JSC Parliamentary Inquiry on NDIS
By Save Our NDis with others)
31/3/2021
Save Our NDIS is against the Independent Assessments, but we would like to bring to the JSC’s attention participants’ concern about the wrongful application of the Vineland Assessment, if the Independent Assessments were to go ahead.
The Independent Assessment toolbox has a compulsory requirement of the Vineland questionnaire. Participants are requested to bring with them someone “who knows them well” who will be taken into another room where they will answer this questionnaire.
For people well able to speak for themselves participants are rightfully disturbed by this wrongful application of Vineland.
Participants should be able to answer the Vineland questions themselves, if they have the capacity to do so.
We asked NDIS participants how they would feel about this.
This is a compilation of the responses we got from Social Media copied with permission.
Comments primarily relate to:
- participants being offended;
- the paternalistic attitude of the NDIA; participants being traumatised by having others speak for them;
- participants feeling there should be“nothing about me, without me”;
- participants’ distress at having no one to nominate to answerVinelandfor them, as many have no one;
- participants’ concern at the possible breakdown ofrelationship with the nominated person;
- participants’ concern the nominated person would feelawkward;
- participants feeling their support people do not really know them well;
- participants’ concernat the breach of privacy;
- participants’ feelings that it would bedegrading;
- participants concerned thattheir support person will have their own issues;
- participants’ concernthere may be a conflict ofinterest if a paid worker answers the Vinelandquestions for them;
- One person was traumatized evenwriting a response to our question,
- and many people commented that Vineland 3was only developedfor ASD and ID so shouldn’tbe used for other disability types.
One responder suggestedit would be like non-disabledpeople being asked to nominatesomeone who knows themwell, to be questioned abouthim in order to access Medicare.
Responses from individuals about the Compulsory Independent Assessments use of Vineland
and requiring that each participant nominate another person to be questioned about them when they are not present.
I have no informal supports, I have no one who spends enough time with me to give you an accurate report on my ability to function. Why is this important when many of us don’t have that?
— Kylie, Victoria
I have no informal supports. I have an invisible illness and have been taught from a young age to mask it so that I don’t cop criticism. I can go from curled up in a ball, unable to breathe with anxiety & overwhelm, to smiling in a nanosecond when someone knocks on my door. My Social Workers (SWs) only see the tip of the iceberg of what’s going on in my head. Building any sort of trust with them takes a lot of time. We don’t talk about my disability in the 2 hours a week I see them as its distressing, and I need to get stuff done. I don’t need their opinion; I need them to take me shopping.
Having them talking in detail to an Independent assessor about me, without me, is both humiliating and breaks that trust. I would be embarrassed. They are only giving their opinion, not my truth. It damages the relationship I have with them. I wouldn’t be able to look at them the same way.
— Anon
Some other reasons to add:
- they go home after their shift and I am forgotten. It’s just a job for them, but its a life for us.
- Not all of them speak English, or are interested in learning about our disabilities.
- Some of them have opposing opinions on mental illness, they think we are just being silly and should get over it.
— Anon
The Support person might not be comfortable with answering the questions
— Anon
No support available apart from NDIS funded supports to complete. I would fire anyone after filling it out as the trust will be gone…
— Anon
I don’t have an SW who knows me well enough to give an accurate representation of me and/or my struggles. Like a lot of people with invisible disabilities, I am an expert at masking.
Independent Assessments
Submission 358
fnd the idea of being sent out of the room like a naughty child while someone who doesn’t have any understanding of my mental illnesses discusses their view of my life repugnant, reprehensible, and totally unethical.
I have no friends or family who could take on this role. Even if I did, I wouldn’t put them in a position like that. It would be at best highly uncomfortable for them, and at worst it may lead to a breakdown in that relationship.
I am the expert in my own disabilities, not anyone else. If you want to know about me, talk to ME!
— Al, NSW.
As an adult who utilises NDIS to remain as independent as possible I do not employ any individual to work with me who would be able to give accurate answers to questions, as no one is given insight into the parts of my life not related to their work. I believe it would also be a massive conflict of interest for a paid support person to answer any such survey about me.
