Today’s blog post by SAISI vice chair, Elize Janse van Rensburg, is a summary of her webinar developed for the Telehealth-SA Facebook group in light of the COVID-19 lock down in South Africa. It is a long read but provided here as a resource for therapists trying to settle into a new way of thinking. Enjoy!
The global COVID-19 pandemic has brought about a very sudden change in the way the vast majority of occupational therapists are able to work. In South Africa, as in many other countries around the world, a nationwide lock-down with movement restricted to only essential services has caused many occupational therapists to cease delivery of face-to-face intervention services.
Shortly after the announcement of the nation-wide lock-down in South Africa, the Health Professions Council of South Africa (HPCSA) announced that they would allow the delivery of telehealth services, something that has largely been prohibited by the HPCSA in the past. Initially, services could only be delivered to existing clients; however, this limitation has also since been lifted. The HPCSA now states that:
Telehealth should preferably be practiced in circumstances where there is an already established practitioner-patient relationship. Where such a relationship does not exist, practitioners may still consult using Telehealth provided that such consultations are done in the best clinical interest of patients.(HPCSA Notice to amend Telemedicine Guidelines during COVID-19 – dated 3 April 2020)
These changes have caused many occupational therapists trained in Ayres Sensory Integration® (ASI®) to ask whether it is at all possible to deliver therapy from an ASI® frame of reference via telehealth. It sounds so strange to think that such a hands-on intervention could be delivered over a computer screen. Being confronted with these questions in my own mind as well as from many colleagues, and after being asked to present a webinar for the Telehealth-SA Facebook Page on this topic, I wondered whether there was something in the history of sensory integration that could help us – and oh boy was I surprised and excited to see that no one other than Ayres herself showed us decades ago exactly how we could do it!
Forty-five years ago, in 1975, Jean Ayres’ nephew, Philip Erwin, at that stage in his early teens, struggled immensely with difficulties that Ayres linked to sensory integrative dysfunction. In the absence of someone trained in sensory integration where Philip lived, Ayres proceeded to ‘treat’ Philip via hand-written letters! That’s right – not Zoom, not MS Teams, not WhatsApp or e-mail, hand-written letters sent by mail, every second week. Ayres’ letters, as well as reflections from Philip and one of Ayres’ scholars, Zoe Mailloux, are collated in the book “Love, Jean”, which was published in 2004 (Ayres, Erwin & Mailloux, 2004). I had read the book before as I believe many of you have, but when I re-read it with “telehealth glasses” I was astonished by how much there was to learn from the book 45 years later.
Join me on a journey through twelve lessons about ASI® and telehealth that I found (and if you read the book, you may find even more)…
- GENERAL PRINCIPLES FOR TELEHEALTH WHEN USING AN ASI® FRAME OF REFERENCE
Lession #1: Desperate times call for desperate measures
If I knew somebody in Connecticut whom I felt could do a good job of treating Philip I would refer you to that person. Since I don’t, I am offering to treat Philip by mail, providing he would like to do so (Ayres, 1975 in Ayres, Erwin & Mailloux, 2004).
We read in the letters that Ayres herself acknowledged that treating Philip by mail was not her first choice, but in the absence of other options, she was willing to do so because it would be in Philip’s best interest. For us as therapists, acting in the best interest of our clients should be our first priority. Telehealth may not be suitable for everybody, and as in face-to-face therapy, we need to tailor our approach to each individual child and family’s situation. The last part of the quote is also very telling – “…provided he would like to do so…” – we obviously need informed consent from clients (both children and parents), but more than that, we need their buy-in if we are to succeed in delivering telehealth occupational therapy services using an ASI frame of reference.
