Eye Health Needs Assessment for Alabama Prepared for The EyeSight Foundation of Alabama (formerly Alabama Eye Institute) By Janet M. Bronstein, Ph.D. and Michael A. Morrisey, Ph.D. April 2000 1 Acknowledgements Torrey Smitherman, Executive Director of the Alabama Eye Institute, Inc. made significant contributions to this report. Matthew Rousculp, School of Health Related Professions, provided excellent research support. 2 Contents Executive Summary ……………………………………..Page 5 Chapter I What are the most common eye health and vision problems in Alabama……………….Page 9 Chapter II What services are available to address these eye health and vision problems?……………..Page 17 Chapter III What services are provided by ophthalmologists and optometrists?…………………..…….Page 38 Chapter IV What do eye care providers perceive to be major needs?……………………………..……….Page 45 Chapter V What are the major gaps in service availability for eye health and vision problems?……...…Page 61 Appendix A……Summary of Eye Disease Prevalence Data .…………………………….………………..Page 64 Appendix B……Provider Survey…..………………….Page 66 Appendix C…...Rehabilitation and Organization Survey ……………………………..………………..Page 72 3 List of Tables Chapter I I-1 Estimated Portion of Alabama Population that is Legally Blind …...Page 15 I-2 Estimated Portion of Alabama Population that has Difficulty Seeing ……..…………………………………………………Page 15 Chapter II II-1 II-2 II-3 Map II-4 II-5 Location of Providers in North and Eastern Alabama …………….. Page 18 Location of Providers in Central and Western Alabama ………….. Page 19 Location of Providers in South Alabama …………………………… Page 20 Eye Care Providers in Alabama ……………………………………. Page 22 Location and Service Areas of Blind Services Provided by the Alabama Department of Rehabilitation …………………………….. Page 24 Providers of Low Vision Rehabilitation and Other Special Services ……………………………………………………………….. Page 35 Chapter III III-1 III-2 III-3 III-4 Percentage of Respondents Providing Preventive Services ……. Percentage of Respondents Providing Diagnostic Services ……. Percentage of Respondents Providing Treatment Services ……. Percentage of Respondents Providing Rehabilitation Services .. Page 39 Page 40 Page 41 Page 43 Chapter IV IV-1 IV-2 Most Common Referral Difficulties Reported by Ophthalmologists and Optometrists …………………………………………………… Page 45 Eye Care Services Reported by Ophthalmologists and Optometrists to be the most difficult for People to Obtain ……… Page 47 4 Executive Summary What are the most common eye health and vision problems in Alabama? Strategic Plan documents from the National Eye Institute were used to identify serious eye health problems in the United States. Applying rates derived from the epidemiological literature to the Alabama population, seven significant eye disorders and three major vision problems were identified. In addition, data from the American Federation for the Blind were used to estimate the number of legally blind and seriously visually disabled individuals reside in Alabama. The major conclusions of this section are: Approximately 24,000 individuals (0.6 percent of the population of the state) is legally blind, with an additional 120,000 (2.9 percent) having permanent serious difficulty seeing. Rates of these disabilities are much higher for elderly individuals, and thus the portion of the population that is affected is increasing. Within age groups, the rate of blindness and vision impairment is higher for the Black population of the state. The most common treatable eye problems are cataracts and refractive errors. Two serious, relatively common eye disorders, diabetic retinopathy and glaucoma, are potentially treatable or controllable if diagnosed early, sometimes before symptoms become apparent. What services are available to address these eye health and vision problems? Major preventive, diagnostic, treatment and rehabilitation services used to address the major eye health problems were identified. These services are provided, to varying degrees, by ophthalmologists, optometrists and rehabilitation care providers. The geographic distribution of these providers across the state was examined. The major conclusions of this section are: Services provided by ophthalmologists require more patient travel than services provided by optometrists. There are multiple rehabilitation programs serving different client populations in the state, with locations and catchment areas differing by program. Many rural areas of the state are distant from any eye service providers. 5 What services are provided by ophthalmologists, optometrists? Information to address this question was gathered via a survey of ophthalmologists and optometrists conducted in September, 1999. Providers reported whether they provided specific preventive, diagnostic, treatment and rehabilitation services. The major conclusions of this section are: When ophthalmologists and optometrists are present, the full range of preventive, diagnostic, and treatment services are available. In general, optometrists are somewhat more likely to routinely provide preventive services and less complex diagnostic and treatment services than are ophthalmologists. Ophthalmologists are much more likely to routinely provide more complex diagnostic and treatment services. In general, the Birmingham area is more sub-specialized than elsewhere in the state. General ophthalmologists in Birmingham more often refer patients to specialized ophthalmologists for complex procedures. Few rehabilitation services are provided by ophthalmologists or optometrists. What do eye care providers perceive to be major needs? Ophthalmologists and optometrists were asked to identify the preventive, diagnostic, treatment and rehabilitation services that were most difficult for patients to obtain. They were asked which major barriers patients faced in accessing services. Finally, they were asked two open-ended questions, one concerning the major unmet eye care need in their communities, and the second concerning the single action by a foundation that would make the greatest improvement in eye health in their communities. In summary, they responded: Ophthalmologists and optometrists perceive an absence of rehabilitation training and equipment aids available for their patients with severe vision problems. This need is not limited to those who are unable to afford such services. In some places they are not conveniently available for any patients, or physicians are unaware of service availability. 6 Ophthalmologists and optometrists also noted the need for more public education to increase awareness of the need for routine preventive care to prevent and treat eye problems. Many providers are in contact with patients who would benefit from eye health services, but who cannot afford them financially. Financial support for eye health services is perceived to be an important need. There is a perceived need for improved availability of specialty eye health services outside of major urban areas. An additional survey of vision rehabilitation and other service providers was conducted in December 1999 – February 2000. These organizations were also asked to identify major needs for eye care. They noted many of the same issues as the ophthalmologists and optometrists. In addition, they identified: A need for additional trained professionals to work in rehabilitation. The need for active outreach to connect individuals with needs to service providers. What are the major gaps in service availability for eye health and vision problems? Combining information on disease prevalence, the distribution of providers, the services provided, and the needs identified by care providers, four major needs or gaps in service availability were identified. These are: 1. A need for public education concerning the importance of vision screening and routine preventive eye care. This would be of particular benefit for young children with vision problems and for adults in the early, non-symptomatic stage of severe eye diseases such as glaucoma and diabetic retinopathy. 2. A need for financial support for eye health services. Many individuals in the state lack health insurance that provides coverage for eye health services, particularly for treatments, surgery, rehabilitation and adaptive aids. 3. A need for greater availability of rehabilitation and adaptation aids and services. An increasing portion of the population, the elderly, are severely affected by vision problems. Vision aids and adaptive training can assist with these problems, but they are not widely available and not affordable for many individuals. Although there are publicly supported programs in the state that directly provide or subsidize the cost of many of these services, referral of the public into these programs is inconsistent. The programs are scattered 7 across the state, and many have waiting lists for clients due to limited resources. 4. A need for improved geographic access to specialty services. Specialty care tends to be centralized in larger cities. Distance is a barrier to access for some individuals. In addition, some specialists in rural areas identified the need for colleagues and for local access to specialty equipment. Providers of subsidized and support services described a need for better outreach to make potential clients more aware of available services. 8 I. What are the most common eye problems in Alabama? Information was collected from the epidemiological literature on the most common eye problems reported in the United States. These citations are shown in Appendix One. However, to focus the discussion of eye health problems on those that are of major concern, we reviewed the National Plan on Vision Research for 1999-2003 from the National Eye Institute. That source listed major problems in five categories, and also emphasized issues in visual impairment and rehabilitation. In the discussion below, we describe each of these key conditions and indicate the estimated number of cases in the state. The estimates were calculated by applying the population-based rates available from the medical literature to county level census based population data. Where rates were available separately for age, sex or race groups, these rates were applied to the specific categories in the population. However, different studies of different eye disorders report rates in different formats. The conditions are presented separately as eye disorders and vision problems, and listed in descending order of frequency of occurrence. Eye Disorders and Diseases 1. Age related Macular Degeneration Macular Degeneration is an eye disorder caused by the degeneration of the retinal macula, the area of the eye where vision is the sharpest. It is a major cause of vision impairment among the elderly. The disorder hampers central vision, but peripheral vision is unimpaired. Macular degeneration is painless; vision impairment may be slow or rapid. There is no known cause. One type of macular degeneration can be partially controlled by laser treatments. Macular degeneration accounts for roughly 11.7% of the blindness in the United States and is the reason for over 16% of the new cases in blindness. There are two forms of macular degeneration. Dry, or atrophic, is an atrophic pigment epithelial change and is most often associated with a slow, progressive, and mild visual loss. Wet, or exudative, form of the disease causes a rapid progression and severe vision loss. Study Number of cases (AL-est.) Beaver Dam Study (1988-1990) 230,298 – Early stage 24,000 – Late stage Applying rates by sex to state population over age 43 9 2. Cataracts Cataract is a gradually developing opacity of the lens or lens capsule of the eye. An individual with cataracts experiences a painless, gradual blurring and eventual loss of vision. Generally speaking, the opacification and scattering of light in the cataractous lens is the result of breakdown of the lens architecture. (e.g. sugar cataracts – can be induced in animals by feeding them a diet enriched with various sugars.) There are at least five major causes of cataracts: 1. Senile – develop in elderly patients probably because of degenerative changes in chemical state within the lens. 2. Congenital – occur in newborns as genetic defects or as sequela of maternal rubella during first trimester. 3. Traumatic – develops after a foreign body injures the lens with sufficient force to allow aqueous vitreous humor to enter the lens capsule. 4. Complicated – secondary effects in patients with uveitis, glaucoma, retinitis pigmentosa, detached retina, or in persons with diabetes, hypoparathyroidism, or atopic dermatitis. 