Life Care Planning for the Visually Impaired

Introduction

Visual impairment can have a devastating effect on an individual, personally, emotionally, socially, and vocationally. Younger and Sardegna (1994) have pointed out that an individual’s personality, past experiences with blindness, education, social and financial factors, mobility, occupation, cul­tural background, general physical condition, psychological readiness, and family support system will affect how she is able to deal with vision loss. The consequences of vision loss or impairment are all-encompassing, impacting every area of an individual’s life. This demands that the reha­bilitation professional develop a carefully thought out life care plan that meets the needs of the individual over a lifetime through all of the various areas affected. In addition, vision impairment encompasses a continuum of problems from low vision to total blindness. The level of preserved vision will affect the recommendations of the life care plan. Technology is rapidly changing and continues to provide interventions that have a tremendously positive effect on a visually impaired person’s life and vocation.

The goal of this post is to provide background information that the life care planner will need to initiate a life care plan for visually impaired individuals. In addition, and perhaps more important, the post provides references to assist in locating resources for the visually impaired. The life care planner must have a thorough working knowledge of visual impairment, its effect and impact, and expertise regarding the types of equipment and technological advances for the visually impaired.

Definitions

Visual impairment may be divided into two main categories: low vision and blindness. Low vision is much more common than total blindness. From an educational standpoint, blindness is defined as visual acuity in both eyes of less than 20/200 or visual field of less than 20°, despite the best correction with glasses (Social Security Administration [SSA], 2009). In education, low vision is defined as visual acuity better than 20/200 but worse than 20/70 with correction (PL101-476, The Individuals with Disabilities Education Act). Additional important terminology distinctions are severe visual impairment and legally blind. Severe visual impairment is defined by Nelson and Dimitrova (1993) as the self- or proxy-reporting inability to read ordinary newspaper print even with the best correction of glasses or contact lenses. In other words, severe visual impairment is not based on test of visual acuity. Rather, it measures perceived visual problems. Legally blind is used to indicate entitlement to certain government and private agency services. Low vision is defined by the American Academy of Ophthalmology (2003) to exist if ordinary eyeglasses, contact lenses, or lens implants do not give clear vision. People with low vision still have useful vision; however, this vision can be improved with visual aid devices. In addition, vision impairment is defined as having 20/40 or worse vision in the better eye even with eyeglasses. In most states, 20/40 is the point at which people can no longer obtain unrestricted driver’s licenses (NIH, 2003).

Blindness, Visual impairment, visual acuity, vision impairment, vision loss, low vision, blindness,

Epidemiology

A variety of estimates are available at various sources regarding the numbers of individuals with low vision or blindness. Definitions of blindness and low vision vary with different authors or sponsoring organizations. This results in some variability of the numbers that are reported. The Prevention of Blindness Database estimates that in 1990 38 million people worldwide met the definition of blind (Tielsch et al., 1990) and more than 1 million in the United States (NIH, 2003). This was more than double the population reported in 1972 of 10 to 15 million.

Thylefors et al. (1995) reported that 4.6% of the U.S. population met the definition for blindness and 14.4% met the definition of low vision. Nelson and Dimitrova (1993) reported a total number of U.S. citizens with blindness among civilian noninstitutionalized population of 4.3 million. They went on to say that they believed this number represented approximately half of all the individuals with visual impairments in the United States. Nelson and Dimitrova’s (1993) discussion of severe visual impairment revealed that the five states with the highest number of individuals meeting the defini­tion were California, New York, Texas, Pennsylvania, and Florida. Florida had the highest rate of severe visual impairment at 22.6 persons per 1000. It was estimated that approximately 1,000,000 to 1,250,000 were of working age between 18 and 64. For persons ages 40 or older, Iowa, South Dakota, and North Dakota had the highest prevalence (NIH, 2003). In the national picture in 1990, more than 17 of every 1000 persons in the civilian noninstitutionalized population of the United States were severely visually impaired. Slightly over half a million met the definition of blindness in both eyes, with approximately 100,000 children meeting the definition of severely visually impaired. The National Information Center for Children and Youth with Disabilities esti­mates that for individuals under the age of 18, 12.2 per 1000 have visual impairments and 0.06 per 1000 have severe visual impairments, that is, either legally or totally blind (Teplin, 1995). Some stud­ies indicate that visual problems are strongly linked to race. For example, Tielsch et al. (1990) and the NIH (2003) reported that legal blindness is more common among black Americans than whites, and Hispanics have a higher prevalence of vision impairment than other races (NIH, 2003).

