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Submission SUB-B6M7-000602 (Anonymous)

Submission reference
Submission type
General submission
What are your three main problems or concerns with the NDIS?

Larger NDIS approved ( or the small ones that suddenly grew from self employed to business) not checked on. They seem to make ( yes) clients do things to suit their organisation not what the client needs or wants.
The number taking significant funds for clients and little ( my brothers case) no support or anything in exchange.
Not accountable for clients well being and supporting with appropriate services.
2 nd- it seems unless you agree to be plan managed and more so agency managed unfair funding allocation. Parents and Carers of self managed seem to be discriminated against when applying for funding as they are not given all the same terminology and information to apply for funding ( funding review). They feel pressure to be plan or agency funded. However they just want to ensure they get right funds to employ best person for their child or significant other.
3 trying to get on to NDIS is heartbreaking, time consuming and frankly missing the people who need it the most due to literacy levels or lack of information they are at mercy of others to supply information which is expensive, often the places don’t fill in inform and many other issues.

How do these three main problems affect you and/or others?

y brother has been on NDIS for over two years. At the start we ( in agreeable with my brother) explained that my mother ( elderly) and I need to be contacted and his nominee. We explained due to mental health when he is most vulnerable he gets paranoid and we need to still be part of his plan regardless of what he says. Yet we were taken off. So the two years plus not ONE service he is now technically homeless. He is “ living” with his girlfriend who has bipolar and schizophrenia like him. And when she unstable is abusive and violent to him. So homeless, in DV situation, serious medical physical health issues not being addressed. Most likely unmediated, not having proper nutrition, driving unsafe car as the one call to his provider said he can. Yet family have no contact numbers unable to be told who he is meant to be linked in with. No services NDIS or otherwise.
But we are the ones made to feel we are intruding on his choices. He has comorbid illnesses ( mental and now addiction thank you very much NDIS) extremely ill not sure what but assuming possible cancer, lung or something but won’t tell us so we don’t worry about him.
Friends mother 60 has been in hospital waiting weeks to get NDIS. She lives near her daughter. They have personally spent thousands dollars making house safe as she has dementia to be told she can’t stay in her own place. She can for a few weeks but will have to go in a group home. She needs 1:1 and will get that in the comfort and familiarity of own place. Yet told when place comes up will have to go in group home 3:1 care. She is a lady who has worked hard to have her own place to be told she can’t have that option.
Friends son has set up own gardening business with a mentor. It has grown more than ever expected. It one initiative ( generally seen working) community supporting, making good money and self esteem has improved. Yet his mother was told by LAC he should be fully independent in 6 months and won’t need a worker with him. That is absurd. Yes if he was mowing lawns and that’s all. But they are doing more than that. Last week he wrote our own invoice and gave it to person all by himself. That little contact has taken 3 months. This service is giving low income and ndis people affordable gardening. Not just mowing but veggies put in, fences fixed so dogs can’t get out, etc. in 6 months he expected to run it on his own or not hsve funding for his worker/ mentor. Yes he will be self sufficient but it will take time and not in every aspect. But this 19 yo is so proud as he has his own business helping out those who can’t do their own garden.

What do you think are possible solutions to those problems?

Do as NDIS was planned access people as people on an individual basis not as generic need.
Listen to clients and families. Include families. If staff took time you would soon know families who generally care and ones out to scam the service.
The scammers I have come across are more theNDIS registered ones. The bigger ones who see people as money not individuals.
Include education reading and writing. I am working with so many who now age 20, 30, 40 plus ready to learn to read and know what’s going on. Yet I have to do that as part of social or life skills.
A lady who genuinely needs massage no Not as she been told OT as she has had a stroke. Can’t get it despite having person trained and understands her needs. She can’t afford to have her otherwise would pay but being on a pension can’t afford it even at the highly reduced rate. Because her LAC says no. I
This service for her body pain and help her movement will be as much if not more beneficial than getting an OT, Physio and other Therspist and cheaper.

What parts of the NDIS are working well for you?

Working directly with families as self managed. Can be flexible and adaptable with times that work for them.
Whilst qualifications are important and I have degree and half way through Mental health cert 4. I think some people without qualifications fine. But I am on the same pay as someone never worked in disability. There should be a pathway ( not ndis) as support worker is becoming devalued as you don’t need specific qualifications when really should be highly skilled. A mentor program or ndis could provide regular face to face day courses to get accredited especially first aid.

My brother absolutely nothing it is causing more stress in our family. If anyone just mention NDIS he walks off.

Is there anything else that you would like to tell the NDIS Review?

Like education department NDIS is now place for those who have family willing to go in and fight for their rights. Only accessible for the highly literate and those with money to get the specialist reports.
As usual the most impacted are slipping through massive gaps.

Every person has different information . It’s not consistent with acceptance or funding but it also makes sweeping generalisations.
Reduce the need for OT and psychologist many never meet except the one time to write their report. As people seem to get funded on how good they are at writing report and not what the person really needs.