As for ‘informal supports’ - I have none who would be knowledgeable, capable, willing or appropriate to ask.
— Anon, Melbourne.
I’ve got informal supports but I won’t be subjecting them to discussing my independence at all. With an unknown assessor.
— Julie from Adelaide
Like other posters, I do NOT give my SW permission to discuss me with some random Government flunkie. I demand to be treated with respect and decency. My medical/disability issues are MINE. Only I will get to choose who I discuss such matters with and to what degree. My issues (more that one )are complex and could not be accurately summarized by my SW (who, BTW is absolutely awesome but has no medical qualifications).
— Peter, Perth.
f feel it is a Breach of participant’s Privacy. With the very real potential to destroy relationships between supports (both formal and informal) and participant. It is likely to cause an increase need in funding if the relationship between informal support and participant is damaged beyond repair. If they want to discuss my son with me without him being present I would only answer after I had his permission to give the answer I was to give. This should ONLY be undertaken at the request of the participant if they believe it will provide necessary detail to enable the assessors to accurately reflect in their report, the participants support needs .
— No name
Independent Assessments
Submission 358
I feel it’s extremely degrading to have my family or friends report on me and my function to determine what assistance I’ll get to live.
Since joining ndis I’ve found it a degrading experience. I’m suddenly viewed as totally incapable. Never before have I been treated like this. I’m articulate and insightful. Ask me questions if you must but leave my family out of it.
I also don’t think the Vineland is an appropriate assessment for someone with my disability, ME/CFS.
AAnon, Victoria
I am able to advocate and speak for myself and object to someone else discussing me without me there.
Hubby lives and works away and does not have any direct experience of day-to-day life with me most of the time. He would not be able to give accurate answers about my function.
— Ruth, QLD
My husband has his own issues which give him a hugely unrealistic view of my disability. Quite apart from that, I am a competent articulate professional person who is perfectly able to speak for herself and is the expert in her own life. I find the concept of carrying out an assessment of me without me insulting patronising and like I am less of a person.
— Anonymous Sydney
I object to someone else discussing my family without me present!
Where is our privacy, choice and control? More systemic discrimination and abuse!
— Shannon QLD
Nobody knows more about me than me and no one is needed to speak on my behalf. It is an invasion of my right to privacy and independence and standing as a citizen too as well as an insult to my capabilities as an independent adult to have anyone speak for me when I’m not present. I’m concerned it may also be illegal.
Amiam a tertiary educated woman who has worked for 30 years in education and now have a physical disability. I insist on the right to speak for myself.
— Nichola, Queensland
Heres another thought you are welcome to share.. Don’t our GPs, SW etc already put a report in? are GPS supposed to use their valuable time to do a report AND an assessment with the IA?
The problem with their proposed use of the Vineland 3 assessment is that it has been designed, tested and validated for use with people with Autism and/or Intellectual Disability ONLY.
That is why they ask someone else about you rather than asking you directly - and for someone who is much more likely to have issues with self-awareness of what their capabilities are I can see some point to doing this as a verification.
It is a complete misuse of the Vineland to apply it to people with other disabilities. It is not validated for them, it is NOT used worldwide/tested worldwide for them, and it misdiagnoses physical symptoms as “maladaptive behaviours” that need to be “fixed”.
I feel that it is reprehensible that the NDIA are going to demand that every participant undergo this assessment regardless of whether it is appropriate to use for their disability or not.
People with disability are NOT all incompetent to answer questions about themselves. ESPECIALLY the types of questions that are in the Vineland. “Can the person understand at least 10 words?”. “Can the person write their name without spelling errors?”. “Can the person respond to a question containing the word ‘what’ appropriately?”. “Does the person return to their parent/carer when approached by a stranger on the street?”. I have an Engineering Degree with First Class Honours and work as a Software Developer on Planning/Rostering/Optimisation software for major world airlines - and they’re going to require someone else to answer this drivel about me?!! It’s degrading, insulting, and completely inappropriate.
— Anon, Victoria.
This is completely inappropriate for pwds (unless the give individual informed consent to it!). No one knows me better than I know myself, even though I have excellent support workers who know me pretty well.
