NDIA Accountability Project

Foot care support for participant with Spinal Muscular Atrophy

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10 October, 2022

Joint Standing Committee on the National Disability Insurance Scheme PO Box 6100 Parliament House Canberra ACT 2600

Dear Members,

RE: Inquiry into and report on the implementation, performance, governance, admination and expenditure of the National Disability Insurance Scheme (NDIS)

Thank you for undertaking this inquiry into the NDIS.

I was born with a disability that is still undiagnosed. It is best described as a non specific, pathological Spinal Muscular Atrophy. It is a degenerative condition and the rate of deterioration increases as I get older. I have been an NDIS participant for just over 2 years and dealing with the NDIS has left me anxious in my dealings with them and scared of losing my funding as every time there has been a change or review there has been a cut to my funding.

In response to point a. of the Terms of Reference “the capability and culture of the National Disability Insurance Agency (NDIA), with reference to operational processes and procedures, and nature of staff employment”

My experience of the NDIS with reference to operational processes and procedures is that they are generally not followed whilst maintaining an appearance of being followed.

Here is a simple example.

My disability means that I can’t reach my feet to look after them or cut my toenails. I also have customised orthotics in my shoes that assist in my ability to walk which increases my level of independence.

“the NDIS, which is a scheme that aims to:  Support the independence and social and economic participation of people with disability, and  Enable people with a disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports”

It is reasonable and necessary for me to have my feet looked after by a podiatrist thereby preventing ingrown toenails and infections which impact my ability to walk. It is value for money as the orthotics enable me to be stable when walking and increase my independence and ability to look after myself. The only reason I need podiatry is because of my disability.

According to the determination of the review to my plan of 2 August, 2021.

“Treatment by your podiatrist is considered a day to day living cost and something that all Australians need to pay for, irrespective of disability and would be considered more appropriately funded or provided through other general systems of service delivery such as the Health system”

I do not consider the reason I need a podiatrist to be considered a day to day living cost.

Here is another example more specifically related to NDIS operational guidelines.

My husband is my only informal carer and works full time. He requires respite to be able to continue looking after me long term. In nearly 30 years of marriage he has only had a total of 4 weeks respite. He is burnt out and suffering under carer burden. It is reasonable, necessary and value for money to provide my husband with respite thereby reducing my need for formal supports otherwise.

According to the NDIS operational guidelines

“When deciding what supports we may fund we also think about your informal supports. Informal supports are your family, friends, and community networks who support you. We consider if they’re able to continue to support you in the long term.

We’ll also think about if we might fund other things that can help support your carers. We may fund Short Term Accommodation with other supports that provide a respite effect, and help your carers keep supporting you in the long term. This may include:

-   support to access the community
-   in home care and support
-   capacity building supports.

We’ll consider the risk to you and your family’s wellbeing if they continue to support you (without Short Term Accommodation). We also look at how the support provided by your family and networks affects your independence. We compare this to the independence and opportunities Short Term Accommodation may provide.

We’ll also consider the role and responsibility of parents in caring for children.”

Given how my disability affects me I requested increased in home care and support to enable my husband to have respite. This would allow him to visit family and have a break.

According to the determination of the internal review of my plan of 18 March, 2022

“NDIS Act Section 34(1)(c) criteria: Value for Money

NDIS supports need to represent value for money in that the costs of the support are reasonable relative to both the benefits achieved and the cost of alternate support when compared to the benefits to be achieved. For example, whether purchasing the support is likely to reduce the cost of funding other supports in the long term and when compared to alternative options that may provide the same outcome at a similar or lower cost. I am not

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satisfied the requested support meets this criteria. Your current funding includes 35 night time sleepovers per year, I am not satisfied there is enough information to show the need for additional carer respite.”

The 35 night sleep overs is because my husband is a field technician and there are some sites that can only be accessed at night. He will do a full days work then go and work that night. He then comes home and sleeps most of the next day. This can happen up to 48 times a year. I need assistance during the night so sleep over shifts were included in my plan. They have nothing to do with respite and the line item for the sleepover wasn’t a respite line item.

