Submission on Autism Consultation Paper, April 2021.

Background

I am the older sister of an Autistic person. My brother RW is now aged 41, so I am able to address some of the incorrect/inaccurate assumptions made by the NDIA in terms of how capacity building with someone who has Autism actually works on the basis of what did and did not work for my brother.

RW’s IQ was assessed as a child as 72 - only just high enough not to be classified as having an intellectual disability as well as Autism. He did not really become verbal until around age 6, and while he could express basic wants (e.g. “can I have a grape”) he still to this day cannot express more complex wants/needs/emotions/physical issues, nor to answer questions about things like “what did you do last weekend” - he starts mumbling confused if you try to ask something general ather than something specific. Rephrasing the question to “I heard you went to the football on Saturday, did you like watching that?” will get you a definite “Yeah” or “Nah” followed by some information on good the game went and who won.

Growing up, RW would frequently become extremely violent, beat up his younger brother MW and sister LW, punch walls, pick holes in the walls, etc. RW would frequently end up giving MW a concussion from things like throwing him into a pole, hitting him over the head with a golf club, banging his head on the wall, etc. Sometimes MW needed stitches on the scalp/ears as a result of what RW had done. Many times my mother would end up black-and-blue from bruising from trying to get in between and separate them, and sometimes with bite marks to go with it.

As RW went through puberty, this violence increased to the point that when he was 15, my mother was desperate. My parents had divorced several years prior, and she could not cope with the increased levels of violence anymore. We did attempt to get assistance from psych/behavioural therapist - but despite being told that the evidence was that “it worked for 98% of people” it failed entirely because the help provided assumed that the person was capable of understanding the concept of “consequence” - i.e. “if you do X then Y will occur” - without which any form of reward system for good behaviour as they attempted to implement was doomed to fail. RW was unable to understand why he did or did not get a “gold star” for the day, because to his mind there was absolutely no relationship between how he behaved and that reward - the linkage/comprehension of the entire concept was undeveloped. Over a 6 month period of trying this, expanding the parameters of what would achieve the reward, etc, the end result was that the frustration from lack of understanding actually made things worse instead of improving the situation.

My mother had to make the extremely difficult decision to relinquish RW. At that point my father stepped in and offered to take him on full time instead - which is the only reason RW did not go into full-time care when he was 15. The change to living with my father helped in several ways - RW was separated from his younger siblings so he didn’t have them around to beat up when he was frustrated/upset anymore, my father had remarried so he was now the sole child with two parents to look after him rather than one of four children looked after by a single parent and therefore not having to “compete for attention”. The changes allowed him to blossom in his own time without competition from or comparison to his younger siblings.

RW had been playing basketball and doing gymnastics in groups that catered to children with disabilities while living with my mother. When moving to live with my father, he changed instead into swimming and 10-pin bowling as activities.

NDIS Proposal for Autism Supports - My Concerns

knife/fork/spoon/serviette packets for airline meal use).

RW would have been in his late 20s to early 30s before he actually came to understand the concept of consequence. This understanding began after being punched in the mouth by one of the other Autistic people at his day program because he’d teased them relentlessly for months - this event actually killed the nerves in his top front two teeth, but it also provided a very immediate and very obvious example that if you behave badly towards someone too much they will do something back to you that you will not like. It was an awful thing to have happened, but it gave the first glimmer of understanding that my father was then able to build on for being able to teach RW the concept of consequence.

RW would have been 36-37 before he was first able to stay overnight at a hotel with some supervision/support and meals included, but otherwise amusing himself for parts of the day on his own. Activities that a 13 year old was able to do were ones that he was only just starting to be able to do himself. The last 4 years has finally seen some maturing, he’s started going out for dinner and an activity (e.g. listening to a band playing at the local pub, or going bowling, etc) with a group of people on Friday nights who are not all disabled on his own. I have been absolutely delighted to see the developments over the last 4 years - he’s gone from someone who needed 24/7 supports to someone who could conceivably live in an ILO-type situation with some daily supports (e.g. he’d need help paying rent/utilities/bills as finances on that level are currently still beyond his understanding, and for meal prep/planning, shopping, etc) but also with some level of independence. This was something I had thought would never occur. RW is a participant of the NDIS having been transferred through from pre-existing programs for Autistic people.

