Autistic Girls and Women – Yellow Ladybugs

Submission to the Joint Standing Committee on the

NDIS Inquiry into Independent Assessments

– 31 March 2021

Introduction…………………………………………………………………………………Page 1

About Yellow Ladybugs………………………………………………………………..Page 1

Recommendation 1……………………………………………………………………..Page 2 That the NDIA stop the rollout of mandatory independent assessments immediately, and until further notice

Recommendation 2……………………………………………………………………..Page 2 That the NDIA fully investigate and evaluate a far wider range of options for ensuring the fairness/equity of the NDIS scheme.

Recommendation 3………………………………………………………………………Page 3 That the NDIA consult fully with NDIS participants and the disability community, including Autistic-led organisations such as Yellow Ladybugs before finalising any changes to the way the NDIS is accessed.

Recommendation 4………………………………………………………………………Page 3 That the NDIA commit to ensuring that any future changes to the NDIS, including decisions around assessments are fully co-designed with the disability community, including Autistic-led organisations such as Yellow Ladybugs.

Recommendation 5………………………………………………………………………Page 3 That the NDIS thoroughly consult and engage with the autistic community in order to understand the specific concerns members of this community (including parents/carers of autistic individuals, and autistic individuals themselves) have about what the proposed changes will mean for the many autistic individuals who have complex, but hidden needs.

Yellow Ladybugs Community Response to Inquiry TOR ………………..Page 4

Appendices ………….………………………………………………………………………Page 11

31 March 2021

Yellow Ladybugs Submission: Joint Standing Committee on the NDIS Inquiry into Independent Assessments

Introduction

Yellow Ladybugs is grateful for the opportunity to make a submission to the Inquiry into NDIS Independent Assessments (the Inquiry). In making this submission, Yellow Ladybugs intends to further its stated mission to improve the lives of autistic girls and women1 and gender diverse individuals by ensuring that they are seen, heard, supported and valued. As an autistic-led organisation, our submission also reflects both the lived experience and the professional expertise of the actually autistic community. We would welcome the opportunity to speak further to the Inquiry, to ensure that the particular concerns of autistic girls, women and gender diverse individuals are adequately addressed.

Yellow Ladybugs represents a strong, motivated and engaged community of autistic girls, women, gender diverse individuals and parents/carers and families. In making this submission, we are reflecting the views of our community, who have told us unequivocally that they have very strong concerns about the shift to independent assessments, and specifically that this process will lead to autistic girls and women facing even more barriers than they already do in accessing NDIS support. As a bare minimum, we consider it critical that the NDIS consults deeply and meaningfully on this topic with the actually autistic community. The principle of ‘nothing about us without us’ must be applied, as enshrined in the NDIA’s acknowledgement of the social model of disability, and its commitment to the principles of ‘choice’ and ‘control’ as underpinning the NDIS scheme.

“The overall concern I can see from parents and participants is that it takes time to develop relationships with specialists for them to be able to understand what areas they are struggling in and to work with people to assist them. Independent assessors cannot find out anything about a person, their needs or how their disabilities affect their day-to-day lives in a mere 3 hour session. The questions also do not allow for any elaboration; i.e. ‘can you dress yourself?’ Well, yes you may be able to dress yourself, but can you use a washing machine, are you able to iron your clothes, do you need assistance with buying clothes that are fashionable, stylish and functional? There are so many things that can be behind someone being able to do something as “simple” as dressing themselves. Also, independent assessors are not specialists and this really detracts from the in-depth assessments that specialists do, that specialists do years of training to be able to do. At the end of the day, what the heck are they thinking?”

SUBMITTED TO YELLOW LADYBUGS

About Yellow Ladybugs

1 This document uses identity-first language (‘autistic’) based on our community’s preference. We use the terms ‘women’ and ‘girls’ as our key focus, but also support and represent gender diverse autistic individuals. We are committed to building knowledge about the less visible and less understood internalised autistic experience, and which is more common for autistic women, girls and non-binary individuals, but seen in all genders.

and women through the creation of positive and inclusive experiences for our members and through advocating for the rights of all autistic individuals and celebrating their neurodiversity.

Yellow Ladybugs runs regular informal social events that offer peer-to-peer connections for autistic girls3 generally between the ages of five and sixteen. Our events bring our members together in an inclusive, fun and sensory-friendly setting. Underpinning every Yellow Ladybugs event, our mission is to foster a sense of belonging for all our autistic girls, to help them connect with their tribe and to instil autistic pride within our community.

We are also committed to changing the common misconceptions about autism, ensuring autistic girls and women are properly supported according to their needs, and building a society that values and empowers all autistic individuals. We actively seek to address the many challenges the community of autistic girls and women face, including barriers to diagnosis, lack of inclusion in school and employment, and access to support services.

