Characteristics of Low-Vision Rehabilitation Services in the United States

Characteristics of Low Vision Rehabilitation Services in the UnitedStates

Cynthia Owsley, MSPH, PhD1, Gerald McGwin Jr., MS, PhD1,2,3, Paul P. Lee, MD, JD4, NicoleWasserman, MPH1, and Karen Searcey, MSPH1 Department of Ophthalmology, School of Medicine, University of Alabama at Birmingham,Birmingham, AL2 Department of Epidemiology, School of Public Health, University of Alabama at Birmingham,Birmingham, AL3 Department of Surgery, School of Medicine, University of Alabama at Birmingham, Birmingham,AL4 Duke University Eye Center, Durham, NC

AbstractObjective—To describe characteristics of services, providers and patients in low visionrehabilitation entities serving adults in the United States.

Methods—Entities (excluding VA clinics) were identified through professional associations, websearches, and a telephone survey to retina practices. A census obtained information on entity types,provider types, rehabilitation services available, and clientele. Surveys were administered bytelephone, fax, email, or mail, whichever preferred by the respondent.

Results—1,228 low vision rehabilitation service entities were identified with 608 surveyed (50%response rate). Almost half were private optometry practices (42.7%). State agencies had the highestnumber of clients/week (45) whereas private optometry practices have the lowest (4). Most (≥88%)established rehabilitation goals, fit optical aids with basic training, and conducted eye examinations.Training in scanning, eccentric viewing, and orientation mobility and advanced device training wereless commonly offered (25%–50% of entities). Central vision impairment was the most common(74.1%) deficit, with AMD the most common etiology (67.1%). Approximately 86% of clients haveproblems reading and 50% driving; 45% have adjustment disorders. Almost one in three clients is ≥80 years old.

Conclusions—This census for the first time characterizes usual-care low vision rehabilitationservices in the U.S. for non-veteran adults.

A pressing public health challenge for the United States is the large number of persons witheye conditions for which there are no or only minimally effective treatment options forreversing vision impairment. Although there is no universally accepted definition of the term“low vision”, an often-used definition is visual acuity worse than 20/60 with best refractionand/or field loss of less than 10 degrees from fixation.1 Estimates suggest approximately 1.5to 2 million Americans have low vision by this definition.2 However, these estimates are subjectto debate with estimates ranging from several hundred thousand to 13 million, largelydepending on the methodological characteristics of studies providing these estimates.3–7

Corresponding author and address for reprint requests: Cynthia Owsley, Department of Ophthalmology, University of Alabama atBirmingham, 700 S. 18th Street, Suite 609, Birmingham AL 35294-0009; phone (205) 325-8635; fax (205) 325-8692; emailowsley@uab.edu.

NIH Public AccessAuthor ManuscriptArch Ophthalmol. Author manuscript; available in PMC 2010 May 1.

Published in final edited form as:Arch Ophthalmol. 2009 May ; 127(5): 681–689. doi:10.1001/archophthalmol.2009.55.

-PA Author Manuscript

Vision impairment is among the top 10 causes of disability in the United States.8 In additionto causing difficulty in performing everyday activities, vision impairment is associated withloss of personal independence, depression, transportation challenges, difficulty in maintainingemployment, placement in long-term-care, and increased mortality risk.9–12

Rehabilitation is the primary treatment option for persons with low vision. Low visionrehabilitation can encompass many types of services including but not limited to an eyeexamination with assessment of visual function, prescription and training in the use of opticalaids and other devices, training in adaptive skills for performing everyday activities,psychological services, and vocational counseling and training.13,14 Given the wide diversityof services, there is a broad range of professionals involved in their delivery, includingophthalmologists, optometrists, psychologists, social workers, and many types of rehabilitationspecialists (e.g., vision rehabilitation teachers, occupational therapists, certified low visionspecialists, orientation and mobility specialists, vocational rehabilitation specialists).

