Thursday, October 1, 2015

Eye Care's Missing Manuals

The parents of a child diagnosed with a potentially blinding eye disease attended a low vision support group and asked the participants what they should do to help their child succeed in life.  My immediate response was for these parents to make sure that their child would be computer literate and be able to use any adaptive products such as screen-reading software if they were needed.  I would now add that teaching children to read and write using Braille is just as important as teaching them technology skills.

The most valuable and most overlooked books for people diagnosed with potentially blinding eye diseases of all ages and their caregivers have the word, “Braille,” in the title such as Braille Literacy:  A Functional Approach, Foundations of Braille Literacy, and Instructional Strategies for Braille Literacy.  You learn from such books that Braille literacy is a skill that should be learned as soon as possible by anyone who is diagnosed with an eye disease that might threaten or has already begun the loss of central vision such as glaucoma, cataracts, and macular degeneration.  While it is important not to overreact to the diagnosis of potentially blinding eye diseases, it is just as important to start merging skills such as labeling, note taking, and reading in Braille with other tools that are used daily.

My concern at this time is for the senior citizens, some with moderate hearing loss as well as the diagnosis of an eye disease that threatens central vision.  Unlike children who are diagnosed before the age of 18, senior citizens do not have access to rehabilitation counselors, special education teachers, and occupational therapists at this time.  These professionals need to be part of the eye care team.  In some places, generally in areas near university medical and research centers, there are specially trained social workers and occupational therapists who work with geriatric and pediatric patients.  No services of this kind are available for patients living with potentially blinding diseases and vision loss other than low vision optometrists who specialize in using remaining vision with the help of large print and high power magnification.

Adaptive technology and Braille literacy need to become part of low vision specialist training.  I came to this conclusion while sitting in a low vision specialist’s waiting room on several occasions and seeing patients walking away from an appointment only to be asked by a family member or friend, “Is there anything else they can do?“ and hearing the answer, “No.”  I wanted to scream out, “Yes, there is!  Computers with screen-readers!  Braille!  Services from the National Library for the Blind and Physically Handicapped!”  There are so many people, especially senior citizens, who will never get this information from eye care, primary care, or geriatric professionals.
The books on Braille literacy are available in audio format through Learning Ally.  They answer the questions, “How do I learn Braille?” and “How do I merge Braille learning and literacy into a busy life?”  I searched for answers after trying to learn Braille during five hours of trading at a residential school for the blind, from a distance learning program, and from a private tutor who is a Braille user but who learned as a child.  What was missing from all three approaches was phonics (sounding out letters).  Braille, as people tried to teach it to me, required learning the names of letters and then jumping right into reading and writing words.  I just could not do it.  I started wondering if I had a learning disability.  Then I remembered how I was taught to read when I was a child.  Now I am teaching myself the names and sounds of the letters before and as I learn to use Braille.

It is estimated that only 30% of people who are blind or vision impaired are employed.  All of the people I know in the group who are employed are proficient Braille users with moderate to high technology skills.  All of them learned these skills as children.  With access to the books and tools that were used to train my friends, many more people will be able to love what they have left while living with low vision.

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