Serving the visual needs of persons with intellectual disabilities

On this World Optometry Day 2021, I want to call out the importance of ensuring that all people have access to quality eye care.  I have spent the last 25 years of my professional life focusing on the visual needs of persons with intellectual disabilities (ID). My work with the Special Olympics Lions Clubs International Opening Eyes Vision program grew from my friendship with Dr. Paul Berman (volunteer, American Optometric Association).  It was his plea to advocate for a population that is visually underserved, has documented higher prevalence of vision and eye health problems, typically does not have the same access to spectacles as those without ID and rarely advocate for themselves.  It was felt that many eye care providers didn’t feel comfortable working with people with ID since the exam was more challenging and time-consuming.

The Opening Eyes program

Optometrists, in response to Paul’s voice, worked to improve access to eye care for a population known to be at high risk for vision issues.  The Opening Eyes program was launched in 1995 by a group of academic and practicing optometrists (US).  Our thought was to elevate the conversation about the need to increase access to eye care by optometrists who were perfectly suited to assess, diagnose, treat and, when appropriate, refer for secondary or tertiary care.  The added aspect of the Opening Eyes program was to educate Special Olympics athletes, their families, their coaches and the health ministers about the importance of vision care and demonstrate that with appropriate vision interventions, the athletes can experience a higher quality of life, improve sports performance, do better academically, and become more independent as adults.  Over the past 50 years, we have seen life expectancy of people with ID increase to within 16 years of the general population. The causes of visual impairment and blindness found in people with ID reflect the same problems seen with getting older. It is important to move adults into practices that address adult problems.  Eye care providers need to understand the problems of this vulnerable population, be able to communicate effectively, have the knowledge and tools to deliver high quality eye care and ensure that the appropriate treatment is delivered in a compassionate manner.

Optometry opened the door in 1995 with a programme to assess the vision of people with ID. By 1999, eye care providers that covered a quarter of the world’s population were engaged in the Opening Eyes program This expansion meant that all types of eye care providers were now collaborating to deliver quality eyecare.  The engagement of these providers who have donated time and expertise helped to expand the message of the importance providing eye care to people with ID but there is a long way to go.  We need to ensure that all academic programmes prepare their clinicians to serve the visual needs of all patients in their practices, including people with ID, ensuring that they receive high quality, equitable, and affordable care.