Causes of Visual Impairment

People with visual impairment, including those considered “legally blind,”

experience a range of visual abilities and limitations. Many people have some usable vision, but they may be unable to distinguish faces or the lettering of signs or they may not have central or peripheral vision. Of the estimated 7.9 million adults having some visual impairment, 1.8 million report being unable to see (Steinmetz, 2006, SIPP estimate). The most frequent causes of vision impairment and blindness are diseases and conditions whose prevalence increases with age and are experienced by adults. These causes are diabetic retinopathy, age-related macular degeneration, cataracts, and glaucoma (CDC, 2004). For a small percentage of persons, visual impairment or blindness is traceable to genetic conditions such as retinitis pigmentosa or retinoblastoma. Injury also accounts for a small percentage of adult onset visual impairment or blindness. The association between aging and visual impairment indicates that the prevalence of visual impairment and blindness is likely to increase with the aging of the large baby boom cohort.

Low vision and blindness are uncommon among children, with most of the few cases occurring before birth or within the first month of life. Such conditions retinopathy of prematurity, albinism, hydrocephalus, congenital cytomegalovirus, and birth asphyxia are the most common causes of visual impairment in children below 10 (CDC, 2004).

Access to the Printed Word

Special services and legislation to ensure access to the printed word have existed since 1879 when federal legislation enabled the expansion of the activities of the American Printing House for the Blind to produce books for people who were blind (American Printing House for the Blind, 2004). Other federal legislation authorized sending Braille materials as “free matter for the blind,” to avoid the cost to libraries of mailing the heavier Braille and other materials. Federal law also established the Books for the Blind program, now National Library Service for the Blind and Physically Handicapped (NLSBPH), which provides Braille and recorded literary and music materials to anyone unable to read standard print because of a visual, learning, or physical disability (National Library Service, 2006).

With computer technology and the Internet now being major vehicles for the dissemination of information, ensuring access to words and graphics in electronic and online media has become important. Section 508 of the Rehabilitation Act requires that all federal government Web sites and related materials be accessible to persons with visual impairment. The access standards are set by the Access Board (Architectural and Transportation Barriers Compliance Board). While Section 508 does not apply to the private sector, it has spurred the development of voluntary guidelines for Web and other media access that many organizations have adopted (the World Wide Web Consortium developed guidelines described at http://www.w3.org/TR/WAI-WEBCONTENT/). There also has been litigation under the Americans with Disabilities Act, challenging organizations that use technologies that rely on screen instructions or touch screens, such as ATMs and cell phones, to assure access for people with visual impairment. This concern can apply to human service agencies as they implement new technology in providing information and other services to clients through Web sites or through electronic or video media.

Education and Rehabilitation

The Individuals with Disabilities Education Act (IDEA), originally PL 94-142, and the Rehabilitation Act of 1973 apply to all people with disabilities, including those with visual impairments. Under the Rehabilitation Act, states may develop a separate agency to provide services exclusively to persons classified as legally blind. Just over half the states have established a separate agency. Where there is no specialized agency, services for people who are legally blind are delivered through the broader state rehabilitation agency. Some states with separate agencies may restrict services to those who meet that state's definition of legal blindness, but others serve anyone with significant visual problems. Social work clients who need vision-related services should first be referred to a specialized agency; if services are not provided because the individual's vision does not meet the eligibility criteria, services should be requested from the state's general rehabilitation agency.

Veterans with visual impairment may receive services, assistive devices, and assistance with housing adaptations through the Blind Rehabilitation Service of the Veterans Administration (VA) or a VA medical center. The Blind Rehabilitation Service consists of 10 regional blind rehabilitation centers, visual impairment services teams (VISTs), VIST coordinators located at VA medical centers and outpatient clinics, and other rehabilitation personnel whose work may include computer access training or training for those with low vision or who are blind (U.S. Department of Veterans Affairs, 2007). The Blind Rehabilitation Service provides services to all veterans who are blind or have low vision, regardless of whether the visual impairment is service-connected.