Yellow Ladybugs is an inclusive organisation, and while we have a particular focus on autistic girls and women, we recognise all genders and welcome trans and gender diverse autistic individuals into our community. We consider that the different presentations of autism exist as a spectrum across all genders, and as an organisation, we seek to dismantle all stereotypes which are harmful to the autistic community. We know that autistic girls and women, and particularly those with hidden needs, continue to be significantly disadvantaged, however, and we remain committed to our mission to reduce these disadvantages.

Recommendations to the Inquiry into NDIS Independent Assessments

Yellow Ladybugs is committed to ensuring that the particular vulnerabilities of autistic girls, women and gender-diverse individuals, who are NDIS participants, or who may be applying to access the NDIS, are addressed as part of this Inquiry. Yellow Ladybugs makes five recommendations to the Inquiry that reflect this commitment, and that are informed by our experience and our deep interest in shaping and creating change.

1. The rollout of mandatory independent assessments must be stopped.

Recommendation 1: That the NDIA stop the rollout of mandatory independent assessments immediately, and until further notice

Recommendation 2: That the NDIA fully investigate and evaluate a far wider range of options for ensuring the fairness/equity of the NDIS scheme.

We are stating our strong reservations about a policy which makes independent assessments mandatory. Autistic girls and women (particularly those with an internalised autistic presentation)

3 Yellow Ladybugs also welcomes gender diverse autistic individuals to our events.

already experience significant disadvantages in getting their support needs acknowledged through the NDIS process. For many girls and women, these barriers exist even when the autistic individual and their family/carers are able to provide detailed expert reports from paediatricians, psychologists and other allied health professionals. Whilst we understand the intention to make the assessment process more accessible and equitable, we have very significant concerns about a process which sees independent assessors, using generic tools, making decisions about complex individuals on the basis of a single meeting. Yellow Ladybugs is therefore calling on the NDIA to stop the rollout of the mandatory independent assessments scheme immediately, and until further notice, and to fully investigate and evaluate a far wider range of options for ensuring fairness/equity of the NDIS scheme going forward.

2. ‘Nothing about us without us’

Recommendation 3: That the NDIA consult fully with NDIS participants and the disability community, including Autistic-led organisations such as Yellow Ladybugs before finalising any changes to the way the NDIS is accessed.

Recommendation 4: That the NDIA commit to ensuring that any future changes to the NDIS, including decisions around assessments are fully co-designed with the disability community, including Autistic-led organisations such as Yellow Ladybugs.

Recommendation 5: That the NDIS thoroughly consult and engage with the autistic community in order to understand the specific concerns members of this community (including parents/carers of autistic individuals, and autistic individuals themselves) have about what the proposed changes will mean for the many autistic individuals who have complex, but hidden needs.

As an autistic-led organisation, Yellow Ladybugs would like to remind the Inquiry of the importance of ‘nothing about us without us’. Direct engagement with autistic community (including parents and carers), and with the autistic-led organisations who advocate for this community, is of critical importance in ensuring that the needs of the autistic community are adequately addressed during the Inquiry. Put simply, lived experience needs to be at the centre of this discussion. Yellow Ladybugs is calling on the NDIA to consult fully with NDIS participants and the disability community, including Autistic-led organisations such as Yellow Ladybugs, before finalising any changes to the way the NDIS is accessed.

Specifically, the NDIA needs to consult and engage with the autistic community in order to understand the particular concerns members of this community (including parents/carers of autistic individuals, and autistic individuals themselves) have about what the proposed changes will mean for the many autistic individuals who have complex, but hidden needs.

Beyond consultation, Yellow Ladybugs is calling on the NDIA to ensure that any further changes to the NDIS, including decisions around assessments, are fully co-designed with the disability community including Autistic-led organisations such as Yellow Ladybugs.

Yellow Ladybugs Community Response to Inquiry Terms of Reference

Yellow Ladybugs has collected feedback from our community, and our key concerns are outlined below, grouped in response to the Inquiry Terms of Reference. These concerns are all reflected in the overwhelmingly negative experiences of those individuals and their families who have participated in the pilots for the independent assessment. To date, none of these concerns have been adequately addressed by the NDIA, and it is reasonable to conclude that the introduction of mandatory independent assessments is to all intents and purposes a cost-cutting measure on the part of the NDIA.

“I am concerned that I am struggling with a teenager who already feels like an outsider, and struggles with shame and feelings of rejection. An external assessment by someone who doesn’t know them and hasn’t worked with them will create terrible anxiety and sets them up for feeling like needing support is a privilege, rather than a human right…These processes are usually dehumanising, especially when insufficiently resourced. I am very concerned.” Submitted to YLB (See Appendix A)

1. Independent assessments are inappropriate for autistic individuals and highly likely to cause

trauma

Terms of Reference: (k) the appropriateness of independent assessments for people with particular disability types, including psychosocial disability

The trauma-impact on autistic individuals, including autistic children, in having to undergo a face-to- face interview process, whereby they are required to demonstrate their ability to function to a complete stranger, is significant. This process, has the potential to cause serious damage to the wellbeing of individuals who are already vulnerable and disadvantaged by their disability. This is especially the case for the many autistic girls and women (along with autistic individuals of other genders) who experience a more internalised autism presentation, and who may mask their difficulties – in other words, whose disability is hidden.

