Experiences with NDIS planning and eligibility reviews due to psychosocial disability | External submission

IMPLEMENTATION AND PERFORMANCE

a) The experience, expertise and qualifications of planners b) The ability of planners to understand and address complex needs

General

The NDIS was set up without enough staff but also without staff who had an appropriate level of training. I have had three years of interactions with NDIS employees who have no training or experience with mental illness or the psychosocial disability arising from it. Difficulties also arose for me when dealing with NDIS staff who inappropriately used the context of physical or intellectual disability to assess and judge my ability to function in life.

While the NDIS has taken several years to improve employee training, I was damaged by staff ill-equipped and unsuited to do the job. My eligibility for the NDIS was challenged by an ignorant delegate nine months after being given access. She removed my entire support structure. It took three months for my eligibility to be reinstated and support restored. The distress involved negated whatever gains I had previously made with support.

If you get a good planner, you get a good plan. Get a dud planner, you get a dud plan. There is too much inconsistency, lack of expertise & experience in planning staff at the moment and participants are suffering unnecessarily because of that.

Planning meeting 1

My first planner was excellent. She came from a disability background and was knowledgeable and experienced. More importantly, she listened and was kind, compassionate, respectful and caring. As I was so anxious and distressed during the meeting, she guided me through the process and set me up with a fair and reasonable plan that worked very well for nine months.

Unfortunately apart from that first planner and the planner who conducted the review into my eligibility, I have not noticed any experience or expertise in anyone else I encountered in the NDIS. I have never been told anyone’s qualifications so they could well have been qualified bakers or car mechanics for all I know.

Planning meeting 2

Following the review re-establishing my eligibility, I had a planning meeting. My psychologist and co-ordinator attended with me as I was unwell and incapable of contributing. I trusted both of them to get me a plan appropriate to my needs and they did. If they had not attended with me and advocated on my behalf, I would have never gone to the planning meeting and would have discontinued with the NDIS right there and then.

I went into the meeting (Nov 23 2018) at a disadvantage and had to face significant challenges. The planner was not the person I had been advised would be conducting the meeting. This caused me distress as I don’t deal well with the unexpected. A manager also came into the planning meeting. I felt intimidated and threatened by his presence and am not sure why he needed to be there. I felt confronted, overwhelmed, stressed, anxious and distressed before, during and for a considerable time after the meeting. I couldn’t concentrate, speak, understand or remember what was said. I felt they were trying to trick me into saying something so they could make me ineligible again.

The first plan we received was incorrect and they had to redo it.

Prior to the meeting my co-ordinator had helped me formulate goals because my depression is so chronic I didn’t have any. I didn’t know what I needed to help support me or what was available but I was very aware of what hurt me and was of no use to me.

The review and planning meetings felt like inquisitions with an aim to get me off the NDIS. It felt like I was on trial, only allowed to answer yes or no and not allowed to give further information explaining my answers. The planner’s questions were all closed questions like,

“Do you drive a car?”

If I said yes that would be viewed as being too functional. If I said no that would be untruthful. The answer is yes but only when I am well enough to leave the house, have the concentration to drive, when I know the route and in quiet traffic. The planner was only interested in a yes or no answer and that was unfair.

WHAT PLANNERS DO NOT UNDERSTAND ABOUT MY COMPLEX NEEDS

Planners do not understand I have complex trauma, major depression and now autism. I need continuity of support as I have difficulty with change and am slow to trust people. I also have difficulty building and maintaining relationships. I have complex needs and am often unwell. My experience so far has been that not only have my complex needs been ignored, I feel like the NDIS unjustly judges my diagnoses and the seriousness and complexity of my disability. They look at me through tinted glasses, see my level of education, my capabilities and that I am articulate but can’t see the ill health and disability. It is very invalidating.

I’ve had a few support workers. They were all nice women and I got on well with them but most had no knowledge of mental illness, never really understood what my needs were and offered unrealistic and over simplistic solutions trying to “fix” me. One of them downloaded their home and work problems onto me and I often felt overwhelmed by their issues. I’m pretty sure that’s not what should happen.