Special Employment Legislation

Two laws from the 1930s give people who are legally blind access to sheltered and noncompetitive employment: the Wagner-O'Day Act (PL 75-739), which established a system of sheltered workshops, and the Randolph-Sheppard Act (PL 74-734), which gives people who are legally blind preference as operators of vending facilities on federal properties. These laws and their subsequent amendments have helped to provide work for thousands of people who are blind, but the working conditions have not always been compared favorably with the conditions in the general labor force. Workshop employees are considered workers under federal law, but some agencies have attempted to treat them as clients and have denied them the right to organize for improved wages and working conditions. The National Labor Relations Board has upheld the rights of workshop. Employees to form unions and to bargain collectively, yet some of these workers still earn less than the Federal Minimum Wage, legal under Section 14C of the Fair Labor Standards Act. While vendors are considered self-employed entrepreneurs, the state agency that serves people who are blind issues their operating licenses and supervises their work and service requirements. The 1971 Javits-Wagner-O'Day Act, an expansion of the original 1938 Wagner-O'Day Act, creates employment opportunities for persons who are blind (or who have severe impairments) via government purchases of products and services provided by nonprofit agencies employing such individuals. The National Industries for the Blind, a nonprofit agency, coordinates the implementation of the program for persons who are blind (more information is available at http://www.nib.org).

Income Support

The determination of blindness or visual impairment for disability income support is based on a set of vision standards used by both the social insurance and the income-tested benefit programs administered by the Social Security Administration. People who are blind or visually impaired and who are no longer able to work but have worked and contributed to the Social Security trust funds for at least 5 years are eligible to receive social security disability insurance (SSDI). The benefit calculation formula for these beneficiaries is the one applied to all SSDI beneficiaries. However, the earnings standard for people who are blind or visually impaired who subsequently become employed (referred to as substantial gainful activity, SGA) is higher than the standard for other SSDI recipients (the SGA, for 2007, for example, is $1,500 for persons who are blind compared with $900 for others (Social Security Administration, 2006). Beneficiaries earning above this standard for more than a trial work period of 9 months will no longer be paid an SSDI benefit, although those who are blind can have their payments resume promptly should their earnings fall below SGA. Poor adults who are blind or visually impaired and who have no labor force experience or too little for SSDI eligibility may receive support from the income-tested Supplemental Security Income program (SSI). The federal SSI benefits for people who are blind are the same as those for people with other disabilities, although some states supplement the federal SSI grant to provide greater cash assistance for recipients who are blind (Social Security Administration, 2006). If the SSDI benefit and other income are below the income standard for SSI, it is possible to receive support from both programs. While the SGA standard is applied in some cases for initial SSI eligibility, it is not used for the continuing eligibility of employed SSI recipients. Instead, countable earnings are computed by first deducting work expenses and $85 of disregard, and then calculating 50% of that amount. Recipients are no longer eligible for SSI when countable earnings and other income exceed the income eligibility standard. Unlike other SSI recipients, SSI recipients who are blind are allowed to include in deductable work expenses all work-related expenses, whether or not they are directly related to the impairment.

Services to Deaf Blind and Others With Multiple Impairments

A segment of the population of persons who are visually impaired or blind identified as having unique and sometimes unmet needs is people with hearing impairments as well. The prevalence of concurrent hearing and visual impairment is estimated at 3.3% overall; however, among persons above age 79, the prevalence is estimated to be 16.6% (Caban et al., 2005). The Rehabilitation Act Amendments of 1992 established the Helen Keller National Center for Deaf–Blind Youths and Adults in recognition that some people who are visually impaired also incur hearing loss that precludes use of some alternative techniques and necessitates the development and teaching of new techniques at this center.

Learning the techniques to function without sight may be more difficult if individuals have manual dexterity problems that prevent them from reading Braille or hearing problems that prevent their use of sound in orientation and travel. Some people with visual impairments and cognitive impairments arising out of mental disabilities or brain injuries will need services from agencies and organizations that specialize in cognitive rehabilitation. Agencies that serve people with hearing, mobility, or cognitive impairments may fear taking on clients who have visual disabilities as well. In such circumstances, social workers can play a crucial case management and advocacy role to ensure that clients with multiple disabilities receive the services to which they are entitled.

Serving Clients With Visual Impairment in General Settings

People with visual impairment, like other people, seek social services for marital or family problems, as part of their employment, or on behalf of relatives. In these instances, blindness is incidental or irrelevant to the request for assistance. The social work with such clients should concentrate on the family's or couple's dynamics, and not assume that blindness is the chief issue or that people with visual disabilities need services from specialists in blindness. However, if blindness comes up repeatedly as a source of friction, the worker may need to explore how the visual impairment is affecting the other issues that are the focus of concern.