I am also the aunt for my sister’s Autistic daughter who is now 16. Due to issues with the wrong tests being done during primary school (wrong age), she was not properly diagnosed as Autistic until she was in Year 7 at school. She missed out on early intervention supports entirely because she was capable of mimicking and masking well, and had a much higher IQ that helped her to compensate and manage at school most of the time (though frequently melting down at home afterwards). She has significant issues in emotional regulation, self-care, self-management, and with impulse control particularly around eating such that my sister is required to purchase groceries multiple times per week for only a few days at a time, otherwise the week’s worth of food will have been eaten completely within the first 2-3 days of the week. She has not applied to the NDIS at this stage, though the family is looking into getting a full functional assessment done to determine what level of support she may need for the areas of self care and self management and whether those supports could be managed without the need for NDIS support.

My Concerns Regarding The NDIA Proposal For Autism Supports

1. Short Intense Period Of Support Not Applicable To Many Individuals With ASD

The “short intense period” of autism supports after which capacity is built and support is no longer needed would never have worked for either my brother or many individuals affected by similar challenges as seen in my niece. While RW did receive some speech therapy and psychological services during childhood along with teacher aide assistance throughout primary education, if an autistic person lacks sufficient developmental maturity necessary for therapeutic interventions there are inherent limitations regarding how much capability can realistically develop through brief intensive sessions alone. It therefore cannot be assumed that subsequent years necessarily require less intervention than previous ones; rather ongoing needs often persist over extended periods regardless of initial progress made.

Likewise despite possessing higher intelligence levels compared to her cousin who experienced difficulties related primarily due lack adequate early identification & treatment opportunities available only later when appropriate diagnostic evaluations finally occurred (resulting significant delays accessing essential resources), even highly intelligent children might still benefit significantly from long-term consistent therapies tailored specifically towards their unique requirements - especially considering observable improvements continue occurring gradually across multiple decades sometimes.

Required As A 5 Year Old Child

The range of expected tasks/skills from children increases rapidly throughout their childhood and teenage years, and it is not true to assume that because someone had assistance at age 3 to learn the skills appropriate for a 3 year old that they will not need the same level of assistance again at age 5 to learn the expanded range of tasks/skills that are expected of a 5 year old.

Skills will build on each other, but if someone has difficulty in learning them in general they will need continued ongoing support as the range of skills they are expected to learn/master increases despite having made substantial gains in capacity due to capacity building in the previous year(s). Functional capacity in children is an ever-moving target, having achieved it once doesn’t mean that they will not fall behind again when the target is moved.

Change Is Stressful For Most People

It is typically even more stressful for someone who is Autistic. Periods such as beginning primary school, migrating from primary to secondary school, and migrating from secondary school to either University or the work force are times in particular where an increase in supports can be expected to be required rather than the NDIA’s proposed decrease as a result of the stress of those changes, new environments, different people, different ways in which classes are run, etc exacerbating issues with behaviour and emotional regulation from their Autism.

These sorts of transitional times are the points where supports for the change are the most crucial, and while the education system is responsible for the assistance to manage the change while at school, the family and the child will still need assistance to manage the changes at home. It is extremely common for Autistic children to come home exhausted from trying to hold themselves together during the school day, and then melt-down once back home in a safe environment. This particularly needs additional assistance in areas of emotional regulation, tools to help them to manage the changing schedule, and in behavioural supports as the increase in meltdowns results in increases in challenging behaviours. Reducing supports as proposed in section 7.5 “When a child enters the education system things change” runs a very real and substantial risk of actively sabotaging the child’s successful transition through the education system.

Having Lived With A Family Member With Autism

I know intimately how severe challenging behaviours can get - and how difficult they can be to deal with when the person’s disability actively interferes with best practice methods for handling them, as it did with RW with his inability to understand reward systems. It is highly likely that families will need more than a year or two of trial-ing various therapies before they manage to find something that will work for that individual, so the assumption that “you’ve already built capacity so don’t need as much help now” while the child is still developing/growing/learning about the world and how to interface with it does not hold true for many people. I am concerned that there is a possibility that the NDIA are “throwing the baby out with the bathwater” by excluding therapies that have helped some people because the evidence for their use is either poorly studied or showed that it didn’t help all people.

