Written submission to the joint standing committee on the National Disability Insurance Scheme — Specialised Aquatic Programs (Autism Swim)

Thank you for the opportunity to provide a written submission recommending changes to NDIS funding for specialised aquatic programmes. Significant time has been put into this submission, with consultation from our Autism Swim Approved providers, individuals with a disability, our clinical team and over 20 parents in our nation-wide community.

Autism Swim is an international, social enterprise of experts specialising in wandering and drowning prevention for people on the Autism Spectrum and with other abilities. Autism Swim is the only certifying body in the world specific to autism and aquatics. This includes learn-to-swim, water therapy, water safety and surfing. Our mission is to allow everyone the same opportunity to thrive and survive in the water. This is particularly important, as individuals on the autism spectrum are 160 times more likely to drown than their peers, subsequent-to wandering (3).

In our work, we focus on community development projects such as training for aquatic professionals to meet the diverse learning, communication, sensory and behaviour support needs of persons on the autism spectrum or with other abilities. We provide 4 years of training, resources and mentoring to providers who are certified as ‘Autism Swim Approved’ to deliver inclusive programs for all ages and abilities. We currently have over 1200 providers, who have made a financial and time commitment to undergo their ongoing certification requirements with Autism Swim.

Below we provide comment and recommendations to be considered by NDIS:

• Funding for Specialised Aquatic Programs for those receiving Early Childhood Early Intervention (ECEI) plans.
• Funding for Specialised Aquatic Programs for those receiving NDIS plans (7–65 years).
• Autism Swim Approved providers must be recognised as specialist aquatic providers that deliver specialised aquatic programmes thats mainstream swim centres and instructors cannot provide. They are the most qualified aquatic providers in the disability space and their qualification should be recognised as such. We think the most viable option for this is to create a separate line item. Parents do not have to choose between therapy services or aquatic programmes for their child, as both are essential.

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All NDIS Local Area Coordinators, Planners and Early Childhood Partners must a a as be educated on the importance of access to specialised aquatic programs for AUTISM SWIM Individuals on the autism spectrum and with other abilities.

The NDIS and specialist aquatic providers require a process to ascertain if a participant is suitable for a 1:1 program, specialised group or mainstream swimming lessons.

We trust that the below submission provides you with additional information and evidence on the complex nature of the world of aquatics for many of our participants, and the fact that we as clinical experts in the area and our national community at large, dispute the recent guidelines published. We welcome ongoing consultation to help ensure that changes are not made in this space without involving us, as the peak body.

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• Erika Gleeson (GC Autism, BA Behaviour Science)

• Jessica Thackeray (BHSc, MOccThySt)

• Founder/CEO, Senior Behaviour Specialist Clinical Lead, Occupational Therapist

• Autism Swim Autism Swim

www.autismswim.com.au ABN: 58 635 523 170

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Funding for Specialised Aquatic Programs for those receiving Early Childhood Early Intervention (ECEI) plans

Recent communications from the NDIS have suggested changes to funding for participation in aquatiс programs. Information on the NDIS website (1) and individual interactions with NDIS Planners have outlined that early childhood plans in particular, are unlikely to be funded by the NDIS as “learning to swim is an everyday expense for Australian families”. It is well established that the NDIS will pay for supports required for participation in an aquatic program above a mainstream lesson (e.g., the difference between group and 1:1 programs). Autism Swim Approved programs differ significantly from mainstream swimming programs (Table A) in that aquatic environments are considered high-risk for many participants. Children on the autism spectrum begin to demonstrate delayed social, emotional, cognitive, motor and communication skills in their first year of life (2). This means that difficulties associated with group participation, understanding instructions and motor skill acquisition are impacted during early participation opportunities. Children receiving early intervention supports require modified aquatic programs to promote positive learning and community experiences. Without positive formative experiences, families find it difficult to identify and feel confident in attending age-appropriate learning, physical activity, and social activities. Autism Swim Approved Programs meet the NDIA’s reasonable and necessary criteria (Table B) which are also relevant to participants of all ages and abilities. Funding for participation in specialist aquatic programs differs from the funding currently available for aquatiс therapy delivered by an occupational therapist or physiotherapist. While therapists utilise the water as a modality to promote engagement and facilitate progress towards identified goals (e.g., gross motor, fine motor, social and cognitive skills), there is no current requirement for knowledge in wandering or drowning prevention, water safety or to promote aquatic skills. This represents two separate skillsets, both of which are integral for promoting development and ensuring health and safety in early childhood plans.

