Joint Standing Committee on the National Disability Insurance Scheme Submission

24th November 2022

Attention: seniorclerk.committees.sen@aph.gov.au

to whom it may concern,

My submission to the Joint Standing Committee is made of two parts:

A copy of my speech which I delivered at the Public Hearing in Geelong on Thursday 17th November 2022.
Exerts from a Statement of Lived Experience, this was evidence I provided to the NDIA during my AAT matter.

It should be noted that since this time, I have been advised by the NDIA via their lawyer, that ALL my supports have been agreed to be funded. We are currently waiting for a Terms of Agreement.

Therefore, I feel like we are back where we started. 9 months down the track, hours and hours of fighting for my supports and worry has led to an outcome that could have been sorted right at the beginning.

I would be interested to know how much money has been spent on lawyer fees, AAT and Advocacy funding. As I stated in my speech, a phone call to me directly to address the NDIA’s plan to cut my funding, would have given me time to respond.

I feel relieved to have won the fight, but completely and utterly exhausted.

What happens at the next plan review?

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Speech at Public Hearing in Geelong on Thursday 17th November 2022

I am here today to share with you my experiences with the NDIA and having to fight for my supports at the AAT.
This is not my first experience defending myself at the tribunal and having to defend my need for my supports. This whole experience has been drawn out and extremely stressful. It has left me scared that what I know is essential support can be ripped away and it is incredibly hard to get it back.
It seems to be designed this way intentionally so the people with a disability will give up. For someone without support, challenging a decision must seem insurmountable!
The time and effort I along with my support workers, advocates, health care team have dedicated to this process has been huge.
To go through this whole process is daunting. However, they picked the wrong person to slash funding from as I don’t give up!
Back in March this year, I had a meeting with my LAC which went well. We based my needs on my previous plan as it was working well for me. It was submitted as a 3-year plan meaning the cost was higher and it was sent to the next level for approval.
It was at this point where my funding was drastically cut by more than 70%.

I provided what I believed to be reasonable and necessary evidence to

support my new plan request. However, when I received my new plan, my

funding was a fraction of what I needed.

I felt very upset and dismayed that the NDIA were seeing me more as a budget of dollars to be managed rather than supporting me as a Person with a Disability.
They disregarded my goals and I felt they didn’t even look at how my goals

related to my funding.

Had they bothered to consult me and see how my funding related to my goals

we may have been able to come to a more reasonable outcome.

Unfortunately given NDIA current processes I was resigned to the fact this

was never going to happen.

My only option then was to embark on the long and arduous process of

appeal. Unfortunately, this isn’t the first time I have had to fight for reasonable

supports, it doesn’t get any easier each time I have to do it.

It puts great strain on my mental health knowing that this could potentially

happen every time my plan is due for review. This has left me feeling highly

anxious whenever I need to think about or discuss my NDIS plan. This is one

of the reasons I want a 3-year plan, even though my circumstances might

change, having a 1-year plan scares me.

My AAT matter is currently with the NDIA for consideration after all my

requested supports were agreed too, either by the NDIA directly or by the

Expert Independent reviewer. I am waiting for confirmation and still worry it

could all be taken away.

How can NDIA do things better?

The whole process could be simplified, our lives should not be put on hold and subject to huge stress that can last 12 months or more. The uncertainty has been frightening and that’s even with a good support network.
NDIA needs to first read the participant previous plan and take into consideration what they had and how it related to their goals.
DON’T just cut plans without warning.
The people working within the NDIA need more training around disability awareness. One of my biggest fights has been support for physical therapy which directly relates to my cerebral palsy. An understanding of this disability could have avoided all this time and stress to get these supports implemented.
Ask the participant how their plan is working for them and what changes if any need to be made. Involve us in the process as its our lives.
NDIA needs to return to a “Person-centred approach.” Treat us like humans and if you are not sure what supports should be in place, come to my home and meet me. I will help you to understand my disability and how these supports help me.
NDIA needs to be clear on how they would like information “templated” this would save the Participants and their therapists time and money, not having to rewrite reports.
The independent expert reviewer process that Bill Shorten has put in is a positive step in the right direction. I felt heard for the first time.
People with disabilities need more access to more Advocates.

