I am writing as primary carer, main informal support, and a nominee and Enduring Guardian for an NDIS participant.
The participant, although non-verbal, is able to communicate in writing, in a non synchronous way. She may take a week or more to write down what she wants to say to a health professional- and have zero capacity to engage with them via telehealth or home visit.
She is an amazing articulate, intelligent, resilient human being, but her physical challenges are unrelenting, complex, and heartbreaking. Her needs, like all participants in the scheme, need to be treated with respect, dignity and inclusion.
This person’s functional capacity is minimal, so I am confident that her funding will continue, though I am unsure if it will continue to meet her needs into the future. It would be good to have some certainty around planning for her future.
The person is bedbound, one hundred percent of the time, and needs personal care assistance for all ADLs. She cannot leave the bed , she can not transfer without a hoist, and that very rarely and causing lower capacity for days.
She lives in a hospital bed and is able to roll in the bed on a good day. During some periods, she needs to be assisted to roll from one side of the bed to the other through day and night.
I am a sixty six year old informal carer and mother to this twenty nine year old participant, who will need full time care when I am no longer able to care for her. When both myself and my husband are deceased, she will have her own home and ideally will be able to be cared for in that home. There are no informal carers other than myself, and none that will be able to step up to that role in the future. Even just the admin of her life is HUGE.
Part of the person’s condition is sensory sensitivities. She lives in a darkened room with a sound lock that keeps noise away from her space. She wears noise cancelling headphones 24/7, except for a brief period at midnight when she charges the headphones (or a carer does if her capacity is lower again). In addition, she is very sensitive to smells, and has been diagnosed with multiple chemical sensitivities.
Ideally, she should be able to live in her own home with 24 hour care, as sharing accommodation with other participants seems impossible. Even without considering the cuts and tweaks being made to the scheme, this future doesn’t seem to have more than amorphous and frightening form.
Some of my concerns apart from being forced to live in a group home situation rather than with a friend:-
She is fully continent of both bowel and bladder, and is helped on and off a bed PAN, with carer cleaning up.
A concern is that in future she may be encouraged to live in nappies and not have the
dignity of continuing to be a continent person.
Whenever she is able , she currently has a bed bath with a bucket, as we don’t have an accessible bathroom as yet. In practice, she only has capacity for this twice a week at most, fully provided by her support team. . Bedbaths have been her option for hygiene for 5 years.
She cannot be left alone due to safety concerns, as she could not escape her bed in an emergency, or call an ambulance or fire authority.
Her disabilities mean that she cannot safely share space with other participants.
Choice and control? Reasonable and necessary? The future looks dark.