Lesson #2: Telehealth takes TIME and PREPARATION – it is neither quick nor easy…
Not too much was said at the time. Nancy [Philip’s mother] believes that Jean wanted to think about the ramifications – the big investment of her time and energy – of the offer she would make soon thereafter to treat Philip from a distance. (Erwin in Ayres, Erwin & Mailloux, 2004)
The big investment of her time and energy…indeed, telehealth is neither quick nor easy. It requires extensive preparation on the part of the therapist, thorough communication with the family, assisting the parent or caregiver to prepare and working within essentially unfamiliar territory. A good friend of mine sent me this quote:
I would argue that in telehealth, we should not just be offering a service. Willingness to serve, giving generously in the best interests of our clients, will be the only way that we can deliver telehealth in an ethical manner.
Lesson#3: Telehealth is never the ideal in ASI…
The hardest part of being treated under these circumstances is the lack of structure which keeps a person at the task and reminds him that the whole thing is worthwhile. (Ayres, 1975 in Ayres, Erwin & Mailloux, 2004)
In telehealth, the presence of the therapist to provide physical and emotional support and co-create playful, just-right challenges is missing. Telehealth, therefore, does not adhere to criteria for Fidelity in ASI® directly, and will in most instances require a proxy (such as a parent or caregiver) to be present with the younger child to, for example, ensure physical safety, assist with regulation of arousal, tailor the activity to present a just-right challenge and ensuring success (Parham et al. 2011).
- ASSESSMENT IN TELEHEALTH WHEN USING AN ASI FRAME OF REFERENCE
Lesson #4: Comprehensive assessment needs to take place face to face
In response to your request for information on having Philip tested for sensory integration dysfunction, I suggest that you write an O.T.R. [a registered Occupational Therapist] who was sent to me last year for three weeks of in-service training, and has quite a bit of experience at the Churchill School in New York City in evaluating children with learning difficulties (Ayres, 1975 in Ayres, Erwin & Mailloux, 2004).
Initially, HPCSA regulations provided only for telehealth services to existing clients. Although this has been amended, it does attest to the fact that conducting comprehensive assessment over telehealth is not ideal and, in many instances, not feasible. Ayres herself referred Philip to another therapist to conduct the assessment in person, where after she provided the ‘remote therapy services’ by mail.
The coding structure proposed by OTASA for the delivery of telehealth services in South Africa does include some assessment codes (codes 66201 through 66205), but does not include codes for comprehensive assessment.
Lesson #5: Parents can make valuable observations to AID in the assessment process
If your observations on post-rotary nystagmus are accurate (and I know how hard it is to be accurate) they are quite significant. No wonder Philip is having a rough time! The fact that he disliked the rotation is also significant… (Ayres, 1975 in Ayres, Erwin & Mailloux, 2004).
Parents/caregivers who buy into telehealth, are able to contribute to observations that can aid in the assessment process. We can use written communication (e.g. emails), telecommunication (e.g. phone calls or video calls), checklists, and standardized questionnaires (such as the Sensory Profile 2 and the SPM that are both available for remote on-screen administration by the parent) to obtain information from parents to aid in the assessment process. For many of us, the reality is that we have not seen our existing clients for an extended period of time by the time we embark on telehealth services, and a measure of re-assessment may be necessary before continuing the therapeutic process.
Lesson # 6: Be creative in selecting data sources
Phil, sometime send me a piece of your math work, with errors, and also tell me just how you see the problem with math. Is it memory? Not knowing where to put the numbers? (Ayres, 1975 in Ayres, Erwin & Mailloux, 2004).
Ayres was really creative in the way she continuously assessed Philip’s occupational performance and participation. She asked him to report back to her on specific things, asked for work samples, and interestingly also inferred about his progress from his actual letters (such as commenting on that his handwriting seems tidier later on in the therapeutic process). In our era of technology, we are even more fortunate and are able to use live video feed, recorded videos of activities or behaviours sent to us by parents (using secure platforms), pictures, the child/parent’s own interpretations of the problem and even online assessment tools such as mentioned under Lesson 5. When we collect this data and transpose it to a data-driven decision-making process throughout, we have a very good chance of ‘getting it right’ (Schaaf & Mailloux, 2015).
