Mapping Future Research in Disabilities—Research Initiatives in Intellectual Disabilities in India: Report of a National Interdisciplinary Meeting

Brief Research ReportMapping Future Research in Disabilities—ResearchInitiatives in Intellectual Disabilities in India:Report of a National Interdisciplinary Meetingjppi_339 151..155

Libby Cohen* and Roy I. Brown†

*James Cook University, Singapore; and †University of Victoria, BC, Canada

Abstract A meeting organized under the auspices of the International Association for the Scientific Study of Intellectual Disabilities(IASSID) Academy on Education, Teaching and Research was held in March 2011 at the India International Centre in New Delhi,India, with the explicit purpose of helping establish a road map for future research in intellectual disabilities (ID) in India and to forgealliances among like-minded researchers and practitioners to move forward on countrywide research. The participants were drawnfrom nongovernmental and governmental groups, private consultancies, psychology, researchers, and policymakers, and they wereinterested in research dissemination, research methodologies, and research ethics. The participants developed a framework forresearch strategies and defined important areas for further research in ID for India. Based on the discussions, the following researchstrategy areas were identified: prevalence studies, human ethics, human rights, prevention, interventions, research syntheses ofexisting research that has been conducted in India, dissemination of existing research, building research capacity, and disasterpreparedness. As each priority area required further discussion and feedback, agreement was achieved that such further discussionsand collaborations would follow. The follow-up is a process which involves the simultaneous and synergistic development of policiesand practices at the application and governmental levels.

Keywords: India, intellectual disabilities, research initiatives, research priorities

INTRODUCTION

Numerous articles have described disparities, inequities, andinjustices of persons with disabilities in various countries aroundthe world (United Nations, 2011). Despite efforts at the interna-tional and country levels, there continue to be enormous gaps inresearch, policy, and practices in a range of countries which aresometimes referred to as the LAMIC (for “low and middle incomecountries”) (World Bank, 2011), “developing countries,” “thirdworld countries,” and the “global South” (as many of these coun-tries are located in the Southern hemisphere, i.e., Africa, SouthAmerica, and Southeast Asia).

RESEARCH–PRACTICE–POLICY GAP

Articles delving into the various activities of the InternationalAssociation for the Scientific Study of Intellectual Disabilities(IASSID) Academy on Education, Teaching and Research (the“IASSID Academy”) (e.g., Hassiotis et al., 2011) have highlighted a

gap among policymakers, practitioners, and researchers which hasresulted from the lack of sharing of research findings and insightsas they emerge—thus, contributing to a continuing cycle whichdeepens the research–practice–policy gap. Some researchers mayconduct research in areas that may not be relevant to practitioners,and practitioners, on the other hand, may not readily applyresearch findings that are produced. Policies that are put in placeby governmental and other organizations may not be based onsolid research inputs and emerging insights from practice.

Lewig, Arney, and Scott (2006) explained that there have beena number of articles that have addressed the reasons for theresearch–practice–policy gap. Changes in practices and policiesare influenced infrequently as a result of research studies becausethere is a lack of alignment among research, practice, and policycultures. Although individuals in these cultures may share similargoals, the cultures are distinct, creating gaps in understandingsand cooperation (Emerson, Hatton, Thompson, & Parmenter,2004). Each of these communities may respond in unique ways totime demands, communication styles, knowledge priorities, andtheir work environments. Furthermore, the system is often hier-archical to the extent that it can limit a ground up approach toresearch, which responds to local needs as expressed by peoplewith or those who directly serve people with disabilities. Figure 1depicts some of the gaps among these three communities.

Other concerns that contribute to the research–policy–practice gap relate to the lack of or minimal use of research,

Received January 9, 2012; accepted March 15, 2012Correspondence: Libby Cohen, James Cook University Singapore, 600Upper Thomson Rd, Singapore 574421, Singapore. Tel: +65 9880 1040;E-mail: [email protected]

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Journal of Policy and Practice in Intellectual DisabilitiesVolume 9 Number 2 pp 151–155 June 2012

© 2012 International Association for the Scientific Study of Intellectual Disabilities and Wiley Periodicals, Inc.

policy, and dissemination channels (e.g., access to scientific jour-nals); varying economic levels of researchers and practitionerswho may not be willing or able to afford the costs associated withjournal subscriptions and fees associated with conference atten-dance, even those that are offered locally; budgetary and humanresource constraints; and disparities in the languages used forresearch dissemination and the languages of practitioners(Hassiotis et al., 2011).

