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Community-Based Screening and Early Intervention for Birth Defects and Developmental Disabilities: Lessons from the RBSK Programme in India

KAR, Anita
RADHAKRISHNAN, Bhagyashree
GIRASE, Trushna
UJAGARE, Dhammasagar
PATIL, Archana
2020

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Purpose:  The Rashtriya Bal Swasthya Karyakram (RBSK) is an ongoing screening and early intervention programme for children in India. Children with birth defects and developmental disabilities from rural and urban communities are referred for treatment and therapies to early intervention centres located in urban areas. This study primarily aimed at determining caregiver uptake and compliance to referral advice of the RBSK, with the larger goal of determining the utility of the community-based screening and district-based intervention service model for caregivers of children with disabilities.

 

Method: Three administrative blocks and one municipal corporation area of Pune district, in Maharashtra, were randomly selected. The sample consisted of 115 caregivers of children with disabilities. They were interviewed using a semi-structured questionnaire that investigated uptake of referral advice, treatment outcome, current health status of the child and reasons for noncompliance, three to nine months after the first referral by the RBSK team. 

 

Results: Sixty-four caregivers were aware of their child’s disability, but most children remained untreated. After screening and referral by the RBSK team, compliance was high for treatable conditions like congenital heart defects. Treatment was discontinued for 83% (24 out of 29) of children with developmental disabilities. Reasons for discontinuation included lengthy waiting time, distance to facility, difficulty in transporting the child, loss of wages, and denial of the child’s disability.

 

Conclusion and Implications: The results indicated that the RBSK programme provides treatment opportunities for children who are left undiagnosed and untreated in the community. Providing rehabilitation services at district centres is a barrier for service uptake. Alternative models such as early childhood development screening and integrating rehabilitation services at the primary healthcare level may be more feasible to provide services for children with disabilities in India.

Integrating geospatial data and measures of disability and wealth to assess inequalities in an eye health survey: An example from the Indian Sunderbans

MOHANTY, Soumya
et al
December 2019

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The Sunderbans are a group of delta islands that straddle the border between India and Bangladesh. For people living on the Indian side, health services are scarce and the terrain makes access to what is available difficult. In 2018, the international non-governmental organisation Sightsavers and their partners conducted a population-based survey of visual impairment and coverage of cataract and spectacle services, supplemented with tools to measure equity in eye health by wealth, disability, and geographical location. Two-stage cluster sampling was undertaken to randomly select 3868 individuals aged 40+ years, of whom 3410 were examined

 

Int J Environ Res Public Health. 2019 Dec; 16(23): 4869

doi: 10.3390/ijerph16234869

India’s disability estimates: Limitations and way forward

RAKHI, Dandona
et al
September 2019

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With India preparing for the next decennial Census in 2021, disability estimates and data collection methodology between the Census 2011 and the most recent population-level survey for India and its states were compared, to highlight the issues to be addressed to improve robustness of the disability estimates in the upcoming Census.

 

Data from the Census 2011 and from two complementary nationally representative household surveys that covered all Indian states with the same methodology and survey instruments–the District-Level Household Survey-4 (DLHS-4, 2012–2013) and the Annual Health Surveys (AHS three rounds, 2010–11, 2011–12 and 2012–13) were used. Data from DLHS-4 and AHS 2012–13 round were pooled to generate estimates for the year 2012–13. Data collection methodology between the sources was compared, including the review of definitions of each type of disability. The overall, mental, visual, hearing, speech, and movement disability rate (DR) per 100,000 population were compared between the sources for India and for each state, and the percent difference in the respective rates was calculated
 

Disability Inclusion Helpdesk Report : What works in mental health services and community interventions to support people with mental health conditions and psychosocial disabilities: a rapid evidence review

MILLS, China
AHLENBÄCK, Veronica
HAEGEMAN, Emma
September 2019

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Summaries on the findings from the following queries:

What works to develop quality services and community interventions to support people with mental health conditions and psychosocial disabilities and wellbeing for all, across the lifecycle?

What are examples of effective interventions in this area?

Introduction of Indian Sign Language in Inclusive Education

GOSWAMI, SP
GGR, Anita Ravindra
SHARMA, Kanchan
2019

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Purpose:  The predominant mode of human communication is speech, and whenever it is hindered, humans resort to the tactile-kinaesthetic mode.  Use of sign language by persons with speech-hearing impairments is a classic example of such adaptation. The Demonstration School at the Regional Institute of Education in Mysuru, South India, undertook training of typically-developing students in Indian Sign Language (ISL), so as to facilitate communication and instruction of students with hearing impairment who are in mainstream learning environments. 