“As a carer, the current planning process causes enormous stress. After each planning meeting I develop a migraine. Every time. At least I am able to shield my children from that. With the independent assessment, my children will be distressed and harmed by a stranger asking difficult and personal questions highlighting their “differences”. As a parent I am being asked to harm my children in an effort to get funding to support them. There are already so many hurdles and difficulties. It’s an awful enough proposition that I wonder if it will even be worth it.” Submitted to YLB (See Appendix A)

“My main concern is that our daughter masks well and so a one-off visit from a stranger will not in any way show what she is and isn’t capable of doing in a sustained and regular way in daily life. We also set up our

household to work as well as possible for her, so while she may be able to perform a particular task at home she may not be able to do the same thing in another environment. I feel like there will be pressure to ‘provoke’ behaviours to demonstrate disability on demand which seems like a cruel and traumatising experience for a child. We have also never taken our child to planning meetings as we don’t think it’s in her interest to listen to a long conversation about what she struggles with. This now seems to be unavoidable.” Submitted to YLB (See Appendix A)

This case study below highlights our deep concern over the potential for inexperienced assessors to cause extreme distress and lifelong trauma in the child or individual being assessed. In its current form, the NDIS independent assessment process, fails completely in the duty of care and ‘do no harm’ principles that should be at the forefront of any assessment process.

Case Study: [When my child was being assessed for eligibility 4 years ago]. This was our initial assessment when we originally applied for NDIS. We were told we had to have an independent assessment and that this was to be done in our home so that the assessor could meet the family and see our household. When the assessor arrived she was very engaging and she did attempt to make my daughter (the applicant) feel relaxed. Despite her best intentions when discussing the functional capacity of my 8 year old child, doing this in the presence of my child was triggering for her. Our child quickly became very distressed and agitated. She rapidly escalated into unsafe behaviours including risk taking and self-harm (smashing glass and walls etc). At the time I was home alone with my two other younger children who also became very upset and distressed. Our eldest child (the applicant) continued to escalate and she wanted the assessor to leave. The assessor ended up physically restraining my child on the floor while I tried to calm my other children. This was a sitting restraint and went on for about 45 minutes. This particular worker advised my child that she was from the government and that she would not leave until she deemed that the family where no longer at risk and that she had to calm down before she would be let go. At the time I wasn’t actually even sure what powers the assessor had. I wasn’t sure if she was going to engage the police as she had deemed my other children at risk from the escalated behaviours. I wasn’t sure if we would be rejected for our NDIS entirely if I asked the assessor to leave or stop. This is not a personal attack on the assessor but highlights the complexity and risks associated with making independent assessments compulsory. We really had no information prior to the meeting about rights and obligations. I was told by the assessor that she was a contract worker who was only working on the implementation of NDIS. I was unable to contact that worker again. It is fair to say all involved have trauma from this event – the participant, me and my other children. Submitted to Yellow Ladybugs (See Appendix C)

2. Independent assessments are going to result in poorer outcomes for NDIS participants

Terms of Reference: (a) the development, modelling, reasons and justifications for the introduction of independent assessments into the NDIS (f) the implications of independent assessments for access to and eligibility for the NDIS; (g) the implications of independent assessments for NDIS planning, including decisions related to funding reasonable and necessary supports

Yellow Ladybugs asserts that the requirement for NDIS applicants to undergo a mandatory independent assessment, where no choice is offered as to who makes the assessment, no choice is

given as to which type of assessment tools will best suit the individual in question, and where individual participants have no control over how this functional assessment translates to an NDIS plan, directly contradicts the NDIS principles of individual choice and control, and comprehensively undermines the original purpose of the scheme. We also note that mandatory assessments were not recommended by the Tune Review, which instead recommended a discretionary process.

“I have a few concerns

as someone without informal supports - I don’t have any one person who is feel appropriate for doing the Vineland - so it can’t be done

the assessments being used do not reflect my disability

I have a relationship with my therapists and should be able to continue to have them chose the right assessments for my situation

I don’t do well with new people - this is putting me at an unfair disadvantage by forcing me to speak with someone about my life!” Submitted to YLB (See Appendix A)

“As a registered nurse I knew what we wanted, and what to say during the NDIS assessment. What I found, surprise, surprise, was that we got a very generic outcome, all based around dollars, and not [meeting the] independent needs for our 9 year old daughter” Submitted to YLB (See Appendix A)

3. The independent assessors are not going to be truly independent or adequately qualified

Terms of Reference: (d) the independence, qualifications, training, expertise and quality assurance of assessors

Based on the experiences of Yellow Ladybug members who have participated in the independent assessments pilot, it remains to be seen how the one-size-fits-all group of allied health professionals who will make up the pool of independent assessors will in any way meet the level of understanding and experience required to be properly understanding the needs of complex individuals.