Within this context, the IASSID Academy—as one of itsmissions is the promotion of research applications and educa-tion of researchers with respect to research methods—is inter-ested in enabling countries to more effectively coordinate theresearch activities relative to intellectual and developmental dis-abilities within their borders. The IASSID Academy organizesand promotes a variety of courses and workshops that are eithertutorial or consultative. The situation cited below is an exampleof the Academy’s consultative function and was organizedwith the specific aim of enabling one country’s researchers andother interested persons to assemble and carry out a conversa-tion on identifying areas of needed research and proposingactions that would help coordinate a relevant national researchagenda—which in turn would lead to the translation of researchto applications in the area of intellectual and developmentaldisabilities.

INDIA: SETTING THE CONTEXT

India is a unique example of a country that is rapidlydeveloping with many of the challenges of developing countries

(Mahtaney, 2010). In a country with a global reach, economicprogress is increasing, while some economic sectors continueto lag behind. There are “high tech” regions, industrializedareas, vast agricultural spaces, and megacities. With a popula-tion of more than a billion persons, there is a wide variation insocioeconomic levels. Poverty is pervasive in some regions, andareas of development and underdevelopment coexist (Mahtaney,2010).

India signed and ratified the United Nations Conventionon the Rights of Persons with Disabilities (UNCRPD) in 2006.However, for the most part, persons with intellectual disabilities(ID) in India have been left behind. One overwhelming reasonis that many people with disabilities are also desperately poor(Groce, Kett, Lang, & Trani, 2011), and there is an inextricablelink between deprivation and disability. Individuals with disabili-ties and their families are more likely to live in poverty thanpersons without disabilities. Furthermore, deprivation and abuseadd to any other disabilities that are present, as well as directlycausing ID in their own right (Clarke & Clarke, 2000). The cou-pling of disability and poverty results in enormous vulnerabili-ties, inequities, and injustices. Other reasons for lack of supportfor improving the lives of persons with disabilities include theabsence of a strong commitment to inclusion by the centraland state governments, lack of enforcement of equal rights forpersons with disabilities, systematic exclusion, remnants of acaste system, negative attitudes toward persons with disabilities,historical disadvantages, lack of employment opportunities,inadequate planning, slow implementation of appropriate educa-tion and services, extreme shortages of trained personnel, andcultural norms (Cuskelly, 2009; Kalyanpur, 2008).

Time Commitments

• Researchers may need

longer time frames

• Practitioners may

require immediate

results

• Policymakers may need

shorter time periods to

make decisions

Communication

• Researchers may use

technical language

• Practitioners may

require simplified

language and guidelines

• Policymakers may need

brief, short reports

• Hierarchical system that

may limit “ground up”

approach

Knowledge Priorities

• Researchers may use

methodologies and theories

• Practitioners require

practical knowledge and

applied practices

• Policymakers may focus on

immediate needs, benefits,

and special interests

Work Environments

• Researchers may be situated in

academic environments or think

tanks. They may be influenced by

funding availability and reputation.

• Practitioners may work in service

delivery environments and may have

to make immediate responses to

needs.

• Policymakers may be influenced by

social, economic and political

interests.

Research Practice Policy Gaps

FIGURE 1

Gaps among the research practice policy cultures (adapted from Lewig et al., 2006).

Journal of Policy and Practice in Intellectual Disabilities Volume 9 Number 2 June 2012

L. Cohen and R. I. Brown • Mapping Future Research

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An IASSID Academy-organized meeting, held in March2011 at the India International Centre in New Delhi, India, wasdesigned to help establish a map for future research in ID in Indiaand to forge an alliance among like-minded researchers and prac-titioners to move forward with countrywide research initiatives.Until that meeting, there had been few countrywide researchinitiatives in the area of ID established in India. As a result, therewas strong support by Indian researchers to establish sharedcoherent research initiatives.