If NDIA had taken the time to listen to me, this whole process could have been

avoided. The cost of all the lawyers and time taken baffles me.

Pick up the phone and call me, come and meet me, let me be involved.

Thank you for Listening.

Below are exerts taken from evidence provided to the NDIA dated 21/09/2022.

This formed part of my Statement of Lived Experience which includes

information about the treatment of me with regard to my NDIS plan.

Background

1.1. I live at home with my partner of 24 years in a four-bedroom home with 3

   children, 2 chocolate Labradors and 2 cats. My mother, lives in Stawell and her

   health is deteriorating with memory loss from dementia. My father lives in

 Warrnambool and his health (is immune compromised from cancer) has not

 been great, I only get to see him a few times a year. My parents are unable to

  provide me with any support due to their own health conditions.

1.2. I have Cerebral Palsy (CP) and use a wheelchair. My disability impacts my

   mobility and I need support to attend to my self-care routine. I cannot get in and

  out of bed each day without someone to help me. Being a mum, I have a very

  busy schedule each day. I get up early to make sure my kids are ready for

  school and do the school runs. During school  time,  I schedule  all my

  appointments, so I am present for my children when they are home.

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2. Circumstances with the previous NDIS Plan & Plan review process

2.1.

When NDIS was first introduced, I was told how it would improve my life. I never dared to dream that I would be able to go away on a family trip to visit my parents. I thought I would always be confined to the home and my local shopping area due to my disability and the need for equipment that affords me the small amount of independence that I fight so hard to maintain. However, imagine what it meant to me when it was suggested to me that it would be possible for me to go away overnight, that I could actually see my mum or my dad. For 20 years or so my only communication with my mum has been through a phone call or birthday card. The connection to my family and the ability to visit even if it’s only a couple of times a year has enriched my life and that of my children being able to visit their grandparents. This has been possible through formal support. To be given the opportunity to do something for my mental and physical well-being, to be shown that it was possible for me to do activities that would benefit my independence (has been life-changing for me.)

2.2.

My previous NDIS plan provided me with the flexibility to self-direct my household needs with regards to shopping for food, what I wanted to be cooked and when my home was to be cleaned as I can do none of these things without help. it was an absolute shock to discover that my plan was reduced so significantly, it dismissed me as a person and a contributing parent in my own family. How is it fair that strangers sitting in an office that have never laid eyes on me can make such life altering decisions that directly affect my life. Unfortunately, I am becoming quite experienced at this and I am disappointed to say that each time, the process hasn’t improved. It is proving to me that time

and time again NDIA are making a mockery of what they are supposed to stand

for and support. And that is ME, each time my plan comes up for review I literally

shudder with trepidation as to what will be deemed reasonable and necessary.

Let me be clear my life is necessary and my supports are reasonable to me!

2.3. My mental health has taken a battering through this process, I worry about the

impact this has on myself and my family. It makes me feel like I am not important

enough to be afforded even the most basic of physical activity under this

revised plan as there is limited funding for community-based activities and

capacity-building. These supports have been of great benefit to me. All the

doors that were opened and taken on with enthusiasm have now been slammed

shut again. This has had a devastating effect on my health removing my ability

to have access to allied health providers and formal support that is crucial to

maintaining my quality of life. As a person with a disability, I find the definition

of capacity building funding discriminates against me which is ironic seeing

NDIS was built to empower us. I require capacity building to maintain my

dignity, my choice and my health yet the definition assumes it will only be

required for a short period of time and not ongoing. However, in my case it is

about maintaining my ability and my health. My experience has gone from a

positive one to a devastating realisation that I as a person with a disability have

gone from being empowered to someone who by definition is not “value for

money” how’s that for making someone feel valued as a person living with a

disability!

2.4. At a time in my life when my partner’s health is failing and I am required to be

even more active in my role as a parent, my formal supports are more important

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2.5. I don’t see how I can contribute to my household and maintain any form of independence without this funding.

