Submission in response
to the inquiry into Independent Assessments under the NDIS, by the Joint Standing Committee on the National Disability Insurance Scheme
[Image not converted to Markdown – “Image of child playing” – check the source PDF page for the actual content]
aeiou FOUNDATION infor children with autism Registered NDIS Provider
Monday, 29 March 2021 Aeiousubmission310
Contents
1.0) Introduction
Terms of reference
2.0) Independent Assessments and the use of social development to inform access and planning decisions.
3.0) Independent Assessments and the removal of disability lists.
4.0) Independent Assessments, developmental delay and autism.
5.0) Independent Assessments and extending the age range of the Early Childhood Approach.
6.0) Summary of recommendations
7.0) Appendix 1. Survey question to current AEIOU families, February 2021
Independent Assessments
Submission 310
1.0) Introduction
Thank you for the opportunity to make a submission in response to the inquiry.
AEOIU Foundation is one of Australia’s largest providers of autism-specific early intervention, with 10 centres located across regional and south east Queensland and South Australia, and another under construction in the ACT opening July this year. Established in 2005, AEOIU enrols around 300 children aged 2–6 each year. Over the past 15 years, the service has supported thousands of children to develop life skills that support them to engage in everyday life, and participate at home, in the community, at school and in the workforce.
The Children are supported by an expert team of clinicians and educators, who share the responsibility of assessing, planning, delivering and evaluating each child’s individual plan. Teams are comprised of speech pathologists, occupational therapists, behaviour therapists, teachers and early educators. Our mission is to enhance the lives of children with autism and their families through evidence-based successful early intervention programs and practical support.
Terms of reference
This submission addresses the following terms of reference:
d. the independence, qualifications, training, expertise and quality assurance of assessors e. the appropriateness of the assessment tools selected for use in independent assessments to determine plan funding 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 h. the circumstances in which a person may not be required to complete an independent assessment
Independent Assessments and the use
of social development to inform access and planning decisions.
Currently, children can enter the Scheme under Section 25 (Early Intervention) or s24 (Permanent Disability). The NDIS ECEI Reset proposes that children should enter the Scheme under s25 (Early Intervention) only. S25 for children has two entry points: through Developmental Delay or by providing a history of disability. This provision of ‘disability history’ may be impractical for very young children. AΕΙOU infers that under the proposed reforms, many children with autism will have to access the Scheme under the Developmental Delay criteria, regardless of diagnosis.
Under Section 25 1 (iii) National Disability Insurance Scheme Act 2013, children under 6 seeking access to the scheme under the Developmental Delay definition in the Act (Section 9) will need to be found to have developmental delay that:
…results in substantial reduction in functional capacity… in one or more of the following areas of major life activity:
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i. self care;
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ii. receptive and expressive language;
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iii. cognitive development;
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iv. motor development.
The Operational Guideline Section 8 states that children under 7 years seeking to enter under s24 (Disability) will need to first have met the s25 (Early Intervention) requirements before considering the disability requirements:
…substantially reduced functional capacity… in one or more of the following relevant activities:
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communication;
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social interaction;
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learning / mobility;
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self-care; or self-management (section 24(1)(c)).
We draw attention to the fact that social interaction is included under s24 Disability requirements (Becoming a participant) for substantially reduced functional capacity but not under s25. Furthermore, it is not in the definitions in section 9 for Developmental Delay. This means that if the
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Act stays as it is, and the current proposed Reset changes proceed, there will be no legal requirement for the social development abilities of a child aged 0–6 with autism to be considered as part of an NDIS access decision or level of supports in their plans.
For children with autism, not to have their capacity to develop socially be considered as part of their assessment would be a significant and unfortunate oversight. “ASD is the collective term for a group of neurodevelopmental disorders characterised by persistent deficits in social communication and social interaction, and by repetitive patterns of behavior and restricted interests.” (Autism CRC: A National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders in Australia, October 2018).
Encouragingly, consideration of social capacity is included as part of the assessment tools proposed: Pedi-CAT ASD and Vinelands scales. Further information about the weighting of scores would help allay concerns that children with autism do not risk disadvantage under the proposed system.
Further, without an underpinning legal commitment to include the social major life activity area to determine access to the scheme and a plan value for a child with autism families have no assurance that supports will be provided to increase the functional capacity of their child in one of the most challenging features of Autism Spectrum Disorder.