Unfortunately, there is little sound scientific evidence on the effectiveness of low visionrehabilitation service models that could be used to guide decisions about how to enhance thelikelihood of positive outcomes.15,16 Clinical trials have been rare and those that do exist havefocused either on service models available to veterans through the U.S. Department of VeteransAffairs,17 or have evaluated delivery approaches used by other countries.18 No clinical trialhas focused on the effectiveness of service models available to adults living in the United Stateswho are not eligible for veteran’s healthcare. Before such a trial can be designed, a clearunderstanding is needed about what services are available in the U.S. While the literaturecontains descriptions of the general types of services available19,20 and accounts of specificprograms21,22 in the U.S., there has yet to be a comprehensive characterization of what servicesare actually available throughout the country.

Here we describe the results of a census of clinics and agencies in the United States providinglow vision rehabilitation services to adults (outside of the Department of Veterans Affairshealth system). These entities were surveyed with respect to characteristics of the services, theproviders, the clientele served, and their geographic distribution.

METHODThis study was approved by the Institutional Review Board of the University of Alabama atBirmingham. The population of low vision rehabilitation service entities to be surveyed wasidentified in several ways: (1) web sites of service organizations listing resources in the U.S.for persons with low vision (American Foundation for the Blind, Lighthouse International, theLow Vision Gateway); (2) American Academy of Ophthalmology web site listing ofophthalmologists specializing in low vision rehabilitation; the Vision RehabilitationCommittee of the Academy also sent us a list of physicians specializing in low vision; (3)American Academy of Optometry web site listing of diplomates in low vision; the Academyalso provided a list of optometrists with affiliation with the low vision section; (4) AmericanOccupational Therapy Association provided a list of members indicating vision impairment asa practice specialty; (5) the Association for the Education and Rehabilitation of the Blind andVisually Impaired provided a list of members in the following divisions: low vision, orientationand mobility, rehabilitation teaching, employment services, psychosocial services, andbusiness enterprise program; (6) ophthalmology practices specializing in retina in the UnitedStates (identified through the American Academy of Ophthalmology web site) were surveyedand asked where they refer visually impaired patients for visual rehabilitation services; (7) aGoogle search for entities providing low vision rehabilitation services using key words “lowvision”, “low vision rehabilitation” and “visual rehabilitation”. Since the unit of observationfor this census was the entity, not the individual provider within an entity, duplicate listings

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defined as those having the same address were removed. For example, an optometrist and anoccupational therapist could each have been identified through the process described aboveyet they work at the same service entity.

A survey was developed to address several domains of interest including the type of serviceentity (e.g., private practice, state agency), types of providers offering low vision rehabilitationservices at the entity (e.g., ophthalmologists, optometrist, various types of vision rehabilitationspecialists), types of services provided at that service entity, characteristics of clients, andoperational issues (e.g., hours of operation, clients seen per week). The survey was pilot testedon 10 low vision rehabilitation service entities, and feedback was used to enhance clarity ofitems and response options. The survey is available at www.eyes.uab.edu/tools.

Telephone administration of the survey began in January 2007 but after six months it wasrecognized this approach provided a low yield. The survey was then mailed to all remainingpotential respondents who were given the option of returning the completed survey by regularmail (a pre-stamped self-addressed envelope was enclosed), fax, requesting an electronic copyof the survey by email and then returning the completed survey via email, or requesting thatthe survey be conducted via telephone. If a survey recipient did not respond, a repeat mailingone month after the original mailing was done, and then repeated again if there was still noresponse. Completed surveys were accepted until December 31, 2007.

Descriptive statistics (e.g., means, proportions) were used to characterize low visionrehabilitation service entities with respect to services provided, service providers, clienteleserved, as well as the geographic distribution of these clinics and agencies. For clientcharacteristics (e.g., demographics, types of vision impairment, etiology of vision impairment)descriptive statistics were weighted by the number of self-reported clients.