Recommendations:

• Funding for participation in aquatic programs to be consistently made available for children on the autism spectrum and with other abilities who receive ECEl funding, towards goals such as:
  • Improved Personal Safety (wandering and drowning prevention)
  • Support Sensory Processing (i.e., tolerating water over face impacts self-care activities such as bathing)
  • Promote Independence (i.e., opportunities to practice dressing in daily routines and environments)
  • Opportunities for children to work towards developmentally appropriate milestones (i.e., gross and fine motor skills, communication, social emotional. earning and cognition). o. Improved health and wellbeing (I.e., participation in physical activities at an early age to develop physical literacy and establish exercise as a part of daily routines).
• Differentiated funding for participation in aquatiс therapy (with an occupational therapist or physiotherapist) and specialist aquatic program (Autism Swim).

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2. Funding for Specialized Aquatic Programs for those receiving NDIS plans (7-65 years).

Autism Swim believe everyone deserves the opportunity to be safe in and around the water, and to enjoy aquatic environments. However, for individuals on the autism spectrum, and people with other abilities, there are many barriers to accessing the water safely.

It is startling to note that accidental drowning accounted for approximately 90% of total deaths reported in children with ASD ages 14 and younger (subsequent to wandering/elopement) between 2009 and 2011 (4). Incidents of drowning in people on the autism spectrum are higher than the general population for reasons including:

1. Wandering: Wandering is the tendency for an individual to try to leave the safety of a responsible person’s care or a safe area, which has the potential to result in potential harm or injury. Almost half (48%) of children on the autism spectrum attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings.

2. Difficulties with perceiving danger: Many people on the autism spectrum have difficulties with anticipating danger and judging risk, which is exacerbated if they also have an intellectual disability. Difficulties perceiving danger may result in unsafe water behaviours such as:

a. Impulsive water entry. For example, a participant may enter the water without permission; or jump into shallow water without identifying any risk.

b. Distracted by the sensory properties of water. For example, submersion underwater may allow the participant to escape an overwhelming amount of auditory or visual input. In this case, they may stay underwater for unsafe periods of time. With explicit teaching strategies, individuals can learn water safety behaviours and routines.

3. Difficulties with generalisation: Although many individuals on the autism spectrum may have had swimming lessons and developed swimming skills previously, they may experience difficulties in using these skills across different environments (lakes for instance). Generalisation of skills needs to be taught from the very first lesson when developing a new skill. It is also recommended that participants be exposed to variety in aquatic environments to improve generalisation of skills.

4. Seizure activity: Individuals on the autism spectrum are more likely than the general population to have comorbidities such as epilepsy. If an individual is identified as having seizure activity, it is important to have a seizure management plan and appropriate staff training in place. When seizures happen in water, this can be life-threatening.

5. Lack of specialised/inclusive services: traditional teaching methods in aquatics do not consider sensory, communication, behaviour and learning support needs, or individual goals and preferences.

Autism Swim Approved Providers are equipped with the necessary information and resources to support families to create safer environments and protect their participants from safety concerns. Our programs consist of 3 core learning elements: water safety, skill acquisition and generalisation of skills. Without a thorough understanding of teaching strategies and environmental accommodations, participants with NDIS plans are significantly less likely to participate in aquatics programs, despite swimming being consistently identified as a preferred physical activity for people with a disability.

Funding Recommendations for Aquatic Programs

Without adequate access to funding for aquatic programs in individual NDIS plans,

specialised aquatic programs (such as those delivered by Autism Swim Approved AUTISM SWIM providers) are less likely to continue or will be only accessible by families who can afford

to pay for the increased supervision and training of facility staff. We hope to continue working

towards inclusive communities where these inequalities cease to exist. However, without financial supports at provider levels, this is less likely to be feasible into the future.

