Submission 2618
My name is , I live in the blue mountains and am a carer for my son who is on the NDIS. I tried to submit this on the parliamentary website but have not received a response or acknowledgment that it has been received. The website was having lots of technical issues and I am concerned with the NDIS BILL and the ridiculously short timeframe that was given to respond to it. I am also concerned that some peoples submissions are not going to be counted as they are not showing up on the public list and they are not getting any acknowledgment that they have been received. This includes my submission. I am writing this on behalf of myself, my children and advocating for all the current carers and NDIS recipients who have not been able to do this themselves due to their disability and burnout such as carer burnout and autistic burnout and other disability conditions which make this process difficult. Some participants I met have not even heard that the bill was proposed and are asking why there has not been media coverage, longer timeframes, consultations with disability community and staff.
I am writing to inform you that the NDIS reform Bill needs to be withdrawn. Any changes to the NDIS should not come at the cost of the wellbeing and safety of disabled people and our families, carers and should not create further barriers to equality or autonomy. We are already living with so many barriers.
The whole NDIS Bill and it’s changes to the NDIS needs to be withdrawn. Aged care and NDIS eligibility and supports should not be determined by computer systems. Or by a Minister who wants to have powers to do whatever they want with no meaningful input by participants and their carers who have lived experience,with no input by medical experts in specialist fields and no meaningful input by social and community workers and therapists who work within the field. Contrary to the governments rhetoric the NDIS is already very difficult to get accepted onto.People who are on the NDIS are people who need supports and are vulnerable members of the public who deserve to be treated with dignity and respect They should be supported to live as best they can with their conditions and symptoms with the ongoing support of the NDIS as it stands today. They should not be reduced to a financial cost. The process of being accepted onto the current NDIS requires professional assessments and diagnosis by skilled medical experts and takes time, effort and money. As does functional capacity assessments. A lot of people on the NDIS have other co existing conditions
Submission 2618
which are also present on top of the NDIS condition that they were accepted with. People will not become less disabled because of the proposed changes in the NDIS Bill. They will still need supports and so will their families and carers.
The proposed NDIS Bill and its changes to the NDIS has been set up in a way that will cause harm to existing participants of the NDIS and potential future NDIS recipients. It is also been set up and disclosed to the general public and disabled NDIS participants and their families, carers and supports in an unfair and unrealistic timeframe. This very short timeframe does not give disabled people and overworked carers enough time to find out what is happening, assess the proposed changes in the bill and then express their opposition and concern. On top of this the portal is not working and not letting submissions through.
The minister should not have powers that allow him to make sweeping decisions.Especially not to cut whole sectors of supports, cut whole sections of diagnosed people , to cut people’s plans, to cut people’s community and participation supports and make decisions on what supports people are allowed to use. The idea of block funding and evidence based therapies chosen by the minister to be administered to whole sections of participants in unfair and unreasonable. Medically trained experts have the skills and knowledge to assess, diagnose , perform functional assessments and recommend supports and therapies specific to an individual’s needs.
The shift to parental responsibility is also unfair and unreasonable. The penalty of being kicked off the NDIS if the participant does not get back to the NDIS within a week if they call is also unfair and unreasonable. We are talking about people who are living with a disability. The notion that a disability is not permanent and needs to be proved every year is unfair , unrealistic , unaffordable and unreasonable The idea that a person should have tried all reasonable treatments before they are eligible as decided by the minister regardless of the affordability of the treatment, the inaccessibility of the treatment due to location and the capacity / ability of the individual to get there due to their condition is also unfair, unkind, unreasonable and unrealistic.
The proposed use of I -CAN or any computer generated system/ process with minimal human input CANNOT successfully perform the functions of assessing a person’s individual diagnosis, capacity or support needs. Trained medical practitioners need to perform these as all disabilities are individual and so are a
Submission 2618
person’s individual symptoms or presentations of their condition. Also the treatment of their symptoms and conditions is experienced and presented differently in each individual and can fluctuate .It cannot be assumed that one individual will benefit from the same treatments or supports as another with the same condition or diagnosis. This is where the current NDIS choice and control are so important so that a person can choose a support worker, support therapies, supports for community and supports for home that will be of most benefit to themselves. Not just supports that are arbitrarily forced upon them by someone who has no skills in the field and no personal knowledge of the individual and their complex and nuanced support needs. Or worse yet by a computer programme such as I CAN. There needs to be an appeal system left in place and there needs to be meaningful human oversight where nuanced and complex needs can be examined included in the NDIS plan for each individual,. This includes reading and taking advice from experts and medical practictioners and social workers and health professionals, individuals themselves and their carers and families who live with this disability.
The current structure of the NDIS funding and in particular flexible funding options enables the participant to use the funding as they need to and results in the NDIS participant functioning at their best so that the NDIS participants can have a chance at living a life. Many participants have fluctuating capacity and their needs and abilities change. It is their carers who are working tirelessly, invisibly and unpaid in the background. The proposed changes will have devastating effects on the participants and their carers, who are usually women.
My son is currently on the NDIS and it has changed our lives for the better. Before we received the NDIS we were at breaking point. It has helped us in so many ways and after being on it for 1 year we are seeing real changes. Changes are often small but have a huge impact on our lives. We will be devastated if the Bill goes through. WIthdraw the Bill and the proposed changes.