If I don’t click with a support worker then there is no point in me continuing with them as it just causes me distress, defeats the purpose and causes more harm than good. It’s not about not liking the support worker as a person. It’s about their level of skill, their empathy for me and how comfortable I feel in their company. An NDIS planner and a manager told me I needed to get out of my comfort zone and try harder with support workers. I asked them if they would continue going to a hairdresser or a GP they did not click with and they both said they wouldn’t. I asked them to explain why they expected me to continue seeing a support worker for my mental health and disability when it doesn’t work for me. I think they got the message but I really shouldn’t have had to explain that.

It has been difficult finding support workers who have sufficient mental health training and experience to handle my complex needs and who are a good fit for my personality and interests. My current NDIS support worker is a psychologist and she is an excellent fit for me.

I have swapped service providers because the provider I was with had no support workers to cater for my needs. One service provider I went to was happy to do co-ordination and support work but told me I had to pay all the worker’s expenses when we met in the community (coffee, parking, meals etc.) out of my own pocket. I felt that was unfair so cancelled my service agreement with them.

Having a great co-ordinator is a key factor for me to have a successful NDIS experience. I need a co-ordinator who is knowledgeable about what’s out there for me, can suggest appropriate activities and can support me when necessary. My first co-ordinator knew me well. She’d previously been my PHAMS worker and had an excellent understanding of mental illness and all the different kinds of things I could access in the community. Supporting me through a review and complaints process, hospitalisation and a suicide attempt took a toll on her and she has stopped doing NDIS co-ordination.

c) The ongoing training and professional development of planners I think planners should have annual and compulsory training and professional development to develop and maintain their ability to respond to participants with kindness, compassion, respect and care.

Planners should attend professional development sessions conducted by people with lived experience of disability to inform their practise.

I think the NDIS should employ and train planners for specific disabilities so participants benefit from dealing with someone who has experience and expertise in their particular disability.

d) The overall number of planners relative to the demand for plans Obviously there are not enough planners in general but particularly planners with expertise and experience with psychosocial disability. There needs to be more money allocated to employing staff and training them appropriately.

e) Participant involvement in planning processes and the efficacy of introducing draft plans My plan was suspended while the NDIS investigated my eligibility. The delegate responsible for challenging my eligibility never met me but she devised an interim plan for me while her investigation was conducted. I had no say in this plan and it was totally unsuited to my needs. I did not receive a draft and the plan was emailed

to me as a done deal.  I only used some of the plan because I disagreed with it.  I immediately requested a

review of her planning decision and the challenge to my eligibility. That process took three months. The amount of stress, work and constant following up was completely unacceptable and I was hospitalised because of it.

I never received a draft of any of my six plans. From memory, three plans contained errors that my co ordinator picked up so they had to be rewritten. Apart from my latest plan, all plans were emailed done and dusted. With my latest plan I was told what would be in the plan at the meeting but I did not receive a draft document. Not being able to review a draft plan is disrespectful nonsense and simply causes delay and distress for participants. Having no say before the plan is approved increases the number of participants who are unhappy with their plan and are forced to request a review after receiving it. I think the planning process should take less than a month. The longer the process, the more distress for the participant.

I have no experience of requesting a change to my plan. I have just been diagnosed with autism so I probably could request a change but after going through thirteen months of the NDIS’s review and complaint processes I simply do not have the will power, health or capability to do that. That should tell you something about how overwhelmingly difficult all the NDIS processes are for participants.

h) The review process and means to streamline it If you mean a review of a reviewable decision, I have only requested one in 2018 (why my PTSD was ineligible, the removal of my support worker and psychology and having no input into the interim plan provided)

It was only because I kept contacting the NDIS and went to my local MP that the review happened at all. The process took far too long (3 months), caused extreme distress and I was hospitalised. Continually following up and getting told different information from NDIS staff every time I rang was unbearably frustrating. I had more knowledge of the review process than most of the NDIS 1800 call staff I spoke to.

When the NDIS delay reviews, participants are forced to put their lives on hold, feeling stressed, anxious and frustrated. Reviews need to be done as efficiently as possible so the participant can get on with their life. A review should take no more than a month.

In my case, once the actual planner handling my review was appointed, the process was smooth and quick. She was intelligent, fair, respectful and efficient. She reversed the delegate’s decision, re-established my eligibility and set up a new planning meeting.