5. Toxic – results from certain drug or chemical toxicity. Study Framingham, MA (1973-1975) Number of cases (AL-est.) 133,601 * Applying rates by sex to state population 3. Primary Open-Angle Glaucoma Glaucoma is now defined as a disease of the optic nerve, in which the nerve fibers are injured, usually by abnormally increased intraocular pressure (IOP), but also by other conditions. Although abnormally high IOP is still recognized as the leading cause of glaucoma, many people with elevated pressure in the eye do not develop the disease, and some people with normal IOP develop optic nerve damage characteristic of glaucoma. In these latter cases, one or more factors may be involved, including reduced blood flow, early nerve cell death, and irritation of the nerves. Elevated pressure in the eye, however, is still an important component of glaucoma and reducing it is the primary goal of treatment in most cases. The two primary forms of glaucoma are open-angle and closed-angle glaucoma. Infrequently, a person may have a combination of the two. Another less common form is known as low- or normotensive glaucoma, in which damage occurs to the optic nerve but the IOP is normal. People may also develop glaucoma as a 10 complication of surgery, drugs, or medical problems. Rarely, a baby is born with glaucoma, a condition known as congenital glaucoma. The overwhelming majority of people with glaucoma -- about two-thirds -- have a chronic form known as open-angle glaucoma, in which the drainage angle remains open, but tiny drainage channels in the trabecular meshwork become clogged. Increased pressure occurs when the fluid in the eye's anterior chamber builds up; it is essentially a plumbing problem. The excess pressure results from an imbalance between the production and the drainage of aqueous humor. In most cases the imbalance is caused by impaired drainage, but in rare instances the pressure is high because the eye produces too much aqueous humor. In either case, the excess aqueous humor puts increased pressure on the optic nerve at the back of the eye. If the pressure is untreated, it damages the delicate fibers that convey images to the brain, and, eventually, the nerve deteriorates until a person becomes irreversibly blind. Chronic open-angle glaucoma usually occurs in both eyes but tends to start in one first. Risk factors for POAG include the following Elevated intraocular pressure Large optic disk cup Ethnicity (African American) Age Family history of glaucoma Diabetes mellitus Systemic hypertension Myopia Study East Baltimore (1985-1988) Number of cases (AL-est.) 33,366 Rates by race applied to state population over age 40. 11 4. Diabetic Retinopathy Retinopathy, a disease of the retina, the light sensing tissue at the back of the eye, is a common concern among people with diabetes. Diabetic retinopathy damages the tiny vessels that supply the retina with blood. The blood vessels may swell and leak fluid. When retinopathy is more severe, new blood vessels may grow from the back of the eye and bleed into the clear gel that fills the eye, the vitreous. While most people with diabetes may never develop serious eye problems, people who have had diabetes for 25 years are more likely to develop retinopathy. Experts think high blood pressure may contribute to diabetic retinopathy, and that smoking can cause the condition to worsen. Treatment for diabetic retinopathy can help prevent loss of vision and can sometimes restore vision lost because of the disease. A yearly eye examination with dilated pupils makes it possible for an ophthalmologist or optometrist to notice changes before the illness becomes harder to treat. Scientists are testing new means of treating diabetic retinopathy. Study Framingham, MA (1973-1975) Number of AL cases 26,903 Applying rates by sex to state population, ages 52-85. 5. Keratoconus Keratoconus is a degenerative eye disorder that is due to a genetic defect. This disease is typified by the thinning and anterior protrusion of the cornea. More specifically, it is an axial corneal dystrophy, usually starting between ages of 12 – 20. It results in a conical ectasia of the cornea and subsequent impairment of vision. The “coning” is normally eccentric downwards. Study Minnesota (1935-1982) Number of cases (AL-est.) 2,267 Rates by sex applied to state population 6. Retinitis Pigmentosa Retinitis Pigmentosa is a degenerative condition of the retina of unknown cause. Degeneration of the light-sensitive rod cells in the retina occurs first, and night blindness is generally the first symptom. This usually begins in early adult life. The color-sensitive cone cells become involved more gradually, daytime vision 12 deteriorates, and the field of vision is slowly reduced from the edges inward, a condition know as telescopic vision. Genetically induced, the progressive destruction of the retinal rods results due to the atrophy of the pigment epithelium and eventually leads to blindness. Eighty percent of children with this disease inherit it as an autosomal recessive trait. The onset of the disease usually occurs prior to age 20. The disease initially affects night and peripheral vision and leads to blindness by age 50. Study General population Number of cases (AL-est.) 844 - 1,405 Vision Problems 1. Strabismus Also called a squint, strabismus is a condition in which the axes of the eyes are not parallel even when a person is looking at a distant object. It is usually the result of an imbalance in the movement of the two eyes caused by poor muscle control. The attempt to coordinate vision when one eye has better sight than the other (amblyopia) or when one eye has farsightedness (hyperopia) is also called strabismus. There are four major forms of this disease. Esotropia (cross-eyed)– eyes deviate inwards Exotropia (walleyed) – eyes deviate outwards Hypertropia – eyes deviate upwards Hypotropia – eyes deviate downwards Study General population (1971-1972) Number of cases (AL-est.) 163,314 Rates applied to general population, ages 1-74 2. Myopia (nearsightedness) Myopia is a visual defect in which distant objects can-not be seen clearly. It occurs because light entering the eye is focused in front of the retina instead of on it. Distant objects are out of focus because either the lens of the eye is too curved, bending the light rays too much or the eyeball is too long, a condition that seems to be inherited. Close objects can be seen sharply, and even in old age, nearsighted people may be able to read easily without glasses. 13 It is suggested in other sources, that myopia affects 15-20% of the western population. In comparison, hypermetropia (far sightedness) affects roughly 50% of the population. Study General population (1971-1972) Number of cases (AL-est.) 105,627 Rates by sex applied to the state population 3. Amblyopia Amblyopia is due to a developmental defect of spatial visual processing that occurs in the central visual pathways in the brain. There is a loss of visual acuity, although the affected eye appears to be normal. When amblyopia is due to strabismus, the condition is usually corrected by wearing a patch over the stronger eye, thus strengthening the weaker one. If the condition is not corrected, the weak eye can become legally blind. Study General population (1971-1972) Number of cases (AL-est.) 99,582 Rates applied to general population, ages 1-74 Low Vision and Blindness The National Eye Institute, in addition to reviewing specific eye disorders, notes that a significant portion of the population has chronic, uncorrectable vision impairment, for a variety of reasons. Vision impairment is one of the 10 leading causes of disability in the United States. The majority of those with serious visual impairment are elderly, with leading causes including macular degeneration, cataract, glaucoma, diabetic retinopathy, and optic nerve atrophy. Because the portion of the population in this age group is growing most rapidly, blindness and serious visual impairments will be an increasing problem in Alabama. In the following table, prevalence rates for blindness and serious vision problems by age and race (available from the American Foundation for the Blind) have been applied to the Alabama population. Table I-1. Estimated Portion of Alabama Population that is Legally Blind* 14 Age White Population Non-White Population Rate/1,000 Rate/1,000 0-4 5-17 18-44 45-64 65-74 75-84 85+ Total Number 0.1 0.9 1.4 3 5.7 21.1 125 19 483 1,694 2,193 1,447 3,431 7,121 16,388 0.3 1.2 3 9 22.4 29.3 135.1 Total Number 32 338 1,484 1,708 1,377 1,177 1,950 8,066 Number 51 821 3,178 3,901 2,824 4,608 9,071 24,454 * Rates based on Baltimore Study Table I-2. Estimated Portion of Alabama Population that has “Serious Difficulty Seeing”* Age 0-14 15-64 65-74 75+ Total White Population Rate /1000 4.05 17.97 60.01 140.05 Number 2,430 37,219 15,236 30,749 85,634 Black Population Rate /1000 5.72 23.29 127.69 189.35 Number 1,718 16,161 7,555 10,122 35,556 Hispanic Total Population Rate Number Number /1000 3.81 40 4,152 22.66 542 53,403 89.74 105 22,881 102.32 64 40,973 751 121,190 Data from National Survey Note that across age groups, the Black population has higher rates of blindness and vision impairment that the White population. I-Summary Approximately 24,000 individuals (0.6 percent of the population of the state) is legally blind, with an additional 120,000 (2.9 percent) having permanent serious difficulty seeing. Rates of these disabilities are much higher for elderly individuals, and thus the portion of the population that is affected is increasing. Within age groups, the rate of blindness and vision impairment is higher for the Black population of the state. The most common treatable eye problems are cataracts and refractive errors. 15 Two serious, relatively common eye disorders, diabetic retinopathy and glaucoma, are potentially treatable or controllable if diagnosed early, but they generally must be diagnosed before symptoms become apparent. 16 II What services are available to address these eye health problems? After reviewing the recommended treatment guidelines formulated to date for ophthalmic problems, and through discussions with health care providers, we compiled a listing of four types of services useful for these and other eye conditions. These include: Preventive and Population-Based Screening Services 1. Education in eye protection, care of contacts, prevention of infection 2. Glaucoma screening 3. Infant and young child vision screening Diagnosis 1. Exams for refractive errors. 2. Comprehensive adult and pediatric eye exams 3. Specialized diagnostic procedures Treatment 1. 2. 3. 4. 5. Optical correction Exercises for amblyopia and strabismus Topical treatment for infections and glaucoma Cataract removal Corneal transplant and other ophthalmologic surgery Rehabilitation 1. 2. 3. 4. 5. Assessment of functional disability and adaptation skills Low vision exam Training in adaptive technology Training in adaptations for daily living Counseling on impact of low vision, including vocational. Optometrists and Ophthalmologists These services are potentially available from three sources: ophthalmologists, optometrists, and rehabilitation service providers. The next tables and map show the availability of optometrists and ophthalmologists in the state. These data are based primarily on office locations listed in the Alabama yellow pages, March 1999. Other available listings, including license data and voluntary listings (e.g., the Blue Book, a national directory of optometrists) rapidly become outdated due to the mobility of these professionals. In addition, these other listings include 17 residential as well as business addresses. This table shows business addresses, in order to indicate where patients must travel to receive services. Note that not all of these services are available from all providers, as we review in Chapter III. The following section describes the range of rehabilitation services provided in the state, and notes the providers and their locations. Table II-1 Location of Providers in North and East Alabama* Location Albertville Alexander City Anniston Arab Athens Attalla Cedar Bluff Centre Childersburg Cullman Decatur Florence Fort Payne Gadsden Geraldine Hazel Green Henager Huntsville Jacksonville Lexington Madison Muscle Shoals Piedmont Rainesville Russellville Scottsboro Sheffield Stevenson Sylacauga Talladega Trinity Tuscumbia Total Ophthalmologists 1 3 3 0 2 0 0 0 0 5 3 0 0 7 0 0 0 21 0 0 1 0 0 0 0 0 1 0 1 2 0 1 41 Optometrists 0 7 11 2 1 1 1 1 1 11 5 1 3 9 1 1 2 7 2 1 1 1 2 4 1 4 0 1 3 3 1 0 89 *Based on on-line Yellow Pages, MD license data and AEI mailing lists. 18 Table II-2 Location of Providers in Central and West Alabama * Location Adamsville Alabaster Aliceville Bessemer Birmingham Blountsville Brookwood Centreville Clanton Chelsea Columbiana Gardendale Fairfield Fayette Gordo Hamilton Jasper Leeds Millport Montevallo Northport Pelham Pell City Reform Springville Sumiton Tuscaloosa Trussville Vernon Vincent Total Ophthalmologists (Practices) 0 0 0 4 147 0 0 0 0 0 0 0 3 1 0 0 4 0 0 0 1 0 1 0 3 0 7 0 0 0 171 Optometrists (Practices) 1 3 1 7 109 1 2 1 5 2 3 10 1 2 3 1 8 3 4 1 0 9 5 2 1 4 1 2 1 2 195 *Based on on-line Yellow Pages, MD license data and AEI mailing lists 19 Table II-3 Service Providers in South Alabama* Location Andalusia Atmore Auburn Brundidge Daphne Demopolis Dothan Elba Enterprise Fairhope Foley Geneva Greenville Greensboro Gulf Shores Jackson Luverne Marion Millbrook Mobile Montgomery Opp Ozark Prattville Saraland Selma Semmes Tallassee Troy Tuskegee Valley Wetumpka Total Ophthalmologists (Practices) 0 0 1 0 0 0 16 0 1 4 6 0 0 0 1 3 0 0 0 37 59 0 0 0 0 10 0 0 12 1 1 3 154 Optometrists (Practices) 1 5 2 1 7 5 19 2 5 1 0 2 2 1 2 0 3 1 1 54 33 1 2 2 3 5 1 2 3 2 1 1 122 *Based on on-line Yellow Pages, MD license data and AEI mailing lists The following map shows the location of these practices geographically. Particularly noticeable on the map are the large rural areas of the state that are particularly distant from state-based ophthalmology services. It is likely that residents of Northeast Alabama use providers in Chattanooga for care, while residents of West Alabama probably use Mississippi based providers. However, many residents of the Black Belt area of the state have few local eye service 20 providers and must travel long distances for care. This area of the state has a large proportion of Black residents, who are at higher risk for disabling vision problems. 