RESULTSThe census enumerated a total of 1,504 entities in the United States. After attempting to contacteach entity, it was determined that 28 had disconnected or wrong telephone numbers with noforwarding number available, and 248 indicated they did not currently provide low visionrehabilitation services. Of the remaining entities (1,228), 608 completed the survey yielding aresponse rate of approximately 50%. The person who completed the survey on behalf of theservice entity was most commonly an optometrist or ophthalmologist (76.8%), with the balancebeing various types of vision rehabilitation professionals or administrative personnel. Eighty-eight of those entities contacted declined participation and 532 provided no response. Basedon the names of these entities, we determined that of those who declined or provided noresponse 59% were private optometry and 13% private ophthalmology practices, with the restfor the most part being independent services for the visually impaired and state agencies.

Table 1 indicates that almost half of entities surveyed were private optometry practices(42.7%), with the next most common types being private ophthalmology practices (17.4%)and independent agencies for the visually impaired (11.2%). University-based ophthalmologyand university-based optometric services were about equally represented (3.5% and 2.9%respectively). Government agencies (the vast majority were state agencies) represented 7.5%of respondents. Although general hospitals and rehabilitation hospitals/outpatient centers wererepresented, they each represented less than 3% of all entities. Twenty percent of all serviceentities surveyed said they had an academic affiliation.

Also provided in Table 1 are the characteristics of services offered when the entities areconsidered altogether and when they are stratified by entity type. Nearly all entities hadprocedures for establishing the client’s rehabilitation needs and goals (96.5%), offered opticalaid fitting and dispensing and basic training in their use (92.0%), and provided ocular

examination with visual functional evaluation (87.7%). Two entity types less likely to provideocular and visual function examination are government agencies and independent services forthe visually impaired (53.1% and 61.6% respectively). Other types of services were not asuniversally offered among entities as those just mentioned. Overall, about half offeredintensive/advanced training in optical aid use (45.6%) and training in eccentric fixation orpreferred retinal loci (51.4%). Those entities most likely to provide these services wererehabilitation and general hospitals and outpatient rehabilitation centers; the least like toprovide these services were private optometry and ophthalmology practices. About one-thirdto one-fourth of entities offered home visits, orientation and mobility instruction, support groupprograms, psychological counseling, and social work services. Those entities most likely toprovide these services were rehabilitation hospitals, outpatient rehabilitation centers,independent services for the visually impaired and government agencies; the least likely wereprivate optometry and ophthalmology practices. When all entities are considered together, theyrarely offered driving rehabilitation (11.4%), computer/accessible technology training (3.7%),and employment counseling (1.8%). Approximately 90% (89.6%) of entities report that if aclient is deemed in need of services not offered at their own entity, they refer the client toexternal entities.

Table 2 provides information on the percentage of entities that have at least one staff memberin each professional category listed, working full-time or part-time. Almost 80% of entities(79.6%) have an optometrist and 18.8% have an ophthalmologist providing low visionrehabilitation care. Rehabilitation teachers and orientation and mobility instructors areemployed at approximately 20% of service entities (22.7% and 20.4% respectively), andoccupational therapists at 15.1%. With low representation are psychologists (4.9%) andvocational/employment counselors (5.8%). Occupational therapists are not very common whenentities are considered as a whole (15.1%), however they are relatively frequent providers atrehabilitation hospitals (70%), outpatient rehabilitation centers (70.6%), general hospitals(47.1%), and university ophthalmology practices (47.8%). Rehabilitation teachers are oftenproviders at independent services for the visually impaired (69.9%) and government agencies(67.4%) and infrequently providers at private optometry (7.5%) and ophthalmology practices(9.6%) and university ophthalmology practices (8.7%). Vocational or employment counselorsare relatively rare at all types of entities except for government agencies (51%). Psychologistsare relatively infrequent at all types of entities except for rehabilitation hospitals (30%).

Only one low vision rehabilitation professional is on staff (“solo” provider) in 40.1% of entities(Table 3). Approximately half of private optometry and ophthalmology practices are soloproviders, whereas the other types of entities are much more likely to have a team of providers(≥ 2 low vision rehabilitation providers working in a single entity). For those entities havingmore than one professional on staff, in 59% of these entities the professionals meet as a teamto discuss management and care of most clients. The professional with whom clients are mostlikely to have their first interaction at entities is an optometrist.

