Guidelines for setting up low-vision and rehabilitation services in India
There is a huge gap between the needs and supply-demand triad for LVR services. In a global survey on low-vision services in seven Southeast Asian countries, including India, coverage for those requiring low-vision services was below 10%. This survey also identified that most of the low-vision services were restricted purely to clinical activity such as low-vision evaluation and prescription of magnifiers in the absence of vision rehabilitation components, including counseling and education. Major factors attributing to the poor coverage of low-vision services are low uptake, non-acceptance, social stigma associated with visual disabilities, transportation issues, non-availability of assistive devices, inadequate funding, and lack of knowledge and training on LVR care. Furthermore, there is a lack of awareness and utilization of low-vision services across our country. A lack of priority in the publicly funded eye delivery system for LVR could also be one of the reasons that is evident in the national program strategies.   To our knowledge, there is a paucity of literature on the standard guidelines for setting up LVR services in low-resource countries, especially for publicly funded eye care institutions, although some private or non-government institutions run a quality LVR service on their system. Given the global context, the American Academy of Vision Rehabilitation advocates a three-level model for vision rehabilitation services. Level 1 involves all ophthalmologists identifying patients with low vision along with ocular diagnosis. Level 2, a basic service delivered by LVR specialists, offers expertise in vision rehabilitation, for example, eccentric viewing, eye-hand coordination, or vision therapy. Level 3 employs a multidisciplinary team, primarily non-clinical, an approach that covers a wide range of services, for example, orientation and mobility training, daily living skills training, adaptation techniques, and reading and writing rehabilitation. Similarly, the Canadian Association of Optometry endorses a three-tier model. Level 1 mandates standard care by all optometrists, level 2 designates LVR services by trained optometrists, and level 3 encompasses comprehensive LVR services, providing a full range of clinical and non-clinical assessments and vision aids prescriptions.   People with visual disabilities need autonomy and ability to perform their daily and social activities on their own, thereby improving social participation and enjoying civic life like a sighted person. There is evidence that people are happy and satisfied with the low-vision assistive devices they use for their daily living activities. To achieve the WHO initiative, call for rehabilitation action by 2030, there is a need for the establishment of guidelines for setting up low-vision clinical services and strengthening rehabilitation across eye care facilities in India. LVR services are also essential for the education of visually disabled students to minimize the future impact of vision impairment and enhance employment opportunities. Children with vision loss can have a substantial impact on psychological experiences, education, employment, and socioeconomic status beyond their childhood. To effectively address the complex needs of individuals with visual disabilities, it is imperative to move beyond the current focus on diagnosing and dispensing low-vision aids. The ophthalmology department, either led by the head or a dedicated ophthalmologist from the department should take the lead to start LVR service in their respective center, keeping in mind that a comprehensive and holistic approach, employing a multidisciplinary team, is essential. This collaborative effort necessitates adequate manpower, financial resources, and well-equipped infrastructure, along with a diverse array of assistive devices accompanied by comprehensive orientation and training. The multidisciplinary team should encompass various professionals, each contributing their expertise to cater to the diverse aspects of visual impairment. Ophthalmologists and optometrists play crucial roles in the clinical components, ensuring accurate diagnosis and appropriate interventions and referral for appropriate LVR services. Special educators, occupational therapists, orientation and mobility trainers, social workers, and counselors contribute to the rehabilitation components, addressing the broader spectrum of daily living challenges and psychological well-being. Furthermore, the inclusion of assistive technologists is a recent and valuable addition, providing expertise in the utilization and maintenance of a wide range of assistive devices. This holistic approach ensures that individuals with visual disabilities receive comprehensive care, encompassing not only the clinical aspects of their condition but also addressing the broader dimensions related to social life that impact their overall quality of life. Such a multidisciplinary approach is not easily possible without a proper set of guidelines for establishing LVR in eye care centers in a resource-limited country like India. Furthermore, establishing such a resource-intensive services system may not be a suitable strategy in low-resource countries. There are a lot of barriers to the establishment of the facilities, including access to low-vision services such as a dearth of low-vision devices and their trainers, lack of knowledge of assistive technology, psychological issues, and lack of funding for the establishment. Other