21 Optometrists Ophthalmologists 22 Low Vision And Rehabilitation Services Low vision, rehabilitation and other special eye services are available across the state. The publicly supported programs are regionalized, with all of the counties in the state assigned to different regional offices. This section describes the programs available to Alabama citizens, beginning with state and federal mandated public rehabilitation programs available through the Alabama Department of Rehabilitation Services. A table and maps identifying the location of the regional offices for each program by county is included. Other various providers of services are described also, followed by a table illustrating the type of services provided by each organization. Alabama Department Of Rehabilitation Services The Blind Services Division of the Alabama Department of Rehabilitation Services offers assistance for citizens who live with low vision or blindness through a variety of programs offered at regional offices throughout the state. Availability varies from region to region. Some of these services are provided free of charge, while others incur payment. Some, but not all, services are contingent upon financial need. Some ADRS blind services have waiting lists due to limited capacity and resources. ADRS collaborates with other institutions, such as the Alabama Institute for Deaf and Blind, the State Department of Education, and Alabama Lions Sight Conservation Association. ADRS provides blind and low vision direct services (such as eye exams and referrals, transportation, equipment, training and rehabilitation services), and support services (such as financial assistance or referrals) through the following programs: Early Intervention Program For families of children from birth to two years of age. Children’s Rehabilitation Services For individuals from ages three to 21. Vocational Rehabilitation Services For those from ages 16 to 65. Oasis (Older Alabamians System Of Information And Services) For individuals 55 and above. The following table identifies the different regional offices that are associated with these different programs. Note that each program serves a different population, 23 so that referral sources, such as optometrists or ophthalmologists, need information about a wide range of programs and eligibility criteria. Also, some ADRS services are currently at capacity in terms of serving individuals with vision impairment, so clients referred may remain on waiting lists for services. Table II-4 Location and Service areas of Blind Services Provided by Alabama Department of Rehabilitation Services County Birth-2 years Early Intervention 3-21 years Children’s Rehab 16-55 years Vocational Rehab 55 & older OASIS Autauga Baldwin Barbour Bibb Blount Bullock Montgomery Mobile Dothan Tuscaloosa Talladega Montgomery Montgomery Mobile Dothan Tuscaloosa Gadsden Montgomery Montgomery Mobile Dothan Tuscaloosa Birmingham Montgomery Butler Dothan Andalusia Calhoun Chambers Cherokee Chilton Choctaw Talladega Montgomery Talladega Montgomery Mobile Anniston Opelika Anniston Montgomery Jackson Clarke Mobile Jackson Clay Cleburne Coffee Colbert Talladega Talladega Dothan Huntsville Conecuh Coosa Covington Crenshaw Dothan Montgomery Dothan Dothan Anniston Anniston Dothan Muscle Shoals Andalusia Montgomery Andalusia Andalusia Cullman Dale Dallas DeKalb Elmore Escambia Birmingham Dothan Tuscaloosa Talladega Montgomery Mobile Birmingham Dothan Selma Gadsden Montgomery Mobile Montgomery Mobile Dothan/Troy Tuscaloosa Birmingham Montgomery/ Troy Andalusia/ Troy Anniston Opelika Gadsden Birmingham Mobile/ Thomasville/ Jackson Mobile/ Thomasville/ Jackson Talladega Anniston Andalusia Muscle Shoals Andalusia Talladega Andalusia Andalusia/ Troy Decatur Dothan Selma Gadsden Montgomery Mobile Montgomery Anniston Opelika Gadsden Birmingham Mobile Mobile Talladega Anniston Dothan Muscle Shaols Montgomery Talladega Dothan Montgomery Decatur Dothan Montgomery Gadsden Montgomery Mobile 24 County Birth-2 years Early Intervention 3-21 years Children’s Rehab 16-55 years Vocational Rehab 55 & older OASIS Etowah Fayette Franklin Talladega Tuscaloosa Huntsville Geneva Greene Dothan Tuscaloosa Gadsden Tuscaloosa Muscle Shoals Dothan Tuscaloosa Gadsden Tuscaloosa Muscle Shoals Dothan Tuscaloosa Hale Henry Houston Jackson Tuscaloosa Dothan Dothan Huntsville Tuscaloosa Dothan Dothan Huntsville Jefferson Birmingham Birmingham Lamar Lauderdale Tuscaloosa Huntsville Lawrence Huntsville Tuscaloosa Muscle Shoals Muscle Shoals Lee Limestone Lowndes Macon Montgomery Huntsville Montgomery Montgomery Opelika Huntsville Montgomery Opelika Madison Marengo Marion Huntsville Tuscaloosa Huntsville Marshall Mobile Monroe Huntsville Mobile Mobile Huntsville Selma Muscle Shoals Huntsville Mobile Jackson Montgomery Morgan Montgomery Huntsville Montgomery Huntsville Tuscaloosa Dothan Dothan Huntsville/ Scottsboro Birmingham/ Bessemer Tuscaloosa Muscle Shoals Muscle Shoals/ Dothan Opelika Decatur Selma Montgomery/ Opelika Huntsville Tuscaloosa Tuscaloosa/ Jasper Gadsden Mobile Mobile/ Thomasville Montgomery Decatur Gadsden Tuscaloosa Muscle Shoals Dothan Tuscaloosa/ Dothan Tuscaloosa Dothan Dothan Huntsville Perry Pickens Pike Tuscaloosa Tuscaloosa Montgomery Selma Huntsville Montgomery Randolph Montgomery Opelika Russell Montgomery Opelika Tuscaloosa Tuscaloosa Troy/ Andalusia Talladega/ Anniston Opelika Birmingham Tuscaloosa Muscle Shoals Decatur Opelika Decatur Montgomery Montgomery Huntsville Tuscaloosa Tuscaloosa Gadsden Mobile Mobile Montgomery Decatur Tuscaloosa Tuscaloosa Montgomery Anniston Opelika 25 County Birth-2 years Early Intervention 3-21 years Children’s Rehab 16-55 years Vocational Rehab 55 & older OASIS St. Clair Talladega Talladega Talladega Shelby Birmingham Birmingham Sumter Talladega Tallapoosa Tuscaloosa Walker Tuscaloosa Talladega Montgomery Tuscaloosa Birmingham Tuscaloosa Talladega Opelika Tuscaloosa Birmingham Washington Mobile Jackson Wilcox Winston Tuscaloosa Huntsville Selma Muscle Shoals Talladega/ Gadsden Birmingham/ Columbiana Tuscaloosa Talladega Opelika Tuscaloosa Tuscaloosa/ Jasper Mobile/ Thomasville/ Jackson Selma Tuscaloosa/ Jasper Birmingham Tuscaloosa Talladega Opelika Tuscaloosa Tuscaloosa Mobile Montgomery Tuscaloosa In addition to the low vision and rehabilitation services provided by the state through ADRS, a variety of non-profit organizations throughout Alabama offer programs to assist the blind and visually impaired, as well as to conduct other special eye services such as research. Referrals between these groups do occur, although in an inconsistent manner. Some groups are very specialized, both in focus and in geographic coverage. Some are able to fulfill their purpose only partially due to lack of funding. Qualifications for free services vary with these groups and limit their ability to assist some people. Following is a list and brief description of the organizations identified through this assessment. Alabama Association For Parents Of Visually Impaired Based in Birmingham, AAPVI is a support group for parents of children who are blind or otherwise visually impaired. Alabama Child Caring Foundation Based in Birmingham and affiliated with Blue Cross-Blue Shield, this foundation provides payment for professional eye exams, lenses and frames for Alabama children, 18 and under, who are uninsured. Alabama Deaf-Blind Project 26 ADBP is a federally-funded technical assistance program that supports a statewide registry of students who are blind or visually impaired. This program also provides training to service providers and parents. It is based in Birmingham. Alabama Eye Bank The objective of the Alabama Eye Bank is to obtain donations of quality human eye tissue for distribution to qualified physicians for use in sight restoring corneal transplants, medical education, and research. The Eye Bank has headquarters in Birmingham and regional offices in Huntsville, Mobile and Montgomery. Alabama Eye Injury Registry This registry, based in Birmingham, tracks eye injuries and outcomes, providing a database for physicians on ways to minimize damage and, when possible, partially restore vision in the event of eye injury. Alabama Institute for Deaf and Blind The Alabama Institute for Deaf and Blind is a comprehensive education, rehabilitation and service program for children and adults who are deaf, blind and multidisabled. AIDB services include early intervention, traditional and nontraditional education and vocational programs, rehabilitation and employment opportunities for clients of all ages ranging from infancy through senior citizens. AIDB includes four residential schools and an industrial venture in Talladega and eight regional centers serving every county in the state. Following is a summary of its programs. Alabama School for the Blind This school provides a well rounded education program for blind and visionimpaired children ages 3 through 21 focusing on academic and vocational curriculums, championship athletics, music, independent l iving skills, assistive technology and mobility. Instructional Resource Center for the Blind This center is a statewide provider of special media materials (in Braille, large print and tape) for blind and visually impaired students and clients at AIDB, local education agencies and rehabilitation programs. Located on the ASB campus, the center maintains an equipment inventory of educational aids such as cassette recorders, Braille writers and other specialized tools, and is a full production and duplication facility for Braille and large print and recorded textbooks. All materials are available on loan, free of charge to eligible students and clients. 27 Helen Keller School of Alabama Designed for children ages 3 through 21 who are deaf, blind, deaf-blind and multidisabled, this program focuses on the unique needs of each child with an educational plan strong in independent living, motor and communication skills. The school’s transition program helps families develop a plan for integrating graduates into their homes and communities. E. H. Gentry Technical Facility This facility is a post-secondary education and rehabilitation program focused on evaluation, adjustment and vocational training for deaf and blind adults. Strong emphasis is placed on assistive technology and the Gentry program also features college preparatory and career exploration services and GED preparation. Alabama Industries for the Blind A diverse manufacturing complex, AIB provides job and career opportunities for blind persons who prefer to be tax producers and not tax consumers. AIB employees produce more than 100 items including all the military neckties for the U.S. Armed Forces. Office of Health, Evaluation and Outreach This office coordinates health-related programs, evaluation, admission and outreach services for students and clients. Health care services include psychology, audiology, physical therapy, low vision, nursing, dental and orthopedic clinics. Low Vision Clinic In cooperation with the University of Alabama at Birmingham School of Optometry, AIDB’s low vision department offers clinics, assessments and technical assistance for optimal diagnosis, treatment and understanding of eye and vision care. The on-campus clinic is furnished with up-to-date equipment and a digital video imaging system allows the transmission of eye images directly to the office of consulting physicians. A consulting ophthalmologist who is a glaucoma specialist also works with the program to follow students with glaucoma. Elderaction Elderaction currently provides audiological and vision screenings for seniors in most areas of the state and offers a hearing aid repair service for residents 28 of Northeast Alabama through a grant from the East Alabama Commission on Aging. Counseling and in-service training is available statewide for caregivers and those working with older people with sensory loss Marianna Greene Henry Special Equestrians This program combines horseback riding with physical therapy for a motivating and beneficial exercise experience for blind children and adults. The MGH Arena is one of the largest in the Southeast and the hippotherapy program is nationally accredited. Regional Centers The regional centers are designed to address the needs of blind and vision impaired children and adults in their home communities. AIDB’s outreach programs serve all 67 counties of the state through eight regional centers located in Auburn, Birmingham, Dothan, Huntsville, Mobile, Montgomery, Tuscaloosa and the Shoals. The Parent Infant Preschool Program provides early intervention, inhome education and counseling for infants, toddlers and their families. Regional centers also offer Kinderprep classes for preschoolers. Adult Services include counseling, mobility, assistive technology training, transportation, information and referral and other services as needed in individual communities. Alabama Lions Sight Conservation Association, Inc. A project of Alabama Lions, ALSCA provides eye services to medically indigent patients throughout the state, including eye exams, glasses, contact lenses, low vision aids, prescription medications, prosthetics and surgery/hospitalization. Traveling eye screening services also are delivered through the ALSCA Mobile Screening Unit. ALSCA headquarters are located in Birmingham. Alabama Public Library Service, Regional Library for the Blind and Physically Handicapped Based in Montgomery and accessible throughout the state library network, the regional library provides services for the blind and physically handicapped, including circulation of books, magazines and other reader advisor services. Alabama Radio Reading Service Network Designed for the blind and physically handicapped, this network provides access to in-depth coverage of local and national news, consumer information, books, 29 magazines and entertaining features through programs broadcast seven days a week. Alabama State Department Of Education--Services For The Blind & Vision Impaired The State Department of Education mandates that all students with disabling conditions, such as blindness or low vision, be provided an individual educational plan addressing their special assistive technology needs. Educational services, orientation and mobility, and other adapted activities are provided from pre-school through 12 th grade through local school systems throughout the state and coordinated with each school’s coordinator of special education. American Diabetes Association With headquarters in Birmingham, the Alabama division of the American Diabetes Association sponsors education, research and service programs regarding the prevention and treatment of diabetes, including potential complications leading to vision loss or blindness. Screenings for diabetic retinopathy are conducted in some areas at various times during the year. Birmingham Museum of Art—Visually Impaired Program A national leader in museum tours created specifically for sight-impaired visitors, the museum features a program called Hands Across Art which provides tours led by specially trained docents and sight guides and includes three-dimensional tactile reproductions of European and American paintings and art. Helen Keller Foundation for Research and Education Based in Birmingham, this foundation’s mission is to end blindness through medical research, rehabilitation and public education. Among the programs it supports is the Eye Injury Registry, a database for physicians which provides ways to minimize damage and, when possible, partially restore vision in the event of eye injury. International Retinal Research Foundation Based in Birmingham, the mission of the IRRF is to support research on eye diseases, especially diabetic retinopathy and age-related degeneration of the retina, including the macula. 