All Nina Morgan wants is quality of life and the chance to enjoy herself.
Ms Morgan, after a horse riding accident in March 2012, is a tetraplegic and like many people thought the National Disability Insurance Scheme (NDIS) would enhance her life.
However, she is now worse off.
“The new system is not working – it’s terrible,” she said.
The Falls Creek resident, along with the mountains of bureaucracy and the many faults she had to confront, said not having a lifestyle package was a major issue.
Ms Morgan felt she was in good hands with the Department of Family and Community Services (FACS) and in her 2016 plan she had funding for a lifestyle package which paid for things to make her life better and enjoyable.
“Now with the NDIS they don’t give you any of that funding and there is no lifestyle package anymore,” she said
“Malcolm Turnbull cut everything off.
“They really don’t want us to have a life and just want us to stay trapped.”
She would love to be locked in a room with Malcolm Turnbull and give the prime minister her thoughts on the NDIS.
“I feel we are like cattle going through the slaughter yard and it’s a debacle and the system is not working,” she said.
Federal member for Gilmore Ann Sudmalis is aware of the situation and is taking it up with the minister.
The Federal Member’s full statement appears below.
Ms Morgan does not want to be housebound for the rest of her life and said she had the right to enjoy life.
She also needs money for a personal trainer to help her maintain weight and muscle tone.
One word, in one of the many documents needed that needed to be filled out, cost her the use of her personal trainer.
“Instead of for my ‘improved health and wellbeing’ my trainer wrote ‘health and wellbeing’,” Ms Morgan said.
Her trainer was government approved and had been with her for four years.
Without help from her trainer, Ms Morgan’s frail body loses weight and muscle tone.
“I feel we are like cattle going through the slaughter yard and it’s a debacle and the system is not working,”Nina Morgan
She was once just over 47 kilograms and now she is 44.4 kg because she has not been able to train.
The Falls Creek resident needs to have her gallbladder removed but the operation was postponed due to the weight loss.
Her lungs also don't work properly because she is a tetraplegic.
Tetraplegia, also known as quadriplegia, is paralysis caused by illness or injury that results in the partial or total loss of use of all four limbs and torso.
She also finds working with her NDIS service provider and getting them to fix her plan to be stressful.
Her first plan was from FACS and they sent out an occupational therapist out to her home in 2016 and an in-depth report was compiled.
The plan now needs to be assessed, which is good in theory.
A local area support person for the NDIS came to her house late 2017 and stayed for a couple of hours.
“The plan was done but had many errors,” she said.
She feels she is being fobbed off and was told the review is with head office.
“I did all the work for the review way before Christmas and I was told it could take two months – well it’s been way over two months,” she said.
“I emailed it to them like six times with words like ‘emergency’ and ‘urgent’ on it.”
She still is waiting for someone to fix the plan.
Ms Morgan also went without household assistance for a period as there were no local approved helpers.
She says there is not enough approved carers to do things like house cleaning, mowing lawns and other tasks.
Carers also help prepare meals and help get Ms Morgan’s two children to school.
She was paying a service provider to provide her with a carer but changed groups because she felt she was not getting value for money.
Ms Morgan does get better care now but says with various groups which can be confusing and longs for a simple and stress-free way of getting help.
Her carers are with different groups and she thinks it would so easy if she could deal with one group.
Federal member looks into the issue
Federal member for Gilmore Ann Sudmalis is looking into Ms Morgan’s situation and also explains a few things about the NDIS like staffing and plans.
“Nina has contacted my office and I have made representation on her behalf to the Assistant Minister for Social Services to have her grievances addressed,” Mrs Sudmalis said.
“The NDIS funds reasonable and necessary supports that are related to a participant’s disability, represent value for money and are likely to be beneficial to them achieving their goals.
“A participant’s plan will be tailored to their individual goals, circumstances and support needs, providing them the services and equipment they need; helping them to live an independent life, engage with their community, enrol in education and enter or return to the workforce.
“A participant can exercise choice and control over how best to spend their core support funding with registered providers, in order to get the services they need to achieve their goals.
“In most cases, plans are in place for 12 months before they are reviewed.
“For participants who seek an unscheduled review of their plan, the time taken to complete a review varies, dependent on the individual’s circumstances and the complexity of their situation.
As at September 30 2017, 63,293 people in NSW were receiving support from 5251 registered NDIS providers.
“The number of registered NSW providers in the September quarter represented an increase of 18 per cent on the previous quarter.
The NSW market for disability supports is estimated to grow from 78,000 people in 2016 to 142,000 in 2019. Over the same period, the level of annual expenditure is estimated to grow from $3.4 billion to $6.8 billion.
“The workforce required to service this demand is estimated to almost double from around 25,000 to approximately 48,500 in 2019.”