major issues such as outdoor mobility issues among the visually disabled, lack of transportation (especially in rural areas), dependency, and psychological issues such as depression prevent them from accessing low-vision services. There is evidence that low-vision services along with rehabilitation have a marked impact on functional status and quality of life with high patient satisfaction. To the best of our knowledge, there are no standard guidelines for setting up low-vision and vision rehabilitation services, especially for lower- and middle-income settings like India. For example, What should be the basic requirements from resource points of view and their recommendations are not clear? Furthermore, many of us are not very familiar with what resources outside of clinical settings such as non-health sectors are available in the community such as community-based organizations that can serve people with visual disabilities. Given this scenario, there is a need to have basic guidelines that can assist in establishing LVR services in the eye hospital.   The National Workshop on Strengthening Low-Vision and Rehabilitation Services was organized at the Dr. Rajendra Prasad Centre for Ophthalmic Sciences, All India Institute of Medical Sciences, New Delhi in 2015 and 2019. The event had 55 participants, including ophthalmologists and optometrists from nine regional institutes of ophthalmology (RIOs) of the country and other experts from the Rehabilitation Council of India, along with representatives from non-government organizations working for people with visual disabilities. The workshop was structured in multiple sessions. Initially, stakeholders and experts were categorized into two groups during the first session: group I, focusing on low vision, and group II, concentrating on rehabilitation. Each group was then subdivided into teams, namely the Human Resources team and the Devices and Equipment team. The second session, named the break-out session, involved brainstorming and discussions among team members in their respective areas. During the group work sessions, the participants developed plans for establishing and expanding LVR services in their respective centers. Subsequently, in the third session, respective team representatives delivered presentations based on extensive discussions and identified the action points. Finally, the fourth session served as a consolidation phase, incorporating the conclusions drawn from group discussions and presenting the final set of recommendations.   There is not only a lack of awareness about the principles and practices of LVR services but also no known proper guidelines for setting up LVR services in India. The expert panel recommended the basic minimum requirements for establishing LVR services in eye care centers under the following headings: Human resources and training Equipment LVR devices Record maintenance.   The following are the basic manpower requirements to start LVR services in each RIO or at other eye care centers, along with the minimum recommended duration for the training in each cadre. This manpower can help to initiate LVR services .   This consensus report is not meant to provide a detailed clinical assessment of LVR or vocational assessment. However, the experts grossly described the kind of manpower along with assistive devices required for such a service. LVR is a collaborative effort of a multidisciplinary team that ideally includes ophthalmologists, optometrists, orientation and mobility instructors, medical social workers or occupational therapists, assistive technologists, special teachers, and even family members along with the visually disabled. Such resource-intensive manpower is a challenge for low-resource countries. Therefore, the workshop recommended a minimum human resource required for LVR services in tertiary and secondary centers to provide quality LVR services to the clients . The roles and responsibilities of each team member are shown in . In the future, assistive technologists and occupational therapists will be required as additional manpower to provide complete LVR services.   The following minimum equipment was recommended to start LVR services in tertiary eye care such as RIOs. The respective center can decide the quantity according to the resources available. Basic low-vision screening and diagnostic equipment are listed in .   Assistive devices required for low vision management include optical near and distance magnifiers, uniocular and binocular telescopes, non-optical devices, and filter glasses. Patient and family education are also key components in low-vision management . The report recommended the following basic assistive devices (optical and non-optical) for low-vision service. The panel further suggested decentralization in terms of procurement of these devices.   