Framing the New Delhi Meeting

The process of organizing the meeting included a series ofpreliminary conversations by several IASSID members workingwith colleagues in India and the wider the Asia-Pacific region. Thesenior author was then instrumental in making contact withgovernmental functionaries, primary scientific and advocacyorganizations, and relevant university programs associated withdevelopmental disabilities and gaining consensus on the estab-lishment, venue selection, and timing of the meeting. Via India-based members of the planning committee, invitations wereextended to researchers, trainers, and experts in disabilities fromthroughout India to attend a 3-day meeting in New Delhi inwhich knowledge and practices would be shared and duringwhich initiatives for future research in ID would be developed.The host organization was the National Association for thePromotion of Knowledge on Intellectual Disability, a New Delhi-based service provider. To assist with planning, an informationalsession was held in New Delhi several months prior to themeeting in order to gain information and suggestions regardingpotential research initiatives, organizations which could berepresented, and potential meeting participants.

Approximately 25 individuals, who were from various disci-plines (including education, medicine, social work, psychology,

and social science research), attended the New Delhi meeting.The participants were drawn from nongovernmental organiza-tions, governmental groups, and private consultancies, as wellfrom among psychologists, researchers, and policymakers whowere interested in research dissemination, research methodolo-gies, and human subjects research ethics. The participants werekeenly interested in mapping research initiatives in ID for Indiabecause they believed it was timely to develop countrywideresearch strategies. The senior author served as the facilitator forthe meeting.

RESULTS

Throughout the meeting, a number of presentations wereoffered and many opportunities for conversations occurred.Presentations included information about IASSID’s internationalactivities, research approaches, human ethics, medical research,preparation of professionals, activities of service providers,research dissemination, and policy developments. Numerous pri-orities were identified. The priorities affirmed that continued andrenewed efforts must be made to lessen policymaker–researcher–practitioner gaps so that all individuals with disabilities have theright to health care, education, and social participation. Keyresearch areas, developed through consensus by meeting partici-pants, are listed in Table 1 and are discussed in the followingsections.

Prevalence Studies

Throughout the meeting, the topic of prevalence surfaced asan important area for researchers. The meeting participants indi-cated that prevalence estimates are essential to inform planning

TABLE 1Research Strategies

Topic Description

Prevalence studies Prevalence estimates are essential to inform planning for services for persons with intellectualdisabilities.

Human ethics and rights Research should detail efforts aimed at protecting individuals with intellectual disabilities andtheir families from harm and assuring confidentiality and anonymity of research participants.

Prevention and intervention Training in research-based methods for prevention of intellectual and developmental disabilitiesshould be conducted.

Research syntheses anddissemination

There is a need to synthesize existing research that could inform the development of a detailedresearch agenda as well as a relevant and integrated practice agenda. There is a strong need forcollaboration among individuals from multiple disciplines.

Research capacity Building capacity of researchers to conduct research studies using robust approaches and tools isviewed as essential. Increased efforts and urgency should be placed on developing deepknowledge of research methodologies and empowering individuals to carry out research usingtransparent approaches.

Disaster preparedness Identifying research-based strategies related to disaster preparedness strategies that are sensitiveto cultural and social contexts is vital.



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for services offered by governments, schools, and service provid-ers. Technically sound measurement scales and instruments aswell as trained personnel to administer them are essential. Whilethere are many measurement tools, the meeting participantsraised questions related to the cultural and linguistic relevance ofavailable tools, which tools should be used with which indivi-duals, ways in which community members could be trained touse the tools, consistency in reporting, aggregation of data, anddissemination of results.

Human Ethics and Rights

The attendees expressed the need for continued effortsregarding awareness, understanding, and the application ofhuman subject research ethics protections. It was agreed thatemphasis had to be placed on protecting individuals with ID andtheir families from harm and assuring confidentiality and ano-nymity of research participants. There appeared to be heightenedawareness and influence of the UNCRPD by meeting partici-pants. It was agreed that the research ethics guidelines commis-sioned by IASSID (see Dalton & McVilly, 2004) for applicationsto international multicenter research involving persons withdisabilities could be more widely distributed and discussed.

Prevention and Intervention

Meeting participants strongly supported the implementationof research-based methods for prevention of ID and developmen-tal disabilities. There was recognition that investments in earlyintervention and prevention have increased benefits as indivi-duals develop.

Research Syntheses and Dissemination

Meeting participants indicated that there are pockets ofresearch that have been conducted in India on ID. However, theresearch that has been conducted may not have been widelyshared and there is a need to synthesize existing research thatcould inform the development of strategic research initiatives aswell as relevant and integrated practice planning. Identified wasthat there was a strong need for collaboration among individualsfrom multiple disciplines.