If you mean a planning review I think I’ve only had one and the consequences of it proved disastrous for me. It was held in 2018 with the LAC. Everything seemed to go well until his report went to a delegate who decided to question my eligibility. The LAC and the delegate demonstrated a complete lack of knowledge and understanding about the life impact of serious mental illness and the disability resulting from it.

The delegate never meet me. She focused entirely on an OT report that said I was functional and dismissed all other reports. In their review reports, my co-ordinator, psychologist and psychiatrist emphasised that the NDIS needed to understand that I needed on-going support to manage my disability and there was no fix or cure but the delegate chose to ignore their reports.

The email I received from the delegate saying she was investigating my eligibility was blunt and provided little information. I emailed the NDIS refuting the delegate’s statement in her email that my PTSD was not fully treated and listed the different treatments I had tried unsuccessfully over a ten year period. I also asked several questions about who the delegate sought information on PTSD to help form her decision. The NDIS never replied.

The delegate had four reports I’d provided for my review. When my eligibility was questioned my psychologist and psychiatrist both wrote additional and more comprehensive reports. We considered we had provided the information the delegate needed to make a good decision. The delegate told me and my co-ordinator on separate occasions that she was not going to consider what my psychiatrist and psychiatrist had said because their reports were too clinical and the OT had already said I was functional.

If it hasn’t already been discontinued, the practise of allowing a delegate to make life-changing and ill informed decisions about a participant’s eligibility so lightly needs to cease immediately. This was an extremely damaging decision for me.

j) The circumstances in which plans could be automatically rolled over I feel that I am at a disadvantage and discriminated against by the NDIS because I have psychosocial disability. The NDIS seems to follow the popular view that if people with mental illness work hard, meditate, colour in, exercise, do volunteer work, move on etc. they will be cured and won’t need support any longer. That may be the case for people with mild forms of mental illness but it is never going to be the case for me. I constantly feel I am supposed to feel ashamed that I’m not cured and all better. As my work injury caused a serious and permanent impairment of 35% and I now find I have autism (a life-long disability) there is no chance I am going to get better and theoretically not require NDIS or some other support however hard I try as long as I live. Having to prove disability over and over again is inhumane.

k) The circumstances in which longer plans could be introduced My next NDIS review is a year away but I am already anxious about it, worrying about what questions they will ask and if they will take away my eligibility again. My psychologist attended my last planning meeting to have input into an appropriate plan for me. She strongly advocated for a three year plan as the review process causes me such extreme anxiety and distress for several months that she is unable to do any therapeutic work during that time. She has to use psychology sessions to help manage my distress. We were given a two year plan.

m) Any other related matters

SUGGESTIONS FOR IMPROVING THE NDIS

GENERAL

I appreciate and understand the need to hear from participants about their experiences with the NDIS. The problem with that is I am “living” with the NDIS and all of its issues. I can tell you what I’ve experienced but then surely others can read about my experiences and work out what the NDIS must do better. I don’t have the energy or capacity to come up with too many suggestions about how the NDIS should be improved but I do

want to see real change in the NDIS.  I want the things that are flawed to be fixed.  I want it done as quickly but

as carefully as possible because speaking from my own experiences, the NDIS is failing participants with psychosocial disability.

THE MAIN FAULT WITH THE NDIS

I see the main fault with the NDIS as being the manner in which employees treat participants and all other problems flowing from that systemic attitude.

Anyone working for the NDIS are fully aware that they are working with vulnerable people with disability but they do not seem to be using that knowledge to inform how they treat participants. NDIS employees need to be more aware of how to speak and interact with participants with the knowledge, skills, care, compassion, kindness and empathy necessary to assist vulnerable people so as to not cause further damage.

Having mental illness, psychosocial disability and whatever label autism comes with, the worst thing about being an NDIS participant is how I have been treated as a human being. The government system supposed to be helping and supporting me know I am a vulnerable human being and yet they have systematically and consistently failed to take my vulnerability and complex disability into consideration in their communication and interactions with me. Most NDIS employees I’ve dealt with gave no thought or had any awareness of how their words and actions harmed and distressed me. They showed me no respect as a human being and treated me with a cold, unkind, uncaring, judgemental and uncompromising attitude which lacked compassion. NDIS employees with limited knowledge or understanding of disability in general, have consistently failed to take my complex needs into consideration and have acted with a careless disregard for my health and well-being. In essence, they simply don’t care.