Recommendations:

• Funding for participation in aquatic programs to be consistently made available for people on the autism spectrum and with other abilities who receive NDIS funding, towards goals such as:

• Improved Personal Safety (wandering and drowning prevention)

• Support Sensory Processing (i.e., tolerating water over face impacts self-care activities such as bathing)

• Promote Independence (i.e., opportunities to practice dressing in daily routines and environments)

• Improved health and wellbeing (lI.e., participation in physical activities at an early age to develop physical literacy and establish exercise as a part of daily routines).

• Social and Community Participation (l.e., Increased access to aquatic venues which understand and accommodate individual support needs will ensure increased choice and opportunity for participants with an NDIS plan to access social and community programs.)

• Differentiated funding for participation in aquatic therapy (with an occupational therapist or physiotherapist) and specialist aquatic program (Autism Swim).

3. Autism Swim Approved Providers must be recognised as Specialists Swim Instructors and Therapists that deliver specialized aquatic programs that mainstream swim centres and instructors cannot provide.

91% of families in the Autism Swim community have left another aquatics program due to them not understanding or accommodating the needs of their child. Aquatic providers who have not received adequate training to modify and adapt their programs for individual support needs place participants with an NDIS plan at increased risk of injury, drowning, social isolation or reduced participation. This is largely due to misinformed approaches (e.g., instructors using punishment, working towards set programs rather than towards individual goal attainment, placing students in small classes when they initially require 1:1 to target key safety skills etc)

Participation in aquatic and surfing programs can be considered a high-risk activity for individuals who have sensory, communication, learning and behaviour support needs. 70% of individuals on the autism spectrum and with other abilities have comorbid conditions such as epilepsy which places them at an increased risk of seizures in the water. It is integral that aquatic providers have extensive knowledge in water safety, generalisation, positive behaviour support, communication and learning strategies.

Autism Swim Approved Providers learn about water safety practices, child safety, positive behaviour support, effective motor learning and communication strategies, with quarterly knowledge checks.

ABN: 58 635 523 170

To be a compliant Autism Swim Approved Provider, aquatic professionals must hold

elevant aquatics qualifications, CPR, working with children checks and utilise quality AUTISM SWIM assurance strategies (e.g., Intake Forms, Incident Reporting, etc). Through partnership

with Autism Swim as a certifying body of inclusive aquatic programs, the NDIS can:

• Improve the quality of program delivery and options available for individuals with an NDIS plan who wish to access and participate in an aquatics program education and skills.

• Uphold a higher standard of participant respect and dignity in aquatic programs.

• Development of community programs which are inclusive, so that everybody in our community has choice and control over the social, recreational and health activities they participate in.

Recommendations:

• NDIS funded aquatic programs which are delivered by Autism Swim Approved providers offer a higher standard with increased likelihood of being effective and value for money.

• The NDIA and Autism Swim can ensure a high standard of program delivery through recognition of Autism Swim Approved Providers to be providers of NDIS supports in aquatic environments.

4. All NDIS Local Area Coordinators, Planners and Early Childhood Partners are educated on the importance of access to specialised aquatic programs for individuals on the autism spectrum and with other abilities.

Autism swim’s clinical team provide community education on the risks of wandering and the importance of aquatic programs that are tailored to the needs of individuals in our community. Without understanding the barriers to participation and significant safety risks of individuals not having access to aquatic programs delivered by adequately trained and certified providers, partners and planners in the NDIS are unlikely to recognise how aquatic program participation differs from a mainstream learn to swim program. Identified areas of knowledge gaps include:

• Many of our participants are not attending aquatic programs for ‘swimming lessons’, but rather, water safety and water therapy are their necessary goals to begin with, in order to transition to swimming-based skills in time.

• The fact that those on the autism spectrum are 160 times more likely to drown than their peers (please see our annual report for more statistics on the high-risk nature of those what we work with).

• Learning to swim is not ‘recreation’ or a ‘nice to have’ but rather, a necessity for these participants given the associated risk factors, this goes beyond reasonable parental responsibility.

• Unfortunately, there has been some commentary made by some planners regarding the fact there is no evidence to support participation in aquatic programs towards therapeutic outcomes. This is factually untrue. There is a plethora of research to support aquatic programs for those with a disability. We have an extensive bank of peer-reviewed, evidence-based journal articles which we are happy to share which prove that specialised aquatic programs increase communication, social skills, daily living skills, gross and fine motor skills, to name just a few.

