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Being Alive

HIV, Vision Loss, and Independence


Being Alive 1992 Apr 5: 12

Since 1978 the non-profit Center for the Partially Sighted has provided comprehensive rehabilitation services to thousands of partially sighted individuals of all ages. The technical definition of "partially sighted" is that one's best corrected visual acuity is no better than 20/70 in either eye, but better than mere perception of light. The Center provides the partially sighted person with the means to maximize the use of their remaining vision, enabling them to function as independently as possible. We have done this with a program consisting of flow vision optometric evaluations, visual aids training, independent living skills and mobility instruction, as well as psychological counseling and peer support.

PROGRAMS FOR PEOPLE WITH AIDS Two years ago, the staff of CPS developed a program to specifically address the needs of people with AIDS who where dealing with vision loss. Initially we called it the CMV Retinitis Program since CMV Retinitis has been and continues to be the leading cause of visual impairment in people with AIDS. We changed the name to the HIV and Vision Loss Program to include all clients who were experiencing changes in their vision whether from CMV, toxoplasmosis or meningitis. (Of course, our services are available to any partially sighted person with HIV whether or not the vision problem is AIDS-related.) Medical treatment of CMV and other sight reducing pathologies is provided by ophthalmologists. The Center, on the other hand, provides low vision optometric care where we measure a person's residual vision to determine how much of that remaining sight can be enhanced through prescription of low vision aids and training in their use. Most specialists in low vision care are optometrists; however, it is important for partially sighted people to continue to see their ophthalmologist to determine if their eye condition needs immediate or continuing medical attention. This is especially true for people with an AIDS diagnosis.

When a client comes to the Center, an optometrist selects the appropriate visual aids based upon a thorough evaluation of the client's remaining vision, as well as consideration of each individual's specific visual goals. For example reading, writing, seeing a computer screen or work-related activities may be most important for some people. For others it may be cooking, seeing medicine labels, writing checks or walking about unassisted.

COMPONENTS OF THE VISION LOSS PROGRAM The Center's HIV and Vision Loss Program has several components. Along with the optometric care we also offer individual psychological counseling at the Center. That service is provided by clinical psychologists who for many years have counseled clients experiencing vision loss. Counseling charges are based on income level and sessions are held at the Center in Santa Monica.

We have also set up Education and Support Groups for people with HIV who have vision problems or who have been diagnosed with an illness that potentially threatens their eyesight. These groups foster greater independence through fuller use of remaining sight as well as encouraging a greater sense of well-being and self esteem. The groups meet once a week for 5 to 8 weeks at a host agency. Group members have been referred from the host agency. The weekly sessions are two hours in length with the first hour dealing with the psychological and social aspects of vision loss and special areas of concern to group members such as relationships with family, lovers, friends or co-workers. Strategies to gain control over one's live, managing stress, coping with fear and anxiety are some of the topics discussed. The focus of the second hour of the group session has been education about various aspects of vision rehab. An ophthalmologist provides the latest findings in combatting CMV retinitis or meningitis and an orientation and mobility specialist presents techniques for greater mobility and safety. Low vision optometric aids, independent living skills, lighting and high contrast in the home environment, as well as legally blind benefits, are all covered in the second half of the sessions.

The feedback we have received about the groups has been very positive and we would like to expand our outreach to others who could benefit from such a program. One thing we have definitely learned in working with clients who have AIDS-related vision problems is the need for flexibility in service provision which leaves us open to ideas and suggestions as to how we might better serve those people in need of the services we offer. As the coordinator of the HIV and Vision Loss Program, I encouraged readers, case-managers, and any other interested parties to please call me at the Center to inquire about our program. We aren't tied into the structure of past groups and we're willing to rethink the format if it means greater access to people who need it.

We also arrange home visits to go over safety techniques, lighting evaluations, and mobility to assist a person with functioning as independently as possible within their own home. The groups and home visits are provided free of cost to the participants, although donations are appreciated. For the low vision optometric evaluations, fees are on a sliding scale based on ability to pay. Medi-Cal covers low vision services and the cost of some but not all visual aids. Medicare covers a portion of the vision evaluation. The bottom line is that no one is turned away for inability to pay.

(The Center for the Partially sighted is located at 720 Wilshire Blvd., Suite 200, Santa Monica. To make an appointment or inquire about services call 310.458.3501 and ask for Joey Terrill.)


Information in this article was accurate in April 5, 1992. The state of the art may have changed since the publication date. This material is designed to support, not replace, the relationship that exists between you and your doctor. Always discuss treatment options with a doctor who specializes in treating HIV.