30 Kid One Transport This statewide transport system provides free rides to children who are suffering from a medical, mental or physical illness, including eye conditions, and whose families have no transportation of their own. Knights Templar Eye Foundation, Inc. A national organization that, through state networking efforts, provides assistance to people who face loss of sight due to the need for surgical treatment but who are unable to pay or receive adequate assistance from current government agencies or similar sources. It also provides funds for research in curing diseases of the eye. The Alabama office is located in Birmingham. Liz Moore Low Vision Center Located in Birmingham at Medical Center East, the goal of this center is to assist people throughout Alabama with low vision to use their functional vision to the utmost capacity. This is accomplished through evaluation, training, counseling and education, referral to other agencies, support groups and other activities. Mobile Association For The Blind Located in Mobile, this program provides mobility training, rehabilitation, work adjustment training, employment preparation service and job placement for individuals who are blind or visually impaired. Sight Savers Of Alabama—The Children’s Eye Care Network Based in Birmingham, this program provides eye services to low-income patients, including the medically indigent, throughout the state. These services include eye exams, glasses, contact lenses, vision screening, low vision aids, prescription medications, and surgery. This outreach program emphasizes identifying needy children whose visual impairments have been overlooked or neglected and then obtaining the appropriate treatment and follow-up in a timely manner. Sight Savers has patients throughout Alabama, but its efforts are concentrated in the greater Birmingham area. Special Equestrians This program, based in Indian Springs near Birmingham, provides therapeutic/recreational horseback riding for Alabamians with disabilities, including blindness and low vision. University of Alabama at Birmingham 24-Hour Eye Emergency Room, Callahan Eye Foundation Hospital 31 The only round-the-clock eye emergency room in Alabama, this program provides emergency eye care, including diagnosis, medical and surgical treatment. Lion’s Eye Clinic, Callahan Eye Foundation Hospital The Lion’s Eye Clinic provides eye exams, patient and family training, and referrals for low vision assistance, transportation and other services. It is located at the University of Alabama at Birmingham and serves Alabamians who are indigent. School of Education, Visually Impaired Program This program provides graduate teacher training in blindness/deaf-blindness. It is the only such program in Alabama. Department of Ophthalmology The mission of the department is the prevention and treatment of eye disease and vision impairment through medical education, patient care, research and public service. Among its education services is the only ophthalmology residency program in Alabama. Research conducted in the department includes investigation into basic mechanisms of the eye and eye diseases and applying laboratory findings to developing and evaluating new treatments. Driving Assessment Clinic, Department Of Ophthalmology Located at the Callahan Eye Foundation hospital, this program provides driving assessment, including risk assessment and on -road evaluation, for patients with visual and/or cognitive impairment. School Of Optometry Widely considered the best optometry school in the nation, the UABSO includes programs in educational training for optometrists, vision science research, and service and outreach initiatives in Alabama and beyond. School of Optometry Community Vision Services This mobile unit conducts vision screenings for children (ages three and up) and adults; eye health exams, including dilation, for adults; triage to specialty groups; and in-service training for various groups, primarily within the Birmingham metropolitan area. School of Optometry Eyecare for the Homeless 32 Serving the Birmingham metropolitan area, this program provides eye exams and glasses for homeless men and women. Eligibility is based on admittance to local homeless shelters. School of Optometry Low Vision Clinic Located in Birmingham, this program offers comprehensive eye exams, non-surgical management of acute and chronic eye disease, surgical comanagement, and low vision rehabilitation services to people of any age with vision impairment. The primary low vision clinic in the state, it also has an affiliated clinic at the Alabama Institute for Deaf and Blind in Talladega. School of Optometry Vision Science Research Program The mission of this center is to promote vision science research, facilitate collaborative research, and add to the scientific knowledge of the eye and central visual pathways leading to improved diagnosis, treatment and prevention of blindness and visual impairment.. University of South Alabama College of Medicine, Department of Ophthalmology Located in Mobile, the USA Department of Ophthalmology offers education, research and service programs with expertise in a wide range of ophthalmic diseases and conditions, including low vision. The department has offices in the Health Services Building located on USA’s main campus and in Baldwin County. Very Special Arts This statewide organization, based in Birmingham, provides opportunities for people with visual and other impairments in the arts, both visual and performing arts. Veterans Administration Southeastern Blind Rehabilitation Center Located in Birmingham, this program provides comprehensive services for low vision and blindness to veterans in Alabama and throughout the Southeast. V.I.P.—Visually Impaired People Who Are Very Important People Based in Selma, V.I.P. provides recreation and socialization activities for the visually impaired. 33 Workshops, Inc. Located in Birmingham, Workshops, Inc. provides on-the-job vocational training, counseling and related employment services to people with disabilities, including blindness and low-vision. The following table illustrates the type of low vision, rehabilitation and other special eye services provided by the organizations previously listed. Again, the depth and breadth of these services varies greatly. 34 Table II-5 Providers Of Low Vision, Rehabilitation And Other Special Eye Services Organization Ala. Asso. For Parents of Visually Impaired Ala. Child Caring Foundation Ala. Deaf-Blind Project ADRS-Early Intervention ADRS-Children’s Rehabilitation ADRS-Vocational Rehabilitation ADRS-OASIS Daily Living Skills/ Mobility Training Family Training Job Skills & Training Eye Exams, Surgery &/or Restoration Low Vision Evaluations Vision Aids & Adaptive Equipment Low Vision Training Transportation Assistance Support Groups X X X X X X X X X X X X X X X X X X X X X X X X X X X X X X X X X X X X X X Ala. Eye Bank Ala. Eye Injury Registry Ala. Institute for Deaf & Blind Ala. Lions Sight Conservation Ala. Public Library Service Ala. Radio Reading Service Ala. State Dept. of Education American Diabetes Asso. Birmingham Museum of Art Callahan Eye Foundation Hospital 24-hr. ER CEFH Lions Eye Clinic Driving Assessment Clinic Helen Keller Foundation Eye Research &/or Other Special Efforts X X X X X X X X X X X X X X X X X X X X X X X 35 Organization International Retinal Research Foundation Kid One Transport Knights Templar Eye Foundation Liz Moore Low Vision Center Mobile Asso. For the Blind Sight Savers of Alabama Special Equestrians UAB Dept. of Ophthalmology UAB School of Educ.-Visually Impaired Program UAB School of Optometry USA Dept. of Ophthalmology Daily Living Skills/ Mobility Training Family Training Job Skills & Training Eye Exams, Surgery &/or Restoration Low Vision Evaluations Vision Aids & Adaptive Equipment Low Vision Training Transportation Assistance Support Groups Eye Research &/or Other Special Efforts X X X X X X X X X X X X X X X X X X X X X X X X X X X X X X X X X Very Special Arts VA Southeastern Blind Rehab Center V.I.P. X Workshops, Inc. X X X X X X X X II-Summary This overview shows that, as expected, ophthalmology services tend to be available in larger communities, while optometrists practice in smaller as well as larger communities. Rehabilitation services are more centralized geographically, and are also fragmented according to the population served. Demographic factors also affect service distribution: there are more ophthalmologists located in 36 the Baldwin County area than would probably be expected by population size. This is probably related to the growing retiree population in the area. Services provided by ophthalmologists require more patient travel than services provided by optometrists. Many counties fall into different catchment areas for different types of rehabilitation services. Different types of clients are eligible for different types of services, which are provided in different locations, thus complicating referral and patient travel for care. Many rural areas of the state are distant from any eye service providers. 37 III What services are provided by ophthalmologists, optometrists? To address this question, the needs assessment undertook a survey of ophthalmologists and optometrists in the state. In this chapter we summarize the extent to which these eye care providers routinely provide preventive, diagnostic, treatment, and rehabilitative services. We also describe the extent to which the availability of these services differ among Birmingham, other major metropolitan areas (Huntsville, Mobile, Montgomery and Tuscaloosa), and the rest of the state. Methods Project staff developed a four page, 37 item questionnaire for optometrists and ophthalmologists. The survey was developed based upon discussions with the Alabama Eye Institute executive committee, information from the National Eye Institute, and the health services research literature on eye care. A draft was reviewed by members of the AEI executive committee, their designates, and faculty in the UAB School of Optometry. The final survey instrument is contained in Appendix B. In late September 1999, the survey was mailed to 163 ophthalmologists and 238 optometrists practicing in Alabama using mailing lists provided by AEI. In addition, copies of the survey were distributed to attendees at the Alabama Ophthalmological Society meetings in Gulf Shores, AL in August. Of the 402 surveys mailed, 22 were returned as undeliverable. 134 were completed and returned. This yielded an overall response rate of 35.3 percent.1 Of the returned surveys, seven were completed by non-ophthalmologist or nonoptometrist responders. These were excluded from the analysis, yielding a useable response rate of 34.0 percent. The response rate for ophthalmologists was 38.1 percent, and 30.0 percent for optometrists. These rates are comparable to small employer surveys which typically achieve response rates of 19 to 48 percent.2 1For purposes of calculating response rates, the conference attendees are considered a subset of those on the mailing lists. 2Gail A. Jensen and Michael A. Morrisey, “Managed Care and the Small Group Market,” in M.A. Morrisey, ed., Managed Care and the Changing Health Care Market (Washington: AEI Press, 1988), p. 57. 