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Recommendations:

• Training and education for NDIS representatives. Autism Swim’s Clinical Team are available to provide education and training to assist decision makers in the NDIS to consider the importance of water safety and aquatic program participation for individuals who identify these goals in their planning meetings.

5. The NDIS and specialist aquatic providers require a process to ascertain if a participant is suitable for 1:1; small, specialised groups; or mainstream swimming lessons.

Autism Swim can assist with putting together the related assessment tools for this. Some suggestions made previously by the NDIA involve a participant attending mainstream lessons for 6 months before ascertaining whether 1:1 is suitable, or utilising funding so that a support worker can be in the water during a group program. Forced participation in a group program before a child has the skills and relationships required can lead to unsafe behaviours and disengagement from an aquatic program. A far more practical, safe, and value-for-money solution would be to develop risk and skill assessment frameworks for each participant under three core categories: Water Safety, Water Therapy and Learn to Swim. This will empower aquatic professionals, parents and NDIS planners to ascertain an individual’s support needs around the water. Autism Swim Approved providers are the most qualified professionals to undertake assessments and deliver inclusive aquatic programs in Australia.

Recommendations:

• Collaborative partnership between the NDIA and Autism Swim to develop risk and skill assessment frameworks to ensure high standards of safety and enjoyment of all participants of the NDIS who engage in aquatic programs.

Case Study

Hamish is 7 years old and has been attending Autism Swim lessons for three years. Upon commencement, Hamish presented with the following difficulties:

• Unable to regulate himself in or around water

• Unable to wait to be told to enter the water (i.e. would run and jump in wearing his clothes, as soon as he sighted the water)

• Once in the water, would spend the majority of the lesson under water and was reliant on his Autism Swim Approved provider to prompt him to come up and take a breath

• Did not have the skills to wait, take turns or follow one-step instructions

• Showed zero safety awareness skills around water

• Engaged in extreme meltdown behaviours at the cessation of his lessons

• Would not tolerate anyone else in the water around him apart from his Autism Swim Approved provider. This included peers/other swimmers, a parent or support worker (all were trialled and only caused Hamish’s behaviours to escalate exponentially

www.autismswim.com.au ABN: 58 635 523 170

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• Unable to cope and tolerate with any other noises in the environment, the result WV of which was again, extreme behaviours of concern AUTISM SWIM

Since then, incredible progress has been made in all the above domains. So much so, that Hamish is now ready to begin a transition to share part of his lesson with another participant. This will be done in a slow, systematic way — the only approach supported in the literature and outlined in training delivered by Autism Swim. Our goal is for Hamish to attend his school swimming carnival this year with requisite supports.

Had Hamish been placed immediately in a group scenario, this would have been incredibly unsafe — for him, his peers, and his instructor. Not only is it likely that progress would not have been made, but due to inadequate supports and adaptations, the risk of Hamish developing trauma and multiple other water-related setbacks is likely. His risk profile would only have increased. For Hamish and many participants with similar challenges, 1:1 lesson is reasonable, necessary and the only safe solution.

CONCLUSION:

As you can see by the above, the NDIA removing funding for 1:1 aquatic programs is unjustified, safe and is a decision that has been made without necessary consultation from the most qualified in the space. This decision has caused extreme anxiety in our community due to the reliance that many families in our community place on this service (and subsequent funding) due to the incredibly high-risk nature of their child in aquatic environments. The above recommendations are clinically justified and serve to provide the NDIA with a clear path forward in terms of their decision making. Autism Swim as the peak body, as well as many of our providers, are requesting to be involved in any future decision making in the space. We look forward to working with you to ensure that aquatics is safe and inclusive for all.

