Submission 2075
Submission on the NDIS Amendment Bill
Name:
I am a: PARENT (ADULT participant).
I am a parent of an adult participant. I have been an advocate for my daughter her whole life & been a very part of her NDIS journey. I hold great concerns regarding the outcome of this bill on my daughters funding, wellbeing and how this will negatively impact on all areas her life. She is unable to express these views herself. I fear that the progress my daughter has been making will regress and she will be WORSE OFF in her everyday life if these changes are implemented.
My overall position on this Bill
I do not support it.
The NDIS already have many many requirements & rules. Adding more puts more pressure & stress on the participant & their family. I understand that the government want to claw back money, they view that spending is out of control, but they are hurting the people who the NDIS was designed for. The NDIS was DESIGNED to give disabled people choice & control, individualised support, full participation & integration. The new BILL will mean these things are much harder to achieve.
My key concerns
- The bill will make life HARDER for the disabled
- The bill will abolish many of the founding pillars of the NDIS
- The bill will ISOLATE the disabled
- The idea that people need to access/ try & prove they have tried all avenues to be accepted onto the NDIS is terrifying. This alone is against choice & control & a basic human right, at what point do people have control over their lives. This is extremely concerning.
- Support in a 1st world nation is a human right.
Administrative burden – there is already too much red tape!
Submission 2075
Loss of supports – NO SUPPORT means NO hope of friendships, study/ training/ job. It means being unable to learn new skills in a supported way. It means decreased quality of life.
Community participation – THIS IS A HUMAN RIGHT! Less community support is taking huge steps backwards. Why shouldn’t disabled people be able to go to a park or a coffee or movie. The NDIS doesn’t pay for the coffee or the movie, they supply the worker so my daughter can GET THERE & BE SAFE to see a movie or have a drink. To ensure that the people serving her aren’t ripping her off, or that she isn’t being discriminated against or taken advantage of. She has difficulty even saying the days of the week in order, & can’t say the months of the year & without someone there with her, persons prey on her (has happened MULTIPLE times). She can NOT use public transport on her own or drive herself places, she is totally dependent in this area, which is not a CHOICE she made. She wants to be able to go out & see things & do things, just as everyone else does.
Crisis / “not contactable” rules – people with disability especially those with cognitive impairments are not able to do this. Families are already stretched to the limits, (even with support).
Eligibility / assessment changes – hard enough to be accepted now, fewer & fewer people will have access to help they need.
Automated decision-making – NO individualism, NO acknowledgement of the interplay of diagnosis or the impacts on all areas of life.
Funding / ministerial powers – this creates fear & seems like the government want to control the lives of disabled people, since they are providing support. We provide the support so we have the right to dictate how you live mentality.
Foundational supports / system changes – isolation, non-individualised plans, no choice & control.
Cutting participants social supports is INHUMANE. EVERYONE NEEDS connection with others. Support means those people who have disabilities will remain inside homes or even institutions where they are hidden away & UNABLE to get the social interaction they need. My daughter can’t drive. Without support she would be in a room on her a device by herself, or with family.
Without support the disabled will be locked away from society & that is a massive step BACKWARDS. Social interaction is a HUMAN RIGHT. Grouping disabled in homes together is also not the answer.
Submission 2075
The changes put money ahead of people’s human rights.
Participants lives change & plans & funding should be REVIEWED, not be automated. Each person has unique needs; the reviews need to take into account the person’s capacity/ function & situation rather than basing funding on diagnosis alone. The reviews should take onboard the recommendations & evidence to REDUCE the amount of appeals currently flooding the system. The NDIA have millions to pay lawyers to fight participants when they appeal plans & decisions.