38 Characteristics of Respondents A plurality of respondents (44.5 percent) were from the Birmingham area, 23 percent were from other major metropolitan areas (Huntsville, Mobile, Montgomery, and Tuscaloosa), and the remaining 32.5 percent were from other counties. For the most part, respondents were experienced practitioners. Less than two percent of respondents had been in practice for less than one year; 81 percent had been in practice for more than five years. Rural providers tended to have less experience on average, but even so, 71 percent of rural respondents had been in practice for over five years. In a typical week, the average responding ophthalmologist saw 122.2 patients; the average optometrist saw 69.7 patients. The survey did not inquire about the fulltime or part-time nature of a practice. Preventive Service Provision Table III-1 presents the percentage of optometrists and ophthalmologists routinely providing selected preventive services. In general, preventive services were readily available from Alabama practitioners. Newborn and young child vision screening was the preventive service least likely to be provided. There were no meaningful differences in the provision of preventive services across the urban and rural county groupings. Table III-1 Percentage of Respondents Providing Preventive Services Ophthalmologists Optometrists 78.7 % 83.3 % Instruction on the proper care of contact lenses 80.3 100.0 Education on hygiene to prevent spread of conjunctivitis 91.8 98.5 Glaucoma screening to identify asymptomatic individuals with elevated intra-ocular pressure 85.2 95.5 Newborn and young child vision screening 60.7 66.7 Instruction on the use of protective eye wear in hazardous occupations and activities 39 Optometrists were more likely to routinely provide each of the services than were ophthalmologists. This difference was most pronounced in the instruction on the proper care of contact lens where nearly 20 percent more optometrists routinely provided the service. The difference was least in instruction on the use of protective eye wear in hazardous occupations and activities. Diagnostic Service Provision Table III-2 presents the percentage of respondents routinely providing diagnostic services. Comprehensive adult and pediatric eye examinations were provided by virtually all practitioners, as were optical exams for refractive errors. Optometrists were slightly more likely to provide these services than were ophthalmologists. Table III-2 Percentage of Respondents Providing Diagnostic Services Ophthalmologists Optometrists 91.8 % 98.5 % Comprehensive adult eye examination 93.4 98.5 Comprehensive pediatric eye examination 83.6 90.9 Specialized diagnostic procedures: angiography, ultrasound, electrophysiology 45.9 13.6 59.0 19.9 66.9 15.2 Optical exam for refractive errors Culture for conjunctivitis Corneal scraping for culture, corneal biopsy In contrast, more specialized diagnostic services were at least three times more likely to be routinely provided by ophthalmologists. Fifty-nine percent of ophthalmologists routinely provided cultures for conjunctivitis, for example, compared to only 20 percent of optometrists. 40 Importantly, however, not all ophthalmologists provide these specialized services. Less than half (45.9 percent) of responding M.D.s routinely provide angiography, ultrasound, or electrophysiology procedures. There were urban-rural differences in specialized diagnostic services. Ophthalmologists in rural counties were more likely to routinely provide these services than were those in the Birmingham area. This probably reflects specialization within the larger metropolitan area. Treatment Services Provision Table III-3 presents the percentage of ophthalmologists and optometrists routinely providing eye treatment services. The pattern is similar to that of diagnostic services. The less complex treatments were widely available. Optical correction, for example, was routinely provided by 97 percent of optometrists and 82 percent of ophthalmologists. As with diagnostic services, optometrists were somewhat more likely to provide these less complex services. Note that optometrists are not licensed to provide surgical interventions. Table III-3 Percentage of Respondents Providing Treatment Services Ophthalmologists Optometrists 82.0 % 97.0 % Occlusion, defocusing, defogging (for amblyopia) 75.4 77.3 Topical treatment for infections 96.7 97.0 Topical treatment for reduction of corneal edema and of intra ocular pressure 93.4 90.9 Keratorefractive surgery 54.0 0.0 Cataract removal 82.0 0.0 Corneal transplant 41.0 0.0 88.5 0.0 Optical correction Other incisional ophthalmologic surgery (glaucoma, eye muscle, eyelid) 41 Therefore, more complex eye treatments such as keratorefractive surgery and corneal transplants were only provided by ophthalmologists. Ophthalmologists differed widely in the extent to which they routinely provided these services. Only 41 percent provided corneal transplants, while over 88 percent provided “other incisional ophthalmologic surgery.” M.D.s in Birmingham were less likely to provide the specialized procedures than were ophthalmologists in either the other urban or the rural areas. Only 30.8 percent of Birmingham M.D.s routinely provided corneal transplants, while 55 percent of those in other urban areas did so, and 40 percent of rural physicians did. Presumably this reflects a higher degree of sub-specialization within the larger Birmingham market. The survey was not designed to provide information on the volume of specific procedures performed. 42 Rehabilitation Service Provision Finally, Table III-4 summarizes the extent to which responding Alabama ophthalmologists and optometrists routinely provide rehabilitation services. Unlike the other eye care services, these were infrequently provided. Virtually all of the services were routinely provided by fewer than half of providers. For example, only 49 percent of ophthalmologists and 42 percent of optometrists provide assessments of functional disability and adaptation skills. Less than 12 percent of M.D.s and less than 15 percent of ODs provided training in adaptations for activities of daily living. Table III-4 Percentage of Respondents Providing Rehabilitation Services Ophthalmologists Optometrists 49.2 % 42.4 % 39.3 54.5 Training in use of magnification, lighting and contrast enhancement, maximizing residual vision 23.0 50.0 Training in adaptations for activities of daily living 11.5 14.7 Counseling on the impact of low vision (e.g., vocational, mobility, job placement, adaptive equipment) 21.3 37.9 Assessment of functional disability and adaptation skills Low vision exam The lack of rehabilitation services provided by optometrists and ophthalmologists was particularly acute outside of Birmingham. In Birmingham approximately 23 percent of these providers routinely provide training in adaptations for activities of daily living, for example. Only 10 percent and 12 percent, respectively, of providers in other urban and rural counties routinely did so. As we show in the next chapter, providers are aware and concerned about the lack of availability of rehabilitation services. 43 III-Summary When ophthalmologists and optometrists are present, the full range of preventive, diagnostic, and treatment services are available. In general, optometrists are somewhat more likely to routinely provide preventive services and less complex diagnostic and treatment services than are ophthalmologists. Ophthalmologists are much more likely to routinely provide more complex diagnostic and treatment services. In general, the Birmingham area is more sub-specialized than elsewhere in the state. General ophthalmologists in Birmingham more often refer patients to specialized ophthalmologists for complex procedures. 44 IV What do eye care providers perceive to be major needs? This question was addressed by the optometrist and ophthalmologist survey described in Chapter III. We asked four sets of questions of Alabama optometrists and ophthalmologists. First, we asked which particular preventive, diagnostic, treatment, and rehabilitative services was the most difficult to make referrals. Second, we asked which three eye care services were the most difficult for people to obtain, and in the judgment of the provider, what were the major reasons for these difficulties. Third, we asked providers to identify the greatest unmet eye care need in their communities. Finally, we asked what single action by a private foundation, such as the Alabama Eye Institute, would make the greatest improvement in eye care in their communities. These last two questions were also posed to the rehabilitation and support service providers who received a second survey mailed out in December 1999 (see Appendix C). In this chapter we also report their responses to these inquiries. Difficulties in Making Referrals Table IV-1 reports the extent of difficulty in making referrals in Alabama for eye care services. A relatively large number of providers, nearly 29 percent, found difficulty in making referrals for rehabilitation services. Nearly 60 percent of those identifying difficulty referring for rehabilitation services indicated that low vision services were the area of greatest concern. This finding was common among both ophthalmologists and optometrists. Table IV-1 Most Common Referral Difficulties Reported by Ophthalmologists and Optometrists (N= 134) Rehabilitation Percent Identifying a Difficulty 28.6% Greatest Referral Difficulty (Percent of those identifying any difficulties) Low Vision Rehabilitation (58%) Diagnostic Services Treatment Services 13.5% 13.5% Specialized diagnostic services Neuro-ophthalmic treatment Low Vision Aids (41%) (18%) (12%) Prevention Services 10.3% Screening for high risk groups (31%) 45 There were few difficulties with preventive, diagnostic or treatment services. Only 10 to 14 percent of providers indicated any difficulties in making referrals for these types of services. Of those who did, ophthalmologists and optometrists agreed that screening for high risk groups, and specialized diagnostic services were the most common referral difficulties. M.D.s and O.D.s did differ over referral difficulties for treatment services. M.D.s found neuro-ophthalmic treatment referrals problematic, while O.D.s indicated that referrals for low vision aids were difficult. However, these reflect comments by only 3 ophthalmologists and 2 optometrists and may not be generalizable. Difficult to Obtain Services The preceding analysis focused on provider difficulty in making referrals. Even with easy referrals, people may nonetheless forego clinically indicated care for a variety of reasons. To address this we asked Alabama eye care providers open-ended questions about the three eye care services that they believed were the most difficult for people in their community to obtain. We then asked the providers to suggest why access to these services was difficult. The results are summarized in Table IV-2 46 Table IV-2 Eye Care Services Reported by Optometrists and Ophthalmologists to be the Most Difficult for People to Obtain Number of Providers Identifying Difficulty Reasons for Lack of Service (percent identifying each) * Cost Travel Distance Lack of Providers Lack of Social Support Low Vision 17 41% 35% 59% 18% Rehabilitation Services 10 20 20 80 10 Retinal Diagnosis and Treatment 5 ------ 80 40 20 Surgery (ocular, refractive) 5 80 ----- 20 20 Low Vision 14 57% 50% 64% 36% Rehabilitation Services 10 30 40 60 20 Retinal/Special Services 6 ----- 33 83 33 Treatment 5 80 20 ----- ----- Diagnosis 4 50 75 25 25 Ophthalmologists (N=61) Optometrists (N=66) * Rows sum to more than 100 percent due to multiple answers. 47 As is clear, relatively few providers, either ophthalmologists or optometrists, indicated that people in their communities had difficulty obtaining needed services. While there were some differences in emphasis, the M.D.s and O.D.s also tended to agree on the gaps in services and the reasons for them. Both groups believed that low vision services were the most difficult for people to obtain. Clear majorities attribute this to a lack of providers, followed by the cost of care, and travel distance. Similarly, both M.D.s and O.D.s believed that rehabilitation services were relatively difficult to obtain, again because of lack of providers as well as travel distance and cost. Retinal diagnosis and treatment was the third most commonly mentioned difficult service. Surgery (or treatment generally) followed by diagnosis completed by common responses. Greatest Unmet Need The needs assessment survey of ophthalmologists and optometrists asked two additional open ended questions. The first was “What are the greatest unmet eye care needs in your community?” Many respondents chose not to reply to this question. The 85 responses we did receive were sorted by content and enumerated. We did not distinguish between the responses of ophthalmologists and optometrists. 1. Low Vision and Rehabilitation Services The most common response to the question concerning unmet needs was the need for low vision and rehabilitation services (28 responses, 33% of all responses). Sample comments in this category include the following: “I have given up on low vision care for most patients. Older patients with a need for low vision devices are frustrated by the cost, the difficulty in obtaining assistance for payment, and I believe a lack of acceptance for such devices. In ____ County, there are more than enough providers of the other services, and all in close proximity.” “_____ County is one of the poorest counties in the state, with a large proportion of African Americans. We have a number of patients whose lives could be improved with low vision aids such as CCTV Reading monitors which cost between $1,700 and $2,800 each. Very few patients can afford this so they are unable to read.” 48 “Rehabilitation services – they are expensive and most insurance companies do not reimburse providers for these services so the cost is passed on to the patient.” “Teaching elderly individuals with loss of macular function how to cope with daily living.” 2. Financial Support The second most common response to the question concerned financial support for services provided to low income patients (19 responses, 22% of all responses). Sample comments include the following: “Some patients are not able to afford their glaucoma medications.” “Glasses/medications for indigent patients.” “Paying for surgery for those patients not eligible for Medicaid and too poor to afford insurance.” “I see mostly children. Financial (insurance) resources are still a problem. Early diagnosis of many problems will continue to be a problem. Many children do not see pediatricians and also do not have any eye evaluations until they are out of the amblyogenic age and it is too late to treat.” “We need more eye care professionals in this area to accept Medicaid. The few that do are inundated with patients. If everyone took it then there would be less burden on each practice. As you know, Medicaid does not pay enough to cover overhead.” “Need for coordination for eye care services for the working poor. There are programs such as Vision USA, Sight savers, etc., but there is a lack of a specific plan for such services.” 