 

Method: Training in ISL was imparted to140 typically-developing students in higher primary classes. Twenty-four 40-minute sessions were conducted over a month. After theoretical orientation in logical bases of manual communication, practical training commenced with elementary manual alphabets, progressed through essential daily-life vocabulary necessary to construct simple sentences and carry out general conversations, and culminated in signing the Indian National Anthem.

 

Results: Typically-developing students gained primary benefits such as improved awareness about non-verbal communication modes, mastery of basic skills in ISL, and positive attitudes towards sign languages.

 

Conclusion: The UNCRPD 2006 authorises sign language as the linguistic identity of the Deaf, and encourages the use of sign language in learning environments. Future research should add to the findings on secondary benefits in the form of scholastic and sociometric advantages derived by students with hearing impairments who receive instructions in sign language in mainstream learning environments.

 

Barriers and Facilitators to Community Ambulation in Maharashtra, India: Perception of Individuals with Stroke

SHAIKH, Atiya A
ATRE, Janhavi Jagdish
2019

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Purpose: The study aimed to understand the self-perceived environmental barriers/ facilitators to community ambulation among stroke survivors in Maharashtra State, India.

 

Method: The Facilitators and Barriers Survey /Mobility Questionnaire (FABS/M) was used to collect information from a convenience sample of 50 individuals with stroke. Data was analysed using descriptive statistics in Statistical Package for Social Sciences (SPSS) 22.00.

 

Results: Curbs, gravel surfaces, rain, noise, and crowd were marked as barriers by 56%, 58%, 52%, 36% and 50% of the participants, respectively. Ramps, elevators, and flat surfaces were reported as facilitators by 42%, 70% and 82% of the participants, respectively. Participants also mentioned the absence of automatic doors and escalators in community areas (92% and 88%), specialised exercise equipment, handrails and specialised bathroom equipment at home (92%, 50% and 52%), and inaccessibility to public places (50%), as barriers to easy mobility. 

 

Conclusions: To enhance community mobility of individuals with stroke, environmental barriers should be reduced and facilitators should be enhanced. The marked absence of facilitators in the environment should be rectified and appropriate steps should be taken to enhance ambulation. 

 

Limitations of the study are the small sample size. Factors like balance, economic status, physical activity of the stroke individuals and severity of stroke were also not considered.

Intersections of Disability and Gender in Sports: Experiences of Indian Female Athletes

SETH, Nainika
DHILLON, Megha
2019

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Purpose: This qualitative study aimed to compare the experiences of two groups of female athletes - those with and without visual disability- who participate in sports.

 

Method: In-depth interviews were conducted with 16 athletes and thematic analysis of the data was done.

 

Results: Both groups identified various benefits of engaging in sports, including increased fitness and higher self-esteem. Para-athletes felt that sports provided them with opportunities to break stereotypes associated with disability. Both groups also identified certain barriers impeding sports participation, the most pervasive of these being poor infrastructure.  In terms of differences, athletes without disability were initiated into sports at a much earlier age, had enjoyed more freedom in choosing their sport, and were given more family support than the para-athletes.

 

Conclusion: An analysis of the findings in terms of the Self-Determination Theory (Deci & Ryan, 2002) indicated that needs for competence, autonomy and relatedness were being more wholly met through sports-related experiences for athletes without disability than for the para-athletes.

 

Implications: Current conditions within para-sport need to be improved by providing more sporting choices to athletes with disability, easier access to sports opportunities at an earlier age, development of self-efficacy with regard to sports, challenging of stereotypes, and generating awareness among parents that sports can be a viable and safe option for their daughters.

Disability, CBR and inclusive development (DCID), Vol 30, No 4 (2019)

2019

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Original Research Articles

  • The Cultural Validation of Two Scales assessing Albinism - related Social Stigma among High School Students in Tanzania
  • Increasing Attention and Mood of Post-Stroke Clients using Natural Restorative Environment
  • Psychosocial Functioning in Children with Dyslexia: Perspectives from Parents, Counsellors and Teachers
  • Association of Occupational Stress and Emotional Intelligence among Physiotherapists in Malaysia: A Cross-sectional Study
  • Introduction of Indian Sign Language in Inclusive Education
  • Barriers and Facilitators to Community Ambulation in Maharashtra, India: Perception of Individuals with Stroke

 

Brief reports

  • An Educational Intervention to Promote Access to Rehabilitation for People Living with HIV