The WHO defines vision rehabilitation as a set of measures that assist individuals with visual disabilities to achieve and maintain optimum functioning in interaction with their environment to remain in or improve in education, social participation, and civic life. The goal of vision rehabilitation is to empower every individual with vision loss to be able to live independently, execute their daily needs by themselves, and contribute to their full potential. Therefore, such service is indispensable while caring for individuals with vision loss. In an ideal case, vision rehabilitation services need a detailed needs assessment and evaluation to determine the level of care and types of rehabilitation intervention required for the so-called development of an individual vision rehabilitation plan (IVRP). However, the intent of this consensus report based on recommendations is to provide basic assistive devices needed for vision rehabilitation services rather than providing a detailed rehabilitation assessment guideline. Assistive devices for vision rehabilitation are essential components for the management of low vision and blindness in terms of enhancing physical functioning, for example, using a cane for mobility or accessible smartphone applications for social inclusion. These products can be hardware or software that range from low technology, for example, walking cane, Braille, and signature guides, to advanced technology such as computer-based software technology, smartphone-accessible applications, and devices incorporated with artificial intelligence and augmented or virtual reality technology. However, the panel of the workshop recommended the following basic assistive devices for a vision rehabilitation service .   Each eye care center can develop its own routine information system for LVR as per their choices. Otherwise, the existing recording form of LVR services of Dr. Rajendra Prasad Centre for Ophthalmic Sciences, All India Institute of Medical Sciences, New Delhi can be used if the center prefers so. A master register for low-vision assessment and rehabilitation should be maintained. Separate outpatient department (OPD) cards for LVR services are preferred for registration, assessment, and follow-up.   LVR requires a multidisciplinary approach for which guidelines focusing on the basic requirement to establish LVR services are necessary that are perhaps most suitable in lower-middle-income countries. The proposed guidelines for the establishment of LVR are the result of two national-level workshops organized at ….(anonymized for peer review) …in 2015 and 2019. This guideline is an amalgamation of those suggestions and opinions from experts and government stakeholders who had participated in the workshops. The population with low vision is expected to increase over time, and the demand for LVR services will increase for visually disabled persons. Disseminating this recommendation will help institutes in terms of setting up LVR services in their respective centers, particularly in low-middle-income countries like India. Limitations This guideline does not explain the details of clinical, visual assessment of LVR. Furthermore, the details about training needs and the mechanism of the referral system need to be developed in the future, thus showing that there is a need to have more workshops on the development of detailed clinical guidelines and training needs. Recommendations To improve access and coverage of LVR services across the country, we recommend guidelines with a minimum basic requirement, including assistive devices and equipment for setting up low-vision services in eye care centers. Some other relevant recommendations are: The relevant government functionaries, non-governmental organizations, and funding agencies can be involved to strengthen LVR services in the country. Volunteering for other healthcare professionals and community workers in spreading the awareness of and need for utilization of LVR services and training them on how to use basic and simple devices for daily activities. Regular discussions and workshops should be conducted to assess the requirement of the revision of the guidelines, including assistive devices. A multimodal approach with a proper framework and policies should be recommended for the effective implementation of LVR services. Furthermore, the extension of LVR services into primary health care can be done to improve the coverage and utilization of LVR services. In the absence of evidence-based guidelines for training individuals with low vision, it depends on expertise as well as experiences of the special trainers, motivation and determination of trainees, and resources available.   This guideline does not explain the details of clinical, visual assessment of LVR. Furthermore, the details about training needs and the mechanism of the referral system need to be developed in the future, thus showing that there is a need to have more workshops on the development of detailed clinical guidelines and training needs.   To improve access and coverage of LVR services across the country, we recommend guidelines with a minimum basic requirement, including assistive devices and equipment for setting up low-vision services in eye care centers. Some other relevant recommendations are: The relevant government functionaries, non-governmental organizations, and funding agencies can be involved to strengthen LVR services in the country. Volunteering for other healthcare professionals and community workers in spreading the awareness of and need for utilization of LVR services and training them on how to use basic and simple devices for daily activities. Regular discussions and workshops should be conducted to assess the requirement of the revision of the guidelines, including assistive devices. A multimodal approach with a proper framework and policies should be recommended for the effective implementation of LVR services. Furthermore, the extension of LVR services into primary health care can be done to improve the coverage and utilization of LVR services. In the absence of evidence-based guidelines for training individuals with low vision, it depends on expertise as well as experiences of the special trainers, motivation and determination of trainees, and resources available.   