Joint Standing Committee on the NDIS: General issues around

the implementation and performance of the NDIS

BACKGROUND

I have Autism Spectrum Disorder Level 1 and psychosocial disability and an NDIS participant.

Writing this submission is distressing but necessary. There is no hope of positive change in the NDIS unless people know what participants experience. This submission describes my recent plan review and the negative impact this experience had on my health and well-being. The errors, incompetence, poor communication and lack of training, knowledge and professionalism displayed by NDIS employees during this experience are systemic issues that have been repeated in every experience I have had with the NDIS. The NDIS never act with my interests at heart, showing no awareness of the consequences their actions have on my life, health and well-being.

Despite media and website propaganda about participant satisfaction, the NDIS are still failing to meet even basic professional standards evidenced by the ever increasing number of participant complaints to the AAT. The stress, time and effort participants need to navigate the NDIS and AAT complaint processes means there would be at least another ten participants who lack the capacity or resources to even initiate a complaint. Whenever I speak up, the commonly held attitude by NDIS employees is that an apology somehow absolves them of all their incompetence. The answer is, “That shouldn’t have happened. Sorry about that. We’ll fix that issue and no harm done” … but harm is done … to me! I am exhausted by involvement with NDIS processes and have no capacity to forgive the incompetence of their employees or accept their insincere apologies any more.

During a thirty five year career as a state and federal government employee I wrote tens of thousands of reports. As a professional, I took pride in what I did, never misspelt anyone’s name, included incorrect information or fobbed anyone off with a cut and pasted two year old report. If I had, I would have been held accountable for my incompetence. There are no similar professional standards apparent in the three plans I received. As long as the NDIS continue to minimise and defend the mistakes their employees make and fail to take any responsibility for the incompetence of their workforce, the professional standard of the system will not improve. I see no evidence that the NDIS are making any effort to learn from errors or use feedback and complaints to inform and improve the performance and professionalism of their employees and processes. Errors are repeated in an endless cycle causing irreparable harm to participants. In any other workplace, employees who make constant errors but don’t learn from them would be dismissed as incompetent. In the NDIS they survive and flourish because the system doesn’t care if they are incompetent.

SUMMARY

The NDIS employees who handled my plan review were incompetent, knew nothing about my disability and were not in the least bit interested in working with me. Their lack of job satisfaction and careless attitude to their work was evident. I feel devalued and dehumanised because they could not even complete a simple task like a plan review competently and professionally. A LAC and/or two delegates:

• “lost” a confidential assessment report
• ignored my changed circumstances - a new diagnosis - and failed to conduct a full plan review
• did not read the information and an assessment report provided prior to the planning meeting or include that data in my plan

• cut and pasted a two year old plan and fraudulently presented that to me twice as a new plan
• had three attempts at correcting information on my plan including the spelling of my name
• ignored a Do Not Call note on my NDIS file
• conducted a plan review interview over the phone without me understanding the process or what was happening
• failed to notify me when the review was concluded
• failed to notify me when my plan was completed
• completely failed to provide me with a printed copy of my plan
• never checked to see if I’d ever received my plan
• exceeded the stated time frame for uploading my plan to the portal by 384 hours
• left the task of uploading my plan to the portal up to a call centre employee

The stress and time required to wade through this quagmire all fell onto me because … my plan and service agreements expired somewhere after Plan 2 and once again, I was deemed too functional for advocacy support.

SUBMISSION TO THE JOINT STANDING COMMITTEE ON THE NDIS:

General issues around the implementation and performance of the NDIS

MY PLAN REVIEW

My plan was due to expire on 14 December 2020. I experienced increased anxiety in the months leading up to this date because following a plan review in 2018, a delegate removed my NDIS eligibility. It took complaint and review processes lasting thirteen months to have my eligibility restored and an appropriate plan provided. It remains a distressing and traumatic memory.

