• The Autistic Realm Australia Inc.

Autism Consultation Responses - TARA Tips




The NDIS has asked for consultation on their proposed changes to Autism "early intervention".


We believe the questionnaire is full of leading questions that push respondents to answer in a specific manner, based on the way they are framed. These leading questions contain information that the NDIS survey intends to confirm rather than to get a true and unbiased answer to their questions.

HOW TO :

The Autistic Realm Australia has created this set of responses to assist you in having your say on the proposed changes to the National Disability Insurance scheme.


Most questions have more than one choice of response - short and long ones. The long ones may include links to research studies that refute the claims the NDIS used to base the proposals on.


Use these responses as a starting point, as a reference or in full. Personalise them to reflect your own or your families story .


The Autistic and Autism communities must come together to collectively voice our condemnation of these changes.


As it appears that submissions are not limited to one per person voice your disapproval as many times as you can and support participants, family or friends in doing this.


Please share this resource far and wide as together we can make real change and ensure the NDIS remains as an Insurance scheme and not another form of welfare.


QUESTION 1:


The Autism CRC’s research along with other evidence and research are being used to inform future NDIS operational guidelines, and increased transparency on reasonable and necessary supports. Some of the other considerations include:

  • key principles for autism interventions

  • standards for the delivery of autism interventions.

Which of these would you use to make decisions about accessing best practice interventions (or services) for children on the Autism Spectrum?


NDIS website

NDIS Operational guidelines

Participant decision making guides (not yet developed)

My usual NDIS or NDIS partner contact

Autism organisations or peak bodies

None of these


RESPONSES:

  • None of these


QUESTION 2:


Where else would you like to be able to find the information you need to make decisions about accessing best practice interventions (or services) for children on the Autism Spectrum?


RESPONSES:

  • As an Autistic parent of Autistic children, I source my information from those with lived experience e.g. other Autistics. Autistic led advocacy groups that have the autistic child's best interests in mind not their own financial profit. E.g., The Autistic Realm Australia, ASAN and Reframing Autism.

  • Autistic led organisations

  • Autistic professionals who have both lived and professional experience and qualifications.

  • Research articles that include autistic participatory practices

  • I do not believe that independent assessors, NDIS staff or LACs are qualified or experienced in this area and prefer to rely on the professionals involved in my child’s care.

  • As an autistic parent / parent of an autistic child I am concerned about some the therapies that are ‘seen’ as best practice such as ABA or related therapies that do not have real evidence to back them and are seen as abusive by the autistic community. And from evidence and research outside the NDIS which has a conflict of interest if they proceed with the proposed changes. Autism is not a behavioural disorder. It cannot be “improved” by behavioural interventions.


See this paper: Eg, Sandbank, M., Bottema-Beutel, K., Crowley, S., Cassidy, M., Dunham, K., Feldman, J. I., Crank, J., Albarran, S. A., Raj, S., Mahbub, P., & Woynaroski, T. G. (2020). Project AIM: Autism intervention meta-analysis for studies of young children. Psychological Bulletin, 146(1), 1–29. https://doi.org/10.1037/bul0000215 Eg, Sandbank, M., Bottema-Beutel, K., Crowley, S., Cassidy, M., Dunham, K., Feldman, J. I., Crank, J., Albarran, S. A., Raj, S., Mahbub, P., & Woynaroski, T. G. (2020). Project AIM: Autism intervention meta-analysis for studies of young children. Psychological Bulletin, 146(1), 1–29. https://doi.org/10.1037/bul0000215 "When effect size estimation was limited to studies with randomized controlled trial (RCT) designs, evidence of positive summary effects existed only for developmental and NDBI intervention types. This was also the case when outcomes measured by parent report were excluded. Finally, when effect estimation was limited to RCT designs and to outcomes for which there was no risk of detection bias, no intervention types showed significant effects on any outcome. (PsycInfo Database Record (c) 2020 APA, all rights reserved)”

The intervention chosen by the client should be evidence based - but the client must be given the choice to provide that evidence themselves - peer reviewed though. The Whitehouse report should not limit access to only those therapies or interventions it reviewed. There is a blatant conflict of interest in relying on this paper as it was commissioned by the NDIA. Compared to the paper by Sandbank, M., Bottema-Beutel, K., Crowley, S., Cassidy, M., Dunham, K., Feldman, J. I., Crank, J., Albarran, S. A., Raj, S., Mahbub, P., & Woynaroski, T. G. (2020). Project AIM: Autism intervention meta-analysis for studies of young children, it is both incomplete and biased. https://www.researchgate.net/publication/337517081_Project_AIM_Autism_Intervention_Meta-Analysis_for_Studies_of_Young_Children

QUESTION 3:


Holistic planning is a part of the proposed funding framework for early intervention for children on the autism spectrum.


