Self-advocacy supports assistive technology (AT) choice and control

At its core self-advocacy is about individuals making choices about themselves, for themselves, and having those choices listened to. This can lead to greater independence, as well as accepting the risk of making mistakes and taking responsibility for the result of their decisions.  

Studies have also shown that self-advocacy can positively impact individuals’ perception of themselves, their confidence and leadership skills, as well as that of their communities and supports.

• Everyday situations may require self-advocacy skills.
• It’s very important to have AT that is right for you, for some individuals not using AT or not using the correct AT could put them in danger.
• Not having the correct AT can also mean that you miss out on activities that you enjoy.
• You are the expert on your own body and brain, so you are the best person to speak out about what you need and want from AT.

A lack of knowledge may be a barrier, for example, if you don’t know: 

• What you need.  
• Whether a solution exists.  
• Where to start looking.

Self-advocacy might be difficult due to concerns about the opinions of others, for example: 

• Medical and allied health professionals, family members and friends might discourage you from making decisions about your AT from a belief that they know your needs better than you do. 
• You don’t want to be a bother or make a fuss. 
• You’re concerned about social stigma, and that using AT might make your disability more obvious.  
• You might not feel that you’re in the right headspace, or not ready. 
• You might be concerned about cost, whether you can afford the AT or whether it will be funded. 

Confidence may be a barrier for some people, especially if: 

• Information is hard to find or hard to understand. 
• You’re not comfortable speaking up for yourself.  
• You don’t have skills and practice in being assertive. 

You might feel that you need assistance, for example: 

• To gather information. 
• To make good choices. 
• To complete paperwork or forms.

References:

Ryan, T., Griffiths, S. (2015). Self-advocacy and its impacts for adults with developmental disabilities.  Australian Journal of Adult Learning, 55 (1), 31-53. Retrieved from: https://files.eric.ed.gov/fulltext/EJ1059141.pdf

An example of the difficulties faced by assistive technology (AT) users when accessing (AT) while living in regional or remote areas and some solutions, comes from Nerine Williams. 

“Living in rural and remote Australia has many benefits but it can be challenging to access Assistive Technology and there is limited to no access to AT professionals for advice. So how does someone who is living in Port Hedland access AT providers to trial equipment?

I needed a rollator that was lightweight and compact, with a seat, and that looked the opposite of medical – something sleek and fun! 

I was so determined to get it right that I started approaching strangers with rollators in the street. I’d ask them what they liked and disliked, and if they loved their rollator, and asked for details of its brand and model. 

My husband and I researched online, reading articles and user reviews, watching manufacturer and user videos, and looking at retailer’s websites, all the while keeping in mind my list of needs – safety, height adjustable, compact when folded, and a comfortable seat.  From this, we came up with a top 3 list and the contact details of retailers that sold the rollators.   

An upcoming family holiday to Perth was a great opportunity to acquire my new rollator, so after booking flights, we also booked a hire car ensuring it had boot space large enough for our luggage and a rollator.  As I didn’t have an Occupational Therapist to talk to in Port Hedland, we also made an appointment to meet an OT at Indigo (formerly Independent Living Centre)

A week before flying, I called the retailers on my list to find out who had all my preferred rollators in stock, so I could trial and compare them all in one place.

Arriving in Perth, we went straight from the airport to Indigo. Although we went to talk about rollators, we also checked out walking sticks, mobility scooters, and powered wheelchairs.  We came away with buzzing brains and an email with a list of answers for my immediate AT challenges as well as potential future solutions, which has helped inform our AT decisions over the next four years, including the purchase of my powerchair last year. 

Heading to the retailer, we looked at our Top 3 rollators and several others we had not previously considered: asking questions about reliability and ease of repair and comparing height, footprint, and comfort. Before we knew it, it was time for the store to close, so over dinner, we compared what we had liked about each of the rollators we had seen in terms of my needs and looked at reviews for the rollators we had seen that had not been on the original list.   

The next morning, we went back to the retailer and bought the rollator that had been my original first choice: it was the most transportable in its collapsed form, was the easiest for me to collapse when travelling by myself and although it only came in black, still looked sleek. 

The retailer was great and disposed of my old rollator, leaving me to give my new rollator a decent trial during the remaining four days of our holiday before heading home.” 

1. Identify the problem or issue you are having, and consider what you want to change – if you could find the perfect solution, what would that enable you to do? Be specific in what you want to achieve and break down your needs into must-haves and nice-to-haves.
2. Learn and speak with other people with similar challenges and find out what AT they use and what they like/dislike about their AT.
3. Research what options are available, for example using supplier’s websites, independent user reviews and checking in with your peers or an AT Mentor.
4. Seek professional advice on available options from an allied health professional, such as an Occupational Therapist or Physiotherapist.
5. Trial the AT before you buy. Try to find one or two suppliers that stock all the options you are comparing, then arrange a time to check them out in person or coordinate a virtual video call if you can’t visit in person.
6. Make initial communication your way. You could email the AT supplier with what you are looking for before going in person. This way they are clear on what you want and can be prepared before you get there.
7. Don’t rush. Think about your choices overnight if your schedule allows it and find out if you can trial the item for a couple of days. In case of enthusiastic salespeople, it may be helpful to have a statement prepared to thank them for their help, reiterating that you need more time to consider and confirming when you will be in touch once you’ve decided.
8. Compare AT solutions. Write a list with each of your options as a column heading, then fill in the rows with things you like and dislike, cost, and any other factors that are important to you (e.g., the weight of the AT, availability, warranty, and repairability).
9. Get Support from others. Ask a friend, family member, or an AT Mentor to help you look at the pros and cons objectively, or to help you practice what you might say until you feel comfortable.
10. Be clear. Explain how you feel and why it is important. It’s good to use “I” statements when talking about how something impacts you, for example: ‘I feel this won’t meet my needs.

*This resource was co-designed with Nerine Williams and can be used as a stand-alone resource or in conjunction with the resources below.

This is the tool developed by Nerine and used to help her choose her rollator:

• Word document: Comparing assistive technology (AT) - A tool to assist with self-advocacy and AT decision making
• PDF: Comparing assistive technology (AT) - A tool to assist with self-advocacy and AT decision making

Download the blank template of this tool here:

• Word document: Comparing assistive technology (AT) - A tool to assist with self-advocacy and AT decision making
• PDF: Comparing assistive technology (AT) - A tool to assist with self-advocacy and AT dec