NDIS Submission
I wish to submit objection, concern and uncertainty about the proposed changes to the NDIS bill.
I am a family member of an NDIS participant. My family member is a 54 year old disabled man with Intellectual disability and autism.
My Uncle comes from a generation where disability was shameful, not discussed, denied to exist and hidden away. Due to this, my Grandmother had cared for him without complaint, fuss or support for the first 50 years of his life. This cohort of disabled people are not uncommon.
As my grandmother has aged, she is no longer able to care for him and we have gone through the difficult and arduous task of obtaining him NDIS supports- these only began in 2021.
My Uncle did attend special school as a teenager & lived in a group accommodation institution to access this as my family comes from a regional area. Due to abuse experiences at this home he has a chronic fear of men, strangers and being out in society, this trauma combined with his disability results in a man who relies on support workers to access community and will not engage in any group programs, will not engage in anything to do with “strangers”.
His fear of strangers meant that finding him support workers to match was a huge feat, taking 6 weeks of them coming to support him and being unable to enter his home. 6 weeks of hard work on their part and ours to finally get there. If this choice and control is removed from people like him the impact is phenomenal and not a process I wish to repeat, not one I am entirely sure we can get him through again.
As his family, we have worked very hard for him to live in his own space with strong support in place for him to do so- in fact he needs more support not less to remain there as he ages!
This man is 54, unable to function outside the walls of his own home without support, everything from shopping, haircuts, Dr appointments, ANY outings even visiting his ey elderly mother requires a support worker to assist him. Individualised supports are the only way he functions, groups or standardised programs are something that have been tried and failed DUE to his disability. We know what works for him.
His trusted support workers help him manage most activities for his daily living & family does the rest. Family input is at maximum capacity already and the proposed changes and uncertainty of what is to come is truly terrifying.
My Uncle is unable to function in a digital world, struggles with even a home phone, finding his way around a smart television etc. he can not manage navigating society without support for social & community access funding. Covid was a nightmare for us
as we needed to move him across from using cash to digital money, and this alone took at least a year of support worker/family assistance to achieve. Things a non disabled person takes for granted are very difficult for him.
I have real concerns about the changes to how someone’s functional capacity is proposed to be assessed and how removal of community access will impact my family. How does a standardised test highlight individual need for NDIS decision making if it does not take into account the whole person? His world? His past trauma at the hands of Institutions? The reasons why his disability and functioning are the way they are?
I do not have the capacity to step in and fill the gaps in his care (there are already many!) if he loses any of his supports. I have real fear he will end up unable to leave his home, he can not function in society without support and he will ultimately end up in care - which brings a whole new set of stressors and costs.
I am his niece, not his mother and I already quietly do the role of a support co-ordinator, support worker and advocate all unpaid for my uncle as family are already considered free care. I do all this while working full time and raising my own family, often putting their needs second to my uncles due to necessity.
My own son is extremely unwell and in & out of hospital, leaving me extremely stretched thin. Carer burnout is real and I am almost there.
The thought of him losing the supports that I have had to advocate so hard for is absolutely devastating, and leaves me wondering what happens if I step away? What will happen to this entire generation of disabled people in their 50’s who began life sheltered by their parents, those parents are elderly now, where does the care for their children come from if family can’t? Does my uncle become a burden on the Government, Institutionalised regardless of his past trauma? Does he become homebound with nobody checking in on him or even noticing he is there? Where are the care homes for disabled people that have no support to stay in their own homes? Will he end up homeless in the streets?
I absolutely can not give more than I already am and the unknown of what is to come leaves me totally overwhelmed & speechless. This is not to mention if something was to happen to me, where does that leave him?
Please consider all scenarios of reassessment very carefully, as ones like mine with a disabled person in this age bracket will most likely have catastrophic results.
Families can only do so much, and often the supports ALREADY in place are not sufficient to ease their burden. Piling more care onto them will be the final straw for many and will leave older participants isolated and alone.
I look forward to your contact if more information is required.