Etiology

A variety of conditions can lead to visual impairment. The most common causes of visual impairment vary with the age of the individual. Deutsch and Sawyer (2003) pointed out that the leading causes for children under the age of 5 include retrolental fibroplasia, neoplasm, infections, and injuries. The same is true for individuals ages 5 to 19. Over age 20, cataracts become the most common cause. During the 1970s, glaucoma was the second-leading cause of blindness. However, 1992 data indicate that the most common causes of blindness in the United States are cataracts, trauma, amblyopia, and macular degeneration, respectively. This likely reflects a greater awareness, early detection, and treatment of glaucoma.

Low vision may occur from a variety of causes, which include birth defects, inherited diseases, injuries, diabetes, dacryoma, and cataracts. The most common cause is macular degeneration, which is a disease of the retina and causes damage to the central vision. Peripheral vision, however, is not affected. There are different types of low vision according to the American Academy of Ophthalmology (2003). Reduced central or reading vision is the most common; however, decreased peripheral vision may occur, or a loss of color vision, or the ability to adjust to light, contrast, or glare. The different types of low vision may require different kinds of assistance.

Traumatic etiology of eye injuries occurs in a variety of ways. They may be the result of chemical or ultraviolet burns, direct penetrating wounds, abrasions, lacerations, or violent shaking-type injuries, which can damage the retina. Burns to the eye, lacerations, and corneal abrasions can result in significant visual impairment. However, later scar tissue development can also be a complicating factor that leads to deteriorating vision. Detached retina can lead to blurred or altered vision, flashes of light, or total blindness in an eye.

Some medical conditions that are undiagnosed or not treated properly can lead to severe visual impairment. These include eye infections, glaucoma, cataracts, hydrocephalus, and vascular disease. The central causes of visual impairment would include stroke, traumatic brain injury, hydrocephalus, and tumors. A significant limitation to vision can occur from ocular motor injuries.

Functional Outcomes

The degree of visual loss may vary significantly with the more severe visual impairments leading to the most profound types of functional deficits. The age of onset and level of development before loss of sight occurs are critical factors in a person’s ability to acquire skills and concepts. Vision may actually fluctuate or be temporarily influenced by factors such as fatigue, light glare, or inappropriate lighting. An understanding of the types of visual impairment is important, but generalizations about a person’s visual functioning cannot be made solely on the basis of a diagnosis. Assessment of functional and vocational implications must be conducted on an individual basis, which in turn affects the nature of the final life care plan (LaPlant et al., 1992; Bristow, 1996).

The types of interventions that are required vary, depending on the nature of the visual impairment. For example, if peripheral vision is damaged, the person has tunnel vision and requires different interventions than an individual with macular degeneration, which would result in the loss of central vision with relative sparing of the peripheral vision. Or an individual may have night blindness where she has very little vision in dimly lit areas such as in retinitis pigmentosa, or there is photosensitivity where vision is severely impaired in the bright sunlight.

Special issues occur in very young children with visual impairment (Dodson-Burk & Hill, 1989; Teplin, 1995; Matthews, 1996). In fact, the child’s development depends upon the severity of the visual impairment, type of visual loss, and age at onset of the vision deficit. The National Information Center for Children and Youth with Disabilities reports that a young child with visual impairment has little reason to explore interesting objects in the environment and misses opportunities to have experiences to learn. This lack of exploring will continue until learning becomes motivating or until intervention begins. Children with visual impairment may be unable to imitate social behavior and understand nonverbal cues because they are unable to see peers or parents. This creates obstacles to a growing child’s independence. It is imperative that children with visual impairment be assessed early and receive appropriate interventions. They will require ongoing assessment as they grow and develop. An interdisciplinary approach will be beneficial in teaching self-care and daily living skills, as well as approaching educational and vocational issues. Deutsch and Sawyer (2003) have pointed out that even relatively minor impairment can result in vocational handicaps that limit the range of job alternatives available to an individual and reduce earning capacity. An example is color blindness, which can reduce the range of job opportuni­ties that would otherwise be available. The degree to which total blindness results in permanent impairment and loss of earning capacity varies with the individual and depends on many personal and vocational factors. An infant or young child who has sustained the loss of an eye will require multiple careful follow-up appointments with the placement and replacement of an ocular prosthesis and conformer to promote development of the orbit. Failure to do this will result in some deformity of the forehead and face and will not allow placement of a cosmetic prosthesis.

Psychological Impact

Few conditions are as feared as blindness. As stated in the introduction, an individual’s reaction is affected by personality, past experience, education, social and financial factors, mobility, occupation, cultural background, general physical condition, psychological readiness, and family support. Common psychological reactions include anxiety, depression, anger, and, perhaps the most limiting of all, fear. The individual may experience the five emotional stages of loss as defined by Dr. Elizabeth Kubler-Ross (1975): denial, anger, bargaining, depression, and finally acceptance. While not all individuals will experience each of the stages, and the length of time per stage may vary a great deal, some part or all of these reactions may occur.