Funding Levels Being Proposed By The Ndia Are Fundementally Inadequate To Support The Need For A Multidisciplinary Team Of Therapists Working With The Child

The belief that only one therapy per month would be all that was required (minus a couple of months to cover report writing) flies completely in the face of providing multidisciplinary therapy support. It is far more common in my experience that capacity gains are not built in a short intensive period, but instead require patient repetition and reinforcement over a long period for them to be properly established and maintained long enough to “click” into place as a skill the Autistic person can use. Withdrawing supports too soon will result in the participant going backwards again, and I believe that with the proposal as it stands there is a very significant chance that the NDIA will frequently end up inadvertantly sabotaging the child’s ability to integrate into the world resulting in a higher need for supports once they become an adult. Supporting someone who is Autistic to be themselves and able to function in the world at the same time is an investment in their future - and in the future of Australia, as assisting them to achieve their best competency means that you are increasing the likelihood of them being able to work and pay income taxes as an

Discussion Paper Questions for Feedback

Q1:

I would first turn to Autism organisations and peak bodies for information on Autism, as well as the medical professionals who were diagnosing the condition. Now that I know about the various NDIS Support groups available, I’d also turn to some of them for a broad-brush range of suggestions and advice.

I would likely attempt to find information on Autism via the NDIS website - but at this stage you have to use search to find anything, and it’s pot-luck whether you put in the “right” search terms to have parts of the CRC report come up. I have no idea how I’d find the CRC report, or any other information on Autism, through the NDIS website’s menu system. The information that does exist is effectively “hidden” to users of the site.

Q2:

I’d like to see information from professional bodies, and from the government health website.

Q3: To the best of my knowledge, most Autism supports that existed prior to the NDIS were closed/ceased when the states transitioned people to the NDIS. The NDIS is now effectively an oasis in the desert - it’s one thing to want to connect people to other supports, but they have to actually exist first in order for people to connect to them.

The NDIA need to be able to identify what supports actually exist, and likely to promote the creation of additional supports, before the NDIA will be able to assist people to connect with them. This will also require LACs/Community Partners to have a much broader understanding of what alternative supports are available in their local area than they currently do in my experience. My experience is that the total limit of support I’ve received from an LAC to find supports (despite asking) was to point me at the provider search page on the NDIS website, which is extremely unfriendly to use when searching for a specific type of service.

Q4: I would suggest that:

a) The funding limits proposed mean that part 2 of the R&N recommendations is not possible: “The people who deliver the intervention know the person well and respect their feelings and views”. There is inadequate time funded (at the lower ends) for the therapist to get to “know the participant

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b) The time limitations then also make part 4 of the R&N recommendations difficult to achieve: “The intervention is adapted to the needs of the person receiving it”. If the therapist is unable to spend enough time with the participant to know them well, it is extremely hard for them to identify what adaptations that particular person will need.

c) Some “evidence-based” interventions (such as ABA) have been shown that while they make the child “appear to behave more like” a neuro-typical child, they are also extremely harmful to the child’s own sense of self. They actively teach the child that their own feelings cannot be trusted, that everything they do is wrong, and that they must obey anything anyone in authority tells them to do. This sets them up as “pre-groomed” for sexual abuse later in life, and often leaves a legacy of mental illness as a result of the treatment. However, when people look from the outside at the children growing up it appears that the intervention has been extremely successful - the lifelong damage it caused is often not taken into account, and the treatment is then considered to be “evidence-based” as successful due to that exclusion of long-term outcomes. Having listened to the voices of many Autistic adults who experienced ABA therapy, I’d now be extremely concerned about on what basis a treatment is considered to be evidence-based as I know that this has been an area where the study data has historically been manipulated and the adult voices of Autistic people who experienced the therapy have been ignored. The NDIA must not make any particular intervention mandatory, as due to the wide range of effects from Autism that intervention will not be appropriate for all Autistic children.

d) While supporting mainstream and community participation is extremely important - it needs to be done at a pace that is appropriate for that child. Some therapies may be needed to help develop the child’s sense of self, self-confidence, and that it is OK for them to be different before therapies that then assist them to participate in the community are able to be effective.

Q5: I am concerned that there is an assumption here that all Autistic people will benefit from short- term intensive therapy, when my own experience with the two Autistic people in my family is that they would not have benefitted. If the child requires a prolonged period of sustained therapy (e.g. 1-2hrs per week or something like two different therapies on alternating weeks) for that therapy to have lasting benefits, the belief that it should demonstrate “significant and lasting benefits” in a short period of time is questionable. I am also concerned that therapy for children who need sustained therapy would not meet the “value for money” argument as put forth by the NDIA - but that without that therapy the amount of support that person would need over their lifetime will be higher due to failing to reach childhood milestones as a result of lack of required support. In short, I think that the NDIA are being both short-sighted and trying to generalize the level of support required too much in ways that will not work for some Autistic children.

