How do we make eye tests accessible to people with complex disabilities at Special Eyes?
Having an eye test can be a bit nerve-wracking for anyone, but when you add complex disabilities into the mix, it can all feel a bit overwhelming, both for the person having the eye exam, but also (sometimes even more) for those supporting them. Our aim at Special Eyes is to make eye healthcare and vision assessment accessible to everyone and we have a lot of tools and methods that we use to accomplish this. This blog post outlines some of the ways in which we support children and adults with different needs to have an eye test.
Social stories
Social stories are a well recognised, evidence-based way of supporting people with complex disabilities to access unfamiliar/new experiences. They are simple stories that describe a social situation and outline what is expected in that situation. We have a social story for children, and another for adults. Both are available on our website, and we also include a link in our booking confirmation email. Social stories are widely used in other therapy and disability settings, and so they are often a familiar tool for our patients and those who care for them.
Image of the Special Eyes social story. The title reads “Having and eye test: what will happen?”. There is a picture of a boy wearing ‘trial frame’ optometry glasses and smiling while someone adjusts one of the dials on the glasses. At the bottom there is text which reads “Created by Dr Ursula White” and displays the Special Eyes web address and email.
Social stories can be a great tool when used to prepare someone for a new experience. Our social story details the name and a photo of Dr Ursula, so the person they meet is just that little bit less unfamiliar when they arrive. It also includes images of some of the toys, charts, and equipment we might use during the eye exam. Some of our younger patients enjoy spotting the items they saw in their social story when they first come to visit, and we love this too.
Reading through the social story in the days leading up to the eye exam provides an opportunity for the person to process what will happen at their own pace and carers/parents/support workers can help them to identify any concerns.
Appointment structure
We have found that, to try and cram everything into one appointment is frequently not the best approach for our patients, making eye healthcare accessible takes time, and rushing rarely ends us where we want to be. Our standard approach is to book two appointments, spaced 1-3 weeks apart and spread the assessments over the two sessions. There are several advantages to this:
From the outset it doesn’t feel like we are racing against the clock
The first appointment can be adjusted as needed, and can include more time for familiarisation, discussion with parents/carers as to what the specific goals are, some of the less ‘invasive’ tests can be performed, leaving the more invasisve/up-close-and-personal assessments for the second visit.
The period between the two appointments provides an opportunity to process discussions which have taken place during the first assessment and these can then be revisited and particular queries/concerns/challenges discussed in more depth during the follow-up appointment.
If the person we are assessing is finding the experience too overwhelming, we can change tack, and, rather than performing assessments, we use the first appointment to create a ‘plan’ for the subsequent appointment. All the equipment we will use is shown to the person and we offer choices, where possible, such as “Would you like to wear the funny glasses, or would you prefer we just hold the lenses up in front of your eyes?”. Sometimes we demonstrate the test on Mum/Dad, or a teddy or doll, so the person can see what will happen, but with no expectation that they will perform the test there and then.
Choice boards
If our first session becomes a planning appointment, we make up a choice board to be taken away and revisited a few times between the two appointments. Again, this helps familiarise the person with what is going to happen and gives them some autonomy.
A Special Eyes choice board. The board comprises two headings: ‘to do’ and ‘finished’. Below are a series of ‘patient view’ images of Dr Ursula performing various tests. The images start under the ‘to do’ heading, and are moved across to the ‘finished’ side as they are completed.
The back of each image is annotated with a description of the test, to help parents/carers describe what each image represents. The actual name of each test is also detailed, for those of our patients who like to know/learn all the facts and technical information.
Choice board images showing the corresponding description written on the reverse. Descriptions are “where is the shape / visual acuity” and “wiggly light and lenses / retinoscopy”
We have a couple of different designs of choice board, which can be selected based on what fits best or familiarity, i.e. if someone is used to a particular style, we would stick with what is familiar to them.
Another choice board with the headings “First, Next, Then, and After” at the top. Images displayed are the patient view of Dr Ursula performing a range of different tests.
The second visit
We have found that the second appointment is usually quite different to the first. Patients who really struggled to stay regulated and comfortable during their first session can often manage all the the assessments we would usually try to perform during a standard eye exam with no or minimal issues.
What is a successful outcome?
What we class as success can look different for different people. For some, we end up performing a fairly standard eye exam, with all the usual tests incorporated, while for others, success is completing a smaller array of the most essential assessments. For many of our younger patients, having an eye exam and assessing vision is something of a long game, with each attempt allowing us a fuller understanding of what and how they see. At Special Eyes, we are privileged to make this journey with you.
An important thank you to parents / carers
There is so much more hidden behind successful outcomes than what we have detailed here. When our patients experience success in accessing an eye health check it is because those supporting them have invested significant time in preparing them, and this absolutely needs to be acknowledged. Caring for someone who has complex disabilities can be something of an invisible task, so we will finish up by acknowledging the substantial contribution made by familes and/or support teams. We provide the resources and the right environment, but our role is only one small part of what leads us to a successful outcome. It truly is a team effort.
Want to learn more?
If you would like to find out more about our service or book in, you can contact us via phone, or email. Our reception is staffed 10am -2.30pm Mondays and Thursdays and we would love to discuss how we can support you, and make eye healthcare accessible for you / someone you care for.