3. Local Specialty Services The third most common response to the question concerned specific specialty services in local areas (13 responses, 15% of all responses). These included 4 (30%) responses listing retinal specialists, 4 (30%) responses listing pediatric and developmental vision services, 3 (23%) listing neuroophthalmology, 1 (8%) listing nursing home care services, and 1 (8%) listing iritis work-up availability. 4. Public Education 49 The fourth most common response to the question of unmet community needs referred to public education needs (12 responses, 14% of all responses). Sample comments include the following: “Education regarding risk factors for blinding ocular diseases and prevention.” “Education regarding who is at risk for injury and how and why injury can be prevented.” “A general belief that eye care on a routine basis is less important than routine dental care (i.e., lack of understanding or education). “Public education regarding – what is proper eye care, - who should provide that care, - appropriate avenue to pursue in obtaining that care.” 5. Screening Services The fifth most common response to the question referred to the need for screening services (8 responses, 9% of all responses). Five of these responses referred to the need for screening young children for vision problems, including the following comment: “Many children in elementary school are known to need eye care, but go for months or even years without it. Usually this is due to financial hardship or a lack of education in the family. Sometimes it is due to parental neglect. These children need someone to be proactive and intervene to obtain their eye care needs, which many times can be resolved with eyeglasses.” In addition, one response mentioned screening for diabetic retinopathy, one mentioned the need for screening for glaucoma, and one mentioned the need for screening of high risk groups. 6. Miscellaneous comments Finally, seven respondents (8%) noted that they did not believe there were any unmet eye care needs in their communities. Three (3%) respondents commented on the need for better cooperation between optometrists and ophthalmologists. One mentioned the need for transportation, one mentioned the need for “routine care”, and one mentioned the need for emergency care at a reasonable cost. Single Action by a Foundation That Would Make the Greatest Improvement 50 The second open ended question on the survey asked respondents to comment on what single action a foundation such as A.E.I. could take that would most improve eye health in their community. The 87 responses we received to this question were similar in many ways to the responses described above, although there were somewhat different expectations for a foundation concerning action to address needs. 1. Financial Support The most common response to this question concerned financial support for care for low income patients (23 responses, 26% of all responses). Several responses described specific needs for financial support, including rehabilitation services, surgery, routine care, medications and glasses. One sample comment noted: “Provision of funds for indigent eye care. These funds should be available to cover primary, secondary and tertiary eye care, as well as glasses. When I see indigent patients (in my primary eye care setting) who require referral for secondary or tertiary care, this referral is awkward at best, because of the patient’s inability to pay.” Two comments suggested that the foundation could play a role in coordinating the services of other agencies that provide financial support. These comments were: “Fund program dedicated to providing eye care to needy Alabama citizens, so that these organizations can dedicate more of their time and efforts to helping individuals. Also help coordinate eye care services in the state so that various agencies can work together more effectively.” “Support and coordination of needed eye care services throughout the state.” 2. Low Vision and Rehabilitation Services The second most common response to the question of what single action a foundation could take that would make the greatest improvement concerned low vision and rehabilitation services (21 responses, 24% of all responses). The general idea expressed in these comments was that the Institute could actually find a way to support and deliver rehabilitation and adaptive services around the state. Sample comments include the following: “Mobile low vision services – training and devices. Our community has a large population of ARMD [age related macular degeneration] patients who are low income; they can’t travel to Birmingham and often can’t afford low vision devices.” 51 “A low vision/rehabilitation clinic. These needs are met locally only on a limited basis, due to the investment in staff and devices availability to try out. I believe our local vocational rehabilitation office provides counseling and some training, but little is done to evaluate sophisticated optical aids, etc.” 3. Public Education The third most common response concerned support for public education campaigns (15 responses, 17% of all responses). Sample comments include the following: “Public education – when asked what, next to life itself, is the most precious physical asset most patients state that it is their vision. There is, however, a woeful lack of public awareness of the most basic details of eye health. Education about visual anatomy, pathology and preventive care would provide benefits across all socioeconomic and cultural/ethnic strata.” “By maintaining good relations with ophthalmologists and the local media in order to get publicity about problems out to the public and offer the solutions which are available.” 4. Improved Cooperation Fourth were a set of comments related to improving cooperation and coordination between optometrists and ophthalmologists, and between care providers in rural areas and urban-based specialists (9 responses, 10% of all responses). The specifics of these comments were varied. Sample comments include the following: “I don’t know if your Institute can improve upon the working relationship between ophthalmologists and optometrists. There is still room for improvement, as this only hurts the patients.” ‘In my community, helping in the following areas: (1) emphasize the use of the basic services already available; (2) arrange to provide specialty services locally through the existing basic service locations; (3) foster this partnership arrangement for the betterment of the patients, the community, the providers and the future.” 5. Local Specialty Services The fifth most common set of comments were related to the supply of ophthalmologists in local communities. Although one respondent complained of an over supply, the others felt that they needed more ophthalmologists in their 52 communities, and some felt they needed more subspecialists nearby (6 responses, 7% of all responses). In addition, another set of respondents requested support for the purchase of sophisticated diagnostic equipment to be placed in local hospitals for use by local ophthalmologists, so that patients would not have to be referred out for these tests (3 responses, 3% of all responses). 5. Screening and Preventive Care A sixth set of responses related to the direct provision of screening and preventive care (5 responses, 5% of all responses). It is not clear whether the respondents meant that they thought the Institute should support the provision of these services financially, or actually employ providers who could supply these services. Sample comments included the following: “Glaucoma screening (by dilated exam and visual fields) for young African Americans (< age 50), especially relatives of known glaucoma patients.” ”Routine eye exam every 1-2 years. Patients often won’t come in if insurance won’t pay.” 6. Miscellaneous Comments Another set of respondents suggested that the Institute fund clinical and basic research on a range of eye diseases (3 responses, 3% of all responses). Finally, one respondent mentioned the need for transportation services to and from eye care providers for elderly and low income patients. Rehabilitation and Support Service Providers’ Perception of Needs Recipients of the second survey of rehabilitation and support service providers were also asked to describe “the greatest unmet needs in your service area” and “what single action by a private foundation would make the greatest improvement in eye care in your service area”. Many respondents answered these questions primarily with reference to the services they provided, while others gave more generalized comments. Greatest Unmet Eye Care Needs Eye Care Education/Awareness/Screenings Education. Vision screenings. Early identification Awareness and preventive care. 53 Access/Transportation Qualified and/or experienced professionals. Lack of certified teachers in our area Increased training in Alabama for staff to serve the blind and visually impaired Faculty support to continue the teacher training activities of the Visually Impaired Program (at the UAB School of Education). Training of professionals to serve children who are sensory impaired. Elderly Services No resources for adaptive technology. Financial assistance for low vision items and glasses for children and adults. Funding for training for assistive technology for individuals not eligible for Vocational Rehabilitation. Increased mobility and orientation services. Awareness and preventive care. Professional Training Access to basic vision care. Transportation-3 responses. Low Vision Needs Access to populations with eye and vision care needs—today’s climate of “managed” care isolates populations instead of bringing them together where services are located Education regarding eye care importance; participation in available programs; willingness to follow-up if eye problems are detected. Senior citizen services. Assistive technology for low income visually impaired seniors. Senior services. Senior education and on-site vision screenings for the four leading causes of new blindness among seniors: 1) diabetic retinopathy, 2) glaucoma, 3) cataracts, and 4) age-related macular degeneration. Children Services Vision expertise with infants and toddlers with an early education/intervention focus. 54 Financial Assistance Limited resources for clients’ medications. Funding for individuals who do not have insurance or Medicaid. Older adults facing visual impairment have extremely limited resources available in the community. Funding is needed for medical needs and equipment needs for individuals not covered by private insurance, Medicaid, Medicare or personal funds. Medical care for people who cannot afford it. Funding for surgery. Assistance in covering the cost of adaptive equipment for the blind and visually impaired. Adequate funding for eye care. Indigent care, Funding (for patient care) is the major problem. The resources are here but out of reach financially for many. Financial support for low vision devices. Low vision aids—no third party covers these important prosthetic devices. Eye glasses for the financially challenged. Funding to provide vision aids and training in their use for persons with low vision. Insurance does not cover driving assessment, even in patients with medical conditions and functional impairment. So this is our greatest need—all our services are self-pay, so this is burdensome to our patients. Vocational Needs Pediatric ophthalmologists—families must travel to Birmingham for quality medical care by specialists with skills and training to work with families of young visually impaired children. There are many children with visual problems whose eye care is neglected. This is well known in school systems and has been confirmed by numerous studies. One local study done by Sight Savers and Alabama Power showed that there was one child with neglected eye care for each child receiving the appropriate eye care. Most of these children need glasses, but some have more severe vision problems. Children without proper eye care and glasses in rural areas of the state. Increased job opportunities for the blind. Properly equipped job readiness and job club facilities for the blind and visually impaired. Job training and placement services. Other List of resources for minor eye problems. 55 Housing for adults with deaf-blindness. Interpreters who sign for persons with deaf-blindness. Social/recreation opportunities for blind. Service coordination Public education of eye donation. Public education and research materials are dependent upon the public’s donation of eye tissue. Vision correction. Single Action by a Private Foundation that would Make the Greatest Improvement Education Education and more resources for eye case load (among rehab counselors and teachers). Fund a program to emphasize/educate the populace regarding the importance of regular ongoing eye care. Notification of the availability of services. Financial Assistance Funding for adaptive technology to be used for loaner equipment for children, adults, and senior citizens would make a significant difference (i.e. magnifiers—electronic and hand held, adaptive software and computers). In some situations, low income children and working age adults may have the opportunity to get adaptive technology through organizations such as the Department of Rehabilitation Services or Medicaid. Often times, senior citizens do not have any options for assistance with the purchase of some of the more expensive adaptive technology that can help them maintain an independent lifestyle. Funding of care for populations of unmet eye care needs patients—i.e. the working poor not covered by Medicaid. Funding of major low vision care initiatives. Funding for clinical trials and other related eye and vision care resource. Funding for children’s (eye) programs, such as summer camp, Space Camp. Replacement funding when Vision Service Plan completes its commitment to Alabama’s low income children in 2001 (administered through the Alabama Child Caring Foundation). Fund a program to match contributions of in-kind services value and/or monetary donations to provide services. A controlled fund of money to be used toward solving the needs of affordable eye exams, glasses, technology (including computers with JAWS, etc.), funds for reader services. Make more funding available for actual eye care, not just equipment. Awareness coupled with providing resources for program development. 