I’d also like to note that despite the report not being able to draw conclusions on telehealth, many Autistic people that I have spoken with in the last 9 months have found telehealth during Covid to be either difficult or impossible - in part because it essentially forces eye contact with the therapist. Some have managed to use it ok, but many have not. On that basis, I’d be hesitant to recommend telehealth as a viable option for children living in remote areas, and who will therefore need additional funding to cover travel for a therapist to visit, or to cover the significantly increased fuel costs beyond what is “normal” to provide as a parent as a direct result of the distances travelled to/get to/from therapy.

Q6 & 7: I find reading the legislation, the NDIA’s Planning Operational Guidelines, and various court cases to frequently be easier to understand - and far more accurate - than the way the NDIA frequently palm off supports that actually do meet the requirements of the legislation to be funded

by the NDIS.

As far as the Case Studies, I’d like to dispute part of the second case study “Transitioning to High School”, as it potentially violates the NDIS Supports for Participants Rules [2013] legislation, the NDIA’s Planning Operational Guidelines, and the terms of the Mental Health Care Plan.

Anxiety is a common co-morbidity with Autism, and is a distinct part of the person’s disability. The Mental Health Care Plan is explicitly for the clinical treatment of mental illness - not for disability functional capacity building. What this means is that the purpose of the mental health appointments for the participant’s anxiety is actually crucial in determining who the appropriate body for funding is. The example as it currently stands reads like it is supports in learning to cope with the effects of anxiety on activities of daily living.

If those appointments are for clinical treatment, then yes the MHCP would be appropriate. However, if those appointments are for finding ways to manage the effects of anxiety on their ability to cope with activities of daily living, those appointments fall into Rule 7.6 of the NDIS Supports for Participants Rules [2013] legislation and are the SOLE responsibility of the NDIS to fully fund. The current wording on the example gives the impression that the appointments are for finding appropriate ways to manage the effects of anxiety, which actually means that the NDIS is responsible for funding those appointments. This split is very clearly outlined in the legislation:

Mental health

  7.6  The NDIS will be responsible for supports that are not clinical in nature and that focus
 on a person’s functional ability, including supports that enable a person with a mental illness
  or psychiatric condition to undertake activities of daily living and participate in the
 community and social and economic life.

  7.7  The NDIS will not be responsible for:

  (a)   supports related to mental health that are clinical in nature, including acute,
 ambulatory and continuing care, rehabilitation/recovery; or

  (b)   early intervention supports related to mental health that are clinical in nature,
  including supports that are clinical in nature and that are for child and adolescent
 developmental needs; or

  (c)   any residential care where the primary purpose is for inpatient treatment or
  clinical rehabilitation, or where the services model primarily employs clinical staff; or

  (d)   supports relating to a co-morbidity with a psychiatric condition where the co-
 morbidity is clearly the responsibility of another service system (eg treatment for a drug
  or alcohol issue).

The NDIA’s Planning Operational Guidelines

Section 10.8.2 Mental Health

The responsibility for which respective general system of service delivery is to take responsibility for different aspects of mental health support is subject to agreement between governments.

The NDIS will be responsible for supports that are not clinical in nature and that focus on a person’s functional ability, including supports that enable a person with a mental illness or psychiatric condition to undertake activities of daily living and participate in the community and social and economic life (rule 7.6 of the Supports for Participants Rules).

NDIA plans are developed and approved to cover the full cost of supports (e.g. psychology services) where these are considered Reasonable and Necessary for the participant. The decision as to what capacity building supports or therapy would be deemed reasonable and necessary takes into account the responsibilities of the health system and services already available to the participant.

Once supports are approved in a plan the participant is able to use those supports as described in the plan. Therapy may be described generally (e.g. “Therapy up to the value of $X”) in a budget so supports can be used flexibly within that budget or may be described specifically (for example, 1 session of psychology/therapy per week).