It is clear that the lack of expertise and experience of the independent assessors will significantly disadvantage autistic girls, women and gender diverse individuals. The assessment of individuals, whose needs are complex, but also hidden, requires the highest level of expertise, experience and empathy. Many individuals and families already experience significant difficulties in finding specialists who truly understand the complexities of autism. This process succeeds when specialists undertaking an assessment have taken the time to truly know the participant, and to form a respectful professional relationship, built on a foundation of genuine trust. To expect a generic pool of minimally-trained assessors to come even close to meeting the required level of understanding is highly unrealistic, and this is a point that is extremely concerning for the autistic community.

Yellow Ladybugs also has serious questions about the independence of the assessors when they have been directly contracted by the NDIA. This is not a question that the NDIA have provided an adequate response to.

“My biggest concern is that my bug is great at masking so these independent assessors will see her

‘Cooking’ (big sister gives that answer, [child] has never been involved in cooking). If they ask questions about how she is able to cope around the house she will always say she does really well, but in reality she is always under a blanket at home and most often doesn’t have the energy to complete tasks such as dressing. How are they going to be able to assess that these little people comprehend how they should respond?” Submitted to YLB (See Appendix A)

Case Study My adult daughter uses lots of what I call

Based on the experience of pilot participants, we are also concerned about the entire process being unethical, as it puts autistic people in a position where they are vulnerable to manipulation. The assessment tools have not been created for assessing neuro-disabilities such as autism, and because of this the actual questions are vague, and the answers given are easily open to misinterpretation.

“Based on my experience, a lot of autistic people are going to be put in a vulnerable position by the assessments, as there is the high potential for an inaccurate self-assessment of ones skills. For example -

What happens with people who don’t think about that distinction? What if they answer only based on a support worker? Would they answer some questions as ‘no difference’ which implies support wouldn’t help BUT in reality a therapeutic support is needed.

NDIS participants know ourselves best and need to be involved. But through my journey, especially at the start, I had little sense of the areas of my life that were affected by being autistic, or the types of support available to me.

I have also spoken to my OT who did the last section of the independent assessment for me. This section is meant to be completed by a family member, but I nominated my OT. They had her do Vineland, which is a questionnaire created for kids.

These are some of the questions they asked my OT about me, as a 48 year old mother of two children:

Does she tantrum regularly?
Will she run away from her carer when out in public

Seriously, how can they make a case that this assessment is appropriate? The questions need to be:

Does she become overwhelmed by sensory inputs?
Does this affect her capacity for emotional regulation?
Does she need to remove herself from stressful sensory inputs?

I thought the questionnaires I did for my part of the independent assessment were a bad fit, but doing an assessment for an autistic adult, using a tool that is designed for children? And then not even designed for autistic children? We need to fight this!

Yellow Ladybugs Submission to: The Joint Standing Committee into NDIS Inquiry into Independent Assessments 31 March 2021

Appendix A: Feedback from Yellow Ladybugs Community Members

Appendix B: Case Study – Experience as participant in the independent assessment pilot (Autistic mother of autistic children)

Appendix C: Yellow Ladybugs Submission To NDIS Consultation On Access And Eligibility Policy For Independent Assessments

APPENDIX A

Feedback from Yellow Ladybugs Community Members

Response	Comment
1.	My biggest concern is that my bug is great at masking so these independent assessors will see her “functioning” well and not see the dysregulation, the social issues, the anxiety, the poor executive functioning. And that NDIS will use this assessment to determine her funding rather than the formal diagnostic reports or her therapists reports.
2.	If my [child] is asked “can you get yourself dressed?” her enthusiastic, eager-to-please self will say “yes, I can get myself dressed!” What the assessor won’t see is the hour plus it takes her to actually get dressed, being prompted by us the entire time to get out of your pjs, open your drawers to look for where your clothes are (I can’t find my clothes), choose what to wear (no a winter jacket is not an appropriate choice in summer), stop reading a book / playing with that / being distracted by your sisters, put your socks on (but they don’t feel right!), put your shoes on (where are your shoes?!) etc. And that’s not even factoring in the teeth brushing or hair brushing sagas. Let alone any of her other concerns, like anxiety, social issues, self-care, motor skills, dysregulation, sensitivities etc.
3.	As a carer, the current planning process causes enormous stress. After each planning meeting I develop a migraine. Every time. At least I am able to shield my children from that. With the independent assessment, my children will be distressed and harmed by a stranger asking difficult and personal questions highlighting their “differences”. As a parent I am being asked to harm my children in an effort to get funding to support them. There are already so many hurdles and difficulties. It’s an awful enough proposition that I wonder if it will even be worth it.
4.	They won’t allow trial [pilot] participants to be assessed over multiple consultations because if they do that then they must acknowledge that participants require accommodations for assessments. and those accommodations will force the results of the trial to show that participants have complex needs that can’t possibly be assessed on the phone over the course of a couple of hours. Rendering the trial useless (for them) because they won’t have the positive data to convince the governing bodies that these independent assessments are fair and necessary.
5.	Lots of parents of children with a disability have reasons why they can’t do a two hour session (autistic themselves, personal needs or work challenges for example). If the NDIS don’t flex, they are only going to get feedback from a portion of our population. The ones that are the most impacted might be excluded
6.	I was diagnosed in 1997 - so no “level”. I find it stressful enough having to go to the doctor once a year to get the mental health care plan / review done. Given lots of my friends who have NDIS have found the entire process incredibly stressful, I’m not interested in applying for myself. I work 4 days/week, so I’m able to afford the “gap” for Medicare psych appts and other assistance required myself. (I’m currently doing some music therapy, for instance.) All the bad press the independent assessments is getting puts me off more.
7.	Our [child] always answers a question, even if it’s not the right answer. She is eager to please and will often give an answer she has heard being given for that question before. Such as what is your favourite thing to do? Cooking. (Big sister gives that answer, [child] has never been involved in cooking). If they ask questions about how she is able to cope around the house she will always say she does really well, but in reality she is always under a blanket at home and