Deutsch and Sawyer (2003) described a variety of sensory distortions that can occur early on, including a loss of position sense such as a sensation of floating. This disorientation is often exacerbated by the psychological problems that accompany visual impairments. In addition, an individual who has a sudden onset of total visual impairment may have more acute or severe psychological reactions than an individual who has had a slow onset of blindness and has had time to adjust along the way. Varying degrees of independence will be lost, with some individuals experiencing a high degree of dependence on others. This cannot be viewed as a lack of motivation on an individual’s part. It should be recognized, as previously stated, that there are multiple factors involved that dictate the ultimate functional outcome from visual impairment. Most will experi­ence a great deal of social isolation, frequently having difficulty in establishing relationships. Some individuals have a substantial difficulty in communicating with sighted people after the onset of their visual impairments. If the visual impairment occurs at a very young age, certain concepts such as visual spatial arrangements can be extremely difficult to grasp.

Psychological counseling will be crucial for individuals with visual impairment to assist in dealing with the impact of the disability. In addition, a variety of specialized training and equipment can be utilized to help improve the person’s independence, which will have a positive psychological effect.

Aids to Independent Function and/or Durable Medical Equipment for the Visually Impaired

This need can be divided into two broad general categories: high-technology and low-technology devices. Devices exist to help individuals with low vision and individuals with total blindness. A low-vision device is an apparatus that improves vision. The American Academy of Ophthalmology (2003) cautions that no one device restores normal vision in all circumstances, so that different devices may be required for different purposes. Bristow (1996) reports that a rehabilitation professional should consider three types of aids for the visually impaired: tactile, auditory, and visual aids. Low-vision devices can be divided into optical and nonoptical devices. Optical devices use a lens or combination of lenses to produce magnification. There are five categories: magnifying spectacles, hand magnifiers, stand magnifiers, telescopes, and closed-circuit television. Nonoptical low-vision devices include large-print books, check-writing guides, large playing cards, large telephone dials, high-contrast watch faces, talking clocks and calculators, and machines that can scan print and read out loud.

Lighting is extremely important to individuals with low vision (Panek, 2002). As one ages, the need for light to perform a task increases. On average, a 60-year-old person will need twice as much illumination as he needed at age 20. A person who is visually impaired may require complete renovation or modification of the entire lighting system in her home or office in order to best accommodate her disability. In some cases, having light sources that can be portable or moved close to the work area, such as high-intensity lights on adjustable arms, are beneficial. Hat brims or visors can be useful in blocking annoying overhead light, and absorptive lenses, which can help control glare, should be considered.

Gail Pickering, an assisted technology specialist, has published an excellent post regarding assisted technology for the visually impaired in the 1996 edition of A Guide to Rehabilitation by Deutsch and Sawyer. This post provides a comprehensive discussion of low-technology and high-technology devices and concludes with an exhaustive list of resources for obtaining the devices and information about their cost and use. Also see the resources list at the end of this post and the related post on assistive devices in Weed and Field (2001). With the vast improvements in search techniques and logic via the Internet, the use of Google or another search engine to locate current assistive technology is easier than ever.

Examples of low-technology devices that should be included in a life care plan include check- writing guides, watches that can indicate time by voice, tactile clues or feeling, Braille, tape recorders, labels, timers, cooking cups, measuring cups, cooking devices, rulers, large-dial telephones, and so on. High-Marks is a liquid paste that hardens to make colored fluorescent raised lettering for writing notes or labeling items that can be easily seen or easily felt by someone with normal hand sensation. Label makers can make labels that are large print, Braille, or talking labels that will allow a person to organize her closets and wardrobes, among other uses. Pill splitters and liquid medication guides and measuring spoons are available. Individuals with diabetes and visual impairment will benefit from insulin-measuring devices that are accessible or perhaps a computerized insulin pump. Numerous kitchen devices are available, such as liquid-level indicators, elbow-length oven mitts to prevent burns, and vegetable- and meat-slicing guides. There are self-threading needles, magnetic padlocks (that do not require a combination or a key to open but use a magnetic sensor), typewriters, and letter-writing templates.