Appendix 1 - Table of guidance on whether a support is most appropriately funded by the NDIS

This breaks this down further into something that is easily understandable:

Mental Health

• Transition supports relate to supports relating to supports related to supports related to supports related to supports related to supports related to supports related to supports related to supports related to supports related to supports related to supports related to supports related to supports related to supports related to supports related to

Supports generally funded

Supports generally funded Supports generally their purpose, may be funded by by NDIS funded by other parties the NDIS or other parties

  to increase the
  participant’s ability to
                                   funded by NDIS, or to
  live as autonomously
                                         non-clinical supports,
  as possible, including
   skills in daily life

• Other parties: activities, Assistance where the communication and majority of the social skills, problem coordination and solving and managing transition supports hospital funding of supports. relate to supports avoidance funded by the health/ services and post-

• Assistance with mental health system. acute care accommodation and services. tenancy obligations

• Therapeutic support, - to guide, prompt, or including counselling and • Early undertake activities to social work services: interventions rel ensure the participant ated to mental obtains/retains

• NDIS: where the health, including appropriate support is provided as clinical support accommodation, a non-clinical for child and including specialist standalone service adolescent tenancy support aimed at managing developmental services where no other and/or reducing the needs. tenancy support option functional impact of a is available. participant’s • Residential psychiatric condition care (clinical),

• Assistance with daily on undertaking where the life tasks in a group or activities of daily is for inpatient shared living living or social and treatment or arrangement (non- economic clinical clinical) – where participation, rehabilitation, residential including social and where the service accommodation is communication skills model primarily provided as an integral development, and employs clinical part of non-clinical behavioural and staff. care. cognitive interventions. interventions.

• Assistance with

• Mental health transport – specialist

• Other support crisis services. transport to and from systems: where the health appointments support is integrally required as a result of a connected to a participant’s disability package of clinical (where no other supported provided transport option is by the health or appropriate and not mental health system. substituting for parental responsibility).

Myth Busters

Q: I have used my 10 sessions of psychology under my Medicare funded mental health care plan, I can access the NDIS to top up my mental health care plan.

A:

False. The NDIS does not fund therapy to address symptoms, we fund ongoing functional support for day-to-day living. Treatment supports are not most appropriately funded by the NDIS. NDIS does not require that you access a mental health care plan and is not able to top up funding if you have such a plan. If the only support you require is treatment, it is likely you will not be eligible for the NDIS (because you do not require NDIS support with everyday activities).

This is an area where currently the NDIA are routinely pushing people to use the MHCP and leaving families a few thousand dollars out of pocket each year for gap fees on psychology appointments that were genuinely disability-related functional capacity building appointments.

This then also has the issue that if the participant does end up needing clinical supports during the year, they are unable to access the health system’s assistance for clinical supports that other Australian citizens have access to because they have been forced to misuse those supports for the disability functional capacity building supports they needed that the NDIS legislation specified the NDIS was responsible for funding. The NDIA is actively denying people with disability access to the clinical supports that the NDIS does not fund by making people instead have to use those supports for services that the NDIS was supposed to fund.

This is an ongoing source of abuse by the NDIA towards participants, and this example provided for Reasonable and Necessary supports shows that the NDIA themselves do have a deliberate policy for promoting/pushing the misuse of the Mental Health Care Plan for disability-related functional capacity building psychology supports that legally should have been funded by the NDIS.

It is also worth noting that Autism on its own does not qualify for the Mental Health Care Plan, as it is not a mental illness and it has no clinical treatment supports. The NDIA also routinely push people with Autistic children into misusing the MHCP to obtain their required disability functional capacity building supports for Autism.

Q8 & 9: The tables are not clear on what is classified as a “high area of need” verses a “low area of need”, and some of the examples given could conceivably fit either category.

The funding values here do not appear to provide the ability to have multidisciplinary support so that providers are providing support within their areas of competence, particularly at the low end. I am seriously concerned that by limiting people’s access to early intervention so strictly the NDIA are going to inadvertantly sabotage the child’s future, and end up costing Australia more overall for that person’s support as an adult than what would have been required had they had adequate supports as a child.

Q10: Would need to consider:

• Location & consequent access to services.

• Many therapists have long waitlists to get in to see them, so it may take most of the first plan before the participant can actually start therapy. Substantially cutting the second plan “because they should have built capacity by then” when the participant has only just been able to start therapy means that the participant is then denied the early intervention therapy that they were intended to receive.

• Costs for therapist transport, particularly in regional areas. If the therapist is permitted to charge up to 1 hour travel time plus a per-km fee for that travel time on top of the cost for the actual therapy support, the participant needs to be properly funded to be able to cover those costs. Otherwise the child will receive substantially less therapy than actually intended, likely resulting in substantially worse outcomes, particularly at the lower levels of funding. (e.g. only being able to get 4 hours of therapy in the year instead of 12). Only to then get their funding slashed the following year because of all the therapy - that they didn’t get access to due to provider travel & report costs that the NDIA didn’t bother to fund.