- SETTING THE STAGE FOR INTERVENTION IN TELEHEALTH WHEN USING AN ASI® FRAME OF REFERENCE
Lesson #7: Consider the context, environment and available resources and use them
This is what the procedure would involve: I would explain by mail the basic principles and the kind of equipment needed to engage in a series of sensorimotor activities. Most of the equipment I have put together myself, and there isn’t anything that I have made that couldn’t be made easier and better by at least four members of the Erwin family (Ayres, 1975 in Ayres, Erwin & Mailloux, 2004).
There are many instances in the book where Ayres would tailor her recommendations to the space and equipment that Philip had available. We can do that too; it will require that you find out from the parent/caregiver what they have available for use during telehealth therapy sessions (you can find a helpful checklist as a free download here), and that you tailor your planning for therapy and home programs accordingly. Amidst the nation-wide lock-down we are unable to procure new equipment or toys, but luckily occupational therapists are notoriously creative beings! Ayres also reminds us that we don’t even need fancy equipment:
Remember that when you can’t do anything else by way of therapy, you can always roll on the floor. That’s one of the best things to do, anyway(Ayres, 1975 in Ayres, Erwin & Mailloux, 2004).
Lesson #8: Clients (children and parents) need to be EVEN MORE IN THE LOOP with the reason
behind what you do…
I’ll try to help you understand what I do know so that the activities will be more meaningful (Ayres, 1975 in Ayres, Erwin & Mailloux, 2004).
One of the things that struck me most about Ayres’ letters to Philip was the amount of time she spent on explaining her reasoning behind her recommendations. She explained the neuro-anatomy, neuro-physiology, sensory integrative processes, everything. And her rationale for that is clear in the quote above – “…so that the activities will be more meaningful.” Parents (and children) need to be fully in the loop about what they are doing and why they are doing it. This will not only help them to derive more meaning from the recommendations, but will also empower them to be able to problem-solve when they need to make adaptations in-the-moment either during a telehealth session or when you are not there with them through a screen. Ayres also set clear guidelines for safe participation to Philip and his parents – this is vital to ensure greater adherence to fidelity where safety is the number one priority.
- SELECTING AND CONDUCTING APPROPRIATE INTERVENTION IN TELEHEALTH WHEN USING AN ASI® FRAME OF REFERENCE
Lesson #9: Anticipate responses to recommendationsand monitor responses and progress regularly
If Philip chooses to follow this suggestion, I would like him to write me every two weeks and tell me how he felt about that activity…
Sometimes during the 2nd to 4th month of treatment most individuals go through an upsetting period during which they feel less well organized and rebel at the treatment, but once past that stage treatment can be enjoyable. Academic improvement does not appear, usually, until around the fifth month…
(Ayres, 1975 in Ayres, Erwin & Mailloux, 2004).
Luckily with smartphones and the internet, we don’t have to wait two weeks to get feedback from our clients and their parents/caregivers! But just like Ayres, we need to follow up regularly to monitor responses to treatment, as we are not always there in person to make adaptations. It will help if we give guidance to parents on what to look out for in terms of adverse responses, dysregulation, and so forth in order to equip them to make adaptations timeously. We also need to build grading into recommendations; this will assist parents/caregivers with adapting activities to be successful.
Lesson #10: Encourage and support INITIATIVE from child/parents
The equipment that you and your family made using two inner tubes is excellent and I commend all of you. I have used one inner tube as you illustrated, but it is hard to balance on only one. Using two makes it easy. That is what is good about it: it gives you the opportunity of not only swinging back and forth but also going around (Ayres, 1975 in Ayres, Erwin & Mailloux, 2004).
Our clients and their parents are wonderfully creative (and they know exactly what they have at their disposal). Encouraging and supporting that initiative will undoubtedly make a positive contribution to clients’ buy-in to telehealth. What also struck me in this excerpt is how Ayres not only commended and supported them in their initiative, but also helped them to unlock the affordances of the equipment that they had. This way, they could apply the principles that she was sharing with them even more precisely.
