Assistive technology: The current perspective in India

Categorization of Assistive Technology

As of today, thousands of ATs have been developed and used by persons who need them, yet there is limited published literature in terms of the categorization or classification of AT. Various service providers to people with disabilities or agencies make efforts to either classify or categorize assistive technologies. The notable agencies are The National Classification System for Assistive Technology Devices and Services, used in the United States, and The International Organization for standardization’s (ISO 9999), used in Europe and the International Classification of Functioning, Disability and Health (ICF)-based Classification (ICF/AT2007).[15,16] Such classifications are primarily meant for PwDs. Given that AT is required not only by PwDs but also by the elderly population and individuals with chronic health conditions, there is no update and consensus classification or categorization that accepts universally to date.

However, conventionally, AT can be categorized into two different aspects. First is the design and development point of view; second, based on the user requirements. The first categorization provides information about specific technologies intended for developers or relevant engineering professionals working in various industries. The second categorization is for the provision of services to end users (patients) based on their types of functional difficulties or limitations. Table 1 represents the second type of AT categorization. A similar, but not exactly the same, categorization was used in Rapid Assistive Technology Assessment Survey and in the United Nation International Children’s Emergency Funds and the World Health Organization (WHO) working document in AT for children’s disabilities.[17]

Needs and Access to AT in India

In low-middle-income countries (LMICs), the prevalence of disabilities is often underestimated, and widely varied due to inconsistency in the definitions of disability measurement.[18] India is the second most populous nation after China in the world, constituting nearly 18% of the world total population.[19] Since various agencies reported different data on disabilities, the exact estimate of the disability population in India is not known. However, the census 2011 reported that around 2.2% of the total population have some form of disabilities that makes approximately 30 million people.[20,21] The prevalence increases with age increase, reaching up to 5.1% in individuals aged 60 years and above, and even higher among women, people with socioeconomic disadvantages and rural inhabitants. This census estimate on disability statistics is far below the estimation given by the WHO, ILO, UNICEF, and the World Bank for India.[18,22,23] For example, the World Bank study in 2007 reported that the prevalence of disabilities in India was much higher than census estimation (three times), so as in the World Report on Disability.[24,25] The main reason for this is the census estimation was primarily based on health impairment rather than the functioning of individuals, as given in the ICF, WHO.[26]

This reflects that it is not sure how many people will need at least one AT to improve their functioning. Since AT need is not limited to disabled groups, older population and persons with chronic conditions also require AT; therefore, the population needing AT will be much higher in the real sense. Further, factors like continued demographic and epidemiological transition, growing population with low vision and blindness, musculoskeletal impairment, individual with stroke, frail health, road traffic injuries, and their health consequences will multiply the need for AT over time. Therefore, a few years from now, AT needs in India will grow exponentially. A similar projection is being highlighted in other studies.[12,27]

The WHO estimated that around one in ten people who need AT have access to them globally.[4] Further, the number is expected to grow to two billion people by 2030.[25] A great proportion of them (90%) are from LMICs. Although it is not known how many people have access to AT in India, to our knowledge, many disadvantaged people do not have access to adequate services related to AT. There is a significant gap between needs and access to appropriate, high-quality, affordable AT services in India. The country has limited information on met and unmet needs for AT. Studies reported that a huge disparity in terms of AT access across the country is due to skewness in healthcare access, high cost, limited availability in the market due to low production, and poor awareness among the target population as well as service providers.[28,29] The unmet needs for AT is expected to be higher in rural areas than in urban area, among the poorest and elders. At the national level, the absence of policy or strategies on AT, lack of governance, and inadequate financing by the government can be additional reasons.

Impact due to Unmet Needs for AT

Lack of access to AT can have serious impacts on individuals, families, and society as a whole. It causes not only poor health outcomes but also deteriorating health conditions due to an increased risk of secondary health complications and further reduction in the quality of life.[4] All these factors will lead to a higher burden on the healthcare delivery system. A study reported that the economic loss related to disabilities, due to reduced productivity, higher unemployment rate, inactivity, and limited participation in the labor markets, falls between 3 and 7% of gross domestic products in ten LMICs.[30] In addition, there is indirect economic loss due to the involvement of family members in caring for people with disabilities. Improving access and increasing affordability to AT will help to unlock their full potential, thereby enabling them to participate in the workforce and providing socioeconomic benefits to families, society, and the country.