Appendix

Table A. Autism Swim Approved Supports Are Reasonable And Necessary

Reasonable And Necessary Autism Swim Approved Programs:

Criteria

• Must Be Related To A Participant’S Disability Experienced Aquatic Professionals Who Have Completed
• 4 Years Of Additional Ongoing Training To Ensure They Are Industry Leaders Of Inclusive Programs And Support.
• These Aquatic Professionals Are The Most Qualified In Australia To Teach Those With Unique Needs, Given That Autism Swim Is The Only Certifying Body. With Appropriate Skills And Training, Aquatic Providers Are Able To Make Environmental And Program Adaptations To Ensure People Of All Ages And Abilities Feel Safe And Welcome In And Around The Water. Supports Help Participants To:
  • Pursue Their Goals, Objectives And Aspirations
  • Increase Their Independence
  • Increase Community And Workplace Participation, And
  • Develop Their Capacity To Actively Take Part In The Community (Regular Participation In Physical Activity - Building Physical Activity Habits Early In Life Contributes To Increased Likelihood Of Healthy Habits And Routines Later In | | Life; Social Activities ).
• Must Not Include Day To Day Living Costs See Table C. Autism Swim Approved Aquatic Programs Not Related To Your Disability Support Differ From Everyday Learn To Swim Programs. Needs“Should Represent Value For Money Many Families In The Autism Swim Community Report That Participating In An Aquatic Program Has Been Equally Or More Effective As Individual Programs. Families Are Able To See Progress Towards Goals Such As Participating In A Group With Others, Self-regulating Arousal Levels For Program Durations, Communicating Using Verbal, Visual Or Key Sign Language, Developing Gross And Fine Motor Skills, Etc. Autism Swim Approved Must Be Likely To Be Effective And Work _Providers Are Skilled Aquatic Professionals With A Passion For Inclusion. They Are Well Positioned To Collaborate With Allied Health Professionals To Deliver A More Cost-effective Approach Toward Therapy Goals, Particularly In Locations Where Demand For Allied Health Professionals Result In Long Waitlists. Given That All Autism Swim Approved Lessons Contain Elements Which Contribute To The Development Of Motor, Cognitive And

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social-emotional skills, this is significantly less cost to the NDIA than typical therapy sessions.

Activity must facilitate social and Many Autism Swim participants will require 1:1

economic participation supervision, at least for a period of time — to develop their safety skills in the water, before they may begin the transition to 2:1 and possibly 3:1. It is simply incredibly unsafe to place them in a small group scenario without them having developed some core safety skills first.Whilst learning in a 1:1 capacity, they can develop social relationships with their provider, the pool staff and any other participants who may be engaging in a program at the same time. When transitioning to 2:1 or 3:1 (if deemed a realistic goal), thi s of course opens many other socialisation opportunities. Swimming for those on the autism spectrum, has been found to significantly increase skills in a plethora of other areas, such as communication. We have a whole suite of journal articles on the benefits, should this be required. Should take into account support given Swimming programs are typical for pre-school and to you by other government services, your family, carers, networks and the additional costs associated with accessing specialised community. supports or individual programs are reasonable and necessary as these relate directly to the person’s disability. Any form of school swimming program is unsuitable for Autism Swim participants in many aspects, beyond barriers to participation, there are multiple factors of school swimming which mean that skills are not typically generalised into other settings for those who have learning support needs. This means their only avenue to learn vital water safety and swimming skill sets, is through their qualified Autism Swim Approved provider. Whilst we understand the focus the NDIA places on social participation in the aquatics space, the reality is that even something like a swimming carnival can be incredibly exclusionary for our participants if they have not had a chance to develop adequate baseline skills in the 1:1 capacity that they need first.

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Table B. Autism Swim Response to commentary made by NDIA planners and partners about funding specialist aquatic programs.

Commentary received by parents and participants in the Autism Swim Community: “Private swimming lessons do not promote inclusion” “Learning to swim should be the primary responsibility of the parent”

_ For many of our participants, slowly transitioning to a small group will be a long-term goal for them, but for now, they need to develop enough key water safety skills to enable this. As an example of some of the needs of our participants, they may go under the water to alleviate their sensory needs however do not know to come back up and take a breath and are reliant on others for that - yet are expected to thrive in a group environment, according to the NDIA, with socialisation it would appear, being deemed more important than safety.

Autism Swim Approved Providers access training and resources to facilitate positive transitions from individual to group programs when an individual identifies this as a goal. Aquatic providers who deliver group programs are the best place professionals to be preparing a participant for a group program. This allows the provider to identify strategies that work for each individual participant (i.e., sensory processing, motivating factors, strengths and challenges in the water).