Problem 1

To ensure this plan review was as stress free as possible, my co-ordinator began working in October with the LAC who would be conducting my plan review. Out of nowhere, I received an email from an employee of my LAC office stating I needed to choose a day and time in the following week for my review and that she would ring me in the next few days for my response. I replied she was not to ring me and that I would discuss this with my co-ordinator. As my co-ordinator had assured me the process would proceed at a pace I was comfortable with, this email seemed contradictory and threatening. My co-ordinator was confused because the email was not from the LAC she’d been communicating with. The explanation provided was that the LAC handling my review had been absent so some other random employee decided to take over her job and get my review over and done with. I was told this person should never have contacted me so … why was I contacted? This type of error is rife. Communication within the system goes wrong, errors are made, the NDIS say sorry and think that’s the end of the matter. It’s not. I was distressed.

Problem 2 – Information on the NDIS describing what will happen during a planning meeting was not what I experienced.

NDIS website: Your Local Area Coordinator (LAC) or NDIA planner will talk with you about your circumstances, and discuss which review approach would work for you. For some participants, a full plan review will not be needed and we will not need to ask you all of the usual planning questions. If your current supports are still meeting your needs and your circumstances have not changed, you may be able to continue with the same supports in a new plan, or a new plan with minor changes.

I never met my LAC. I was not given any opportunity to speak with her before the planning meeting. My coordinator told me about the different review approaches. My coordinator told the LAC of my new diagnosis and emailed the report. Despite the fact that my circumstances had changed, my co-ordinator and LAC decided to continue with a quick review. This change of circumstances should have been addressed before my planning meeting and a more thorough review conducted to assess my support.

Problem 3:

NDIS website: Your NDIS plan will be based on the discussion you had in your planning meeting. Your plan will include the following information:

Information about you - This section includes basic information about your disability, your day-to-day activities, where you live, who you live with, or who cares for you.

Family and friends - This section includes information about the support you get from family and friends that is not funded but will help you work towards your goals.

Services and community groups - This section includes information about services and supports funded and delivered by community or other government services like support groups, health centres, libraries and public transport.

Your goals - This section includes the current goals you would like to achieve as part of your plan and the long-term goals you have identified for your life. Goal-setting is an important part of the NDIS and each of your supports and services should be helping you achieve the goals you have in your NDIS plan.

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The LAC had no discussion with me about my plan during the planning meeting. My co-ordinator and I met three times during October and wrote new information about me, my family and friends, services and community groups and goals. The information was emailed to the LAC but she had not read it prior to the meeting. My LAC obviously did not view the new goals we sent to her as important because she ignored them. I feel incredibly disrespected by my coordinator and the LAC. I feel like the changes that occurred in my life in the last two years counted for nothing and they just wanted to rush through my review with no care for what was written on my plan.

NDIS website: This means your LAC, or NDIA planner can spend more time checking in with you, see how you’re going, and answer any questions you may have about your NDIS plan. It is important to note that receiving a new plan with the tsame supports or a new plan with minor changes won’t be right for all participants. This decision will be made by the NDIA, based on your reasonable and necessary needs. If your circumstances have changed or you would like a full plan review, we will work with you to understand what information you may need to provide.

The planning meeting was held by phone on November 3rd 2020. My LAC did not check in with me, see how I was going or answer any questions. The LAC spoke almost exclusively to my co-ordinator, a bit about me but mainly about their own work lives. I felt excluded and disrespected. I did say that I wanted my ASD diagnosis recorded on my file and included in my plan. The LAC said she hadn’t receive the diagnostic report. I was concerned and felt my planning meeting shouldn’t have been conducted when the relevant documents hadn’t been received or read. I was also very worried about exactly where my confidential report was. At the end of the meeting the LAC asked me if I wanted to add anything. I told her that because of my last plan review experience I wanted everything to be done properly and to go smoothly. She brushed off my concerns. Following the meeting I told my coordinator I’d felt excluded during the meeting and she explained they were trying to avoid causing me unnecessary stress. I also expressed doubts about the competency of the LAC. My coordinator assured me this LAC was one of the “good ones” and everything would be fine. She was wrong on both counts! I do wonder why I am paying the coordinator because she is certainly not working for me.