A holistic approach to planning considers the role of the family, carers, and professionals in the child’s life. A child with autism can access many areas of support in their life including health, early education services, community based supports and school. We recognise that NDIS is one of those supports. A holistic plan will map out goals and aspirations, and detail NDIS funded elements, funded elements and non-funded elements including parental responsibility, school and early childhood services.


How can we help families to find and connect with other supports outside of NDIS?

RESPONSES:

  • We should not have to. The NDIS should pay for all or any interventions that arise because of my child's Autism. Funding should not be limited to functional assessments, but should cover all areas of well-being.

  • Autism is not a behavioural disorder that can be put into remission by behavioural training. The NDIS must move away from this reductionist idea. It is a lifelong neurological difference that needs flexible approaches based on the benefit to the individual, not a rehabilitation approach that reduces supports based solely on functioning levels.

  • The intervention support available to Autistics can never be through holistic planning when there is no real knowledge of what Autism is as demonstrated by all these proposals. Autism is not a behavioural disorder as described by the NDIS.

  • Holistic planning is not like this description. It should not 'treat' the child. It should enrich the individual’s life and well-being. And that of their family.

  • Therapy should not be limited to those controlled by the NDIS, nor that may serve no purpose to the Autistic individual but are the only ones available or accessible to the child which is what is being proposed.

  • Holistic planning must be individualized in order to accommodate those in rural and remote areas as well as CALD Autistic people. It is important to note that a holistic planning approach for Autistics is aware that there are also comorbidities, often multiple comorbidities, that must be taken into consideration.

  • Autism is a lifelong disability whose support needs may fluctuate during transition times such as puberty, divorce of a parent, starting school, moving to high school, university, or employment. Contingency funding should be made available

QUESTION 4:


The consultation paper outlines specific principles that the NDIS considers for young children with autism as early intervention best practice for young children on the autism spectrum.


These are:


4.1 - The intervention is based on a good understanding of autism


RESPONSES:

  • When Autism is viewed through a medical model lens, the ultimate goal is to treat the Autistic rather than provide support that is appropriate to suit their needs. A generic one sizes fits all approach does not address the needs for accommodation and supports for the Autistic child and is a waste of money that can cause more harm than good.

  • Autism is not a behavioural condition. Autistic children need more than purely behavioural interventions. No intervention can reduce the effect of being Autistic and how it affects a child's well-being .Appropriate interventions are described by professionals such as Dr Ross Greene, Dr Mona Delahooke, Stuart Shanker and Alfie Cohen. These address unmet needs, stressors, lagging skills, and emotional regulation. They avoid approaches such as rewards, punishments and teaching compliance. Teaching compliance to autistic children increases the risk of being a victim of abuse or assault. As a group, Autistic children are over-represented in the child protection system compared to children with other disabilities.

  • If support is only delivered through professionals who do not follow the social model of disability then said professionals are not experienced in Autism and not appropriately qualified to deliver Autistic support.

  • If the intervention is tailored to the child this rules out ABA, PBIS or any intervention based on behavioural analysis.

  • The NDIS understanding of Autism is both selective and manipulated for the purposes of the proposed changes.

4.2 - The people who deliver the intervention know the person well and respect their feelings and views


RESPONSES:

  • Not only does the person delivering the support need to know and respect the feelings and views of the Autistic person so do does the LAC. If the LAC does not understand or respect the views of the Autistic person and or their carers then the plan will never match support needs.

  • Research links the quality of therapeutic relationships directly with client outcomes. A positive relationship results in positive outcomes.

4.3 - The intervention is adapted to the needs of the person receiving it


RESPONSES:

  • This should be decided by the Autistic person themselves and or carer / family and not from a list of NDIS accredited practitioners

  • If the intervention should be tailored to the child this rules out ABA, PBIS or any intervention based on behavioural analysis.