56 Professionals Grant support will enable every organization serving the visually impaired to reach more individuals in the state. Increasing the resources of service providers will allow them to add staff if needed, subsidize the costs of services delivered to low income individuals, and to expand outreach efforts, better informing citizens throughout the state of services available to them. Without question, funding programs to provide eye are to children with neglected vision problems. Successful treatment at an early age, in a timely manner, benefits the long term social and educational development of these children. Recruiting of pediatric ophthalmologists and vision certified educators. Long term action: Create a school of blind studies that would house the following training areas--Orientation and Mobility Certification-BS and MA levels, Blind Development and Placement Training special studies and BS level, Rehabilitation Teaching Certification, BS and MA levels. Why? These areas are where the real need is, and to serve the blind and visually impaired in this state, these areas are the hardest to recruit for and to obtain training for on a consistent basis. Directly affecting the quality and level of services to the blind and visually impaired. Assistance with training of professionals in education/rehab for blind and deaf-blind, including interpreters. Since the Visually Impaired Program trains teachers in a “low incidence” disability, we don’t have large numbers of students. This negates university support of faculty. We are successful with tuition support (recruitment of trainees, etc.) but desperately need long-term support or seed dollars to begin an endowed faculty position so our program will not close. AEI could assist in collaboration of other Alabama agencies, (AIDB, UAB, Alabama State Department of Education) to provide long term funding/planning. Support of educational mission of eye and vision care programs in Alabama (i.e. endowed chairs, endowed research funds, endowed special population care funds). Elderly Services Senior services: public awareness, lending library of adaptive items. One, technology provides the most benefit in assisting a visually impaired person to function in his environment. Funding for adaptive technology to be used for demonstration and use in the home on short term loan basis would meet a real need for low income visually impaired seniors. There is also a need for direct services from a low vision specialist in the early intervention area, and in support services (technical assistance) to local education and community agencies. 57 Low Vision Low vision clinic with easy accessibility for persons in our service area. Assistance with appropriate examination/prescription of low vision devices and purchase or loan of this equipment. Provide a large grant to help us meet our “greatest unmet needs” (low vision aids—no third party covers these important prosthetic devices; eye glasses for the financially challenged). It should have a responsible level of guidelines but minimal “red tape.” Why? 1)There is significant need. 2)There is no third party coverage for low vision aids. Provision of a system whereby persons with vision impairment could receive low vision aids and training in their use as well as other rehab services at reduced or no cost dependent upon their income. Most low vision patients are living with a fixed income that barely meets their minimum needs. They have no extra for low vision aids/exams. Funding is needed for equipment needs for individuals of all ages. Funding for low income low vision clients. Additional funding to identify visually impaired children and adults. Funds for the purchase of assistive technology for demonstration and dispensing purposes, equipment needs (for low vision) and funds for for purchase of glasses and glasses repair. Funding to open, train and operate a low vision department. Funds are very much needed to sustain the Driving Assessment Clinic (at UAB Department of Ophthalmology) operation because our services are not currently reimbursable in Alabama. Rural Eye Care Providing equipment to utilize with older adults determining their needs to improve their quality of life. This equipment would allow us to provide support services to this population as they continue to maintain an active lifestyle. Provide funding for service coordinators in order to reach more seniors and provide indepth and ongoing case management services required, such as scheduling appointments and linkage with agencies such as the Department of Human Resources, Alabama Rehabilitation Services, Green Thumb, and other members of the aging network. Mobile medical assistance in rural counties, accessibility for low vision aids, surgery, etc. People in rural counties often do not have the transportation or means to get to Birmingham. Vocational Needs 58 Medications Need for long term eye medications such as those needed for glaucoma, surgery, hospitalization (low vision aids). Those that may not be eligible for vocational rehab services need the above assistance. Transportation Short term action: (More assistance so) that blind and visually impaired individuals can prepare for the world of work and be able to access the job markets and information available. This is one of the greatest needs in our area and is a major barrier in preparing a blind and visually impaired individual for work and getting them there. Availability of long term medical care and treatment for individuals who have met with a degree of successful vocational rehabilitation but still don’t have the resources to acquire medical care: medications, laser, annual or semi-annual checkups and long term ongoing treatment. Funding for transportation. Additional funding to support transport related expenses. Other To be able to connect with AEI to be able to provide those services that fall outside the realm of “medical.” There are so many needs: support groups (families and adults), assistive technology training, advocacy for the blind community, public education on eye care, etc. IV- Summary Providers of eye care perceive an absence of rehabilitation training and equipment aids available for their patients with severe vision problems. This need is not limited to those who are unable to afford such services. In some places they are believed to be not conveniently available for any patients. While it is clear from this review that there are, in fact, publicly sponsored rehabilitation services and other non-profit eye care services around the state, ophthalmologists and optometrists perceive a difficulty making referrals. The rehabilitation providers themselves describe needs for expanded capacity to serve clients, financial support for clients and the need for more trained staff. Providers of eye care also noted the need for more public education to increase awareness of the need for routine preventive care to prevent and treat eye problems. In some cases, active outreach is needed to be sure that potential clients make contact with providers. 59 Many providers are in contact with patients who would benefit from eye health services, but who cannot afford them financially. Financial support for eye health services and vision aids is perceived to be an important need. There is a perceived need for improved availability of specialty eye health services outside of major urban areas. Additionally, there is a perceived need to link patients who need services with providers who have the capacity to serve additional patients. 60 V What are the major gaps in service availability for eye health problems? So far this needs assessment has reviewed the major eye health problems facing the Alabama population, examined the distribution of service providers available to address these problems, explored which services are available from these providers and described the care providers assessment of major eye health needs. This brief chapter presents a list of the major gaps in service availability for eye health problems based on this information. They are presented in order based generally on the largest number of people affected by the problem. Note this is not necessarily a priority order for the most important eye health needs. 1. There is a need for public education concerning the importance of routine screening and preventive eye care. Both visual problems for young children and serious eye diseases with nonsymptomatic early stages, such as glaucoma and diabetic retinopathy, can be treated and improved if identified early. Both optometrists and ophthalmologists can provide these services, so they are geographically available in most parts of the state. However, eye care providers believe that the public is generally not aware of the importance of this care. In particular, children may be deprived of vision care because their caretakers are unaware of their needs and available resources. 2. There is a need for financial support for eye health services. Approximately 18% of the Alabama population is uninsured, and this proportion is likely to grow. Even state residents who have insurance may not have coverage for preventive eye services. As many providers pointed out, funds are needed to pay for vision aids and rehabilitation services for individuals with other types of health insurance. Cost is clearly a barrier for many individuals needing treatment for eye problems. While some organizations provide reduced-fee eye health services, these are not widely available around the state. 3. There is a need for greater availability of rehabilitation and adaptation aids and services. Permanent vision impairment from a variety of ailments is not uncommon, particularly for elderly individuals. As the elderly portion of the population increases, such vision impairments will be increasingly common. There are a 61 number of adaptive aids and skills that would be helpful for these individuals, but there are relatively few providers of aids and training in the state. Cost barriers are also a problem for these services. In addition, it appears that there is not a systematic referral system that enables potential clients to identify available rehabilitation services, and some services have waiting lists for clients. 4. There is a need for improved geographic access to specialty services. Several providers noted that they must refer patients long distances for specialty services, including retinal care and pediatric ophthalmology. They felt that provider scarcity and travel distances constituted important barriers to receiving needed care. There was an interest in improving local cooperation between optometrists and ophthalmologists and strengthening local care systems. In related comments, some organizations described the need for better linkages between available services and patient populations, particularly when they are geographically distant from each other or when the individuals involved are not knowledgeable or mobile. 62 Appendix A References for Epidemiology of Eye Disorders 63 REFERENCES 1. National Advisory Eye Council. VISION RESEARCH--A NATIONAL PLAN: 1999-2003, EXECUTIVE SUMMARY. Bethesda, MD: National Institutes of Health, 1998. NIH Pub. No. 98-4288. http://www.nei.nih.gov/publications/plan/plan.htm Diabetic Retinopathy 1. Leibowitz HM, Kruger DE, Maunder LR, Milton RC, Kini MM, Kahn HA, Nickerson RJ, Pool J, Colton TL, Ganley, Lowenstein JI, Dawber TR. The Framingham eye study monograph. Surv Ophthalmol 1980; 24 (Suppl):335610. Retinoblastoma 1. Weir HK, Holowaty EJ. The incidence of pediatric cancer in Ontario (19751985). An investigation of unconfirmed cancers. Chronic Dis Canada 1993; 14:126-130. 2. Mahoney MC, Burnett WS, Majerovics A, Tanenbaum H. The epidemiology of ophtalmic malignancies in New York state. Ophthalmol (Rochester) 1990; 97:1143-1147. 3. Tamboli A, Podgor MJ, Horm JW. The incidence of retinoblastoma in the United States: 1974 through 1985. Arch Ophthalmol 1990; 108:128-132. Retinitis Pigmentosa 1. Pagon RA. Retinitis pigmentosa. Surv Ophthalmol 1988; 33:137-177. 2. Bunker CH, Berson EL, Bromley WC, Hayes RP, Roderick TH. Prevalence of retinitis pigmentosa in Maine. Am J Opthalmol 1984; 97:357-365. Macular Degeneration (Age-related) 1. Leibowitz HM, Kruger DE, Maunder LR, Milton RC, Kini MM, Kahn HA, Nickerson RJ, Pool J, Colton TL, Ganley, Lowenstein JI, Dawber TR. The Framingham eye study monograph. Surv Ophthalmol 1980; 24 (Suppl):335610. 2. Klein R, Klein BEK, Linton KLP. Prevalence in age-related maculopathy: The Beaver Dam eye study. Ophthalmol (Rochester) 1992; 99:933-943. 3. Krumpaszky HG, Klauss V. Epidemiology of Blindness and Eye Disease. Ophthalmologica 1996; 210: 1-84. 64 Keratoconus 1. Bechrakis N, Blom ML, Stark WJ, Green WR. Recurrent keratoconus. Cornea 1994; 13:73-77. 2. Kennedy RH, Bourne WM, Dyer JA. A 48-year clinical and epidemiologic study of keratoconus. Am J Ophthalmol 1986; 101:267-273. Cataracts 1. Sperduto R, Hiller R. The prevalence of nuclear, cotical, and posterior subcapsular lens opacities in a general population sample. Ophthalmology (Rochester) 1984; 91:815-818. 2. Leibowitz HM, Kruger DE, Maunder LR, Milton RC, Kini MM, Kahn HA, Nickerson RJ, Pool J, Colton TL, Ganley, Lowenstein JI, Dawber TR. The Framingham eye study monograph. Surv Ophthalmol 1980; 24 (Suppl):335610. Primary Open-Angle Glaucoma 1. Leibowitz HM, Kruger DE, Maunder LR, Milton RC, Kini MM, Kahn HA, Nickerson RJ, Pool J, Colton TL, Ganley, Lowenstein JI, Dawber TR. The Framingham eye study monograph. Surv Ophthalmol 1980; 24 (Suppl):335610. 