Global Initiative for Assistive Technology

The WHO is currently leading a number of initiatives to improve access to AT in a high-quality and affordable way for its member states. In 2014, The Global Cooperation on Assistive Technology (GATE) was launched by the WHO in partnership with organizations, such as UN agencies, professional organizations, academicians, donors, and AT industries.[1,2] As a part of the first step of the global commitment, the WHO has prepared a list of 50 high-priority assistive devices, named “The Priority Assistive Products List” (APL) with aimed at providing guidance to its member states developing their own a national priority assistive products list, within the context of their national needs and available resources.[31] The GATE initiative is also working for AT services to include it in Universal Health Coverage, WHO. Besides this, the WHO Rehabilitation 2030: A call for action, comprehensive and quality rehabilitation service, including equitable access to assistive products, is one of the fundamental components.[32] Most importantly, in 2022, the WHO leads a global survey to understand the current AT access situation and met and unmet needs for AT from 35 countries using rapid Assistive Technology Assessment (rATA). The result of this global report on assistive technology (GReAT) showed that one in three people needs at least one or more assistive products. The need for assistive products is increased with age, reaching nearly two-third of the population among individuals aged 60 years and older.

The SDGs have focused on the need for social inclusion and pledged that “no one should be left behind” and that the government should make an effort to reach the farthest behind the first.[33,34] The 2030 agenda of Sustainable Development clearly reiterates that disability cannot be a reason for a lack of access to development, education, and understanding of human rights.[35] It has been shown that the 17 SDGs are closely relevant to AT services. Without giving due emphasis and promoting access to essential assistive devices, and its relevant services to those people who need them, achieving SDGs and leaving no one behind will not be possible.[36] India is a ratified member state to of UN and a member state of the WHO, so it is important to move forward to the line of the UN and WHO’s commitments.

The Current Initiative to Improve AT Access in India

In 2018, the 71^st World Health Assembly adopted a resolution on improving access to affordable but high-quality AT globally.[37] Following this, the WHO, GATE recognizes that there is a global need for estimation of the various key indicators related to AT services. The resolution has also urged the WHO to prepare a Global Report on Effective access to AT, named as GReAT. The same was released in May 2022 by the WHO, Geneva. The primary purpose of the report is to help its member states in developing national AT services planning and policy. To achieve this mandate, the WHO developed a digital-based survey tool named rATA to assess AT use, needs, met and unmet needs, and barriers to access, along with information on the supplies of AT.[38] The protocol of the rATA survey is developed by the WHO, GATE team.[39] Therefore, the GReAT will help to draw the attention of not only governments but also of various organizations, private sectors, industries, and civil societies.

India is a member state of the WHO; therefore, its mandate is to align with the WHO commitment to improve access to high-quality and affordable AT for persons who need them. Further, the UN Convention on the Rights of Person with Disabilities, which has been ratified by India, pushes states to ensure access to AT with affordable prize. To better understand AT service in the country in line with WHO, the rATA survey was conducted from November to December 2021 in eight districts, covering two districts from each zone of four divided zone of the country by All India Institute of Medical Sciences, New Delhi along with officials from the Ministry of Health and Family Welfare, Government of India. The survey was supported by the WHO in terms of financially and technically.[40] The results of the survey will provide an evidence-based dataset to policymakers, healthcare providers, organization, and civil societies, including PwDs for planning AT services. Further, a National Essential List of Assistive Products of India is being prepared under the initiative of the Indian Council of Medical Research, New Delhi, Ministry of Health and Family Welfare, Government of India. Currently, the list has been put in the public domain for feedback.[41]

The Challenges Ahead

In India, disabilities, particularly in rural areas, are still viewed as a social stigma as well as a social taboo. Such culture poses a great challenge to improving AT access and services. Family members are generally unwilling to expose their kins with disabilities to society. Furthermore, there is a dearth of data on awareness and use of AT among those in need, which is further compounded by the lack of accurate estimates on the prevalence of disabilities. A study conducted in LMICs found poor awareness and knowledge of AT among potential users.[42] Such factors may give hindrances in terms of formulating a plan to improve access to AT.

Although there is government’s commitment to the existing disability policy and Act for welfare services, there is still a substantial proportion of unmet needs in India. In addition, many potential users, to the best of our knowledge, have to buy AT services out of their pocket, although the government and community-based organizations provide assistive products for free, but to a limited number.