On average, service entities were open for client services 4 days/week. Services were providedfive days/week in 65% of entities surveyed; at 11.6% of service entities, services were providedonly 1 day/week. When an appointment is requested, the majority of service entities (71%) canschedule a client within two weeks of the call, and 92% within four weeks. The majority ofclients (76.6%) are seen within 15 minutes of arrival. Figure 1 shows how average client volumeper week varies with service entity type. Government agencies see the largest number of clientsper week (45 clients/week), which is approximately twice as many as the next highest volumeservice entities (i.e., independent services for the visually impaired, outpatient rehabilitationcenters, university-based optometry practices). University-based ophthalmology practices,rehabilitation and general hospitals and other entities see approximately a dozen clients per

week. Private ophthalmology and optometry practices see the fewest number of clients perweek (5.4 and 4.1 clients/week respectively).

Based upon the client volume per week for each service entity category and the percentage ofeach entity type surveyed, we estimated the proportion of clients receiving low vision servicesas a function of service entity type (Figure 2). Approximately half of those receiving low visionservices do so at government (state) agencies (28.4%) or independent services for the visuallyimpaired (22.7%); the next largest provider type are private optometry practices (14.7%)followed by other provider types (8.4%) and private ophthalmology practices (7.9%). Theremaining entities provide services to less than 5% of low vision clients seeking them.

When entities are considered together, the majority of clients are ≥ 60 years old (69.6%) andover one-quarter are ≥80 years old (28.7%) (Table 4). The largest racial/ethnicity group iswhites (67.5%) followed by 17.9% African Americans and 9.1% Hispanics. Clients are morelikely to be women (60.4%) than men. About two-thirds of clients have Medicare (66.5%) ashealth insurance/third party coverage. Although rare, a few service entities (7 of 508 serviceentities responding to this item) indicated that they provide all services free of charge so healthinsurance status was irrelevant and thus they did not ask about it. Ophthalmologists are theprimary referral sources for all types of entities with almost half of clients referred by them.The vast majority (87.2%) of entities reported that clients always or most of the time come totheir appointments accompanied by family or friends. Services at 38.9% of entities could beprovided in a language other than English.

The most common type of vision impairment in clientele of the entities surveyed is centralvision impairment (overall all entities, 74.1%) (Table 5). On average 67.1% of clients seenhave a diagnosis of age-related macular degeneration (AMD). While the other chronic eyeconditions of aging are represented, they are much less common than is AMD. Of the problemsthe clients have when they seek rehabilitation, reading difficulties are most common (85.9%),and difficulties in writing, driving, and other near and distance tasks are also encountered byover half of clients. Nearly half of clients (44.9%) are characterized as having problems withemotional or psychological adjustment. These findings are for the most part reflected bypercentages for specific types of service entities.

Figure 2 presents the density of service entities per 1,000,000 population for each state. Itshould be noted that the data in Figure 2 is not limited to those service entities that participatedin the survey; rather, it represents all identified service entities excluding those that indicatedthey no longer provide low vision rehabilitation services. There is a high density of serviceentities in the plains and mountain states as well as in New England; the density of serviceentities is low across southeastern and southwestern states.

DISCUSSIONHere we report the results of the first census of entities providing low vision rehabilitationservices in the U.S. (outside of services available through the Veterans Administration) withrespect to characteristics of services, providers, clientele served, and geographic distribution.The 50% response rate is comparable to or higher than previous surveys where eye careproviders were respondents.23–28