The Productivity Commission’s Inquiry Report: Disability Care and Support, 2011 noted: In addition to encompassing elements of self-care, communication and mobility, the assessment process should include aspects of learning and applying knowledge, and community and social participation. To do otherwise, might mean the support needs of some individuals were systematically overlooked (p 311).
Should the proposed shift to s25 become the sole Scheme entry option for children, there is a real risk that thousands of children with autism will not receive the kind of supports that the NDIS was established to deliver.
AΕΙOU Foundation recommends:
to avoid this systemic disadvantage and/or the perception of it, we strongly urge the Agency to amend the NDIS Act 2013 to include an additional major life activity area - social interactions under Section 9 Definitions developmental delay (b). The inclusion of emotional and behavior aspects would further strengthen the section.
Independent Assessments and the Removal of Disability Lists
AIEIOU recognises that disability lists were intended as a temporary measure to facilitate the Scheme’s rollout, and that the Agency is proposing a transition towards an ECEI scheme that prioritises capacity over diagnosis. We believe that functional capacity and clinical diagnosis are both critical elements of a child’s assessment. Together they provide a stronger picture of an individual’s ability; removing the diagnosis component (performed by experts) results in a weaker set of information to inform access and planning.
We are concerned that the tools proposed for assessment of young children with autism, or autism symptoms, do not provide sufficient sophistication with which to gauge a child’s challenges and progress. The Pedi-CAT measure may provide a baseline of skill as reported by a parent/carer on a given day, but a real risk exists that some children may fall through the gaps due to inconsistent reporting.
We acknowledge that the IA tools have acceptable levels of validity and reliability, in the context of population level research. However, further strengthening of this approach is required to ensure that partners can access high quality observational data and relevant training and development on how to interpret it.
The potential burden on families having their child repeatedly assessed for skills and behaviours that an autism diagnosis would negate also raises concern. Families have expressed to AIEIOU that regularly assessing their children via IAs to determine ongoing eligibility would be stressful and time consuming.
AIEIOU posed the following question to all parents/carers with children currently enrolled at our centres:
“Do you think that young children with autism should undertake annual assessments to determine their eligibility for the NDIS?”
101 families replied. Two thirds felt an annual assessment was appropriate, but that the assessment should inform progress – not eligibility. The following answers are indicative of their responses:
“I don’t think there needs to be an annual assessment to determine eligibility. It is a life long condition, unfortunately it is not going away. I understand annual funding may need to be reviewed as supports individuals require will vary as they make progress over time however I don’t think families should have to prove their child has a lifelong disability every twelve months to ensure their child will receive adequate support.”
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“I think assessments are important to see how your child is progressing and improving. But shouldn’t determine their eligibility for NDIS. Once they are diagnosed, this should prove eligibility for early intervention. And if they are assessed annually and are improving this shouldn’t stop them from continuing on.“
AEOIU Foundation recommends:
If IAs are to proceed, the disability Lists should remain. Diagnosis matters and is meaningful.
Independent Assessments, Developmental Delay and Autism.
The recently proposed ECEI Reset, the Agency reflects that many more children than expected have accessed the Scheme through developmental delay and not exited. Subsequently, it proposes revising thresholds that would presumably reduce the numbers of children entering through this pathway.
AIEOU seeks assurance for families that decision-making in this area will be based on the clinical diagnostic criteria which already exists for developmental delay. We acknowledge the challenges of economic management of such a large Scheme, but urge the Agency to base decisions on clinical expertise, equity for children, and the needs of families. For one group of children to be denied life- changing support because their disability is more common than another’s, would be contrary to the established goals, not to mention the spirit, of the NDIS.