Examples of inhumane treatment from NDIS employees are:

having a delegate laugh at me when I started crying
having my complaint fobbed off for nearly a year
being told incorrect information
being ignored and dismissed when asking genuine questions
being punished for appearing to be more functional than what I actually am
being victimised for standing up for myself
being lied to over and over again
writing such convincing lies in response to the Commonwealth Ombudsman’s inquiries that they were believed despite proof to the contrary.

I have experienced nothing but stress and trauma from the NDIS processes. I consider their actions towards me from June 2018 until July 2019 to be negligent, dangerous and unforgiveable. The issues I had with the NDIS are over but the damage caused to me remains. I was treated like a worthless, lying, annoying, demanding piece of crap by the NDIS. I am incapable of expressing the level of distress I still feel in relation to how I was treated. I entered a system designed to help me but all it did was significantly and negatively affect my mental health and I have ended up worse because of involvement with the NDIS. That is a disgrace. I don’t want to be harmed anymore. I have been damaged enough. My PTSD is testament to that fact.

SPECIFIC SUGGESTIONS

Increased awareness, understanding, knowledge and flexibility in relation to mental illness and the development and complexity of psycho social disability.
Greater acknowledgement and understanding of the serious implications for a person’s ability to function in life that arises from constantly living with mental illness.
More training for all NDIS employees specifically about how to work with people with psychosocial disabilities so as not to cause unnecessary stress and more harm and trauma by their processes and interactions.
More training and money directed at improving communication within the NDIS and with participants.
Reduce the complexity of the processes and the website information to make navigating the NDIS system less confronting and confusing for participants.
Stricter guidelines within the NDIS surrounding the need to follow their own processes and timeframes.
Take reports of poor conduct from participants about NDIS employees more seriously - have transparent investigations into their conduct and report on the actions taken to prevent any further poor conduct eg. re training, transfer to another department, caution on their file etc.

There should be regular scrutiny of recurring and similar complaints registered against specific employees from participants. Alternative career choices where they cannot impact on vulnerable people should be suggested or enforced.

In regard to participants with psychosocial disability, priority and an appropriate level of respect must be given to the reports from psychologists & psychiatrists.

They are health professionals who do not lie or exaggerate in their reports. At the time my psychiatrist and psychologist were required to give further information to support my eligibility for the NDIS, there was nothing on the NDIS website to guide them. They had to obtain information from advocacy websites. They are both extremely busy professionals and everything they have had to do for me for the NDIS is over and above what is normally expected. What they write should be respected by the NDIS.

The NDIS needs to change their attitude towards psychosocial disability. Their eligibility and review processes focus in great detail on the limitations my mental illnesses impose on me rather than what I can do with support. Appropriate support is what keeps me well and less of a financial burden on the government. The NDIS processes also fail to acknowledge the huge effort I already put in to manage my disability and only serve to reinforce the trauma that caused my disability.
If a participant’s eligibility is questioned, they need to be provided with details of which type of medical practitioners are consulted before the decision was made.
The NDIS needs to be more committed to follow the guidelines about consulting with a participant about their needs and goals before plans are written.

It is not appropriate for the NDIS to cut funding for services that the participant needs and their medical practitioners request in order to provide services that cost less or because a particular planner believes they are more appropriate.

In my case, the NDIS took away the psychology and support worker my medical practitioners had advised that I needed and substituted this with an occupational therapist who would not be of any assistance to me but would be cheaper for the NDIS. The NDIS should not place their own bureaucratic expediency over a human being’s welfare.

My PTSD, Major Depressive Disorder and autism are intricately interwoven, share similar symptoms and have exactly the same serious implications for the quality of my life and my ability to function. The decision of the delegate to devise a plan to try to determine which illness caused exactly which loss of function so the NDIS would only have to pay for what they considered eligible, demonstrates an appalling lack of knowledge about

mental illness and disability. The NDIS allowed this delegate to make an unintelligent, ignorant and ill informed decision that changed my life for the worse. It doesn’t matter that her decision was reversed following a review. The damage has been done.

The NDIS need to stop their preoccupation with occupational therapy as an assessment tool and treatment for psychosocial disability.