PLAN 1

Problem 4 – My new three year plan arrived dated December 1st. I had what was a reasonable expectation - that an NDIS plan would be of an appropriate professional standard for an official government document - but what I received was a 99% direct cut and paste of my 2018 plan. Only the date of the plan, the budget and the names of the LAC, delegate and branch manager had been changed. I was so upset I lay on my bed and cried because it was disrespectful and incompetent and I knew how much time and stress it would take to get this fixed. I felt I’d been betrayed yet again by a system that pretends they’re here to help but don’t care enough to write a plan using the information given to them including new goals, spelling my name correctly, changing my GP’s name and details and recording my new diagnosis. I felt disrespected, worthless and defeated and then I felt rage.

NDIS website: Role of Local Area Coordination (LAC)

LACs can help you to:

• Understand and access the NDIS – This can include workshops or individual conversations about the NDIS.
• Create a plan – If you are eligible for an NDIS support plan, your LAC will have a conversation with you to learn about your current situation, supports, and goals to help develop your plan. It is important to know that LACs cannot approve an NDIA plan, this is done by someone from the NDIA.
• Implement your plan - Your LAC will help you to find and start receiving the services in your NDIS plan. Your LAC can also provide assistance throughout your plan if you have any questions.
• Review your plan – Your LAC will work with you to make changes to your plan through a plan review. This generally occurs 12 months after your plan is implemented.

Linking you to information and support in your community

• LACs will help you: Learn about support available in your local community;
• Understand how the NDIS works with other government services – this is supports like education, health, and transport;
• Sustain informal supports around you – this is family, friends and local community members.

My LAC didn’t help me in any of the ways listed above. All she did was conduct a plan review in a one off meeting lasting less than an hour. She hadn’t read the information and report we provided before the planning meeting and never had “a conversation with you to learn about your current situation, supports, and goals to help develop your plan.” The plan she “created” was a kindergarten cut and paste which she obviously hoped I wouldn’t notice. Even though the NDIS have a structured template for plan writing, my LAC lacked the skill to transfer the new information we provided onto that template. The LAC clearly didn’t possess any professional ethics and believed that as long as the dates and names were changed and the budget was sufficient, her work was good enough. The LAC also could not “provide assistance throughout your plan if you have any questions.” because when I did ring to ask her questions, she couldn’t answer them.

Problem 5 - the LAC named on my plan, provided no surname, direct contact number or email. The NDIS policy of allowing employees not to include this information on plans may protect their privacy but it also inserts an unnecessary hurdle for participants when they have an issue with their plan. The only email address supplied was the LAC admin so I emailed that “Attention” on December 8. I reported the numerous errors in my plan and stated that it was important to me that the information was corrected. No-one replied.

On December 11 I obtained the LAC’s direct phone number from my co-ordinator and rang. said the error was completely hers, apologised and said she would amend and resend the plan immediately. I thanked her but didn’t believe a word she said. She wasn’t sorry for her incompetence. She was sorry I’d found her out.

Problem 6 - I still hadn’t received the amended plan by December 21 so I emailed again. I also asked for written confirmation that my ASD diagnosis had been included on my file. replied that the amended plan had been posted and my file updated to include ASD. I thanked her and waited for the plan to arrive.

PLAN 2

Problem 7 - The second plan arrived on 24 December. I immediately phoned . The name and details of my GP were still incorrect and my name was spelt two different ways in one sentence so I refused to accept the plan. As I saw it, I’d been more than fair. I’d already given LAC the opportunity to correct the first plan but she couldn’t do it clearly indicating a serious lack of training, care and attention to detail. I rang mid-afternoon on Christmas Eve but I don’t consider that as an excuse as her answers would have been the same whatever the date.

Notes made during the phone call

My plan details about my GP are still incorrect.

: I can’t change that now as it would change the date of the plan review. You would need a new plan date and review. (I had no idea what she meant)

If you could change the profile information a few days ago why can’t you change the GP information now?

: I don’t think I can change it. (She just kept apologising and saying she didn’t know what to say or do yet according to the website “Your LAC can also provide assistance throughout your plan if you have any questions.”

: Well can I speak to someone who does know what to say and do. A manager?

: It’s Christmas Eve – there’s only a skeleton staff here.

: is listed on my plan as branch manager. Can I speak to him?