Response	Comment
	most often doesn’t have the energy to complete tasks such as dressing. How are they going to be able to assess that these little people comprehend how they should respond?
8.	My [child] is an expert at social interaction and masking. The things that people find endearing and cute are the lines she’s learnt she gets an ‘awwww’ response to, so she does them regularly. The person she presents as in public is vastly different to the person she is once she is home. When she is home and safe without the demands of being part of school life she is fierce, she yells and screams, she strips naked because even having clothes on her is too demanding, every food item has to be separated with an individual fork because letting the food touch each other makes her hurt. If I kiss her on the cheek she wipes it away because it vibrates and hums on her cheek and makes her hurt inside, but she will let a stranger hug her if she thinks it’s the social norm. She is an expert at making everyone around her feel comfortable and like they are home but it crumbles as soon as we are back to safety of her and I, where she can really be herself. Independent assessments are not designed for [children] like mine, who aim to please and thrive on being perfect and acting like everyone wants them to. She can handle that for an hour or two, but it’s in no way representative of who she really is and what her needs are.
9.	No unqualified person should be able to overrule the opinion of a qualified health professional. End of discussion
10.	How can they categorise a person’s needs in 3 hours?
11.	I have a few concerns

as someone without informal supports - I don’t have any one person who is feel appropriate for doing the Vineland - so it can’t be done
the assessments being used do not reflect my disability
I have a relationship with my therapists and should be able to continue to have them chose the right assessments for my situation
I don’t do well with new people - this is putting me at an unfair disadvantage by forcing me to speak with someone about my life! | | 12. | I worked with my support worker for months to build a good relationship in order to get a report. I struggle without a support network, currently my psychologist is dealing with personal things and my support worker’s on holiday so I don’t have that. | | 13. | The overall concern I can see from parents and participants is that it takes time to develop relationships with specialists for them to be able to understand what areas they are struggling in and to work with people to assist them. Independent assessors cannot find out anything about a person, their needs or how their disabilities affect their day-to-day lives in a mere 3 hour session. The questions also do not allow for any elaboration; i.e. ‘can you dress yourself?’ Well, yes you may be able to dress yourself, but can you use a washing machine, are you able to iron your clothes, do you need assistance with buying clothes that are fashionable, stylish and functional? There are so many things that can be behind someone being able to do something as “simple” as dressing themselves. Also, independent assessors are not specialists and this really detracts from the in-depth assessments that specialists do, that specialists do years of training to be able to do. At the end of the day, what the heck are they thinking? | | 14. | My [child] wasn’t comfortable with a stranger coming to talk to her so we opted out [of the pilot]. I was interested to see the process, but from what they told me they would ask my child to perform tasks such as get themselves a drink or prepare a snack and then do assessments and have a chat. This would certainly lead to meltdown and/or shutdown so I fear there’s no way they’ll get an accurate understanding of our situation and needs with this new review format. |

Response	Comment
15.	As a Registered nurse I knew what we wanted, and what to say during the NDIS assessment. What I found, surprise surprise, was that we got a very generic outcome, all based around dollars, and not [meeting the] independent needs for our 9 year old daughter
16.	My adult daughter uses lots of what I call “agreement phrases”. These are short replies that make it sound like she understands what she is agreeing to. Her current phrase is “I was thinking that”.
One recent one situation - I had seen several older model cars around town. I made mention that I had just seen Herbie The Love Bug (VW with no 53 on door) and that there must be a car event on. Her reply was “I was thinking that”.
Now, she had not seen any of these cars as I saw them when out by myself. She has no idea what a car event is, or who Herbie was. But to someone that did not know her it would appear that she fully understood my comment.
Independent Assessors will not get to see the after-effects of someone having to perform and repeatedly admit that they cannot do something.
They will not let you explain the answer in a set situation eg, the WHODAS question about walking a long distance, such as one km or equivalent, which might be simplified to can you walk around the block. Lots of things need to be met before this would happen. Just a few what ifs:

What shoes am I wearing, are they supportive?
What is the weather, too hot?
Who would be walking with me, encouraging me?
Am I even interested to the reason why I need to go around the block?
Is it late in the day when I am tired?
Do I have something more interesting I am in the middle of doing something that I don’t want to stop doing? Now my daughter could walk this distance it she was wearing proper shoes, was early in the day with her support worker, and they were going to visit their favourite rock tree. But if I said lets go for a walk now (later in the day and no reward at the end)…

I did hear a story: Can you cook for yourself? Proud reply was “yes”. Actually all this person was doing was taking a meal out of the fridge and putting it in the microwave. A plate that a family member had prepared and placed in fridge earlier in the day for evening meal. | | 17. | My main concern is that our daughter masks well and so a one-off visit from a stranger will not in any way show what she is and isn’t capable of doing in a sustained and regular way in daily life. We also set up our household to work as well as possible for her, so while she may be able to perform a particular task at home she may not be able to do the same thing in another environment. I feel like there will be pressure to “provoke” behaviours to demonstrate disability on demand which seems like a cruel and traumatising experience for a child. We have also never taken our child to planning meetings as we don’t think it’s in her interest to listen to a long conversation about what she struggles with. This now seems to be unavoidable. | | 18. | I am concerned that I am struggling with a teenager who already feels like an outsider, and struggles with shame and feelings of rejection. An external assessment by someone who doesn’t know them and hasn’t worked with them will create terrible anxiety and sets them up for feeling like needing support is a privilege, rather than a human right.

I spent many years as a lawyer supporting vulnerable people against government agencies, and I once had an external assessment for a WorkCover claim. These processes are usually dehumanising, especially when insufficiently resourced. I am very concerned. |

APPENDIX B

Case Study: Autistic mother of autistic children

Experience as a participant in the Independent Assessments Pilot.

No accommodations when setting up the independent assessments appointment. I signed up for this and got the call today. redacted: s22 They wanted to make an appointment for a two hour session. I said “I’m autistic, can this be split up over two appointments?’ The answer was: ‘No, if you need that, you can’t be in the test pilot. If you want you can do the first 20 minutes and get someone else to do the rest.’ I then asked, but how can an independent assessor assess me if they only talk to me for 20 minutes? There was no answer. So I said I can do the two hours.

My experience during the assessment. The independent assessments are unethical and by this I am referring to us autistic people being vulnerable to manipulation. The assessment tools being used have not been created for assessing neuro disabilities such as autism. Because of this the actual questions are vague, and this makes them overwhelming.

Based on my experience, a lot of autistic people are going to be put in a vulnerable position by the assessments, as there is the high potential for an inaccurate self-assessment of ones skills. For example -

high level questions had my brain bopping from every possible answer, the effort it takes to corral my brain to one answer, and also have my brain having narratives:

APPENDIX C

23 February 2021

YELLOW LADYBUGS SUBMISSION TO:

NDIS CONSULTATION ON ACCESS AND ELIGIBILITY POLICY FOR INDEPENDENT

ASSESSEMENTS

Yellow Ladybugs is pleased to make the following submission to the NDIS consultation process on the ‘Access and Eligibility Policy for independent assessments’. In making this submission, we draw on the NDIS experiences of our extensive community of autistic girls, women and individuals, and parents/carers.4

ABOUT YELLOW LADYBUGS

Yellow Ladybugs is an autistic-led non-government organisation with strong bridges to the community. We are dedicated to the happiness, success and celebration of autistic girls and women. We believe all autistic individuals of all genders deserve to be recognised, valued, accepted and supported in order to realise their full potential. We are committed to shining a light on autistic girls and women through the creation of positive and inclusive experiences for our members and through advocating for the rights of all autistic individuals and celebrating their neurodiversity.

Yellow Ladybugs runs regular informal social events that offer peer-to-peer connections for autistic girls and gender diverse individuals generally between the ages of five and sixteen. Our events bring our members together in an inclusive, fun and sensory-friendly setting. Underpinning every Yellow Ladybugs event, our mission is to foster a sense of belonging for all our autistic girls, to help them connect with their tribe and to instil autistic pride within our community.

Yellow Ladybugs is an inclusive organisation, and while we have a particular focus on autistic girls and women, we recognise all genders and welcome trans and gender diverse autistic individuals into

4 We use identity-first language (‘autistic’) based on our community’s preference. We use the terms ‘women’ and ‘girls’ as our key focus, but also support and represent gender diverse autistic individuals. We are committed to building knowledge about the less visible and less understood internalised autistic experience, and which is more common for autistic women, girls and non-binary individuals, but seen in all genders.

our community. We consider that the different presentations of autism exist as spectrum across all genders, and as an organisation, we seek to dismantle all stereotypes which are harmful to the autistic community. We know that autistic girls and women, and particularly those with hidden needs, continue to be significantly disadvantaged, however, and we remain committed to our mission to reduce these disadvantages.