Higher-technology devices include portable money handling, accounting, and identifica­tion machines, portable Braille note takers, refreshable Braille displays that can integrate with TDD devices, and optical character reader devices such as the Optacon. This device will scan printed material and convert it to a tactile display. Similar devices can be obtained that will convert the printed material to a computer file or voice synthesizer. Descriptive video services are available that will allow a visually impaired person to receive narrative descriptions of the visual portions of a television program. In order to receive this service, the person must have stereo VCR, DVD, or TV and a second audio program channel to receive the descriptive video service. These devices should be considered in every life care plan for a visually impaired person. Computers can be modified or adapted, such as utilizing a screen reader, a speech synthesizer to allow a visually impaired or blind person to access computer programs. Screen readers are available from Microsoft that will read the graphical portion of a computer program. Electromagnetic ovens can be used to heat food without flames or heating elements to reduce the risk of burns. Kurzweil readers, a computerized camera that scans print media and converts it to voice-synthesized output, are available.

Closed-circuit TV will allow the person who is visually impaired to modify printed text to an enlarged image or to an image that has enhanced contrast so that it may be easier to read. Software programs are available that will scan books on disk for individual words or combinations of words.

Mobility devices are the most common aid, and the simplest is a cane. The proper length is important. The individual should flex the shoulder until the upper limb is parallel with the floor. The distance from the hand to the floor is the proper length for the cane. The cane should be lightweight, flexible, and easily collapsible, and the end of the cane is painted red to indicate to others that the individual has a visual impairment. High-technology mobility devices include a laser cane; examples are the Pathsounder, the SonicGuide, and the Mowat Sensor. These devices operate either by sonar or by light beams. Walkmate is an electronic mobility device that vibrates to indicate when an obstacle is in the path. Some individuals will benefit from the Night Vision Aid, which will provide improved vision by amplifying available light. Aids are available that will help to orient an individual or familiarize a person with the environment that she is in (Galvin & Caves, 1996). Examples would be three-dimensional maps or tactile aids, verbal recordings, and sight descriptions of travel routes. A contemporary high-technology device for mobility that has improved significantly in function since the second edition is a Global Positioning Systems (GPS) device, which can literally help a person locate his position on the Earth accurate to within a few feet. These devices are available with verbal directions and are available in models that can be installed in cars or be handheld. If the individual has turned the wrong way, the device will
alert her to this fact. Digitized compasses are available also. Some areas or cities have transmitters in public areas such as telephones, restrooms, street signs, ATM machines, elevators, and so on, which transmit information about the location.

Guide dog services are extremely beneficial for some individuals who are visually impaired. Most organizations provide a guide dog at no out-of-pocket cost to the person who qualifies. These organizations often have long waiting lists and fairly stringent criteria as to who may qualify to receive the animal. Although there may be no direct cost, there clearly are numerous expenses associated with a guide dog, including the cost of transportation to obtain the guide dog, training on how to use the animal, and lost wages if the individual is employed. The training varies from a couple of weeks to 6 to 8 weeks in length. Once the guide dog has been obtained, there are costs associated with maintaining the animal’s health, tick and flea control, food, grooming, veterinar­ian care, and kennel stays. In addition, there may be some increased costs to maintaining the home. Appropriate modifications such as a fenced-in yard to allow the guide dog the opportunity to be out of the home during times when not working are essential. Periodic replacement of the guide dog’s harness will also be required.

The individual with visual impairment typically will choose not to own a private vehicle and utilize public transportation or taxicab services for community mobility. Such costs must be included in the life care plan, though in personal injury litigation, a deduction for damages received for loss of earnings capacity will be appropriate. If a private vehicle is maintained or the person lives in a town that has limited public transportation, then the cost of hiring a driver should be determined.

There are times and situations where the individual with a visual impairment requiring community mobility is best assisted by using a sighted companion as a guide. Some individuals do not adapt well to canine guides or the use of assistive mobility devices. There may be emotional or cognitive factors (such as a brain injury) that demand a companion assist the visually impaired person with her community mobility. Indeed, in many cases, dependent on the activity level of the person, career choice, environment, and so on, all of the mobility aids mentioned will be required or used.

Personal Care and Homemaker Services

There are numerous activities that are required to maintain a home or to live with a measure of independence in the community. The life care planner must carefully evaluate the individual’s unique situation and functional abilities and keep foremost in mind the safety of the person for whom the plan is being developed. In addition, it is important to recognize that marked changes in the person’s functional status can occur with what would be otherwise relatively minor illnesses for sighted people. The life care plan should have adequate funding for personal care services and homemaker services to cover this eventuality. The individual who is visually impaired will benefit from some assistance in areas such as personal banking; identifying and marking bills for payments; labeling clothing; food shopping and storage; marking settings on the furnace, washing machine, microwave, and stove; some housecleaning; maintaining the home, lawn, and yard; and many other tasks.