Almost half of service entities providing low vision rehabilitation services in the U.S. areprivate optometry practices (42.7%). Although they are the most common type of serviceentities, private optometry practices have the lowest client volume, averaging about 4/weekcompared to other types of entities. Earlier work suggests this stems from many of thesepractices providing low vision rehabilitation on a part-time basis only, rather than beingpractices solely or mostly dedicated to rehabilitative care.26,28 The services provided at these

practices mostly consist of ocular examination and visual function evaluation combined withoptical aid fitting and basic training in aid use, and rarely include orientation and mobilitytraining, psychological and social work services, driving rehabilitation, and home visits. Thetypes of services provided by private ophthalmology practices are very similar to those ofprivate optometry practices, although private ophthalmology practices represent a lowerpercentage of the service entities in the U.S. providing low vision rehabilitation (17.4%), ascompared to private optometry practices. However, ophthalmologists as a group make abouthalf the referrals to low vision rehabilitation, more than any other service provider includingoptometrists who make about 11% of the referrals.

In contrast to private optometry and ophthalmology practices, non-federal governmentagencies (e.g., state services for the visually impaired) are less common (7.5%) among entitytypes in the U.S. Yet they have the highest patient volume of all entity types, providing carefor on average 45 clients with low vision per week. A high percentage of government agenciesprovide orientation and mobility training, psychological or support group services and homevisits, as compared to other types of service entities. The most comprehensive array of servicesfor persons with low vision are offered at rehabilitation hospitals, outpatient rehabilitationcenters, and independent services for the visually impairment. These types of service entities,in addition to offering the basic services of ocular examination and optical aid fitting andintroductory training, very frequently offer advanced forms of visual rehabilitation such asintensive training in device use, orientation and mobility training, scanning training,psychological services and support groups, and home visit programs. It is interesting thatalthough rehabilitation hospitals and outpatient rehabilitation centers offer an impressive menuof low vision rehabilitation services to visually impaired clients, they are rather uncommon inthe U.S., each representing less than 5% of service entities providing low vision rehabilitationservices.

Our results suggest that the core or “basic” services offered by almost all entities, regardlessof type, consist of identifying rehabilitation needs, conducting an ocular and visual functionevaluation, and fitting, dispensing, and providing introductory training for optical aids. Lesscommonplace, although provided by about one-third to one-half of entities, are intensivetraining in device use, scanning training, home visits, orientation and mobility training, andsupport groups. It is interesting that although respondents indicated that on average almost halfof clients had psychological or emotional adjustment problems, less than one-quarter of entitiesprovide psychological services and < 5% had psychologists on staff. This observation isconsistent with previous reports that even though adjustment disorders and depression arepervasive among visually impaired persons, entities often do not offer psychological servicesas part of a comprehensive set of services on site.29–31 This is in contrast to rehabilitationservice models for other types of disability (e.g., spinal cord injury, stroke, traumatic braininjury) where a psychologist is a key member of the on-site multidisciplinary care team.32,33

Driving rehabilitation is also poorly represented among services at entities, available at only11% of entities surveyed. Yet survey respondents indicated that driving difficulties are presentin about two-thirds of clients served by their agency or clinic. Driving is the primary mode ofpersonal transportation in the U.S. and lacking a license has negative personal consequencesfor health and well-being.34 Jurisdictions are increasingly allowing licensure for visuallyimpaired persons who do not meet the vision standard (e.g., 20/40) if they can demonstratesafe driving skills through an on-road evaluation by a driving rehabilitation specialist.

It is widely accepted that the goal of low vision rehabilitation is to assist patients in effectivelyusing their residual vision in order to facilitate their performance of visual tasks important toeveryday life, thereby enhancing quality of life. Vision rehabilitation professionals, such asrehabilitation teachers, occupational therapists, orientation and mobility specialists, low visiontherapists, and teachers of the visually impaired are the professionals who mainly work with

the visually impaired client to develop new performance strategies and to adapt familiar ones.Thus, it is interesting that about 63% of entities describing themselves as providing low visionrehabilitation services did not report having professionals in any of these categories as part oftheir on-site care teams. However, this does not necessarily mean that clients do not eventuallyreceive such services. About 90% of entities surveyed reported that they refer clients out forservices not provided at their own clinic or agency, although our survey cannot establish whattypes of services these precisely are.

