Vision Loss and Assistive Technology
“To be blind is not miserable; not to be able to bear blindness, that is miserable.”
John Milton 1608 -1674[1]
For centuries we have understood the enormous ramifications of losing one’s sight. With a population that is rapidly aging, many more people nowhave to confront that reality as age-related eye conditions such as macular degeneration become more prevalent.
Despite the many terms we use such as Low Vision, partially sighted, vision impaired, blind and legally blind, most individuals who lose their useful vision experience similar emotions. There is the loss of all that is familiar, and the need to find new ways of doing lifelong tasks such as reading and writing, accessing information, and moving around the environment. There is a sense of loss, often leading to depression. There is frustration as routine tasks take longer, or can only be performed with sighted assistance. It can be a very challenging and traumatic time.
However a person loses their visionthere is one overriding experience that is common to all; and that is to be confronted with all those things they can no longer do. They can’t drive, do craftwork, read their books and a host of daily living activities that impact every aspect of their lives.
Some people argue that to lose your vision later in life is harder than being born blind, as your understanding of the world is formed without vision. For people who are born blind, or lose their sight as very young children it is often the lack of external expectations that is their biggest barrier.
As Milton alluded to over 400 years ago, the critical issue in learning to livewithout useful vision is how you personally adapt and learn to “bear” blindness.
Today we have a wide range of vision rehabilitation services and assistive technologies (AT) to help people adapt and cope to the loss of vision. The term assistive technology covers a very wide range of devices, both software and hardware that have been designed or adapted to assist people with a disability. The enormous growth in assistive technology options has not always been matched with professional development for eye-care practitioners; many have only a basic understanding gained during their graduate studies.
The Role of the Primary Eye-Care Practitioner
As primary medical providers, ophthalmologists and optometrists can play a pivotal role in the continuing care of their patients by referring them to appropriate professional services for both vision rehabilitation and assistive technology.
Research has shown us that when assistive technology devices are introduced at an early stage in the impairment process there is a measurable decrease in the overall level of impairment; a result of enhanced skills of independence[2]. However, in Australia a lack of available funding options often means that the recommendation for assistive technology is often left till later, when reduced vision can make it much harder to become a proficient user of assistive technology.
It is still not uncommon to hear from individuals experiencing vision loss, or from their family members, that their ophthalmologist advised that “there was nothing else could be done”, which can be devastating news. What the ophthalmologist meant is that there is no further medical intervention that will restore their vision but that message is often lost on someone still in a state of shock or with many other questions to which they don’t have answers. There definitely is much that can be done.
Dr Mary Lou Jackson, Director of Vision Rehabilitation Services at the Massachusetts Eye and Ear Infirmary in the US has organised a Low Vision Rehabilitation special interest group within the American Academy of Ophthalmology. This group is encouraging their colleagues to emphasise the benefits that can be achieved through low vision rehabilitation and technology while downplaying the fact there are no further medicaloptions of benefit to their patients[3].
It is important for that message to be emphasised here in Australia and for eye-care practitioners to be aware of the services available to their patients once the medical options have been exhausted.
Assistive Technology Options for Vision Loss.
It is beyond the scope of this article to give a comprehensive account of the range of assistive technology options available. Here is a very quick summary;
Optical Magnifiers
Hand held, stand mounted, hands free, monoculars and binoculars.
Electronic Magnifiers
Pocket sized, hand held, distance and/or near viewing, desk top, PC connectable
Text to Speech
A range of devices that convert printed information into legible speech in seconds.
Solutions for the PC
Magnification, speech output, highlighted text with speech, simplified user-interfaces for seniors, touch tablets (iPadsetc)
e-Readers
Software and hardware DAISY players
Alternate format options
A variety of hardware and software options for converting regular text into large print, audio, DAISY and other electronic formats.
Voice recorders
A variety of recorders/players for digital files.
Electronic Braille
Electronic or refreshable braille options provide instant access to electronic information
Tactile Graphics
Converting pictures, images and graphs into tactile formats, often combined with large print and/or braille.
Choosing the Right Tool
The first step in matching a person with vision loss to an appropriate AT product is awareness. Information on where assistance is available and the variety of forms it may take is vital. Some practitioners facilitate this through the placement of appropriate information in waiting rooms and as part of information packs that are given to patients.
It is also important that patients are able to experience AT tools in “real-life” and meaningful ways[4]. This is especially so for electronic solutions that may be expensive, where trialling in the home environment using everyday materials and situations is essential.
Above all it is most important that each person receives an evaluation of their needs, either as part of a full Low Vision assessment at a Low Vision clinic, or through vendors and Low Vision consultants that offer assessment services. This evaluation needs to encompass considerations of the domestic situation, reading and writing needs, mobility and travel needs, cognitive and physical abilities as well as financial considerations.
Ideally these assessment services will provide feedback to the primary eye-care practitioner to enable them to monitor the patients progress as part of their on-going care.
The Toolbox
It is very unlikely that a single AT product is going to provide everything that a person with vision loss is going to need. An important concept that needs to be promoted is that each person is likely to need a variety of tools to compensate for vision loss. This idea of a “toolbox” of devices is typified by a user that may have;
- an optical magnifier in their bag or coat pocket to have when they are out and about
- a monocular for distance viewing when outside and using public transport.
- a large screen electronic magnifier for extended reading or looking at very fine print or small objects, or doing craft work
- a screen reader/magnifier for their computer
- a book reader for listening to digital audio books (DAISY)
Funding
This remains a real barrier for many people however there have been recent positive developments. Some health insurance funds now provide limited rebates on optical and electronic magnification devices. This source of financial support is likely to increase over time as the health insurance industry understands the importance of helping people to continue living independently in their own homes. Clients of the Department of Veteran Affairs with a gold card status are supported for most AT solutions. Families and community support groups also regularly purchase AT options for people that could not otherwise afford them.
Conclusion
Australia has one of the lowest uptake of AT devices for vision loss in the developed world. When compared to other conditions common to ageing, such as hearing impairment and loss of mobility, there are many Australians with vision loss who don’t receive appropriate intervention or the AT tools that would enable them to continue living fulfilling, independent lives.
Primary eye-care practitioners have a vital role to play in changing that situation.
About the author: Tim Connell is the founder and Managing Director of Quantum: Reading Learning Vision. Since 1986, Quantum RLV has supplied assistive technology solutions to people with a print disability in Australia (low vision, blindness, dyslexia).
Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in, therein to be content."
HelenKeller
[1]English poet John Milton who was blind in his latter years.
[2] “Use of assistive devices in daily living among 85 year olds living at home, focussing especially on the visually impaired” Journal of Occupational Therapy and Physiotherapy 2004 Vol 26
[3] Encouraging Low Vision Rehabilitation in Ophthalmology; AFB Connections Fall 2008
[4] Competitive Enablement: A Consumer-Oriented Approach to Device Selection in Vision Reghabilitiion. Age, Disability and Independence. W.C Mann (Ed). Grant et al. 2008.