4.4 - The intervention is based on a theory that is logical and scientifically plausible


RESPONSES:

  • ABA might be logical and scientifically plausible to the ABA therapist and agencies seeking to remove ‘the Autism’ from the individual but when any therapy that is meant to enhance the life of the recipient causes trauma and enforces compliance then it is neither logical nor plausible

4.5 - The intervention works in the real world, not just in a research laboratory


RESPONSES:

  • Absolutely, which is another reason that lived experience is so valuable. Autism is not something that can truly understand just by reading a book.

  • Some research is based on the use of adversives and is abusive in practice such as ABA.


4.6 - Research evidence shows the intervention can work for people on the autism spectrum


RESPONSES:

  • The intervention chosen by the client should be evidence based - but the client must be given the choice to provide that evidence themselves - peer reviewed though. The Whitehouse report should not limit access to only those therapies or interventions it reviewed. There is a blatant conflict of interest in relying on this paper as it was commissioned by the NDIA.

  • We need to acknowledge that developing evidence is ever evolving and not static, so while there may not be significant evidence for a type of intervention it is not an indicator that it doesn’t work, it just may be that it hasn’t been tested and published. This is how new interventions are developed.

Compared to the paper by Sandbank, M., Bottema-Beutel, K., Crowley, S., Cassidy, M., Dunham, K., Feldman, J. I., Crank, J., Albarran, S. A., Raj, S., Mahbub, P., & Woynaroski, T. G. (2020). Project AIM: Autism intervention meta-analysis for studies of young children, it is both incomplete and biased.

https://www.researchgate.net/publication/337517081_Project_AIM_Autism_Intervention_Meta-Analysis_for_Studies_of_Young_Children

  • Equity demands that everyone is given the support they need to live their best lives. Autism is a spectrum that presents differently from person to person. Each family also has their own dynamics. Research can guide the support team in the right direction however the Autistic person’s needs should ultimately decide what intervention support they receive rather than what others have decided they need. When a holistic approach is used correctly the support is tailored to the Autistic Individual and not those who seek to fund or provide intervention support.


4.7 - The intervention supports mainstream and community participation


RESPONSES:

  • The evidence should show that it would be beneficial to Autistic people - not be limited to only those interventions the NDIS approves. This includes non-behavioural based activities that will benefit the person as a person, not just a person with Autism. For example, Autistic adults clearly recommend using a child's interests outside "therapy" or "intervention" to gain the same skills in the real world rather than in consultations. The NDIS should fund these activities because they meet the needs of the Autistic not just the NDIS.

  • Support should be given for Autistic individuals to connect, participate, advocate, mentor or be mentored by their Autistic peers. This in turn will assist the Autistic person with community participation; if in fact that is their goal.

  • The intervention should be for the benefit of the Autistic based on their own engagement and willingness to participate. Autism is not a behavioural disorder. It is a neurotype. It will never remit or be cured. It is a lifelong condition.

  • But - the interventions should support mainstream and community participation ONLY if it meets the needs of the Autistic child and it is something they wish to participate in. Not some generic one size fits all functional assessment.


QUESTION 5:


The consultation paper outlines specific standards that the NDIS considers for young children with autism considers as early intervention best practice for children on the autism spectrum.


5.1 - The intervention is delivered by, or supported by, appropriately qualified and experienced professionals


RESPONSES:

  • Behavioral interventions such as ABA, PBS, and their offshoots based on the work of Ivar Lovaas, no matter how good their intentions, are a form of abuse, and like Gay Conversion Therapy (which is based on the same principles), should be outlawed, not encouraged. People providing this intervention can have as little as 2 days or training and no background or qualification in allied health.

  • Autism is not a behavioural disorder. It doesn’t disappear with behaviour training. ALL the needs of an Autistic child should be met in ANY intervention or support offered.

  • If support is only delivered through professionals who do not follow the social model of disability then said professionals are not experienced in Autism and not appropriately qualified to deliver Autistic support.

  • The NDIS needs state clearly what THEY expect from Early Intervention (I.E) e.g.,

  • what is it all for?

  • What is one trying to achieve and why?

  • Are there ethical issues regarding these purposes, or the means by which one tries to achieve them?