Three-quarters of clients who are served by low vision rehabilitation entities in the U.S. mainlyhave central vision impairment, with the balance having peripheral vision problems orcombined central and peripheral vision problems. This result, and the result that two-thirds ofclients have AMD, is consistent with what is currently known about the epidemiology of eyedisease in adults in the U.S.35 Yet it is important to recognize that a non-trivial percentage ofclients – about 25% – have peripheral vision problems and thus the need for improvedrehabilitative strategies for this population cannot be ignored, especially given the importanceof peripheral vision for mobility9 and higher-order visual processing skills.36,37

We underscore the finding that almost 1 in 3 persons seeking low vision rehabilitation are ≥80 years old. These are individuals who, in addition to their vision impairment, are likely tohave other aging-related impairments (physical, cognitive) and medical comorbidities. Persons≥ 80 years old are at high-risk for depression, being caregivers, and having inadequate socialsupport. For all these reasons, the optimal rehabilitative care strategies for a person in their 80sare likely to be different, at least in part, than for adults in their 60s or younger. It remainsunknown to what extent existing low vision rehabilitation models of care are effective for the“oldest-old” in our population, who represent a very large segment of those seeking low visionrehabilitation services.

There was a distinct geographic pattern of service entities across the United States with a higherdensity of entities, on a population basis, in the mountain and plains states such as Montana,Wyoming, and Nebraska as well as in New England. Conversely across the southern UnitedStates from Georgia to Arizona and extending to California there was a lower density of serviceentities on a population basis. What explains this pattern is not entirely clear. One possibleexplanation is that those states with the highest density have more of their population in needof such services, namely older adults. However, when the rates were calculated accounting forstate-to-state differences in age distributions, the state rankings were largely unchanged.

A major strength of this study is that it provides the first national picture of the characteristicsof low vision rehabilitation services for adults in the U.S. not eligible for veterans’ health care.In order to identify the population to be surveyed, we carried out a very comprehensive searchusing multiple sources. Limitations must also be acknowledged. The survey response rate was50% even with the use of multiple strategies for administering the survey. At the same time itis important to emphasize that our response rate was comparable to or higher than the responserates for other well-designed surveys of eye care providers.23–28 The distribution of serviceentity types for non-responders was very similar to the distribution of those who responded,suggesting no obvious bias in the types of service entities completing the survey. This surveydid not delve into providers’ practices and patterns of referring clients to services external tothe entity; this topic is being addressed in a second survey currently under way.

To conclude, this census contributes to understanding characteristics of usual care in the U.S.for low vision rehabilitation services available to non-veteran adults. This information can beused to guide the design of clinical trials on the effectiveness of low vision rehabilitation foradults and to prompt closer scrutiny as to whether client needs are being adequately met bycurrent models of care delivery.

AcknowledgmentsThis research was funded by National Eye Institute grants R21-EY16801 and R21-EY14071, the EyeSight Foundationof Alabama, Research to Prevent Blindness Inc., and the Alfreda J. Schueler Trust.

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Figure 1.Self-reported weekly client volume according to entity type.

Figure 2.Proportion of low-vision clients receiving services according to entity type.

Figure 3.State specific density (entities per 1,000,000 population) of low vision entities.

Owsley et al. Page 13Ta

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Table 3Percent of entities where the provision of low vision rehabilitative care is by a sole provider (as opposed to a team ofproviders)

Entity Type N (%) Entity Type Solo provider

All Entity Types Combined 651 (100) 40.1

Rehabilitation hospital 10 10.0

General hospital 17 13.3

Outpatient rehabilitation center 17 0

Private ophthalmology practice 113 45.0

Private optometry practice 278 56.5

Univ.-based ophthalmology practice 23 21.7

Univ.-based optometry practice 19 10.5

Independent service for vis. impaired 73 14.9

Government agency (e.g., state agency) 49 10.9

Other1 52 20.4

1Includes non-profit organizations, retail stores, schools for the visually impaired, and multi-specialty healthcare practices.

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Characteristics of Low-Vision Rehabilitation Services in the United States

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