To date, there is not a specific discipline for AT services in the healthcare setting. This adds that AT services are often inaccessible, resulting in a poor level of awareness and knowledge as far AT services are concerned. The competing government priorities in healthcare may reduce development and growth, making it unavailable for those who need AT. There is a limited number of industries or manufacturers of assistive products in the country. This leads to low production of assistive products, which in turn impedes the supply and availability of AT across. In addition, the country faces a lack of trained resource persons for AT services, leading to poor services provision and less access to the potential beneficiaries.

Recommendations

India, being one of the earliest signatories to UNCRPD, has PWDs Act 2016. The country has seen progress in disability policies and observed a conducive change in the welfare and livelihood of PWDs in the community over the past few years. The Department of Disability Affairs under the Ministry of Social Justice and Empowerment, Government of India is responsible for welfare of PWDs, including the provision of few selected assistive products under its Assistance to Disabled Persons scheme. This Ministerial division can continue to provide humanitarian and social assistance including financial supports to PwDs.

However, the Ministry of Health and Family Welfare, Government of India is responsible for healthcare delivery system under its various national health programs. It is also responsible for the issuance of disability certificates for PWDs. The anecdotal evidence shows that AT services are seldom available in the various healthcare facilities across all levels. Many PWDs who visit healthcare institutes are neither aware of assistive products nor have knowledge fully on the government scheme. Therefore, to improve access among potential users, healthcare facilities starting from the community up to the tertiary level should be made available AT services across the country, where the disability certificate is being issued. Such integration of AT services into the healthcare system will be helpful in improving AT services. Not only PwDs, but the remaining portion of beneficiaries such as older population, persons having chronic health problems, will also benefit from such integration.

The results of rATA survey can help in developing an essential list of AT based on the country’s priority. Further, like essential medicines, AT delivery points can be installed in various healthcare facilities. Despite AT being distributed in district disability rehabilitation centers in the community, to our knowledge, nongovernmental organization (NGOs) are the main players in providing AT services. Since the government promotes the public–private partnership strategies, healthcare facilities can develop a networking mechanism with NGOs and other civil societies or vocational training centers which will help to improve AT services and disability care in LMICs. Such a strategy, known as “Clinico-Social Model,” which uses existing resources other than the public sector in providing inclusive services for people with visual disabilities, is documented in a study.[43] At the same time, the government should consider the flexibility of the AT allowance for PWDs to reduce the out-of-pocket payment of AT services.

A national policy for AT services is required focusing on multisectoral actions across the multiple government agencies and public–private partnership model and emphasizing the integration of AT services into healthcare delivery. There is a need for having a national AT program in the health sector which will help in improving access to appropriate AT across all levels of health facilities. The government also needs to invest in training and capacity building on human resources for AT services at many accounts, such as undergraduate, postgraduate, and nursing education in their academic curriculum.

The relevant government functionaries, such as health, transport, education, information and technology, and related private organizations, including charitable agencies, can work to strengthen the awareness of AT services at various settings such as community level, healthcare facilities, educational institutions, transport division and industries, by using multiple channels. Such an awareness program is particularly important in India, where most beneficiaries and providers are not familiar with AT services. Further, developers and industries of the country should be encouraged for research and development in assistive products through various government schemes and international support, so that the country can have affordable, indigenously developed assistive products of all types. Regular surveys similar to rATA will be helpful in providing evidence of the improvement and monitoring the progress of AT services program.

Conclusion

Currently, the assistive devices and AT services in India suffer from a huge lack of organized system ranging from low production of the products, absence of a well service planning and shortage of AT workforce, unknown status on the information of AT needs, including met and unmet and poor national or intersectoral coordination. Furthermore, the existing AT services suffer from insufficient funding and lack of governance at the highest level, especially in the Ministry of Health and Family Welfare. On the other side, the target population for AT need will continue to grow over time in India, thereby will increase those who require AT for their functional difficulties. Therefore, there is a need for formulating evidence-based AT service policy and planning in the country led by the Ministry of Health and Family Welfare with support from other relevant government agencies, industries as well as private sectors. Given the ongoing initiatives in India, including rATA survey, and the WHO commitment to improving AT service, it is the right time for the country to prepare a roadmap to meet demands for AT service.