Also this is likely to undermine the pwd’s trust in the person who is supposedly speaking about the pwd’s “activities”, and for some of us trusting anyone is a huge challenge in itself. The agency ought not to be engaging in behaviour that undermines trust between a pwd and their support (formal or informal).
— Kristin , rural Victoria
I do not have anyone who knows me well enough to do this apart from my psychiatrist, and she cannot be expected to attend the assessment with me.
— Caitlin, Melbourne
I know this was started a few days ago but I wish to respond. It breaches trust, privacy and puts funding at risk if I don’t bow down and allow SW to discuss me without me. I have no choice and control over how the SW is “interrogated” about me without my right to defend my needs.
— Issi Qld
Independent Assessments
Submission 358 do you what happened if we do not give consent for someone to be interviewed? I am not giving sent for this to happen without me being present due to medical trauma and gaslighting. I have copies of all my medical things now and will NOT have someone answering questions about me without me there.
One of my diagnosis is PTSD from medical trauma.
— Anon I would not give consent for someone to be interviewed without me being present. I do not think that it is appropriate or in any way acknowledging our rights by trying to enforce this. Please do not forget our many of us do not have any informal supports that would be able to even accurately answer questions about our functioning.
— Brooke, South Australia I find even putting this in words upsetting & personal… It’s a bit wordy but the best I can do right now. I really appreciate your tireless efforts on these extremely important issues.
I find this completely unacceptable & IAs (in general & especially the Vineland process being without me) are a deal breaker for me, whatever the consequences…
Have no one to be able to ‘report’ on me, & this just makes me feel more marginalised as the NDIS annot seem to comprehend this fact. I find it quite distressing that I have no ‘appropriate’ support to do this; I don’t need it shoved in my face (especially by a ‘disability’ system). Also, there is no real information of what the process entails for others in the same position – they can’t even answer their own question on the website FAQs: “What if I don’t have anyone in my life who is able to assist in this ocess who knows me and my disabilities?” The answers all start with
— AB Northern NSW
I understand that for other people parents are very involved in their life or they have a partner or someone that knows them, and their care needs very well. But this really isn’t the case for me. And I think it would be a conflict to ask a paid worker to undertake this role. Is there anyone here that could tell me what this part of the assessment looks like? Would love to hear your experiences and insights around this aspect of independent assessments. Thanks in advance
To clarify, do they use the vineland on people who do not have an intellectual disability or developmental delay? I wouldn’t have thought so as it has not been validated outside of this group. As someone who has a physical disability, will they still need to speak to someone who is not me when I am not in the room?
Ok so it’s compulsory! I tried to submit the form to take part in an independent assessment replying no to the following question, but the form would not submit unless I said “yes”: One of the assessments will require a person nominated by the participant to answer the questions without the participant present. For Example, a support person, a family member or friend, a carer or someone who knows the participant well. Does the participant consent to the agency collecting this information?
— GT
I worry that;
a. I find someone to speak on my behalf and they praise my incredibly amazing triumph over adversity (*feeble attempt at humour) and the assessor thinks “well this person obviously doesn’t need as much help so let’s reduce the funding”
or
b. I find someone to speak on my behalf and they downplay my incredibly amazing triumph over adversity (*same feeble attempt at humour) and the assessor says “oh this person needs too much help and support, can’t live alone, needs SIL (or something else not relevant to my actual life).
I have a physical disability and the Vineland is clearly not suitable for me.
— Anonymous from NSW
Perhaps we should all nominate the PM?!!
My daughter and I always represent my son and don’t know how they would ‘interview’ him, so that part needs to be clearer.
Not sure if you are collecting comments, on participants who have to rely on ‘others’? If so,
would my son be expected to attend the assessement, then leave? Both will cause behaviour of concern. I certainly would not be approving he attended, then had to leave.
— , Geelong, Vic. Am nominee for my son
Independent Assessments
Submission 358
It’s condescending to think someone else will know or understand everything on a deep level, about our daily functioning. Even my wife doesn’t really understand the enormity of the impact my disability has. What happened to nothing about us, without us?
— Adam, Hobart.