Left in the Dark
By: Carolyn Weston QSM
DUNZ Invercargill: 13 May 2024
I was born with a rare condition, causing me to have brittle bones and be legally blind. Since I was a child, I have experienced a number of fractures. In 2021, when I had a major fall, I broke both my ankles and two bones in my right arm and also had several minor fractures. Nowadays, I walk inside my home with the aid of a walking frame.
To obtain my disability support services, I receive Government (Individual Funding). This money is sent to my Host Agency, who pay my support workers, who I employ to assist me with various tasks and activities. Due to unforeseen circumstances, such as staff leaving and finding a replacement, I don’t always use my annual budget. Last year, with some of the residue of my funds, I purchased a new magnifying lens for my reading glasses as the old lens was overdue to be replaced. I also upgraded my computer screen reader. Adaptive technology to enable blind people to use computers, etc., can be very expensive. I felt satisfied and rewarded that I could independently purchase this disability-related equipment.
On 18 th March 2024, the Government announced changes to the rules around funding disability support. These changes were made without any consultation with the disability community and no thought was given to how these changes would affect us.
As I recently had to replace a support worker, I know there will be some residue in my disability support funding, and I was going to purchase a new walking frame because the one I have is unrepairable and worn. I need a tray on my new walking frame because when I carry things such as cooking or baking containers on my current walking frame seat, the containers slide off and hit my legs or feet. The walking frame I require would have cost me $330.00. But now, due to the Government’s thoughtless rule change to my funding, I can no longer purchase my own walking frame.
Four weeks ago, the woman who works in the local Disability Equipment Shop sent a form to the Southland Hospital therapy department requesting that they replace the walking frame I have. You may think this solves my problem, but it doesn’t really. I have no input into the type of walking frame I need, no option in what colour I may like and more importantly, no idea when this walking frame will arrive at my house. It will just arrive.
I am angry, insulted and in despair that I am not being treated as a responsible adult who can make informed decisions for myself. New Zealand’s Government has signed the United Nations Convention on the Rights of Persons with a Disability, meaning I have the same human rights as all other New Zealanders. I should be allowed to make my own informed choices over what I purchase and where I purchase disability equipment from. Talk about monopoly!
Since 1991, I have served and continue to serve on several governing boards. For 7 ½ years, I worked in health and disability ethics, and now I am treated without respect. I want to be able to purchase my own disability equipment (with the checks and balances there were) without people telling me what I can or cannot purchase.
Nothing about us without us.
Last Updated 13/05/2024
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