AIEOU seeks clarity around the timeframe of plans which are created through the developmental delay pathway. We are concerned about a scenario in which a family who cannot afford to get a diagnosis for an ASD child approaches their EC partner under the developmentaly delay criteria, meets the IA cutoff score for access, and then receives a plan with minimal support value and limited time (2 – 3 years?). It would be inappropriate (and potentially harmful) to classify a Level 3 undiagnosed child with autism as having developmental delay, until they can join the Scheme with a permanent disability plan at age 9. If they join the Scheme at age 4 and their plan runs for 3 years – what do they do between ages 7 and 9? Without encouragement for their family to seek a diagnosis, even though a delayed public system – or a record of their disability history over these ‘in-between years’ - many children on the spectrum could potentially miss out on gaining the right supports at the right time. They would lose the benefits that an early intervention approach is designed to provide.
at AEIOU over the past 24 months, many children have gained access to the NDIS under developmental delay. Using clinical observation, our trained team had determined a high likelihood of autism and commenced early childhood supports. Those children have all gone on to receive an autism diagnosis from paediatric specialists, which has further informed development of their individual plan. Enabling Scheme access through a developmental delay pathway based on current clinical definitions and having information about the child’s needs further strengthened by a diagnosis, is a sound foundation for Scheme entry and participation.
AIEOU Foundation recommends:
If IAs are to proceed, and developmental delay is to be further defined as part of that process, it is vital that diagnosis and other input from clinical professionals remain a valued part of decision-making.
Independent Assessments and extending
the age range of the Early Childhood Approach.
in principle, AEIOU supports lengthening the term that children spend under the Early Childhood\Approach from ‘under 7’ to ‘under 9’ years of age. However, we are concerned at the risk of children\being on lower value plans during their early years, such as the example provided in the section above.\This may create a situation where a child may not have access to funded supports throughout their formative years at school, only having another assessment (IA) at age 9 to enter the Scheme under S24.\AeioU seeks assurances that children will not have time limits applied to plan lengths.\n\nCurrrently, AeioU is concerned by the large disparity in investment in the ECEI space as compared to \investment in the adolescent and adult space for individuals on the autism spectrum. To meet the reasonable and necessary needs of a child with autism, AeioU seeks assurance for families that plan values will be based on an objective assessment of individual need—not a capped, budgeted set value.\n\nAeioU also seeks clarity around how it is determined that children are no longer eligible for the scheme. Recommendation 23 of the recent ecei Reset proposal suggests the Agency is seeking to transition out more children from the scheme. Will this process be through ias? Via a mandated plan length? How will clinical expertise factor into this process?\n
AEIOU Foundation recommends:
\We ask the agency to provide assurance that plan lengths and values will be based on clinical data, not pre-determined time limits.
6.0) Summary of Recommendations
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We strongly urge the Agency to amend the Act to include the domain of social interaction under the list of s25 (Early Intervention) requirements for developmental delay.
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If IAs are to proceed, the disability Lists should remain. Diagnosis matters and is meaningful.
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If IAs are to proceed, and developmental delay is to be further defined as part of that process, it is vital that diagnosis and other input from clinical professionals remain a valued part of decision- making.
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We ask the Agency to provide assurance that plan lengths and values will be based on clinical data, not pre-determined time limits.
Appendix 1. Survey question to current AIEUO families, February 2021.
do you think that young children with autism should undertake annual assessments to determine their eligibility for the NDIS?
answered: 101 skipped: 7
e is continually being assessed at AEIOU and his diagnosis means he needs the help he’s receiving. Determining the content of the assistance is already reviewed annually. 2/17/2021 10:40 am
e no, they are autistic, it won’t FUCKING change. They may develop some skills or they may not but regardless being autistic will not go away magically. 2/15/2021 9:55 am.
e i like the ongoing reassessment of each child’s progress and needs 2/14/2021 4:57 pm.
