly, and 2. Often do not have any experience in disability care, supports or assessments.
● Reduced funding for groups of supports ○ Reduction of funding for supports is not the most effective method of cost reduction. If the government intends to reduce costs relating to supports, I believe the government should look to more appropriately capping prices for supports and managing the private sector greed. ○ Reducing funding for supports, especially in bulk, is not only detrimental to participants, but it shows what the government does and does not value for people with disabilities. ○ If the government intends to reduce funding for supports, I would expect there to be appropriate and accessible State and Territory services in place first. If not, what are people with disability expected to do when there’s gaps in services?
● Strengthen link between an impairment and need for support ○ Paragraph 34(1)(aa) Omit “arising from an impairment”, insert “arising directly from an impairment or impairments”. ○ This change ensures that people with disability are not seen as a whole person, just seen as the disability the government decided was ‘bad’ enough. This continues the current NDIS model of being about our deficits. We are people! We are valuable! I am disabled, this doesn’t mean I’m useless and should always be defined by what I can’t do. ○ While this is already a very prevalent issue in NDIS assessments and plans, it really doesn’t take into account the fact that people with disability are much more likely to have co-occurring conditions, especially mental health ones.
● Reasonable and necessary supports ○ The change from “People with disability should be supported to receive reasonable and necessary supports, including early intervention supports” to “People with disability should be supported to receive NDIS supports, including early intervention supports.” ○ This change demonstrates that the government is not concerned with facts, evidence or people with disability. This change will ensure the government is able to legally decide that they do not believe you need certain supports, with no medical evidence. ○ As seen via all of the various ART cases in the past few years, the government does not have a history of appropriately funding supports for people with disability. “NDIS support” is intentionally vague and would mean that if the government has decided I do not require all of the services recommended by a healthcare professional (via deciding my functional capacity), I could receive 1 hour of support work a week, which is NDIS support and thus meets that legislative requirement. Is that not concerning at all?
○ The inclusion of “Funding under the National Disability Insurance Scheme should be used efficiently…across participants as a whole, should be equitable, having regard to similarities in needs and circumstances.” Participants have been told for years that their reports are too general and should be more individualised and person centred. This directly contradicts this? Additionally, “having regard to similarities in needs and circumstances” is very vague. This is impossible to appropriately and equitably assess. ● Tightening meaning of permanence to reduce access where an impairment can be treated - the insertion after 24(4). ○ I am very concerned that the government believes that ongoing medication to mitigate disabilities is treatment, and thus leads a person to be ‘cured.’ ○ I receive ongoing medical treatment for my neurological condition, this does not cure it but rather mitigates and reduces the risk of further active deterioration. This does not stop the degeneration and does not reduce the risk of cognitive, physical and psychological decline. This is not a cure, but is a treatment. ○ Recognising the insertion of Note 2, I am still concerned that the determination of “person has undertaken all appropriate treatments for the impairment” will be assessed by an overworked NDIS public servant who does not have any education on what this means in a disability context. Who will decide what this entails? ○ It is concerning that this government believes people with disabilities have decided against medication that would help them and would instead decide to access the NDIS, which does not provide medical care.
Other concerns:
Community participation People with disabilities already experience high levels of discrimination and often lose their friendships and connections when they are diagnosed [if they haven’t been born with a disability, which comes with further isolation risks]. Community access is imperative to reduce the burden on Medicare, as it helps people to stay mentally and physically healthy.
Psychosocial supports have already been reduced and unofficially cut, this has already led to mental health crises and decline for people with disability. Social supports for people with psychosocial disabilities can be hard to maintain and this NDIS category helps people to exist in society and have good social connections! The effects of social isolation are huge and will add extreme stress to the healthcare system, people are already lonely! People who experience social isolation and loneliness have an increased risk of serious health issues like dementia, suicidality, type 2 diabetes, and heart disease and stroke.
Crisis situations / “not contactable” rules Anyone who has ever been in hospital, or has supported someone in hospital, knows that communication can be very hard. How can we be expected to respond to requests from the
NDIS quickly if we’re in a place where we are not provided with a timetable of when a doctor will come, when we’ll go for an MRI or CT scan, when we’ll need some form of medicine or test?
Disabled people are people, and we don’t run the hospital schedule. Disabled people also, in general, have energy limitations. We also have lives! It’s not as easy as logging into your email, knowing exactly what to say, and responding within a short timeframe. Especially when correspondence from the NDIS rarely requires a simple answer or comes at a good time.
Eligibility or assessment changes I am concerned that the Government does not know what the NDIS actually is, how it makes a difference to Australian people’s lives, and what the actual process is for accessing it.
Access is not based on diagnoses. I know a significant number of disabled people who have conditions listed on the NDIS lists, but who have been rejected. I have also experienced this.
I have four different disabilities. Three of which are on the lists. I did not have one of these diagnoses when I initially applied for the NDIS and was told I am ineligible, which clearly shows that access is not based on diagnosis.
The NDIS has always been about functional capacity and evidence based reports, I have been told that my reports should be individualised and not generally based on other people with my NDIS approved disability. This proposed change is a step back and directly opposes what NDIS participants have been told.
My message to the committee: The accusations by the government on what NDIS recipients are actually receiving is abhorrent. All Australians benefit in some way from NDIS expenditure and this Bill shows us that the government, who we have elected to represent and support us, sees us as an inconvenience. The Government seems to have forgotten that we vote too. I will never again vote for any party, or politician who has supported this Bill.
Disabled people are already receiving limited supports, being told they’re unimportant, and are at a high risk of mental health crisis.
Disabled people are people. We have needs and want to contribute to society, which we cannot do if we are not supported.
The NDIS has supported me to keep my job, maintain my mobility, and maintain my cognitive function. I pay tax, I volunteer and I donate to charities. I work in a public health policy team, my work directly supports the community. I am a valuable person and I believe all people are valuable in some way and our worth should not be tied to economic contribution or cost.
Without the support of the NDIS I will not be able to do any of those things. If this Bill goes through as it is currently, there will be wide ranging social, economic and health harm. The economic benefit and savings that this Bill intends to see will be countered by severe harm and hardship.
I ask that the government reassesses this harmful piece of legislation, and instead looks to regulating the private sector to reduce costs. An unregulated sector that supports vulnerable people is a recipe for greed and harm. Please don’t fail more vulnerable Australians just to try to save a bit of money.