National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Submission 149

To whom it may concern,

My name is I am a full time carer to my son who has level 3/3 autism, global developmental delay and is in the process of being diagnosed with an intellectual disability.

Between his first NDIS plan (June 2022-June 2023) and his second plan (August 2023-August 2024) there were significant changes to available funding, we did have community access which allowed my family to have a support worker come into the house or take out for the day while we enjoyed a small break from the utterly exhausting work that is providing 24/7 care to my son.

His current plan has no community access budget at all, I was not consulted on this in any way shape or form.

He has assistance with daily living funds (which if you google it, it says these funds can be used for respite) despite the vigilant efforts of myself and my support coordinator we have been unsuccessful at being able to use these funds in any capacity, between the NDIS, peak plan management and the respite centre we cannot get a coherent answer as to what we can use these funds for without potentially getting a bill for ‘misuse of funds’. We are quickly burning out and may need to look into a dual living arrangement between ourselves and a care home if we cannot get some support in this area.

Furthermore, we cannot access certain items that we once could with our consumable’s budget, my son has significant continence issues (both urinating and voiding his bowels) several times a day wherever he may be (it’s not at all unusual for him to void his bowels 8-10 times in a day and smear it on the walls and floor and himself) we use large amounts of wipes (both baby wipes and disinfectant wipes) large quantities of floor cleaner and an incredible amount of toilet paper to maintain a clean and hygienic environment, of late, suppliers have been either cancelling our orders (due to having ‘everyday’ items on the list) or asking that we pay for these items out of pocket ourselves.

Every consumables item we buy are everyday items (bleach, floor cleaner, toilet rolls, baby wipes, nappy bags, laundry powder etc) we use significantly more of these products (I estimate 4-5 x as much as a regular household) as a direct result of my son’s disability and I cannot fathom why the NDIS would not allow us to use his consumables budget for items that are directly related to disability, having to buy these items ourselves will cause financial hardship on our behalf.

Regards

        (exhausted father)