Dec 14, 2021

Doctors’ advice rejected: NDIS money and 24-hour care to end for woman with Parkinson’s

Woman with Parkinson's NDIS cut

Kim Barnes of Geelong, 61, needs support to walk, eat, stand and use bathroom facilities. 

The ABC gathered documents showing doctors for Ms Barnes caution NDIA assessors that she is at “high risk” for events such as falls, choking and aspiration.

Ms Barnes is noted to have fallen 27 times during the past 12 months due to her condition, one medical report reads.  

“Kim recently fell in the night whilst going to the bathroom and was not able to access support until the morning, when one of her care team arrived,” one of her doctors commented to the NDIA.

“Kim needed to be transported to hospital and admitted for a day.”

“Kim lives on her own and it is important that a care team supports her [on a] 24/7 roster.”

A further member of her team, a treating clinician, assessed that Ms Barnes’ ability to swallow had significantly reduced, “confirming Kim’s risk of aspiration and choking”.

Constant care doesn’t pass ‘value for money’ test

However, the agency dismissed the medical advice presented and queried if Ms Barnes’ application for higher funding – to cover the costs of 24-hour care – met the NDIA’s “value for money” criteria.

She continued, “I’m scared I’ll end up in aged care.

“It’s too young. I’m too young.

“It feels like I’m worth nothing.”

Scrambling to figure out what to do, Ms Barnes said she had no other option but to use a smaller amount of NDIS funding to cover her immediate 24-hour care. 

However, this means in two weeks the money she has been currently allocated will run out, three months prior to the upcoming round commencing in March 2022. 

Ms Barnes conveyed that she will not be able to cover the cost of her carers until then. 

Jude West, one of Ms Barnes’ carers, noted that Ms Barnes “wouldn’t survive” without care workers present 24 hours a day. 

She recalled, “When I first started working with Kim, she was quite independent. I would only go a couple of times a week.”

Ms West added, “She only had a couple of carers but, as it [the disease] has progressed, we’ve had to progress with our care for Kim as well, hence the [need for] 24 hours’ care for Kim.”

Emergency appeal initiated

Working on Ms Barnes’ behalf, Rachael Thompson, a disability appeals advocate, has lodged a request for an emergency direction hearing in the Administrative Appeals Tribunal (AAT).

She commented, “There’s no guarantee what will happen at the directions hearing, but we will be pushing for there to be some kind of interim funding put in place so that Kim can remain, with the supports that she needs, to be living independently at home, where she wants to be.”

Highlighting the trend that is starting to appear, Ms Thompson, who is employed by the Rights Information Advocacy Centre, noted that NDIS funding cuts seem to be becoming more frequent and subsequently AAT appeals were rising. 

She said, “It really does seem we are at crisis point now.

“Most advocacy organisations across the nation have really long waitlists.

“Matters can go from between six months to two years and often legal support in these cases is limited due to the resources of legal aid being restricted.”

Evidence insufficient, NDIA states

The ABC posed questions to the NDIA regarding Ms Barnes’ case, particularly whether they had seriously considered the recommendations of her doctors.

A spokesperson replied, “The NDIS continues to provide disability-related support to Ms Barnes, including a significant level of core support funding to give her choice in how she wishes to be supported in her daily life.

“During the planning process, the agency will review all information provided at the time and make decisions on reasonable and necessary supports. These decisions are always made in accordance with the NDIS Act.

“Up to the time of the last plan review for Ms Barnes, insufficient evidence was available to show that the requested supports met all criteria under the act.”

NDIS Minister ‘in witness protection’

Further trying to seek out answers, the ABC also recently requested to meet with and interview the Minister for NDIS, Linda Reynolds. 

The broadcaster found her to continually decline to comment and or to be interviewed.

A recent statement from her office regarding the NDIA and this case reads, it “will continue to work closely with Ms Barnes at this difficult time, to ensure that she receives the disability support that she needs”.

Bill Shorten, Labor’s NDIS spokesman, pointedly assessed the minister to be in hiding. 

He said, “A minister who is in witness protection from the media about a story of such plain injustice and terrible treatment to an individual isn’t fit to be a minister.

Commenting on Ms Barnes’ case and funding, Mr Shorten said there was no question her medically recommended 24-hour care should be covered.

He continued, “I think it is shameful.

“Parkinson’s is incurable.”

“The NDIS was designed to help people in their daily living. It was about helping people live in the community for as long as they possibly can.

“I think it is outrageous [that] the government complains about the cost of this lady’s treatment, rather than worry about the quality of the remaining time she has.”

In deciding to come forward, Ms Barnes wanted to allow her story to showcase some of the obstacles NDIS participants had in terms of accessing needed and appropriate levels of funding.  

She said, “We are human beings … I think I’m still intelligent.” 

Adding, “They need to walk in my shoes.”

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  1. I hesitate to point out the obvious but the system just can’t afford one on one care for thousands of people with various needs and wants.
    We have to turn back the clock a bit to when our family took responsibility for each other, today it’s just too easy to put your hand out for help. The alternative is group accommodation for like ailments in an age specific facility.

    We have all read where family members are getting paid to mow pops lawn or take gran for a coffee etc. Shameful behaviour and this rorting will see the end of the system and the genuine people will be worse off.

    1. It’s actually cheaper to have the 1:1 care in the home than to have people in facilities.

      The only time family get paid to assist is in extreme circumstances. It’s avoided as much as possible but in rural communities specifically, there are little to no services available.

      Not all of us have family or family that can help.

  2. As a family who also requires care 24/7 (all 4 of us are NDIS participants), have been refused and had to go without any paid supports once the funds got used up, I understand the strain and poor quality of life that Ms Barnes is facing and it seriously scares me that she will be going through that. I am scared for her quality of life and how close the end of her life may become as a result of insufficient support.
    There just aren’t enough community services to pick up the pieces. Many can’t help when there is NDIS funding available, there is a wait for those services to start when there is no NDIS funding and they also aren’t capable of providing enough support once they are in place….that’s if you can get in in the first place!
    24/7 supports in the home is more “value for money” than care facilities and has a much better outcome for most disabled people.
    It is sickening how many people are getting cuts to their plans, especially when so many are underfunded already. Then sending very vulnerable people into legal battles after constant battles with the NDIA in the first place… it just should not be happening. Oh and most get a giant cut in the next plan review after going to the AAT, so they have to go back again and again. It’s appalling! The few that rort the system should not be preventing the majority of us to get much needed supports in place.
    Ms Barnes, I really hope you will be okay and the NDIS does not cause you an early demise 😔


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