e bi annual would be better. Autism is not a condition that can be cured. It is life long. 2/13/2021 7:50 am
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5 Once you have been diagnosed you should not have to be checked in one to see if your lying. Yes if you are requesting more help as some times other problems arise further down the track 2/12/2021 2:49 PM
6 This depends on how long it takes to get a yearly assessment. Most services related to autism is a 12 month wait. 2/12/2021 2:33 PM
7 provided it is funded, why not 2/12/2021 9:32 AM
8 Time wasting Children present very differently in all life scenarios 2/12/2021 9:21 AM
9 A child with autism has already been diagnosed by qualified professionals. To say they need to undergo testing every year is an insult, and ju a t puts more pressure on families who already have enough that they are trying to juggle. Autism is something you are born with, just like cerebral palsy, spina bifida, down syndrome… why is autism the syndrome that “professionals” question whether it suddenly disappears? No. It does not. Please stop questioning this. It’s insulting at best and infuriating at worst. Have some compassion for the children and their families and stop making us all go through unnecessary testing. My children were diagnosed at 2yrs 5mos and 2yrs 6mos. Their uniqueness as children with autism has only become more evident as they have grown older and the gap between themselves and their typical were has grown wider. 2/11/2021 11:04 PM
10 Yes please then only parents and nDis knows that funds are given to needy kids and not all.. 2/11/2021 10:04 PM
11 No one wished for a child on the spectrum. It just happens so we have to accept it. If the child has the ability to go into mainstream education then the parents will not need NDIS at all. It is obvious why these children need the support of NDIS, otherwise they will not have a chance to participate in the community at all. 2/11/2021 10:02 PM
12 Once diagnosed they never fully improve and always need support even in adult hood 2/11/2021 6:25 PM
13 Things change quickly and re-assessment ensures their current needs are met 2/11/2021 3:48 PM
14 I think that annual assessments should be done to monitor the child’s progress and facilitate the individual therapy program, but I do not think that it impact on whether the funding is continued, as I assume the diagnosis of ASD has already been made. 2/11/2021 3:34 PM
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15 Why would you? Autism is autism, they will never be cured, they will continue to hopefully improve but as heart breaking as it is they will lead a life full of bumps and they will always need supports - formal or informal. 2/11/2021 3:02 PM
16 I don’t believe my sons Autism will “go away” or resolve. I think he will learn things to help him better manage aspects of his life but I believe he will have struggles through his life unlike neurotypical children and will require support long term. I believe once a formal diagnosis is made it is cruel to make parents prove their child still needs help. Autism is not curable but there are interventions that can be commenced to try and make their lives better. Knowing that my son has a permanent disability diagnosis through NDIS and able to access support through his life gives me hope that although he may have struggles he will always be supported. 2/11/2021 2:42 PM
17 Im only new to this. I know alot of progress can be made (im hoping in 2 years my baby will be so much better) 2/11/2021 2:28 PM
18 I’m on the fence with this one but I think taking annual assessments would somewhat show how the children is progressing with therapy and support. 2/11/2021 1:26 PM
19 To add this layer of stress and uncertainty to families who are already having to do more to meet the additional needs of their children seems unnecessary. There must be better ways to allocate resources 2/11/2021 1:23 PM
20 He has ASD it’s lifelong, why would they need to assess to check that he is still autistic? 2/11/2021 1:02 PM
21 To be fair to all, assessments should at least be done every six months to see if there has been any progress. Should be increase the support or decrease funding. 2/11/2021 12:55 PM
22 Once autistic always autistic, why do we have to prove this every year it’s not something that people grow out of. Having to justify it every year is a bit of a joke. 2/11/2021 12:46 PM
23 I’m not against assessments and perhaps it might be useful to get the best funding for theres current needs but it shouldn’t be used to determine eligibility as this creates great uncertainty for the affected family. 2/11/2021 12:30 PM
24 We do so many assessments at the schools and to get the funding
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should stand for 3 to 4 year blocks 2/11/2021 12:16 PM
I find some on the spectrum may only need limited support while others require significant s \upport, and support should be judged on a case by case basis. 2/11/2021 12:10 PM
It is extremely difficult to assess a child who could be having an extremely good or bad day, as every day is different. 2/11/2021 12:09 PM
I think in a situation like AEIOU who do such comprehensive reporting, their reports should be sufficient as they are bound by their professionalism - just as any other person unertaking the assessments. 2/11/2021 11:47 AM
Aree because some children do require more help and others require less. So funding hould be distributed accordingly. 2/11/2021 11:07 AM
’s not something you grow out of, but something that can be helped in younger years to help those individuals adapt to all ways of life 2/11/2021 11:03 AM
A diagnosis of autism should be all you need 2/11/2021 10:53 AM \Autism doesn’t get better or go away. It is how someone is born. Our culture doesn’t make enough allowances for people who are ‘different’ 2/11/2021 10:52 AM