I implore you to consider when plan reviews are up for consideration the "PERSON FIRST", instead of cutting supports from people with disabilities take into consideration existing previous supports as reasonable and necessary, especially when circumstances haven't changed. Take an approach where people with a disability's plans are maintained and ask for evidence prior to cutting funding so that people with a disability's lives are not impacted so devastatingly without full and proper consultation, after all are we not to be treated with equity? Who knows our needs better than ourselves? Rather than us having to fight to get back necessary support, have the conversation!!!

2.6. l asks you to reconsider this revised plan as it degrades my worth as a person with a disability removing any ability to have control over my physical well-being and that of a contributing parent. I feel as if I am being reduced to being mostly housebound and the 6 hrs. a day in this current plan is barely enough for toileting and showering. I ask you to consider how you would feel if you were in my shoes. If my current funding is not increased it would be extremely devastating for me.

The importance of Support Worker hours – NDIA cut my hours from 11 hours to 6 hours per day without providing me a reason.

4.1. Having my support workers come at 7 am gives me the ability to get out of bed, have my breakfast, have a shower, get dressed and into my wheelchair. Support workers also assist me with medication as I can’t open packets given the restrictions of my CP. Being up and ready like this allows me to support my

4.2

As I have a lot of hospital & medical appointments. My support workers assist with transport, accessing buildings (opening doors, navigating steps etc.) and taking relevant notes and instructions as retaining all the information is very difficult for me. Having my support workers at my appointments gives me the peace of mind and confidence l need to maintain my health effectively.

4.3

I need my support workers on hand for assisted transferring due to incontinence and IBS. I cannot perform these tasks alone and rely on feedback to protect skin integrity. Having my support workers to help me in this area maintains my dignity and confidence, so I can be as close to normal as I can.

4.4

Now my hours are drastically cut, I am afraid I will not be able to play an active role in my family’s life. I would lack the confidence and ability to attend medical appointments. I would not even be able to do the most basic tasks as a human being like getting out of bed in the morning, getting dressed and getting on and off the toilet. All of these things, I am unable to do by myself. My support workers play a very important role in my life as my arms and legs.

4.5

This is already making me feel very depressed and worthless. I live for my family and not being able to have a lead role in their lives would be very detrimental to my mental health as I already have a lot of guilt about not being able to walk and play with my kids like a normal mother would be able to do. My support workers are crucial in making my life worth living. Without a

Section 4.6.

My partner, has stated many times he is only able to sustain helping me

ernight because of his current state of health. We have a doctor’s letter to support this and a statement from my partner. My partner needs to rest during the day so he can support me throughout the night. Without the ongoing support from support workers, I would be forced to access 24/7 care as my partner could not support me overnight.

5. The importance of Respite for my Partner – this was cut from my plan.

5.1.

In my NDIS plan, I require overnight support when my partner is unwell or 24/7 Care when my partner needs a break (weekends away). This was already in place before the cut to my funding.

5.2.

As a result of my partner’s deteriorating health, I can no longer rely on him as much for my daily needs). This is the driving factor behind requesting more hours for a support worker to assist me daily. As discussed above, our family unit is at risk due to carer burnout without proper formal support in place.

5.3.

I feel NDIA is wrong in thinking that partners of a person with a disability are expected to be able to provide ongoing informal support without impacting on mental and physical health. Providing 24/7 support for me so my partner can have a break for his own well-being given what is at stake is more than reasonable value for money considering the alternative. Yet I am having to justify a support that has previously been deemed necessary and provided!

How frustrating it is for me and for many others I’m sure having to justify

previously accepted supports when the situation is still the same!

Community Supports were cut from my plan – below is my argument for why

I needed them.

6.1. I need the physical assistance of my support workers to access the community.

I am not able to reach anything higher or lower than arm height without assistance. This makes tasks difficult such as opening doors and reaching counters or supermarket shelves. Having my support workers help with shopping gives me control and choice over things my family and I require. I feel I am contributing to my household. Let’s face it, I feel like I am already limited in what I can do for my family due to my disability.