“NDIS Act Section 34(1)(d) criteria: Effective and beneficial

To meet this criteria the support will be, or is likely to be effective and beneficial, having regard to current good practice and evidence. This means we consider if there is sufficient evidence to demonstrate the requested support is likely to be effective and beneficial for someone with similar disability support needs and assist in progressing towards NDIS goals. i am not satisfied this support meets this criteria. i am not satisfied there is enough information available to show the requested support is likely to be effective and beneficial.”

As my disability is unique to myself it is difficult for me to understand who is the “someone with similar disability support needs” is and what “current good practice and evidence” they are referring to. This information should be available to participants and service providers so it can be addressed in the reports.

Assist in progressing towards NDIS goals includes having my husband as a long term informal support. What information do they need. Someone cannot be expected to be on call 24/7 without a break forever.

Point b. The impacts of NDIA capability and culture on the experiences of people with disability and NDIS participants trying to access information, support and services from the Agency:

When researching the criteria used for assessing what supports will or will not be funded on the NDIS website, whilst you are looking at one criteria, references are made to other criteria and you find yourself on a round robin with actually finding out how to properly address what the NDIA criteria is. The case studies provided suggest that funding should be provided for a support but then it is denied based on another criteria.

Here is an example: -

In my first plan I received approx. 8 hrs of physiotherapy funding a week. This was broken up between home-based therapy, hydrotherapy and clinical therapy. The aim was to try and stabilise my deteriorating condition and allow me to be more independent. i unexpectedly made significant improvement (eg went from being ready to hand in my driver’s licence to buying a second car). At the end of my plan, I was still improving and intensive therapy was still required as I hadn’t yet plateaued and wasn’t ready to transition to a maintenance therapy program.

  • My therapy funding was cut to just 1hr a week and 2 hrs a week with a therapy assistant.

The therapy I receive cannot be done by a therapy assistant and would in fact be considered negligent.

According to the determination of the review to my plan of 2 August, 2021.

“Support duplicates other supports – Rule5.1(c)

NDIS is unable to fund a support that would duplicate other supports delivered under alternative funding through the same scheme.

The supplied evidence from both the Exercise Physiologist (EP) and Physiotherapist do not provide a breakdown of the supports they separately provide. It is generally accepted that EP’s and Physiotherapists provide very similar level of supports. Therefore without a concise breakdown of why a physiotherapy is unable to provide all your physical maintenance supports, the ongoing provision of EP is considered to be a duplication.

If you do not wish to use the support of a Therapy Assistant, then you can use that support flexibly for physiotherapy, OT or podiatry support. There is no new evidence to support an increase in these budgets or information to substantiate why and increase in required.

Please note that if you require additional therapy hours for any of the above supports then you will need to provide detailed reports showing why you require that level of support for that particular therapy.”

The reports were written in accordance with the NDIS guidelines for service providers and how the therapy was helping me achieve my goals. I didn’t understand that I needed to provide the justification for the intensive therapy all over again.

The review officer advised me that the reports were not broken down enough as to the therapy I need and the detriment to me if I didn’t receive the required therapy.

I have also discovered that if you are working on a goal such as sit to stand using land based therapy and hydrotherapy this would be classed as duplication even though you are only able to do some of the therapy as hydrotherapy due to falls risk. This seems to be another way NDIA are just cutting plans and participants can’t get what they need.

Reports are written in accordance with NDIA guidelines but totally different assessment criteria are applied so the participant doesn’t get what they need and plans can be cut..

I suffered an accident that resulted in 2 broken legs below the knee and lodged a change of circumstances for more formal supports for my personal care, accessing the community and therapy. This accident has had a huge impact on my functional capacity. For example before my accident I was walking with a walking aid and toileting independently. Now I am unable to walk independently and need help to transfer especially from sitting to standing. This means I am unable to get myself on and off the toilet.

My plan before my accident had 6hrs for personal care a day at the standard weekday rate. This was to be broken up as 2hrs in the morning for personal care getting out of bed etc.

  • help through the day then 2 hrs for going to bed. This would mean going to bed at 6pm or forgoing 1 hr to be able to pay the evening rate. I consider this to be cutting by stealth.