2. Tielsch JM, Sommer A, Katz J, Royall RM, Quigley HA, Javitt J. Racial variation in the prevalence of primary open angle glaucoma. The Baltimore Eye Survey. JAMA 1991; 266:369-374. STRABISMUS, AMBLYOPIA, AND VISION PROBLEMS 1. National Center for Health Statistics, Ganley JP, Roberts J. Eye conditions and related need for medical care among persons 1-74 years of age: United States, 1971-1972. Vital and Health Statistics. Series 11, No 228. DHHS Pub No (PHS)83-1678. Public Health Service. Washington: US Government Printing Office, March 1983. 2. Krumpaszky HG, Klauss V. Epidemiology of Blindness and Eye Disease. Ophthalmologica 1996; 210: 1-84. 65 Appendix B Survey of Alabama Eye Care Providers 66 ALABAMA EYE INSTITUTE, INC. September, 1999 Dear Colleague: We are the Alabama Eye Institute, Inc., a non-profit foundation formed with the proceeds of the sale of the Eye Foundation Hospital in Birmingham. Our board consists of independent business, medical and community leaders in Alabama. Our mission is to promote research, teaching, and indigent care related to the human eye. In order to meet this mission, we are conducting a comprehensive needs assessment of the state of eye care in Alabama. The attached survey is an important part of this study. Please take a moment to fill out this brief survey. As a member of Alabama’s eye care community, your knowledge and experience with eye health services will provide us with important information. The more responses we receive to this questionnaire, the more likely we are to gain a complete picture of eye care services in the state, and a better understanding of where the needs are greatest. The questionnaire is anonymous. We ask only your county and type of practice to add to our inventory of available services. Please complete the survey and return it to us in the enclosed envelope. Thank you so much for your help. If you have any questions, please speak with Ms. Torrey Smitherman. Her number in Birmingham is 205-325-8508. Sincerely, Torrey Smitherman Executive Director Hartwell Davis Chairman, Board of Trustees Attachment 700 SOUTH 18TH STREET - SUITE 601 - BIRMINGHAM, ALABAMA 35233 67 PHONE 205-325-8508 - FAX 205-325-8532 ALABAMA EYE INSTITUTE, INC. Survey of Alabama Eye Care Providers What type of eye care provider are you? ____Ophthalmologist ____Optometrist ____ Optician ____ ____ Rehabilitation Service Provider Other (please identify __________________) Please indicate the Alabama county in which you predominately practice: __________________________ Please indicate the number of years you have practiced in this county: ____Less than 1 year ____1 to 5 years ____More than 5 years Please indicate the number of patients you see in a typical week: _________ For each of the following types of eye services, please circle whether you routinely provide the service, whether you routinely receive referrals for this service, and whether you routinely refer patients to other providers for this service. In the last column, please identify the county to which or from which you typically make or receive referrals. SERVICE Routinely Provide Routinely Receive Referrals Routinely Make Referrals 5. Instruction on the use of protective eye wear in hazardous occupations and activities Yes No Yes No Yes No 6. Instruction on the proper care of contact lenses Yes No Yes No Yes No 7. Education on hygiene to prevent spread of conjunctivitis Yes No Yes No Yes No 8. Glaucoma screening to identify asymptomatic individuals with elevated intra-ocular pressure Yes No Yes No Yes No 9. Newborn and young child vision screening Yes No Yes No Yes No County to Which You Typically Make or Receive Referrals Preventive Services 68 SERVICE Routinely Provide Routinely Receive Referrals Routinely Make Referrals 10. Optical exam for refractive errors Yes No Yes No Yes No 11. Comprehensive adult eye examination Yes No Yes No Yes No 12. Comprehensive pediatric eye examination Yes No Yes No Yes No 13. Specialized diagnostic procedures: angiography, ultrasound, electrophysiology Yes No Yes No Yes No 14. Culture for conjunctivitis Yes No Yes No Yes No 15. Corneal scraping for culture, corneal biopsy Yes No Yes No Yes No 16. Optical correction Yes No Yes No Yes No 17. Occlusion, defocusing, defogging (for amblyopia) Yes No Yes No Yes No 18. Topical treatment for infections Yes No Yes No Yes No 19. Topical treatment for reduction of corneal edema and of intra ocular pressure Yes No Yes No Yes No 20. Keratorefractive surgery Yes No Yes No Yes No 21. Cataract removal Yes No Yes No Yes No 22. Corneal transplant Yes No Yes No Yes No 23. Other incisional ophthalmologic surgery (glaucoma, eye muscle, eyelid) Yes No Yes No Yes No County to Which You Typically Make or Receive Referrals Diagnostic Services Treatment Services 69 SERVICE Routinely Provide Routinely Receive Referrals Routinely Make Referrals 24. Assessment of functional disability and adaptation skills Yes No Yes No Yes No 25. Low vision exam Yes No Yes No Yes No 26. Training in use of magnification, lighting and contrast enhancement, maximizing residual vision Yes No Yes No Yes No 27. Training in adaptations for activities of daily living Yes No Yes No Yes No 28. Counseling on the impact of low vision (e.g., vocational, mobility, job placement, adaptive equipment) Yes No Yes No Yes No County to Which You Typically Make or Receive Referrals Rehabilitation Services For each general eye service area (preventive, diagnostic, treatment and rehabilitation), please identify the particular services that are the most difficult to make referrals? Service Area Particular Service with Referral Difficulty 29. Preventive Services 30. Diagnostic Services 31. Treatment Services 32. Rehabilitative Services Which three eye care services, if any, are most difficult for people in your community to obtain? For each service please identify the major reason for this difficulty. Services Cost or Ability to Pay Travel Distance Lack of Providers Lack of Social Support Other 33. 34. 35. 70 36. What are the greatest unmet eye care needs in your community? ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ 37. What single action by a private foundation (such as the Alabama Eye Institute, Inc.) would make the greatest improvement in eye care in your community? Please explain why? ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ Thank you. 71 Survey of Rehabilitation and Support Service Providers 72 ALABAMA EYE INSTITUTE, INC. November 22, 1999 Dear Colleague: The Alabama Eye Institute, Inc., a non-profit foundation formed with the proceeds of the sale of the Eye Foundation Hospital in Birmingham, wants to help you and other organizations throughout Alabama in your efforts to serve the eye care and vision needs of the citizens of our state. The AEI board consists of independent business, medical and community leaders in Alabama. Our mission is to promote research, education and indigent care related to the human eye. In order to meet this mission, we are conducting a comprehensive needs assessment of the state of eye care in Alabama. The attached survey is an important part of this study. Please take a moment to fill out this brief survey. As a member of Alabama’s eye care community, your knowledge and experience with services for people with eye and vision problems will provide us with important information. The more responses we receive to this questionnaire, the more likely we are to gain a complete picture of eye care and vision services in the state, and a better understanding of where the needs are greatest. As you will see in the survey, we are interested in information about both direct eyerelated services that your organization provides (such as eye screenings, transportation to and from appointments, training or rehabilitation services) and support for eye-related services (such as referrals or financial assistance for exams, eye glasses, medications or surgical procedures). Also, some of the information from this questionnaire will be included in a comprehensive statewide directory of eye care and vision services to be made available throughout Alabama as a public service of AEI. We would like to include your organization and programs in this publication and would appreciate receiving your completed survey as soon as possible. Please return it to the AEI by fax205/325-8532, or by mail-700 South 18th Street, Suite 601, Birmingham, AL 35233. Thank you so much for your help. If you have any questions, please call Ms. Torrey Smitherman in Birmingham at 205/325-8508. Sincerely, Torrey Smitherman Executive Director Hartwell Davis, Jr. Chairman, Board of Trustees Attachment 700 SOUTH 18TH STREET - SUITE 601 - BIRMINGHAM, ALABAMA 35233 73 Alabama Eye Institute, Inc. Survey of Alabama Eye Care and Vision Services Providers Name of Organization____________________________________________________________ Contact Person________________________________________________________________ Address________________________________________________________________ ______________________________________________________________________ ______________________________________________________________________ Phone_________________Fax_______________E-mail_________________________ Direct Services Does your organization provide direct eye-related services, such as eye exams, transport, equipment, training, rehabilitation services? _____Yes _____No If yes, please list any and all services. __________________________________ ________________________________________________________________ ________________________________________________________________ What population do your direct services reach? (For example, children, visually impaired adults, people with multiple disabilities.) Please list. ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ Where are your direct services located? ________________________________________________________________ ________________________________________________________________ What geographic area do your direct services reach? ________________________________________________________________ ________________________________________________________________ 74 Are your direct services limited to low-income individuals? _____Yes _____No If yes, how does your organization define low-income? ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ What is the number of direct clients your organization serves per year? ________________________________________________________________ Please list the major sources of funds for your direct services. ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ Support Services Does your organization provide support for eye related services, such as financial assistance or referrals? _____Yes _____No If yes, please list any and all services. ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ What population do your support services reach? (For example, children, visually impaired adults, people with multiple disabilities.) Please list. ________________________________________________________________ ________________________________________________________________ Where are your support services located? ________________________________________________________________ What geographic area do your support services reach? ________________________________________________________________ Are your support services limited to low-income individuals? ____Yes ____No If yes, how does your organization define low-income? ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ 75 What is the number of support clients your organization serves per year? ________________________________________________________________ ________________________________________________________________ Please list the major sources of funds for your support services. ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ Is your organization affiliated with any other Alabama organizations? ____Yes ____No If yes, please list .______________________________________________________________________ ______________________________________________________________________ Is your organization affiliated with any other national organizations? ____Yes ____No If yes, please list. ______________________________________________________________________ ______________________________________________________________________ ______________________________________________________________________ ______________________________________________________________________ What are the greatest unmet eye care needs in your service area? ______________________________________________________________________ ______________________________________________________________________ ______________________________________________________________________ ______________________________________________________________________ ______________________________________________________________________ _____________________________________________________________________ _____________________________________________________________________ 76 What single action by a private foundation (such as AEI, Inc.) would make the greatest improvement in eye care in your service area? Why? _____________________________________________________________________ ______________________________________________________________________ _____________________________________________________________________ ______________________________________________________________________ ______________________________________________________________________ ______________________________________________________________________ ______________________________________________________________________ Thank you. Please return the questionnaire by December 10, 1999, to: Ms. Torrey Smitherman Executive Director Alabama Eye Institute, Inc. 700 South 18th Street, Suite 601 Birmingham, AL 35233 77 78