6.2. Having community access allows me to be a part of my community and take my family out, as all families do. This gives me a sense of joy to know that with the help of my community access funding I can be like anyone else.

6.3. The weekends away are crucial to maintaining myself and my family’s physical and emotional well-being This is only possible with the help of my support workers for driving, navigating, safety, food prep etc. In the current plan I am appealing I do not understand why my community access has been taken away and I only have funding for very basic self-care.

6.4. Removing community access means I will be isolated. I can’t go shopping to provide food for my family, pay any bills as I need help reaching counters, can’t can’t buy clothes for my children because I cannot reach the racks, I can’t pack a bag or carry bags.

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Section 6

6.5.

I can’t access any of the social activities that I rely on for my mental and physical health. These include Swimming, Physiotherapist, Aerobics, Physiologist, Personal training, supported outings (going to concerts), doctor’s appointments, Hospital appointments, and Outing with my children. All of these outings I currently do with the support of my support workers.

6.6.

If you were in my shoes knowing every plan review that the hours that you have built your life around can be taken away in an instant by some stranger’s pen, with no true understanding of my situation. What the impact of this literally does altering the trajectory of my physical and mental health in a downward spiral.“What gives you the right to decide when in my life my physical health no longer warrants the funds to maintain my well-being”?

Transport Level 1 – completely cut from my plan & then offered back to me without having to provide evidence from my practitioners.

7.1.

I have a rear access van that requires a support worker to drive and operate the wheelchair lift. This along with a taxi is how I access the community on a daily basis. I require transport funding to access the community and healthcare when parking is not possible and I need to take a taxi. Access to transport funding supports me in the case of vehicle breakdown or maintenance.

7.2.

With the rising costs of fuel etc. Transport funding ensures I can still access the community and the support already provided by the NDIS. Removing this funding limits my ability to maintain my current independence and would remove the safety net should my vehicle require maintenance and be off-road.

NDIA Funding for Transport Supports

My NDIS plan should fully fund any supports that are deemed reasonable and necessary. How do I access these supports without adequate transport?

Technology Required: Moratorium Impacting Hoists Replacement

A moratorium was placed so I could not get my hoists replaced because the matter was at the AAT. I was denied safe equipment because I was trying to fight for my supports.

Agreement with Occupational Therapist (OT)

After a discussion with my Occupational Therapist (OT), we have agreed that I need to replace some of my equipment. This is to ensure I can continue to function as independently as possible and that I am safe when moving around my home and in the community.

Requested Technology Relating Directly to Disability

The technology I am requesting relates directly to my disability. It is equipment that I already have but it needs to be updated and is no longer safe to use ongoing. This equipment is a ceiling hoist and a second manual hoist.

Ceiling Hoist Requirement

The ceiling hoist is required when I am unwell or have a slip/fall or am tired and unable to do an assisted transfer. Currently, I do not have access to a ceiling hoist as it is broken and unable to be repaired. We have attempted to have it looked at and fixed twice. I am unable to get a new one at this time because of my plan is in dispute there is a block on allowing me to access funding to purchase vital safety equipment.

Manual Hoist Condition

The manual hoist l have is outdated and bulky and does not have all its original parts. This is my only current means of fulfilling my hoisting requirements should the need arise. My OT has expressed the need to purchase a new folding manual hoist that is more flexible and meets the current safety standards

for the well-being of myself and my workers should it need to be utilised. Due

to the current dispute regarding my plan, I am denied access to basic safety

equipment.