: I don’t have his contact details

: Of course you don’t. He’s listed as branch manager on my plan but you don’t know his contact details. (Systemic issue with NDIS. You can NEVER reach the appropriate person because no direct contact details are provided to participants and within the NDIS, I don’t think they know anyone’s contact details either)

I’m not happy with having the incorrect GP on my plan. For the first plan you just cut and pasted my entire 2018 plan, changed the date to 2020 and ignored the updated and new information my co-ordinator and I sent you. This is your second try and there are still errors. (very frustrated and angry)

: No I didn’t cut and paste it. (I’ll never really know because I’m not initiating a formal complaint and I don’t have a spare year)

: Yes you did. I’ve checked and the information is exactly the same. My co-ordinator and I updated all the profile information and sent that to you but you never used any of that in the 2020 plan. When the first plan came I emailed you and told you which information was incorrect and you’ve gone and sent me another plan still without correcting all the information. All this following up is causing me stress. I shouldn’t have to be doing it. (Upset and crying)

: I don’t know what it is you want . (Like I was being completely unreasonable. She had no concept that an incorrect plan was not acceptable and clearly had no idea what to do or how to find out what to do.)

: I want a plan that has correct information and that spells my name correctly. (Could I have been any clearer?)

 I will look into it and get back to you. (She never did)

Problem 8 – I had no faith in LAC so I rang the 1800 number. I knew from past experience that the issue I was calling about would be recorded on my file. Call centre employee could answer my questions. He told me that the change of GP should have prompted a review. I asked him to check if the ASD diagnosis was on my file. He told me it was but that a new diagnosis should also have prompted a review. It beggars belief that a call centre employee knows due process but a LAC, a delegate, a branch manager and my co-ordinator obviously didn’t. I believe emailed “the appropriate branch” and reported that my plan needed reviewing.

Problem 9 - A few days later a woman cold called me. No-one likes receiving cold calls but for someone with PTSD and autism, unexpected calls are particularly problematic. As I’d demonstrated in the past that I had no capacity to deal with cold calls, my psychologist had placed a Do Not Call note on my NDIS file in 2018. I did not participate in or follow the conversation at all and was shocked and distressed during and after the call. I believe I told her to contact my co-ordinator and I also emailed my co-ordinator.

Issues with this phone call

a) I have a Do Not Call on my NDIS file for safety reasons. This note is at the front of my file and in bold print and yet this is not the first time it’s been ignored. Why did an NDIS employee ignore a communication directive? Did she think it was a joke? Did she think she was exempt from that directive? Why did she risk my well-being and safety? She could have contacted my coordinator to assist or notified me by email prior to making the call.

b) I worked out later that the call came from delegate Her letter attached to Plan 3 refers to this phone conversation. Apparently she conducted a Section 48 review under the NDIS Act 2013 because the NDIS received new information about my “disability related support needs”. I have no idea what that means because I was unable to download it and had to pay if I wanted a printed copy. I assume a Section 48 review is related to my ASD diagnosis. Delegate failed to clearly identify who she was, explain her role and the reason for the call. I did not realise she was an NDIA delegate and thought she was a LAC manager ringing me because I’d had the audacity to ask for a

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proper plan. As I had no context for the conversation, I did not realise she was conducting an unscheduled plan review. Her letter states, “As discussed with you, I reviewed your plan to ensure you were receiving the right supports to meet your circumstances.” but I have no recollection of the discussion she refers to. I am not an unintelligent person so I imagine my brain was so busy coping with the stress of the cold call there was no room to comprehend any of the actual conversation. This commonly occurs when people have their trauma activated which was the very reason for the Do Not Call directive. Clearly Delegate has NO clue about psychosocial disability or autism yet has the arrogance to ignore a communication directive and have important conversations with me when my comprehension was impaired by aspects of my disability. This is not appropriate, effective and professional communication or conduct.

c) I do remember Delegate tone of voice. It was abrupt and rude and I assumed she was angry that my plan had to be done three times. It is more likely she interpreted my lack of response as being uncooperative, noncompliant and obstructive and so felt she could be rude.

Problem 10 – While the review was conducted, Plan 2 expired and the service agreements with my

co-ordinator, fund management and psychologist ceased on January 31st. Exhausted and stressed I didn’t know what was going on or what I was supposed to do next.