SUBMISSION: OPENING STATEMENT.

The NDIS consultation paper “Access and Eligibility Policy for independent assessments’ has asked us to consider a number of questions, which we have responded to in more detail below. Over and above this, we would like to take this opportunity to register our strong reservations about a policy which makes independent assessments mandatory. Autistic girls and women (particularly those with an internalised autistic presentation) already experience significant disadvantages in getting their support needs acknowledged through the NDIS process. For many girls and women, these barriers exist even when the autistic individual and their family/carers are able to provide detailed expert reports from paediatricians, psychologists and other allied health professionals. Whilst we understand the initiative to make the assessment process more accessible, we have very serious concerns over a process which sees independent assessors making decisions about complex individuals on the basis of a single meeting.

We also question the claim that independent assessments will ensure the process is fair and equitable, in part by ensuring that bias doesn’t occur where the assessor is overly familiar with, and sympathetic to, the participant. By this same logic, a child’s school report should not be written by their class teacher, because the teacher may be biased in the way they have assessed the child. When we are talking about disabled individuals, with complex, but often hidden needs, we maintain that the assessment of their needs is best made by the experienced professionals who are already engaged, and familiar with, and most importantly, trusted by that individual.

Yellow Ladybugs represents a strong, motivated and engaged community of autistic girls, women, gender diverse individuals and parents, families and carers. Our community members have told us unequivocally that they have very strong concerns about the shift to independent assessments, and specifically that this process will lead to autistic girls and women facing even more barriers than they already do in accessing NDIS support. As a bare minimum, we consider it critical that the NDIS consults deeply and meaningfully on this topic with the actually autistic community. The principle of ‘nothing about us without us’ must be applied, as enshrined in the NDIA’s acknowledgement of the social model of disability, and its commitment to the principles of ‘choice’ and ‘control’ as underpinning the NDIS scheme. In addition to making this submission, Yellow Ladybugs would welcome the opportunity to represent our community directly with the NDIS as part of the public consultation process.

RESPONSE TO CONSULTATION QUESTIONS

Learning About the NDIS

1. What will people who apply for the NDIS need to know about the independent assessments

process? How this information is best provided?

Accountability is vital and must be communicated at the outset. From the lived experience of our community, accountability is often dismal in the current NDIS planning process. We therefore welcome the chance to rectify this if a major overhaul of the assessment process is underway.

Case study: “I will say that most planners have been engaged and have understood clearly the support needs we have outlined to them. However on one instance our planner did not understand our message and he did not seek clarification. We could not contact him to address mistakes that he had made. He submitted the plan and had it approved and we were told any review would take at least a year. There had been confusion around which line items were self-managed and which were agency managed. On that occasion it was impossible to rectify the plan. Once the plan was approved the only avenue was formal review, despite aspects of the plan clearly being erroneous. I know the review process has recently been streamlined but there still does appear to be a lack of accountability. Contacting those that are making decisions should not be difficult.”

Accessing the NDIS

3. How can we clarify evidence requirements from health professionals about a person’s disability

and whether or not it is, or is likely to be, permanent and life long?

Autism is a life-long neurodevelopmental disability. It is part of the autistic person’s identity and as such there will be no variation in the ‘condition’ as far as life-long impacts and supports that are needed. Like any disability, the impact may vary day-to-day and year-to-year, but it should be made clear throughout the NDIS process that an autistic individual does not need to constantly prove that they require supports and that their disability impacts their daily life. Once a diagnosis is received and statements are made about how the individual chooses to live their live, it should be understood and explicitly acknowledged that the applicant requires support for their lifetime.

Undertaking an independent assessment

5. What are the traits and skills that you most want in an assessor?

Independent assessors would require a very deep level of expertise on autism, including detailed knowledge of the more ‘internalised’ presentation of autism that is experienced by many autistic girls and women (as well as gender diverse autistic individuals and some autistic cis-males). This means that the assessors will be able to look past the fact that the individual being assessed may present well and appear to be coping, and to understand that their needs, and their disability may be hidden. It is critical that the NDIS engages with the autistic community, for both training and programme development in relation to the independent assessments policy, as the depth of understanding required is complex and extensive.

In addition to having a properly informed understanding of the full diversity of the autism spectrum, it is absolutely critical that independent assessors are able to demonstrate compassion. Trauma- informed care should be top priority. This means acknowledging the past trauma of the participant and possibly the carer/guardian. It also means understanding that many autistic children have at least one autistic or neurodivergent parent who themselves may be needing support with the application and interview process. Feedback from our community confirms that these types of interview processes can be triggering for everyone involved. Prior case notes, reports and assessments MUST be read by the independent assessors, with no excuses made on that front.

6. What makes this process the most accessible that it can be? For example, is it by holding the

assessment in your home?

