Opinion | 20 June 2024

NDIS participant is “terrified of the consequences of the bill”

Scott Harry has dark hair and wears glasses and is in his wheelchair

Scott Harry is an NDIS participant who is concerned that if the NDIS Bill goes through, the government will be able to implement the NDIS Review recommendation that said people who need 24/7 support should be funded at a ratio of one worker to three participants. He is calling on all of us to take action.

My name is Scott, I am 48 years old, I have Duchenne Muscular Dystrophy, and share a house with my brother Daniel who is 46 and has the same condition. We require 24/7 physical support, as we are on assisted ventilation full-time, and our physical strength limits our movement, so we are only able to move our fingers to operate a mouse and drive our power wheelchairs.

We share a house in the suburb of Taigum, in Brisbane. For the last 11 years, Daniel and I have lived a happy and full life thanks to being given the opportunity to self-manage our disability supports. By self-managing, our support costs are $416,000 cheaper than if we engaged a service provider. Daniel and I are great examples of the lives people with disabilities can live if given the right amount of support, autonomy and freedom. Please view this video that explains our journey.

The housing & living supports section of the NDIS independent review defines 24/7 living supports as participants who require at least 8 hours of active support and some level of support for the remaining hours of the day and overnight support whether active or passive. It states that participants must share support at a ratio of 1 to 3 that is one worker to three participants. Having advanced Duchenne Muscular Dystrophy and being on 24/7 mechanical ventilation, it is not humanly possible for 1 worker to provide the support I need, as well 2 other people who need 24/7 support. Whoever came up with this model has absolutely no idea what they are talking about and definitely do not have an ounce of empathy.

I lived in a house for 5 years where I had to share supports with 3 other people, I had no choice of housemates, no choice of workers, I was abused & probably would be dead by now if I had continued living there. I have now lived in a Department of Housing property for 11 years, with my brother, where we self-manage our disability support. I have lived both different models of support, & I would rather be dead than live in a group home. The group home I lived in there were 4 participants and 2 workers (1:2 shared), & the only times we went out was for shopping & medical appointments. If the ratio is the 1:3, any resemblance of a normal life, will come to an end. The proposed 1:3 shared support model promoted as a guideline to funding is wrong and will destroy any possibility of opportunities for social and economic participation for people with severe disabilities.

In The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with a Disability: the Report (Vol 7, Part 3, Chapter 9.5, p.639), it proposes there is a roadmap to phase out group homes within 15 years. There is ample evidence of the risks and abuse that has occurred in congregate care settings, so why would an independent review even suggest to bring in rules that would force people with disabilities into congregate support and violate The United Nations Convention on the Rights of Persons with Disabilities?

I can tell you now the only way I am moving out of my home where I live now is in a body bag. Even if my brother passes, I’m still not moving and am not going to live with anyone else, unless I choose to. And if the NDIS will not fund the support I need, my death (and the future abuse and death of all people forced to live in congregate care) will be on your conscience, because you let the government gut the NDIS on your watch.

This is a passionate appeal to anyone who is involved in the NDIS bill, your decency as a compassionate human being and to do what is right by your fellow man. I am terrified of the consequences the current bill before parliament will have on the rights of people with disability and the support, they have a right to. Please write to our Senate and help us stop this nonsense.

If you, or someone you know needs crisis support, call Lifeline on 13 11 14


Join the conversation