M \aybe every three years or so, not yearly as it will result in treatments that are having huge imapcts on lives cut back amd then the process falling back 2/11/2021 10:42 AM
W ould be ok to Agree depending on what the assessment actually is. 2/11/2021 10:39 AM
I believe there needs to be ongoing support and that decision need to be made collectively between the child’s pead, therapists, school teachers and caregivers. They model could bemodified to have tiers of support based on needs. The stress on parents to have that support removed from the end of 1 year to the next would be very challenging. 2/11/2021 10:37 AM
Y ung children with ASD require and benefit from early intervention. I don’t believe a yearly assessment is necessary, however I understand that some form of assessment process would be appropriate. 2/11/2021 10:33 AM
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e.âI don’t think it is needed, once you have autism, you have autism, yes you can get greater skills but its not going to go away. For my child in particular if we had to do annual assessments I wouldn’t be hesitant to do them as I know my daughter needs all of the help she can get. 2/11/2021 10:30 AM
i dont think we see results that quickly 2/11/2021 10:26 AM
A child with autism develops at a very slow rate. The diagnosis in a year will not change. 2/11/2021 10:25 AM
autism doesn’t change, the more support that can be provided at an earlier in life will prove to save on supports in the long term 2/11/2021 10:23 AM
i think assessments are important to see how your child is progressing and improving. But shouldn’t determine their eligibility for NDIS. Once they are diagnosed should prove eligibility for early intervention. And if they are assessed annually and are improving this shouldnt stop them from continuing on 2/11/2021 10:21 AM
i dont think there needs to be an annual assessment to determine eligibility. It is a life-long condition, unfortunately it is not going away. I understand annual funding may need to be reviewed as supports individuals require will vary as they make progress over time however i don’t think families should have to prove their child has a life-long disability every twelve months to ensure their child will recieve the adequate supports. 2/11/2021 10:21 AM
i don’t believe that an assessment every 12 months is necessary based on personal experience in addition to the fact that assessments are a lengthy process, sometimes taking months to complete, as well as the financial aspect some of the assessments cost. Taking this into consideration, it would cause more stress to families and health care providers alike, as it would cause a heftier workload on an already overloaded system, for both publicly and privately sourced assessments. 2/11/2021 10:20 AM e This enable the the families , clinician and NDIS can evaluate progress and tailor the need best For the child . This also helps gain important data in shaping the future services for other children who may require services 2/11/2021 10:20 AM
i’m unsure if I agree or disagree with this one, I feel the system should be fair, and early intervention for young children with Autism should be carefully considered with high importance. I do not think these children should be made to wait until they are 9 years old. i think it is fair that they receive annual assessments to ensure the program is the right fit for
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them, sure. I think it opposes challenges given costs and wait times to see paediatricians etc. 2/11/2021 10:19 AM
45 Why to make life for parents and special needs kids miserable by testing them every year ? Why do they need to prove time and again about their needs. Its totally unfair 2/11/2021 10:13 AM
46 So they get appropriate funding according to their needs 2/11/2021 10:10 AM
47 Annual assessments by whom? Paediatrican/therapy teams? Would be reasonable as there should be some medical oversight of the child. Who else is qualified? 2/11/2021 10:08 AM
48 This is a difficult one to answer. I think children who have been diagnosed at a young age should receive funding till at least school age - and then have an assessment to see how they have progressed… to see if they need more or less funding. There is alot of change/learning/meeting goals in 1 yr… however at such a young age… perhaps they could establish tier system. If you get $5000-10 000 funding a year… have assessment every 18 months (just as an example). It’s a complex issue, and assessments do need to be done to establish eligibility but at the same time… what is the perfect timing? 2/11/2021 10:07 AM
49 This is ridiculous. I have enough worries without feeling that I would have to subject him to regular assessments to “prove” his disabilities and needs. 2/11/2021 10:03 AM
50 The AEIOU are professionally trained specialists who work with these children day in day out they build trust Why are they not capable of assessment instead the government wants a complete stranger to asses (this will lead to unreliable data collection ) 2/11/2021 10:02 AM
51 Autism is a neurological condition you are born with. Its hard and a constant strugle. Its not something the heels over time. Imposing that restriction would create extra cost and hardship for the child 2/11/2021 10:02 AM
52 It’s a system and certain goals will change yearly 2/11/2021 9:57 AM
53 As with my comment above, an autistic person is autistic for life. Participants should not be forced to annually “prove” their disability. 2/11/2021 9:57 AM
54 I believe they should be monitored for progress, but I think a full assessment every year is quite overwhelming and invasive.
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If they have autism they are eligible, making these kids go through more unnecessary assessments is a waste of time and not fair on the child.