My lived / professional experience
My daughter has had many admissions into hospital, during these periods, she is unable to attend her usual appointments & will be NON CONTACTABLE. While she does have a support coordinator & a public guardian, there is sometimes a delay in notifying as our full attention is on my daughter, not on notifying people who don’t see or know her daily. Due to my daughters LIFELONG IMPAIRMENT, she is unable to manage her appointments herself. She has a team of people who help ensure she has what she needs (support coordinator, guardian, trustee etc). The thing that the government completely fails to understand is that people that have multiple diagnosis are complex & have COMPLEX NEEDS. Her diagnosis are both medical/ disability and mental health related. One cannot be viewed in isolation & THIS is what the NDIS FAIL to both acknowledge and support. The new bill will make this even worse than it already is. Eg. OT recommend physio, the NDIS refuse to fund & state that is heath related. We go to health & they state that she doesn’t qualify for physio & to ask NDIS. OT recommends psychology, NDIS will not fund psychology & state that is Health’s responsibility. Health state they can provide X sessions but after that we need to use NDIS (NDIS DON’T fund psychology). My daughter has NO funds to pay for private psychologist. Due to my daughter’s cognitive impairment any mainstream psychology is also very ineffective as public health are not trained for the cognitive impairment my daughter has. My daughter needs modified programs & courses which has been a huge hurdle in the public space. Any support that people have now is already a BATTLE to be approved for. Disabled & their families spend so much time already jumping through hoop after hoop after hoop to get the support the participant needs & this bill will bring even more.
Every 2 years we have an OT report done (this is a requirement that proves again my daughters disability & her daily functioning), that is extremely detailed & through, each time her plan is reviewed we submit multiple documents & evidence WITH recommendations which are very detailed and applicable to improving quality of life, yet MOST are rejected as the scheme FAILS to understand the interplay between physical, mental & psychosocial health & wellbeing. I suspect that the NDIS have never even read the 30+ page report submitted. Currently my daughter is funded 1:2 (1 worker to 2 participants), even though we have submitted multiple letters, documents, evidence of why my daughter requires 1:1 but so far it has been ignored. I cannot imagine looking
Submission 2075
after my daughter along with another participant. The NDIA stated “we are willing to migrate the risk”.
The new bill will make EVERYTHING harder for my daughter, from applying, to receiving the support she requires daily. Her quality of life will be greatly affected, to the point that I likely will be unable to work. How can I hold a job when my daughter who needs 24/7 support will not receive that? (Note it is not physical support, she can eat, walk, talk). I will add that my daughter my daughter has restrictive practices in place, if her support hours are cut, this will mean she would need to move home, (to my house) & unable to live in SIL. Our family home is not the best place for my adult daughter as her behaviours impact on our relationship with her & while she doesn’t live here, we have a healthy relationship. Apart from my family & her support workers my daughter doesn’t have any friends (only online but she needs face to face friends). My daughter is already isolated due to her disability & with less support she will be further isolated. I am not in the financial position to care for my daughter as I need to be earning income for our family.
What I believe this Bill gets wrong
The NDIS does not need to be made harder to be approved for! It is hard enough now to get the funding that people need. My daughter has already been rejected for things recommended, so making it harder to be accepted & get the support people need will result in HARM.
It fails to see disability & support as an investment & when people are well supported, they thrive. Decreasing support & implementing more rules, will result in more hospital admissions, longer stays in hospital & great HARM to the most vulnerable people in our society. Disabled people will have a much lower quality of life & you’ll see deaths & serious harm. When people receive GOOD support they thrive & all areas of life are improved, they progress & end up needing less support (not all people but at least some).
- What needs to change or be protected
PROVIDERS need to be more accountable. Implement CAPS on admin fee’s. CAPS on any charges simply because it’s “NDIS”. The government have set out a price index & that has driven up the cost. Companies are PROFITING off the disabled.
Submission 2075
If any company is being used for NDI$ funding in regard to support, they MUST BE registered, do training and prove they are legitimate. Support workers should be TRAINED & qualified that would be more “value for money” it would weed out those that just want a quick buck while they sit on their phone rather than quality support.
Stop making clients prove over & over their DISABILTY.
Stop making clients have functional reports UNLESS the NDIS are willing to implement the recommendations in the reports & FUND it. Reports mean nothing if nothing is implemented, a better idea would be to have a functional report done every 10 years &$ sooner if change in circumstance.
Allow FAMILIES to be PAID to care in place of support workers if a family would like that. THIS would save money. Some families would care for their loved one, if they were paid properly, rather than companies who charge hourly rates and skim funding.
Participants plans MUST be reviewed by real people. These people should have a good understanding of disability & complex needs. This should NEVER be automated as every person is unique. Not only that, but there must also be avenues to appeal decisions. The NDIS would SAVE money if many people didn’t need to APPEAL their plans & be rejected for requesting things that will help or be recommended by a qualified professional.
- Final statement
I ask the committee to consider my lived experience when reviewing this Bill & eject the changes. Disabled people are already disadvantaged & this Bill will make their lives harder & is taking step backward. Harm will be done to the most vulnerable people in our communities.