After my accident, I requested an increase to 11 hrs a day which was to include 2 hrs at evening rate for going to bed. This would allow my husband to go back to work full time. My husband had been providing the majority of my personal care after my accident due to insufficient funding for formal supports.

As per the internal review determination letter from my 18 March, 2022 plan:-

“NDIS Act Section 34(1)(c) criteria: Value for money

NDIS supports need to represent value for money in that the costs of the supports are reasonable relative to both the benefits achieved and the cost of alternate support when compared to the benefits achieved. For example, whether purchasing the support is likely to reduce the of funding other supports in the long term and when compared to alternative options that may provide the same outcome at a similar or lower cost. I am not satisfied the requested support meets this criteria. I am not satisfied your therapists have provided enough information to show the need for you to receive this level of support. I am satisfied the current level of support will assist you to work towards your goals.”

The change of circumstances included a report from my occupational therapist with my functional capacity and a breakdown of the formal supports I required and why. Also included was an example timetable. I am not sure what further information could have been provided.

So I’m unable to go to the toilet independently. My husband has had to return to work full time and I still only have 6 hrs a day standard weekday rate. If I was using the funding as allocated I would be literally sitting in my own filth all day until my husband comes home. One planner even told me that I hadn’t deteriorated enough between one change of circumstances and the next to warrant any changes in my formal supports.

“NDIS Act Section 34(1)(d) criteria: Effective and beneficial

To meet this criteria the support will be, or is likely to be effective and beneficial, having regard to current good practice and evidence. This means we consider if there is sufficient evidence to demonstrate the requested support is likely to be effective and beneficial for someone with similar disability support needs and assist in progressing towards NDIS goals. I am not satisfied this support meets this criteria. I am not satisfied there is enough information available to show the requested support is likely to be effective and beneficial.”

Again, as my disability is unique to myself it is difficult for me to understand who the “someone with similar disability support needs” is. Also this is a change of circumstances that is supposed to be a new review but no new goals were actually set.

The change of circumstances form doesn’t specify that new goals need to be set or how the changes affect the goals already in place. If they are referring to my goals from my 2 August plan then they are referring to goals set in my review meeting on 20 May 2021 which is prior to my accident. This would not be appropriate. All decisions were made in this review

  • without consultation with me.

It is to be noted that it took 3 months between my review and when I got my new plan. My accident happened during this time.

There are other examples I could give but I hope this will be sufficient.

It is also to be noted that since my accident I have lodged 3 changes of circumstances trying to get the supports I require and a complaint with the Disability Minister. The result of the complaint from the disability minister is I need to lodge another change of circumstances. It looks like the complaint is resolved but it isn’t.

I did discover during the complaint process, however, that the reports were not specific enough as to what was accident and what was disability related. If you don’t get the reports right, you don’t get what you need and there is no opportunity for correction. It is only after a review you find out the reasons and by then it is too late.

It was going to be arranged for me to be able to speak to a delegate so I could ask questions and get information required as to how I needed to approach this next change of circumstances. I then received an email from the complaints officer saying that they had spoken to the delegate and I needed to lodge a change of circumstances. I’m denied the opportunity to speak to the delegate and I’m once again lodging another change of circumstances blind hoping we get the reports right so I get what I need.

NDIA staff in general don’t have lived experience of disability and what that requires. They are unable to fully grasp the difficulties of living with disability. There is a general culture of ableism and an attitude of “the participant doesn’t need that level of support they should be able to manage on this lesser amount of funding”.

Below are general comments and feelings based on my experience. Also comments that have been made to me by NDIA staff.

  • Advised from numerous parties to exaggerate and lie in reports to have a better chance of getting what you need

  • Communication from the NDIA to participants and service providers is different resulting in cross purposes.

  • Reports from service providers are written in accordance with the NDIA guidelines but assessed based on different criteria.

  • You speak to an LAC or planner then it is referred to someone else who creates your plan. You have no control over how your situation is put to them or what is emphasised or not addressed.

  • There is no opportunity for feedback from NDIS, no negotiation or clarification opportunities between when the LAC speaks to the planner and receiving a plan. The same is true between receiving a plan and requesting a review. The participant is working blind. Then the NDIA planners make decisions that affect our lives.