Civil Rights

All people with disabilities, including those who are blind or visually impaired, are protected against discrimination in employment and in utilizing public and private services by the Americans with Disabilities Act and the 1973 Rehabilitation Act. These laws have no special provisions for persons with visual impairment, but they serve as the basis of an employer's obligation to provide “reasonable accommodation” in the form of readers or other assistive devices. The Act mandates that public and private agencies evaluate whether they are physically accessible and accessible in terms of their program rules, regulations, and procedures. to consumers and clients having visual impairment. What is required for full access is still being contested. For example, the Social Security Administration is being sued for communicating with benefit recipients who are blind or visually impaired in print formats they cannot read, and then suspending their benefits for subsequent failure to comply with its requests (American Council of the Blind et al. v.Jo Ann B. Barnhart, Commissioner of the Social Security Administration, in her official capacity, and Social Security Administration, complaint available at http://www.dredf.org).

Information

When individuals or family members discover that they or their loved ones are likely to have serious visual problems, they may react with emotions such as distress, sadness, fear, and confusion. Such clients and their families need accurate information about laws, services, and alternative techniques for performing tasks that people customarily imagine cannot be handled without vision. Although the onset of visual impairment sometimes necessitates in-depth counseling and therapy for an individual or a family, social workers are cautioned against assuming as in the past (Carroll, 1961) that blindness brings about a new psychology or gives rise to completely different personality problems (see critique in Asch & Rousso, 1985). Instead, social workers can steer clients to information about services and to possibilities for maintaining their work, school, family, and leisure roles with guidance available from the National Center for the Blind, the services listings of the American Foundation for the Blind, and books like If Blindness Comes (Jernigan, 1994). Silverstone et al. (2000) offer comprehensive information about services and research on visual impairment and blindness across the lifespan.

Children With Visual Impairments in the Family, at School, and in the Community

Social workers dealing with infants and toddlers who are blind or their families can get some valuable suggestions from the advocacy and parent groups discussed here and listed in the references. In his comprehensive review of research on children and youth with visual impairments, Warren (2000b) points out that it is dangerous to assume that lack of vision, rather than lack of stimulation, causes delays in development of such activities as crawling, walking, and discovering the world around them. The National Organization of Parents of Blind Children, the American Council of the Blind, journals such as Future Reflections, and state and private service agencies can provide advice to social workers and parents on whether a child should learn Braille, will need assistance in learning to get around safely using the long cane, or even guide them to toys and games that offer stimulation. Because many childhood eye conditions are progressive and the demands of school and social life expand as a child grows, social workers in school settings could aid parents to participate in meetings about their child's educational future and help them become experts in technological devices and alternative methods that allow children who are blind or visually impaired to participate in sports, recreation, music, art, and extracurricular activities, as well as academic activities in school (Willoughby & Duffy, 1989; Castellano, 2005).

Blindness and Visual Impairment During the Working Years

Many working-age people who develop vision problems fail to learn about available rehabilitation services from ophthalmologists or hospitals and as a result may give up their valued activities. Social workers can be advocates for their clients in rehabilitation agencies, can tell clients about guide dog schools, or convince apprehensive families that work, independent travel, and family life are still feasible. Consonant with a strengths approach, they can focus attention on the talents and capacities that remain despite vision loss. Sometimes the person will not be able to fully return to prior employment or activities, but the social worker should refer a client to the tools and skills that will enable him or her to continue in the chosen and valued roles when possible.

Blindness should not be assumed to prevent the safe conduct of other adult roles. In particular, social workers in the field of child-protective services should not presume that an infant or older child cannot be safely cared for by a parent (or parents) with visual impairment. Child protective workers and parents with visual impairment can contact through the Looking Glass (http://lookingglass.org) to learn more about and to obtain resources for parents with blindness or visual impairment. As with all child protection cases, decisions to remove a child should be made on a case-by-case basis after a careful and thorough assessment of the parents' parenting skills and supports.