Children on the autism spectrum are 160 times more likely to drown than their peers, with a myriad of reasons as to why this is the case. More context on the statistics can be found in our annual report (5). These participants require the support of highly trained aquatic professionals to provide water safety education, water therapy and individualised learn to swim teaching practices - which is what Autism Swim Approved providers do. It is completely unreasonable to expect parents to have these skills with no formal qualifications in the area. Similarly, adding a Support Worker to the environment can create over-stimulation and safety concerns if they too, are not Autism Swim Approved and hence, do not have the requisite specialist skills in this area.

www.autismswim.com.au ABN: 58 635 523 170

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Table C. Autism Swim Approved Aquatic Programs differ from everyday learn to swim programs.

Mainstream Swimming Lessons

• Often in a big pool with many classes
• Staff who are inexperienced in working with persons with disability.
• Often change in staff when one is sick or high turnover in the industry.
• “Noise level is often very high and can be very overwhelming for a person with auditory sensitivities.”
• Distractions, people coming and going, talking, and running other classes.
• “Class ratio of up to 1:6 which means waiting, taking turns, listening to instructions, and then performing the task.”

Set program structures and outcome measures relating to the swimming program.

| Experienced and qualified providers with specialist knowledge of learning, sensory, communication and behaviour supports, and access to mentoring on program adaptation and delivery from allied health professionals with specific knowledge of inclusive program development, wandering and drowning prevention. | Same teacher who takes the time to know the participant and their supports, use of intake and communication resources. _ Noise level is considered when program planning to ensure optimal opportunities for program participation each week. Individual needs are considered when scheduling and program planning (e.g., lighting, oise, other participants) to ensure optimal opportunities for program participation each week. 1:1 or small groups with teaching supports (i.e., visual strategies) and modelling to ensure optimal motor learning. Transitions to small groups are adequately planned for operationalised in a way that is safe for all. | Individualised programs which work towards individual goals as determined by the participant and their families. Program structure is often determined according to participant arousal and emotion levels, interests on the day. All lessons however, inorporate elements of water safety, water therapy and learn-to-swim, which is a significantly different approach to mainstream swimming lessons.

www.autismswim.com.au ABN: 58 635 523 170

Behaviour Support Strategies

Behaviour Support Strategies which include time outs, criticism and verbal feedback which contributes to low self-esteem and disinterest in participating in physical activities. Frequent program disruptions and reduced goal-directed time.

Sensory-informed providers with training in positive behaviour supports ensure that individual needs are being met so that participants are able to engage in age- appropriate activities in their community.

Fast paced program which focuses on skill acquisitions and ‘moving up’ levels.

Programs informed by water therapy and self- regulation strategies to assist sensory processing throughout program delivery. Evidence based programs to assist with sensory processing, motor learning, gross motor and fine motor skill development, communication, and cognition skills. Celebration of the development of individual skills rather than moving up set levels, which may never occur for our participants and most importantly | this context, are likely to be irrelevant to their NDIS goals.

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REFERENCES:

1. National Disability Insurance Agency (2021). Our Guidelines: Swimming lessons in early childhood.

Viewed 5/07/2021. https://ourguidelines.ndis.gov.au/would-we-fund-it/improved-health- and-wellbeing/swimming-lessons-early-childhood>

2. Health Direct (2021). How is autism diagnosed?. Viewed 5/07/2021. hittps://www.healthdirect.gov.au/autism#:~:text=About%201%20i1n%20150%20Australians,o

£%202%200r%203%20years.

3. Autism Swim (2019). Australian ASD population and Autism Swim approved services. Viewed 5/07/2021. https://autismswim.com.au/2019/08/26/australian-asd-population-and-autism-

services/#:~:text=Autism%20Swim%20is%20the%20only and%20support%20to%20d0%20so

4. Autism Swim (2019). World Autism awareness month. Viewed 5/07/2021. https://autismswim.com.au/wp-content/uploads/2020/03/World-Autism-Awareness- month.pdf

5. Autism Swim (2019). Autism and drowning: The underreported issue. Viewed 5/07/2021. i i -content/uploads/2019/02/AS-Annual-report-Final-digital-

www.autismswim.com.au ABN: 58 635 523 170