  • The NDIA fund a cheaper support when it is not suitable for the participant. There is nothing in the reports to say that the cheaper support is suitable and there is no reason

  • given why the NDIA think that the cheaper support is suitable. Eg funding therapy assistant instead of a physiotherapist or exercise physiologist. If a therapy assistant is suitable for the participant it should be in the Allied Health professionals report or there should be consultation with the client.

  • When I speak to NDIA staff, they may be courteous but they are always saying that someone else needs to answer that question or it is outside the scope of their job. I have also been provided with incorrect information, so I don’t achieve the desired result.

  • It feels like there is no accountability for making sure plans are correct. If you don’t get what you need then it is internal review then the AAT. Eg in one of my plans a water chair was put in my plan for assistive technology instead of a wheelchair and transfer equipment denied that should have been approved.

  • NDIA staff with no background in disability or medical training reading complicated medical or allied health professional reports. They do not understand what they are reading (that is assuming they have read the reports at all) then they decide what supports a participant needs. I am personally aware of an NDIA planner who’s experience was in horticulture another who’s background was as a lawyer. They had no experience in supporting people with a disability or medical training.

  • I’m on my first plan, in hospital, bed bound and unable to even do the most basic things like reach for a bottle for a sip of water. I had support workers in hospital to help me. Instead of explaining to me that I’m not able to do this I’m told if I put another claim through that I’ll be charged with fraud and audited. This left me thousands of dollars out of pocket personally. I believe a better approach would have been to explain to me I was not able to do this and to put through a final claim. It was innocent error.

  • I never got to speak to the NDIS Hospital Liaison everything was done through the hospital social workers. I didn’t even know one existed until I’d been in hospital a couple of weeks.

  • Just when you think you know what you need to do everything changes and what the NDIA require keep moving. It feels specifically designed to keep participants guessing and a way to deny funding what participants need.

  • I requested the funding category breakdowns (line items) so I would know how the plan was designed to be used. I didn’t receive the requested breakdown but told I must use my plan as budgeted.

  • Asked a planner a specific question which they were unable to answer. Had the reports been read they would have known exactly what I was asking. This person who I know hasn’t read the reports then gets to create my plan.

  • Too many decisions are arbitrarily made without consultation with the participant. No opportunity for discussion. I hadn’t used any of my funding for community participation for the first 3 months of my plan then it was decided I didn’t need that

level of funding. This was the first 3 months after discharge from hospital so the only person who was able to take me out at that time was my husband. Also Disability Support Agencies will often invoice all hours under one line item so the whole amount is claimed against that line item even if some of the hours were for community participation.

Here are some suggestions: -

  • It needs to be made clear to new participants that you need to start from scratch every time you are going through any type of review process. Just because you get something approved in one plan doesn’t mean you can get the funding again in your next plan.

  • When a participant receives their plan they should receive a full budget breakdown (line items) and the reasons decisions were made to both fund and reject what has been requested. This allows reports to be written more specifically regarding why rejected supports are required for the review process. It also helps participants to know how supports were funded. This is especially important for self funded.

  • A different approach is needed for participants with degenerative conditions instead of goal setting. I have one primary goal to remain as independent as possible for as long as possible. I find that I’m making up goals that are all based around the primary goal just because that is how the NDIS planning process works. Breaking down goals into short, medium and long term is extremely difficult. Reports are then written around these goals which just doesn’t work. The reports need to be able to be written to reflect what the needs of that person are in direct relation to maintaining and improving their condition. This will tie into the primary goal of remaining as independent as possible for as long as possible.

  • To change the ableism culture the NDIA staff receive training on what it is like to have live with a disability by spending time doing buddy shifts with support workers or living with a person with a disability for a week. If possible, the participant they live with or the participant who is being supported has a plan that is insufficient for their needs. This will hopefully teach the NDIA staff the difficult decisions that need be made by those participants. This may be as simple as having support for personal care that day or being able to get their’ groceries so they have food that week.

Our lives are not a game and the anxiety and stress created by the NDIS and the fear of losing funding is not acceptable.

Yours sincerely Ms Lynda Lett NDIS Participant