Lesson #11: This is NEW to all – test recommendations out yourself …
But if your basement is small, don’t bother; get the accelerated motion by pushing against the wall with your feet. (That’s the way I ride my scooter board, which I do several times a week and feel the good effects for several hours.) (Ayres, 1975 in Ayres, Erwin & Mailloux, 2004).
Perhaps the one thing that makes us most uncomfortable with providing telehealth services (especially in South Africa where we have never before been allowed to do it), is the thought of not having our trusted pieces of equipment available to us. Whatever we were to recommend to our clients now, will be things that we have not had the opportunity to experience first-hand. I do think it is important to try out things that we suggest to our clients ourselves, so that we can be sure that it is safe and that it works. The same goes for the technology that we plan to use – it is important to have a trial run to make sure both you and the family you are providing telehealth services too, are comfortable with the platform and know how it works.
- MEASURING OUTCOMES IN TELEHEALTH WHEN USING AN ASI® FRAME OF REFERENCE
Lesson #12: Always link recommendations to functional outcomes – and MEASURE OUTCOMES
Academic improvement cannot be guaranteed, of course, but it is almost certain that physical coordination and feeling of well-being would improve (Ayres, 1975 in Ayres, Erwin & Mailloux, 2004).
Ayres spent a significant amount of time in her letters to Philip to explain to him the outcomes that she anticipates from the treatment. She also asked him to report to her on specific aspects of these outcomes in his letters back to her – one of the ways in which she measured the outcomes of her intervention. Outcome measurement is crucial – even more so when we are in unchartered territory where funders are hesitant to pay for telehealth services and where we have little documented evidence of efficacy. Thorough record-keeping, obtaining and documenting feedback from clients and parents/caregivers regularly, and using outcome measures relevant to the functional outcomes targeted in your intervention can all potentially contribute to the body of knowledge and evidence.
SOME FINAL THOUGHTS
Can Telehealth make a positive difference in the lives of children with SI difficulties and dysfunctions?
Ayres herself, unknowingly, provided us with the answer to this question. While not our first line of defense, telehealth services have great potential in the delivery of occupational therapy services to children with sensory integration difficulties and dysfunctions. It will require an open mind, flexibility, creativity and indeed bravery, but I have no doubt in my mind that it is possible.
ASI WISE free webinar on technology and SI: https://sensoryproject.org/technology-and-ayres-sensory-integration/
Telehealth SA webinar by Marelé Venter on Telehealth and Child and Adolescent Mental
Telehealth SA webinar panel discussion by OTASA members touching on ethics and
coding: https://www.facebook.com/tiaan.moolman/videos/10159571750491632/ (you will have to be a member of the Telehealth SA Facebook page to access this video)
Ayres, A.J., Erwin, P.R., Mailloux, Z. (2004). Love, Jean: Inspiration for families living with dysfunction of sensory integration. Crestport Press, California.
HPCSA Guidance on the application of Telemedicine Guidelines during the COVID19 Pandemic. https://www.hpcsa.co.za/Uploads/Events/Announcements/APPLICATION_OF_TELEMEDICINE_GUIDELINES.pdf
OTASA Occupational Therapy Guidelines for Telehealth Services during the COVID19 Pandemic. https://mcusercontent.com/81381981e9472692c1e82b2a1/files/4fc875ac-b8b0-426e-a028-8de37912f9dc/OT_guidelines_for_Telehealth_01.04.2020.pdf
OTASA Occupational Therapy Guidelines for Telehealth Services during the COVID19 Pandemic Update 7 April 2020.
Parham et al. (2011). Development of a fidelity measure for research on the effectiveness of the Ayres Sensory integration intervention. AJOT, 65, 133–142.
Schaaf, R.C., & Mailloux, Z. (2015). Clinician’s Guide for Implementing Ayres Sensory Integration ® Promoting Participation for Children with Autism. Bethesda: AOTA.
Members of SAISI Exco for support, encouragement and valuable contributions to the content of the original presentation.
Previous webinars as listed.