Blindness in Late Life

Older persons with impaired vision are generally new at dealing with sight loss, and may be experiencing other health problems as well (Ainlay, 1988). They may experience difficulties attributable to lack of training in dealing with blindness or from other health problems, and not from blindness, itself. The Rehabilitation Act Amendments of 1992 provide for increased services for older people with visual impairments, and are intended to keep them active in their homes and communities by providing tools for daily living, travel, and communication. Social workers who see clients in senior citizen centers and nursing homes should be especially alert to the clients' deteriorating vision and should link their clients with the specialized services that will enable them to continue their activities.

Training and Working With Colleagues Who Are Blind

People with visual impairments have been in the social work profession for decades, and there are many instances of field placements and agency accommodations. However, fieldwork sites and employing agencies sometimes still display stereotypes and fears about blindness (Tannenbaum, 2001). A university or agency can seek help through the Council on Disability and Persons with Disabilities of the Council on Social Work Education (http://www.cswe.org/About/governance/CommissionsCouncils/15550/15551.aspx) or through the Web site of the National Federation of the Blind's Human Services Division, whose membership includes professional social workers with visual impairments who are interested in providing employment assistance to persons in the profession who are blind or visually impaired. (http://www.nfbnet.org/mailman/listinfo/humanser).

Key Concepts and Practice Principles for Social Workers

Regardless of service setting, there are some common principles and concepts in working with individuals or groups where one or all clients have visual impairment or blindness. The principles and concepts listed below are synthesized from general practice principles for social work with people with disabilities (Mackelprang and Salsgiver, 1999; Raske, 2005; Rothman, 2003), and from disability etiquette guidelines for interactions with people with blindness or visual impairment (Cohen, 2003; Federal Communication Commission, 2003; Wayne State University, 2007).

The first practice principle is to focus on the individual's presenting problem in assessment and response, rather than assuming that visual impairment is the key problem to be “solved” or the key source of the individual's problems. A second practice principle is not to assume that the presence of severe visual impairment or blindness will preclude active engagement in life's usual activities—schooling, employment, intimate relationships, parenting, care and support of others, cooking and housecleaning, travel, sports, and other leisure activities. Social work with clients who are blind or visually impaired should aim to facilitate engagement in these life activities and the development of environmental accommodations and personal skills that enable full participation and enjoyment. The third principle is to incorporate a strengths perspective, which empowers the client to act in his or her own behalf. Fourth, social workers should be knowledgeable about the range of special services and programs for persons with blindness or visual impairment, even while supporting independence and self-determination. An important advocacy role for social workers is to be vigilant for discrimination and de facto exclusion in the delivery of services and by other organizations and businesses, and to help the client learn how to advocate against or challenge discrimination or exclusion when they occur.

Social workers also need to be knowledgeable about what is referred to as “disability etiquette” when they are working with people with blindness or visual impairment. The key elements of etiquette include not making assumptions in interpersonal interactions, but to be guided by the individual regarding whether help is required, and what kind of help. For example, if there are forms to fill out, clients should be asked what format and process they prefer. Especially for social work encounters, it is important to respect privacy and confidentiality. Two mistakes that agencies sometimes make are to ask family members to fill out a paper form for someone without sight, without first determining that it is acceptable to the client and an appropriate task for a family member, or to have a staff member fill out the paperwork by asking the client for the information in a very public location. Other elements of etiquette involve identifying oneself and others present at the start of the encounter, and waiting for the client to indicate whether or not assistance navigating the office space is required. Another point of etiquette is to know how to direct or guide a person with limited or no sight to another location in a manner that does not violate personal space. Finally, if people with and without sight are part of the social work encounter, social workers need to be alert to any tendency on their part or the part of other staff in the setting to address inquiries to the person with sight that properly should be addressed directly to the person who is blind or visually impaired. More specific information about disability etiquette for working with people who are blind or visually impaired can be found at the Web sites of the references named at the beginning of this section.

A key approach to working with people with blindness or visual impairment is to recognize that it is a social as well as an individual problem. Contact with active members of organizations of people with blindness or visual impairment, such as the National Federation of the Blind, the Blinded Veterans Association, and the American Council of the Blind, is indispensable in helping people new to visual impairment appreciate that Braille, cane or guide dog, recorded materials, live readers, adapted computers, and new ways of managing a home and work life can be as efficient as the ways that relied on sight. Other individuals and advocacy organizations in the disability rights movement are also invaluable in providing allies to battle discrimination and exclusion when it occurs.