Occupational therapy may be helpful for participants with physical and intellectual disabilities but it is unhelpful and dangerous to over rely on the opinions of occupational therapists for participants with mental illness. Psychologists and psychiatrists have a far superior level of qualification, experience, expertise and specialisation in mental health issues and particularly of trauma to that of occupational therapists. I do not consider occupational therapists have an adequate knowledge of trauma or depression to be of any real assistance to me. I find their techniques and strategies to be over simplistic and unrealistic to be of any help with the level of trauma and psychological distress I have.

In my case, the NDIS delegate challenged my eligibility and devised my plan based on the opinion of an occupational therapist who saw me a few times during a period of being well above those of my psychologist and psychiatrist who had worked with me for years. This proved to be a very dangerous and negligent decision.

The NDIS focus on how people “function” in life is not a helpful or accurate guide to how psychosocial disability related to mental illness is experienced by participants. The criteria the NDIS use in relation to function are more applicable to someone with a physical or intellectual disability and are almost irrelevant to someone with a mental illness.

Being able to function in life is so much more than being able to shower, drive myself to appointments, cook meals, shower myself and all the other things the NDIS refers to as “functioning”. To me, functioning in life means actually having a reason to live and believing that I have a life worth living. Functioning means having a full and meaningful life like I had before my work injury and mental illness. Being functional is about feeling connected to people and not always feeling terrified that someone is going to hurt me. Functioning is believing that I can still contribute to society, make a difference in other people’s lives and make the world a slightly better place for having lived in it.

I can be extremely unwell mentally and still appear to be quite “functional” according to the NDIS. Someone like me who is intelligent, well-educated and who has knowledge and insight into their mental illnesses can appear to be far more functional than they actually are. The reality is that most of the time, I am very depressed, easily distressed and can quickly become suicidal, yet I still push myself through each day just to exist.

Provide adequate government funding to advocacy groups so that they have the capacity to assist participants whenever they have with issues with the NDIS.

I asked RIAC for assistance in late 2018 for help with a complaint & a request for a review. Due to limited funding & staffing they were unable to help. It is yet another example of the misleading information that floats around the NDIS. As a participant you are told there is advocacy agencies out there to help you but when you seek them out, they’re all full up & do not have the appropriate level of resources to help you. Although I have the intelligence to advocate for myself, the stress involved caused a dangerous inability to cope with life.

Remove the Commonwealth Ombudsman as the go to body to deal with issues about the NDIS because they lack the power, capacity, attitude and staff to assist participants with issues they have with the NDIS.

The CO felt that despite all of the genuine issues I had with the NDIS their advice was to accept the NDIS’s apology and get over it as there was nothing they could do. I think that is appalling. The actions of the CO has caused me as much distress as the NDIS. The CO’s service charter states they exist to protect the rights of people against government bodies yet we know that government bodies are never held accountable because Ombudsmans don’t have the power to do anything. All they are capable of is providing complainants with the illusion that they have rights and are being listened to in order to smooth over complaints and falsely claim resolution for all. See ATTACHMENT A

Remove the 1800 number as the only point of contact listed for NDIS participants to contact when they have questions.

The staff are inadequately trained and not able to deal with participant inquiries. If a participant calls the 1800 number they should be given a real person’s name and immediately directed to the appropriate regional office to speak directly with that person. If you read ATTACHMENT C you can see how when I phoned the 1800 number the phone operators were trying to help and following the process they’d been told but it was going absolutely nowhere within the NDIS and providing me with no response or help at all. I’m sure the committee all have experience of the frustration of ringing someone seeking questions or help only to find yourself banging your head against a brick wall and being fobbed off. This is a particularly distressing and soul destroying experience for vulnerable people with disability to be forced to do and the practise should be immediately stopped. Every NDIS participant should have a real person they can call and speak with about any issues. If that is the point of the “direct point of contact” referred to in the Tune review discussion paper, then I would support that improvement being made.

The Feedback line should be for feedback and not complaints.
All NDIS participants should be surveyed on a regular basis – not just the select few who have been surveyed over the last few years.
Every NDIS participant should have a LAC and a single and direct point of contact within the NDIS.
The NDIS should have a separate and dedicated service and complaints department that receives verbal and written complaints, communicates directly with the complainant, investigates and works on resolving the issues.