When attending school, college, or seminars, note takers and readers may be required and should be considered in the life care plan (Hazekamp & Huebner, 1989; Panek, 2002). In most public school settings, these services may be provided by the school system with funding from the Individuals with Disabilities Education Act (IDEA). There are also funding sources available
through state, federal, and nonprofit resources if the person qualifies (Mendelson, 1987). Such funding can vary with jurisdiction and congressional funding.

Mobility training, available in many metropolitan areas, is essential for persons who are visually impaired and requires a time-intensive initial training period and then updates on an annual or as- needed basis. Mobility instructors will be required when there are any changes in the individual’s life such as a new home or home modifications, a new job or change in one’s present job, a move to a new city, or orientation to new stores and businesses that develop in the community. Changes in public transportation systems or bus routes may also require an additional training period. This is separate from orientation training that is required on an ongoing basis. For example, a visually impaired person will have times when strangers are required to be in the home, such as for home repairs, servicing for utilities, deliveries, and so on. Having a trusted sighted companion present in the home during these times provides an extra measure of safety for the visually impaired person and his personal belongings.

Formal Rehabilitation

For the newly blind or for a person who is severely visually impaired, a formal rehabilitation program should be undertaken. Topics that should be addressed at a minimum include com­munication with the sighted world, training in personal management and household tasks, access­ing printed material, meal preparation and consumption, in-home and community mobility, and other activities of daily living. Mobility training should be refreshed at least on an annual or as-needed basis and is somewhat dependent on changes in the person’s life. Additional areas to be addressed would include Braille instructions, typing lessons, vocational training, and psychological counseling or adjustment.

Case Study

The following excerpts of a life care plan are for a 49-year-old woman injured in a motor vehicle accident. She experienced a mild brain injury as well as blindness from a blood clot on her brain. The following is for illustration purposes only and does not constitute the complete life care plan.

Recommendation

Dates

Frequency

Expected Cost

Aids for Independent Function

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Arctic Business Vision software

2009-2033

Replace every 5 years

$1895
Arctic transport synthesizer

2009-2033

Replace every 5 years

$1295
Braille & Speak portable note taker

2009-2033

Replace every 3 years

$1794
Braille printer

2009-2033

Replace every 3 years

$3995
Duxbury Braille Translator

2009-2033

Replace every 5 years

$495
DUXWP Translator

2009-2033

Replace every 3 years

$295
Optic scanner

2009-2033

Replace every 5 years

$1500
Personal computer with voice control (JAWS and software only)

2009-2033

Update every 2 years $1000, then $300 per 2 years
Refreshable Braille display

2009-2033

Replace every 5 years $14,495
Talking money identifier

2009-2033

Replace every 5 years $685
Maintenance for equipment

2010-2027

Yearly with deduction for warranty $500 per year average
Mobility training

2009-2010

1 time only $45,000
Seeing eye dog

2009-2033

Every 12 years $0 for dog $1500 per year for food, grooming, veterinarian, and flea and tick treatments
Allowance for aids such as canes, talking clock, watch, kitchen timer, blood pressure cuff, travel alarm, scale, yardstick, writing guide, garment labeler, talking books, etc.

2009-2033

Yearly $300 per year

Home Care

Housekeeper

2009-2033

Weekly $2080 per year
Handyman

2009-2033

Weekly $2080 per year
Lawn maintenance

2009-2033

Seasonally (32 weeks) $700 per year
Personal assistance for shopping, etc.

2009-2033

10 hours per week $6240
Home security

2009-2033

1 time only $1500 + $25 per month maintenance and monitoring

Future Medical Care—Routine

Physiatrist

2009-2033

3 times per year $204 per year
Neurologist

2009-2033

1 time per year $54 per year
Ophthalmologist

2009-2033

2 times per year $224 per year
Lab tests, including UA , Tegretol, and blood

2009-2033

2 times per year $156-578 per year

Transportation

Taxi

2009-2033

As needed $600 per month average; economist to deduct average cost of car expense

Conclusion

Visual impairments can be caused by disease, injury to the eye or brain, or the natural process of aging. Although total blindness is relatively rare, low vision or vision disturbance (such as neglect or field cuts) can adversely affect the person’s ability to live independently or work. This post is designed to sug­gest life care planner topics and services that need to be considered when developing a comprehensive plan. Since the causes of visual impairment are varied, and specific functional limitations and medical care are individual, the life care planner should either have education or training in this specialized area or associate with someone who does. Fortunately, many resources and adaptive aids (see the following) have been developed for enhancing the person’s quality of life as well as productive functioning.

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