NDIS website: All plans that are due to end will be automatically extended by 12 months on the day the plan is set to end. There will be an alert for participants in the NDIS myplace participant portal when a plan has been extended. Check if your plan has been extended in the NDIS myplace participant portal and let your providers know the plan end date has been extended, and they can continue to request payment for supports. Your ECEI Coordinator, LAC or NDIA planner will let you know the next steps and how long it will take to receive your approved plan.

There is no correlation between this website information and what actually happened to me. I did not receive an alert. The delegate did not tell me the next steps or how long it would take to get my new plan.

Problem 11 – My plan manager had emailed my coordinator and cc-d me saying my plan and

agreement with them had expired. Not understanding what was going on and becoming increasingly distressed and anxious I rang the 1800 number on February 19th. I told them my plan had expired and asked what I should do now. Call centre employee explained the extension. He told me that Plan 3 had been posted to me on January 2nd. I never received it. said he could put another plan in the mail but that my plan would have been uploaded to mygov anyway. I said I had not received any inbox notifications so he checked and of course my plan was not there. He seemed shocked, said it should have been done, uploaded it and told me it would be available shortly.

NDIS website: Your plan will be available on the NDIS myplace portal about 24 hours after it has been approved. You will also receive a printed copy of your plan either in person or in the mail in your preferred format or language.

My plan was dated February 2 but was not uploaded for 17 days until did it on February 19. Once again a call centre employee did what the LAC and delegate should have done. How is this effective, competent and professional communication? Neither of the printed plans posted January 2 or February 19 have ever arrived so again, confidential paperwork about me is floating around somewhere freely available for anyone to read or misuse my personal information. This is another breach of my confidentiality.

Problem 12 - Mid March my co-ordinator was still trying to chase up plan 3. I had told her that I had

the electronic copy that uploaded to the portal on February 19 but in all the confusion, she missed that piece of information.

PLAN 3

Problem 13 - The third plan arrived.

Finally my name is spelt correctly and my GP’s correct name and contact details are included. Gobsmackingly, despite my co-ordinator emailing two copies of the diagnostic report confirming my ASD to the LAC there is absolutely NO reference to autism on my plan. Delegate conducted a Section 48 review because of my recently diagnosed autism yet failed to include or notice that ASD was not mentioned anywhere on the plan she signed. How is that possible? My ASD diagnosis will remain unreferenced on my plan for another three years. I had autism for fifty years before I developed psychosocial disability yet there are only references to my mental health on my plan.

I’m not sure if a participant’s diagnosis has to be included on their plan but if it is then it should be appropriately worded. The references made in my plan to “mental health condition” and “mental health” are inappropriate because the term used in an NDIS setting should be psychosocial disability. Having mental illness does not mean a person has psychosocial disability and is eligible for NDIS support. Eligibility is established when the impact mental illness has on functional capacity is so significant it causes disability. I know this so why don’t NDIS employees know this? I can only think of two explanations why the terms mental health condition or mental health were used in Plan 3. Either the LAC incorrectly thinks ASD is a mental health condition or she kept a large portion of her cut and paste job and dished it up yet again to save herself rewriting that section. Both explanations demonstrate the continuing ignorance and incompetence of NDIS employees.

Problem 14 - Only the initial of the surnames of both delegates who signed my plans are listed.

What is that exactly? These people have the grand title of Delegate to the CEO of the NDIA but don’t have to include their surnames on letters to me. I have to provide my full name, date of birth, address, email, NDIS number and phone number on every piece of paperwork and during every phone call to the NDIS so why are delegates indulged with the luxury of remaining anonymous when they send me a letter? This discriminatory practice enables delegates to avoid accountability. As participants never know the full names or contact details of delegates and can’t find out, there is no way of contacting them directly or following up unless participants put in a formal complaint. What an out!

Recommendations

• All communication from NDIS employees must contain their first and last name and their direct contact details because they need to own what they write, including their errors.

I am unhappy with what is written in my plan but as I don’t know the name of the author my only option is to lodge a formal complaint with the NDIS and hope that the person responsible is held accountable. How is it a reasonable and fair strategy to deliberately impose obstacles in an already difficult process to make it virtually impossible for me to contact and speak to the person I need to.