Complaints should be written on an official NDIS complaint form and handled by a specialised participant service department by staff who are experienced and qualified in customer relations, complaint investigation and resolution. Planners should sick to planning and not be asked to or believe they have the skill set to handle complaints. They don’t. All responses to complaints should be formal and written.

No-one was appointed to deal with my formal complaint for seven months and then it was given to a planner. I do not understand why my formal written complaint written on the official NDIS complaint form was sent to a planner and not to a specialised department whose sole job is to work on complaints.

The NDIS needs not only to have written principles – there needs to be an independent body to ensure the principles are followed.

All government bodies have documents, service charters, guiding principles etc. that read extremely well on paper but are not always followed as having the principles written down does not automatically ensure they will be followed. People’s lives are damaged because government bodies like the NDIS do not follow their own rules. Whatever principles are adopted I would like to see transparently independent checks and balances to insure the NDIS and their staff actually abide by the principles.

A separate and completely independent body needs to be established to deal with complaints about the NDIS after their complaints process has failed. This body needs to have the time, staff and commitment to believe and support vulnerable participants while properly investigating their negative experiences with the NDIS. The Commonwealth Ombudsman is failing to do this. The current system of having the Commonwealth Ombudsman overseeing the NDIS did not work at all for me & was simply another source of stress, humiliation, invalidation & disappointment.

If principles are not followed, the NDIS needs to honestly acknowledge their transgressions and be held accountable in some way. The NDIS should not be allowed to lie their way out of everything and pull the mental illness or disability card from out of their sleeve to deflect all blame onto the participant complainant. If the NDIS distort or exaggerate facts or deny information or their actions there should be tough sanctions – retraining, transfer, written and face-to-face apologies, formal warning on their file, fines etc.

ATTACHMENT A - THE COMMONWEALTH OMBUDSMAN

There is no point having the CO listed as the body to assist participants if they feel they have been dealt with unfairly or unreasonably by the NDIS, if the CO is not equipped or prepared to help.

In order to assist participants and safeguard them in their dealings with the NDIS, the Commonwealth Ombudsman needs:

more money as they initially refused to help me because they had too many complaints to deal with
to be given the power to force compliance, hold the NDIS accountable and enforce some sort of justice for participants
to be prepared to make allowances when helping NDIS participants because they are vulnerable people with disability who need to be treated with kindness and compassion.

In my dealings with the Commonwealth Ombudsman during 2018 and 2019, I felt their actions and decisions did not reflect their service charter. They failed to safeguard me in my dealings with the NDIS. They afforded the NDIS every right they failed to give me and enabled the NDIS to treat me however they liked with immunity. Their communication style and tone did not reflect an understanding of how to communicate kindly and respectfully with a vulnerable person. I had to contact Lifeline after one conversation.

I feel that the Commonwealth Ombudsman’s process for dealing with complaints about the NDIS was fundamentally biased against me. Their process lacked transparency and fairness. To find out what the NDIS was asked or how they responded, I had to apply (and pay) through FOI. The final decision was made without any consultation with me and I was denied a right of reply. The investigation officer did not check the validity and accuracy of the NDIS’s statements with me before making his decision so I had no chance to refute the incorrect information or provide further documentation. The CO’s investigation process is unfair and discriminatory as I was expected to prove everything I said but the NDIS were given the advantage of only having to respond to what the CO asked them. If the investigator asked the NDIS questions and expected answers and explanations, why wasn’t I provided with a similar structure so it was an even field to begin with? The investigator did not treat the information I provided with the same diligence, fairness or level of respect for honesty and integrity as what was afforded the NDIS and therefore the CO’s process and decision discriminated against me.

Just because the CO investigated and came to a decision, it does not mean anything was resolved for me. The CO found that the NDIS was confused and made mistakes and concluded that I should accept their apology and get over it as there was nothing they could do to achieve any other outcome. That might be a nice, tidy ending for the CO (and the NDIS) but to me it is pathetic.

If the CO thinks an apology cuts it, they are severely out of touch. An apology from the NDIS did not resolve anything for me because I know the NDIS will continue to “get confused” and make mistakes with other participants because there are no consequences for their conduct. The CO believed the lies the NDIS told them and let them get away with bad administration, failing to meet any timeframe, treating me unfairly and unreasonably without even a slap on the hand. The CO’s process for me was useless and invalidating and still causes me great distress.