This should be driven by the individual and their family/carers needs, and not the assessor. Nobody wants the applicant/participant to become distressed during an assessment. Our concern, however, is that setting the applicant up for a less traumatic interview (e.g., at their home with their comforts and supports) may result in the applicant being told their functional capacity is considered to be average and no supports are needed. And that this assessment is made, on the basis of this single observation, despite previous professional reports which clearly outline the applicant’s support needs.

Alternatively, we are concerned that forcing an autistic applicant into an assessment process where they are uncomfortable, and unable to access their usual supports makes it more likely that they have a meltdown or become overwhelmed and agitated. The assessor may then find that supports are needed, but this comes at an unacceptable traumatic personal cost to the individual involved. We are seeking further clarification on whether these are the two options that participants are going to be forced into choosing between. We also note that even an assessment at home can be very triggering given it’s the applicant’s safe space – and it is possible that the applicant may both be traumatised by this invasion of their safe space, but still assessed as not requiring support due to the efforts that have gone into supporting them to undergo the assessment in their own home.

Exemptions

8. What are the limited circumstances which may lead to a person not needing to complete an

independent assessment?

We would ask that as part of the consultation process, further clarification is provided on the matter of exemptions. There needs to be clear and explicit information on how a person gets an exemption. We consider that if an exemption can be given for safety purposes, this should include extreme distress. Further information is needed on what documentation is requirement for an applicant to be exempt, and on who is responsible for reviewing and deciding on exemptions.

We provide the following real life case study as an example of where an exemption from the independent assessments process clearly needs to be agreed to. This case study also highlights our deep concern over the potential for inexperienced assessors to cause extreme distress and lifelong

trauma in the child or individual being assessed. Duty of care and the principle of ‘do no harm’ must be at the front of this process, and if this cannot be guaranteed, then any individual at risk of trauma and extreme distress must be allowed on exemption.

Case Study: When my child was being assessed for eligibility 4 years ago. This was our initial assessment when we originally applied for NDIS. We were told we had to have an independent assessment and that this was to be done in our home so that the assessor could meet the family and see our household. When the assessor arrived she was very engaging and she did attempt to make my daughter (the applicant) feel relaxed. Despite her best intentions when discussing the functional capacity of my 8 year old child, doing this in the presence of my child was triggering for her. Our child quickly became very distressed and agitated. She rapidly escalated into unsafe behaviours including risk taking and self-harm (smashing glass and walls etc). At the time I was home alone with my two other younger children who also became very upset and distressed. Our eldest child (the applicant) continued to escalate and she wanted the assessor to leave. The assessor ended up physically restraining my child on the floor while I tried to calm my other children. This was a sitting restraint and went on for about 45 minutes. This particular worker advised my child that she was from the government and that she would not leave until she deemed that the family where no longer at risk and that she had to calm down before she would be let go. At the time I wasn’t actually even sure what powers the assessor had. I wasn’t sure if she was going to engage the police as she had deemed my other children at risk from the escalated behaviours. I wasn’t sure if we would be rejected for our NDIS entirely if I asked the assessor to leave or stop. This is not a personal attack on the assessor but highlights the complexity and risks associated with making independent assessments compulsory. We really had no information prior to the meeting about rights and obligations. I was told by the assessor that she was a contract worker who was only working on the implementation of NDIS. I was unable to contact that worker again. It is fair to say all involved have trauma from this event – the participant, me and my other children.

The result of this traumatic assessment was a decent NDIS package but was it really worth the trauma? I’m extremely concerned that my child might be forced to do another assessment with this history documented. At what point do we say you do not need to SHOW me a distressed child or individual and instead that I will take your evidence of the fact?”

Quality assurance

9. How can we best monitor the quality of independent assessments being delivered and ensure

the process is meeting participant expectations?

Open and two-way communication is a must. The independent assessor should be delivering their message directly to the applicant and their family/carers. This communication must be direct and not hidden behind letters and reports. If the independent assessors are going to make sweeping assessments based on a short observation period, then as a bare minimum, they should be easy to access directly to ask questions if needed.

We also consider that if any assessor receives more than three complaints they should be suspended until a review can be completed. There needs to be some boundaries, and protections for the applicants and their families, who are already vulnerable due to their disability. We are concerned by the potential for the independent assessors to have complete power, with the applicant having no proper recourse.

Communications and accessibility of information

10. How should we provide the assessment results to the person applying for the NDIS?

Applicants or parent/guardian need to be asked how they prefer assessment results to be delivered. Many people within our community would probably prefer a report to be sent first allowing processing time. Followed up by a phone call or meeting if queries need to be addressed or if the applicant wants the assessment reviewed.

The best practice principles of open two-way communication should always be applied, and this is best achieved through a DRAFT review process, where the assessor delivers a draft report for feedback before the report is finalised. If the process is to be truly transparent we should allow for fair discussion and open of the assessment points prior to submission.

Yellow Ladybugs is proud to advocate for the rights of autistic girls and individuals, and we would welcome the opportunity to participate further in the NDIS consultation process on Access and Eligibility Policy for Independent Assessments