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The level of secrecy and anonymity currently afforded NDIS employees is discriminatory and unfair. This strategy allows the NDIS to cloud transparency, restrict accountability and impede the professional development of employees. While NDIS employees are allowed to remain anonymous they are being given the complete freedom to make as many mistakes they like, leaving participants completely unprotected. If NDIS employees had to include their name and contact details it would force them to consider what they write.

2. There should be a clear accountability process at a branch level for when NDIS employees do not follow due process.

The NDIS website says the LAC is responsible for “creating” the plan but not approving it. I found no reference on the NDIS website about delegates but as two of them signed my plans, I assume they are responsible for plan approvals. LAC is responsible for ignoring the diagnostic report and updated information given to her by my co-ordinator and cut and pasting two plans. Delegate is also responsible because she approved and signed off on those faulty plans. Will either of them be held accountable? Probably not because I cannot tolerate the stress of even trying to work out what to do. I was given the name of my branch manager but no contact details at all so even if I wanted to speak to them about this issue, I don’t even know how to find them.

Someone should be held accountable for the incompetent manner in which my review was conducted and the errors in my plans. Someone senior should speak to them. Their performance deficiencies should be noted on their employment file. A history of repeated poor performance should prompt retraining then termination of employment. I am completely over being damaged by incompetent people who keep their jobs despite repeated poor performance.

3. There must be much stronger privacy protection for confidential medical reports that have to be sent to the NDIS.

My reports could not be sent directly to the LAC handling my plan review to ensure my privacy. They could only be sent it to the general office admin account. I still don’t know where my reports went, where they are now or who has had access to them. This careless disregard for my confidential material and the abuse of my privacy is not acceptable. I am distressed by the situation but am unable to pursue any options because I don’t even know what my options are.

4. All NDIS employees must comply with communication directives contained on participant files to ensure the safety of the participant or face consequences.

Participants should not be cold called. Appropriate processes to follow would be to either liaise with coordinators or to email participants explaining who they are, why they need to speak to them and telling them the date and time they will call. That would be safe, respectful and professional behaviour and it should be mandatory conduct for all NDIS employees.

5. LACs and delegates should have to sign off that they have actually received and read the information co-ordinators and participants submit prior to planning meetings.

If there are errors in the plan regarding the information supplied that they claim to have read, they should be held accountable for falsely signing off on a plan.

6. The NDIS should only use terms that are appropriate to a person’s participation in the NDIS.

I am an NDIS participant because I have psychosocial disability and autism not because I have mental illness or a mental health condition. To keep explaining basic terminology that should be well known by the NDIS due to all the hoops they’ve made me crawl through simply highlights their continuing ignorance and lack of training.

7. Participants have a right to the due process as described on the NDIS website.

Participant NDIS experiences should accurately reflect the website information. If NDIS employees do not follow the process described on the website, they should be held accountable and it shouldn’t have to take a formal complaint and a yearlong process to do that. Eg. Plan 3 was not uploaded within the time frame of 24 hours after completion. It took 17 days! Someone is responsible for that oversight and should be held accountable.

8. That delegates actually understand the basics of the participant’s disability before conducting a review.

Alternatively, delegates with knowledge and experience in particular disabilities should handle reviews of participants who have that disability. None of the committee members or staff assisting the committee would accept being forced to go to a podiatrist for a tooth extraction. Why should I be reviewed by a delegate who knows nothing about my disability?

9. All LACs should know the reasons why they are obligated to do a full plan review and do it.

If call centre staff know this, LACs definitely should know it.

10. Participants should be given the opportunity to review and correct their plans before they are finalised.

I know this has been recommended many times but this simple process would ensure that all the personal information is correct and the plan is worded how the participant wants it before it is final. It is their plan after all. If I had been able to review my plan before it was finalised I could have rejected the cut and paste job, corrected the spelling, grammar and punctuation, removed the inappropriate terminology, made sure all the information was accurate, included my correct diagnosis and ensured my name was spelt correctly. Getting two unacceptable plans and then spending three months of my life waiting for errors to be corrected caused me unnecessary distress and further psychological harm. Every time I use my plan with a new service provider over the next three years I will have to explain I have ASD because I cannot devote any more time and effort to this debacle.