A legally blind mum has been left without any funding for a carer after a five-month saga involving the National Disability Insurance Scheme.
Erica Bartlett, who grew up in Corowa and now lives in Wodonga, was diagnosed in 2011 with sarcoidosis.
"It can attack any system in the body and at the moment it's attacking my eyes, lymph nodes, lungs and nervous system, and to a degree my heart," she said.
"My eyesight has been deteriorating over the last seven years, and in the last two years has dropped a lot, to less than 10 per cent.
"I'm on immunotherapy to try and stop this disease attacking my body, but we're not seeing big improvements, so there's quite a real sense of me losing all of my sight."
Mrs Bartlett needs somebody to be her eyes when her husband is at work - but wants to remain an active part of the lives of her three children, who are all under six.
She was able to have this with a self-managed NDIS plan secured in October, 2018.
"When I initially started my plan was NDIA-managed, which is where you use approved carers and they control all your money," Mrs Bartlett said.
"Quite generally you get different people every time with these providers, they have a lot of rules - that first year was really up and down.
"I changed providers about four or five times, before I realised I needed someone who I could trust.
"In my second year my local area co-ordinator helped me become self-managed.
"That made all the difference; I had control over who was coming into my house and being so apart of my home."
A lady looking for work as a nanny and a cleaner helped Mrs Bartlett find her independence.
"She would drive us to school, so I could talk to the teachers and let them know why my child might be acting different today, because home's not been a happy place," she said.
"Then we would go to physiotherapy - I also do hydrotherapy which helps with a lot of my health conditions - and we'd go to the shops, which I love.
If I don't have someone to take me out of the house I don't see anyone.Erica Bartlett
Mrs Bartlett's deteriorating eyesight and other health conditions led her to request an increase in funds and a plan review in March.
"When I was given my plan in October, they said 'You've missed a few things, if it's not enough we'll just do a review - it's a really easy process'," she said.
"I'm a type-one diabetic, but I cannot see my blood glucose monitors, so I was wanting to fund continuous sensors which communicate with my phone.
"Things like that weren't in my first plan."
Mrs Bartlett was sent a letter dated April 29 advising of approval for a plan review, and that she would be contacted.
By the end of May, the 27-year-old was wondering what the latest was. She was told that the processing of the approval was "in progress".
But by mid-June, Mrs Bartlett was running out of money.
"I had a certain amount of funds left and I had to toss up whether to have my care worker or have a cleaner to come in for two hours a week for us to get by," she said.
"When I ran out of funds I was ringing the NDIA nearly every day and getting the same answer, 'It's in progress, we'll be in touch'.
"I was going around and around in circles, so on July 2 I made a formal complaint.
"I said, 'I got approval on the 29th of April and I have not heard from you - I am legally blind, I have run out of funds, and I have no support - what else can I do?
"That was good, but I couldn't believe that I had to do those things and threaten to go to the Ombudsman for them to actually give me a response."
We're living in a bit of chaos and it's rocked us to our core.Erica Bartlett
On July 11, a person "trained in unscheduled plan reviews" came to Mrs Bartlett's home. She took copies of the approval letter - which previously nobody could find on the system.
"She emphasized all these things were missed in my last plan that she wanted to include, and said she'd contact me," Mrs Bartlett said.
"The following week, I was asking 'Where is my plan at?', and I was told it was with the delegates.
"Then it went from 'Within the week', to 'Any day now', to 'No timeframe'.
"I'm usually someone who copes with these things, but I was becoming a person I didn't recognise."
The seven weeks Mrs Bartlett has been without support has taken its toll.
"I haven't been to the pool to do my hydrotherapy, and I choose not to go to the doctors or bring up things that need to get done," she said.
"I'm still coping with the fact I'm not seeing things that I used to.
"The stress that's added on my husband when we don't have that support available is unbelievable, and it reflects on all of my family.
"My mum wasn't working so she could help me, and that's income lost.
"We're living in a bit of chaos and it's rocked us to our core."
An NDIA spokesperson said the agency had been in contact to apologise "and regrets that (Mrs Bartlett's) experience did not live up to the standards to which the Agency aspires".
"The NDIA has approved a six month interim plan for Ms Bartlett to ensure she continues to receive the disability-related supports she needs. The interim plan also includes funding for assessment of any additional requested supports.
"The NDIA will continue to work with Ms Bartlett to address any concerns."
Mrs Bartlett last week had an implementation meeting for her interim plan.
It will cover what she needs except for the assistive technology to monitor her diabetes.
"My interim plan will cover me until I am able to have my assessments done," she said.
"And now I have to give thousands of dollars towards a plan manager for a job that I was doing.
"I am happy about this result, but I am seriously disappointed that it has taken this long. I've already been in this process for five months - I shouldn't need another six months of an interim plan.
"The worst thing is, I'm not the only person in this boat."
Since sharing her experience on Facebook, Ms Bartlett has been inundated by experiences similar to hers.
"There are so many other people who are being affected and have said to me 'I just gave up because it's too hard'," she said.
"That's not what this is supposed to be, the NDIA is meant to be supporting these people
"I think there's a person behind a desk making some really bad decisions about the NDIS, and they need to start thinking about the people lower down the line."