Milton, Damian (2014) So what exactly are autism interventions intervening with? Good Autism Practice, 15 (2). pp. 6-14. ISSN 1466-2973.

https://kar.kent.ac.uk/62631/1/So%20what%20are%20autism%20interventions%20intervening%20with.pdf


5.2 - The people delivering the intervention follow established guidance


RESPONSES:

  • What is the established guidance and were Autistic people involved in developing the guidance? If not can they be?

  • The people delivering the interventions should be qualified and trained as per regulatory requirements or standards of their profession. They should be practicing within their ‘scope of practice’


5.3 - The intervention provides significant and lasting benefits


RESPONSES:

  • How are significant and lasting benefits measured when support levels vary in different environments, transition periods and life stages?

  • This is subjective. What is meaningful to one may not be to another.


5.4 - The intervention is carefully monitored and reviewed on a regular basis


RESPONSES:

  • There should be a feedback loop for the participant and family/carer.


5.5 - The intervention does not cause significant physical or emotional harm


RESPONSES:

  • If this statement was actually true all behaviouralist intervention would be removed from NDIS funding.


5.6 - The benefits outweigh any costs (including risks)


RESPONSES:

  • For a benefit to outweigh the costs then good value for money and time invested is a contradiction. Is the NDIS saying we will only allow you to benefit if it is cost productive? If this is the case this is another argument for the NDIS to not fund behaviouralist programs such as ABA.


5.7 - The intervention is good value for money and time invested


RESPONSES:

  • For a benefit to outweigh the costs then good value for money and time invested is a contradiction. Is the NDIS saying we will only allow you to benefit if it is cost productive? If this is the case this is another argument for the NDIS to not fund behaviouralist programs such as ABA as it is one of the most time intensive and expensive therapies.


QUESTION 6:


“Reasonable and necessary” is a term from our legislation. Appendix one of the consultation paper includes case studies which might be used to explain reasonable and necessary.


Below is an example of one of these case studies.

Case Study – Building community inclusion

Jenny is 4 years old and has been diagnosed with autism spectrum disorder. She has met the access requirements for the NDIS and her family are working with an Early Childhood Partner to develop a plan.

Jenny lives in the city with both her parents who are keen for her to participate in swimming lessons with her peers. They have enrolled her in a local swim school where her friend Jasmin also attends.

Jenny

Jenny becomes agitated during group swimming lessons. Her sensory sensitivities and communication challenges cause emotional and behavioural distress. This is disruptive to the others in the class, and is upsetting for Jenny’s parents.


Parents

Jenny’s parents have requested the NDIA consider:

  • cost of weekly private lessons

  • a support worker to attend swimming lessons.

Swim school

The swim school have no experience with teaching a child with autism. They are keen to learn how best to support Jenny and other children with autism.

Reasonable and necessary considerations

Is the support request solely and directly a result of Jenny’s disability needs? Yes

Has evidence been provided to show community and mainstream options were explored, and reasonable adjustments were made to support Jenny’s additional needs? No

Is it reasonable to expect families or carers to provide support for a 4 year old during swimming lessons? Yes

Are there any barriers to the family providing this support? No

Decision

  • the cost of private swimming lessons does not equal value for money in relation to both benefits of the support and the cost of similar supports

  • private swimming lessons do not promote inclusion or create opportunities for social participation or necessarily support progress towards group lessons

  • support for inclusion in swimming lessons is captured in capacity building supports

  • we must also consider what families and other informal supports would usually provide.

Jenny’s plan includes funding for capacity building that can be used to:

  • access support for an early intervention provider to help build her confidence in the water

  • access support for an early intervention provider to share strategies with the swimming instructor so they can best support Jenny in swimming lessons.

As Jenny’s confidence around water increases she is able to participate fully in the in group swimming lessons.


Short term outcomes

  • Jenny builds confidence in the water

  • Jenny is able to participate in a community setting and increases her social inclusion.

Longer term outcomes

  • The swim school capacity and confidence is increased, enabling other children with disabilities to participate fully in their programs.

  • The swim school may make a decision to offer a ‘quiet time’ program that supports social inclusion by providing reasonable adjustment to support participation by children on the autism spectrum.

Does this case study and/or other case studies in Appendix one help you to understand what we mean by “reasonable and necessary”?


Yes, it is helpful No, it is not helpful