8.5. My experience beginning my dispute with the NDIA, they told me I could not

  purchase any of the safety equipment  I asked for. This is very wrong and

  something that needs to change. Without my hoist I'm am forced to stay lying

 on the floor waiting for an ambulance to come to pick me up. Due to the current

  pressures on the ambulance service, it could be hours until they can come and

   pick me off the floor, I strongly feel that during disputes vital equipment should

  not be withheld this is seriously wrong. I feel this was a tactic to try and make

   things even more difficult and discriminating against me by removing my ability

   to have access to necessary equipment)

9. Capacity Supports – completely cut from my plan was supports directly related to my Cerebral Palsy (Hydrotherapy, Personal training & Physiotherapy)

9.1. I am under a speech therapist due to changes in my swallowing capabilities putting me at high risk of a choking episode. I require the presence of my support workers to monitor me while I am eating and drinking as I do not know when one of these episodes will occur and may require immediate first aid assistance at home or when I’m out in the community. I feel a lot safer knowing my support workers are there when these swallowing events happen as they occur at least once during every meal. Due to my swallowing issues, it is dangerous for me to be left alone while I am eating /drinking. I am at a very high Page 14 of 17

risk of choking. Therefore, I need my support workers to monitor me while

eating. without my previous level of funding my safety is at risk.

9.2. During the AAT Process I have felt degraded with having to explain and justify

    in detail my health issues and why I need my funding reinstated. There has to

 be a better way! this process of cutting funding at a review is degrading and

  does not support us. More consultation prior to assessing the continuation or

   cutting of funding would be a more inclusive approach.

9.3. Physical therapy started with a visit to the local pool, one of my support workers

 showed me that with the support of a physiotherapist, I could get into the water

 and move more freely than I have done in the last 16 years confined to my

   wheelchair. This then progressed formally with my physiotherapist and support

   coordinator to include personal training and physiology that has given me focus

 and mental/physical benefits I had not imagined possible. My outlook on my life

  has improved with this person-centered plan of activity based on my goals to

  maintain my independence. Which is very important to me. It has given me a

  connection to community and social inclusion I could not manage without formal

  support to assist me.

9.4. I get very tired and stiff in my muscles due to my CP. Hydrotherapy allows me

   to relax my muscles and put myself into positions that I can’t do normally due

   to my mobility. Building strength in the pool with dumbbells is really important

    for my independence. Being in the water I feel like an equal participant like

  everyone else and this is thanks to my capacity-building funding

9.5. My physiotherapist continues to revise my hydrotherapy program to assist in

  the management of my CP and my pain due to my physical disability. My

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Support Services

support workers have been trained to assist with the implementation of my

program. My physiologist provides me with a one-on-one tailored program of

stretching and breathing exercises that have allowed me to maintain and

improve my range of movement and lung capacity.

My personal training allows me to build and maintain my upper body strength

so I can continue to transfer with assistance from my support workers. Water

aerobics/ hydrotherapy gives me the ability to move more freely and without the

constraints of my wheelchair. I do this with two support workers to ensure my

safety as per the direction of my physiotherapist.
My previous capacity-building funding helps me maintain my physical upper

body strength and flexibility to continue to be able to do my assisted transfers

with my support workers from my wheelchair to the toilet, shower chair and bed.

Without an increase in current funding, I would quickly deteriorate to the point

where I could not transfer anymore and this would mean I would be reliant on

2 support workers for hoisting I would quickly lose my range of movement and

strength.

This funding was assisting me in my daily living, and improved quality of life,

yet more than 70% of my funding was stripped in this last review removing the

structure built by myself and my health professionals to maintain my capacity.

How can you possibly justify that? Now I am required to justify my need for

funding that was already in place! This would also disregard my partner’s ability

to help me overnight because we would need another person for hoisting.

If I was forced into hoisting all of the time it would break down the skin on the

back of my legs. It is already very painful so I am trying my best for as long as
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I possibly can not to resort to being hoisted for every transfer. Pressure sores

are a big concern for me and my health. I have had ulcers in the past that were

ongoing for almost 12 years and this was very traumatic. I don’t want to be in

that position again, so I work really hard to keep my fitness at a level so as not

to require constant use of a hoist. NDIS funding is all about capacity building

and this is the story we are given when we access the NDIS. This has been

denied to me. How can the NDIA justify such drastic funding cuts at the expense

of people’s health impacting the longevity of my life? My funding requests are

value for money as in the long run, I would need more support if I cannot

maintain my independence.

Kind regards,

Tammy

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