Systematic syntheses of existing research in India can informlocal policymakers, researchers, and practitioners. It was agreedthat it is important to facilitate knowledge transfer so that allstakeholders are aware of and are invested in moving forward.Several meeting participants indicated that while significantresearch in the area of ID has been undertaken, the results mayhave been only narrowly disseminated to specific locationsor regions. However, dissemination efforts need to be improvedand could include documented accounts of how research andpractices have been translated and applied in various com-munities. For example, meeting attendees emphasized theimportance of research approaches and effects of counselingon parents and children, of the influence of toxic substances,genes, and nutrients on appropriate growth and develop-

ment, and of programs for adults with ID. Dissemination ofany information is a challenge given the enormity of the Indiansubcontinent, the large number of professionals, carers, andfamilies who could benefit from the research results, multipleand suitable types of media and settings that could be used toconvey the research, and the large number of languages in use tocommunicate.

Research Capacity

Building capacity of researchers to conduct studies usingrobust approaches and valid tools was viewed as essential. Itwas agreed that increased efforts and urgency should be placedon developing deep knowledge of research methodologies andempowering individuals to carry out research using transparentapproaches.

The involvement of all research stakeholders was seen as ahigh priority. The research–practice–policy gap was highlightedas attendees emphasized the need for research-based accountsof professionals and paraprofessionals as they engaged withfamilies and individuals with disabilities. These accounts areespecially important because they provide personal, practical,day-to-day interventions and solutions, which can be transmit-ted from one person to the next and become incorporated intolocal contexts. These accounts should convey the influence of aperson with a disability on their family’s levels of rewards, accep-tance, frustrations, and burdens. Studying psychological andsocial aspects of the lives of individuals with disabilities, siblings,families, and care providers can contribute to deeper under-standings and the evolution of effective practices. The research–practice gap should be blended so that research and practice canbe integrated. The effects of social stigma on persons with dis-abilities and families, which have been mitigated over the years,continue to influence attitudes toward individuals with disabili-ties and their families and may lead to devaluation of individu-als. Much more could be done to eliminate social stigmatizationand promote acceptance.

Disaster Preparedness

Needed were effective approaches to disaster preparednessand its effective reduction and mitigation for individuals andtheir families who are impacted. Pollution, disasters involvingtoxins, other environmental influences, medical emergencies, andepidemics are causes for concern regarding disaster preparedness.India’s climate is highly variable and weather conditions varyconsiderably throughout the country. There can be periods ofmonsoon rains, dry, desert-like conditions, and extreme differ-ences in temperature. Severe storms and flooding can lead todifficulties in the protection and evacuation of persons with ID.Local cultures, languages, and customs should be consideredwhen training and preparing families, carers, paraprofessionals,individuals with ID, and others as to the appropriate ways ofpreparing individuals for disasters and keeping them safe. It wasagreed that there was a dearth of research on appropriate disasterpreparedness strategies and approaches that are sensitive tocultural and social contexts.



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CONCLUSION

The March 2011 New Delhi meeting generated strategies thatidentified priority areas for research in the area of ID in India. Thestrategies developed by policymakers, researchers, and practitio-ners present at the meetings were arrived at by persons who arerooted in India. In addition to the research strategies set forth inNew Delhi, adoption of the Millennium Development Goals canhelp persons with disabilities in India (United Nations, 2010).The voices of persons with ID, their families, and carers must beincluded. Issues and concerns expressed at the meeting were con-sistent with the recommendations for ethical practice as outlinedin the IASSID ethics guidelines for international multicenterresearch involving people with ID (Dalton & McVilly, 2004),which were developed for application in countries where therewas no or only limited policy and infrastructure to guide ethicalconduct in research and practice.

Over time, with more such conversations, collaborations,and continued advocacy, the research strategies are expected to berefined and implemented. A next step could be a process whichinvolves the simultaneous and synergistic development of policiesand practices at the application and governmental levels. Thesignificance of this meeting is that there is now a framework forthe path forward for disability-related research in India. There isa high priority for follow-up meetings and continuing research,especially in the topics and areas that were raised by the meetingparticipants. The IASSID Academy-sponsored meeting helpedinitiate research strategies for ID in India. However, much moreneeds to be done. The voices of individuals with disabilities, theirfamilies, and carers need also to be present. Each priority arearequires further discussion and feedback and the cooperation andinvolvement of multiple disciplines should be ongoing.

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Mapping Future Research in Disabilities—Research Initiatives in Intellectual Disabilities in India: Report of a National Interdisciplinary Meeting