Disability, CBR and inclusive development (DCID), Vol 30, No 3 (2019)

2019

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Original Research Articles

  • Quality of Life of Persons with Disabilities in Southern Nations, Nationalities, and Peoples’ Region, Ethiopia
  • Health-Related Quality of Life of Wheelchair Fencers, Sedentary People with Disability and Conventional Fencers in Brazil, Assessed by Short Form 36 (SF-36)
  • Environmental Accessibility Assessment for People with Vision, Hearing and Speech Disabilities in Mongolia
  • Impact of Exercise Training on Depression among People with Type 2 Diabetes Mellitus: A Narrative Review
  • Intersections of Disability and Gender in Sports: Experiences of Indian Female Athletes
  • ‘Enabling Access’: A Pilot Study on Access and Use of Assistive Products in the Northern Province, Sri Lanka

 

Brief reports

  • Happiness and Resilience among Young Physically Disadvantaged Employees in India: A Pilot Study
  • Barriers Faced by Persons with Disabilities in Formal Employment in India

National Conference on Assistive Technology for All 2030, Bengaluru, India, August 2-3, 2019

GHOSH, Ritu
RAMAN, Lakshmi
Eds
August 2019

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The National Conference on Assistive Technology for All – 2030 was held in Bangalore on August 2 – 3, 2019 in celebration of 25 years of Mobility India.

The conference involved 27 distinguished speakers and experts in the field from WHOSEARO, Ministry of SJ&E and the National Institutes, the IITs, IISc, Global Disability Innovation Hub, BIRAC, DEBEL, BeTIC, professional bodies, National Institute of Design, industry and NGOs.

The broad objective of the conference was to bring together all the relevant stakeholders to discuss, identify and agree on key steps to augment AT sector and develop a national AT alliance. 

  • Global Cooperation on Assistive Technology (GATE) and its relevance to India
  • WHO Perspective on Assistive Technology
  • Perspective from MSJ&E on Assistive Technology Provision in India
  • Global Disability Innovation Hub and AT Innovation in India
  • Role of AT in SCI-Healthy and Hygienic Bladder & Bowel Management
  • Assistive Technology (AT) and Intellectual Disability (ID): Exploring the Underutilization of Technology for Persons with Intellectual Disabilities
  • Humanitarian Emergency Response and Assistive Technology – ICRC Insight 
  • Assistive Technology in Geriatrics and Palliative Care
  • Exploring Barriers to the Use of Assistive Technology for PWDs in India
  • An in-depth user study on Problems Faced by Axillary Crutch Users in India
  • “Perception towards use of Assistive Technology in Higher Education: A case study”
  • A Wheelchair in Rural Bangalore: What do the Users think?
  • Gaze-based Assistive Technologies
  • Innovative Assistive Technology Solutions
  • Human Resource Development and Assistive Technology
  • Assistive Technologies in Universal Health Coverage
  • AT in the Era of AI: How Advanced Technology is Influencing New Designs
  • Independent Walker for Diplegic Cerebral Palsy Children
  • Functional Electrical Stimulation for Drop Foot and/or Knee Instability
  • Enabling Fabrication of Prosthetic and Orthotic Devices with Additive Manufacturing via Digital Transformation
  • Innovations in Different Types of Biomedical Devices
  • Universal Design 
  • Assistive Technologies: Idea to Invention to Innovation to Impact
  • AT – Make in India
  • Information and Communication Assistive Technology & Make in India
  • A Guideline for Service and Delivery to Ensure Quality of Life of Elderly People
  • User-Centred Approach in Creating Impactful Solutions for the Disabled

State of the Education Report for India 2019: Children with disabilities

RAMCHAND, Mythili
et al
July 2019

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The past twenty years in India have seen significant legal and political commitments towards universalization of education and the right to education. This report documents the considerable effort undertaken in the country to protect the right to education of children with disabilities (CWD) and outlines what remains to be done to achieve its full realization. 

The report is based on extensive research of national and international literature and attempts to provide comprehensive information on the current status of education of CWDs, evidence of achievements and continuing concerns. It extensively draws upon a series of thematic research studies between 2017 and 2018. 

The report has taken a participatory approach with contributions, in the form of case studies, from specialists and those working directly in the field. 

Disability, CBR & Inclusive Development (DCID), 2019, Vol. 30 No, 2

2019

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Research articles are:

  • Stereotypes about Adults with Learning Disabilities: Are Professionals a Cut Above the Rest?
  • Perceptions of Primary Caregivers about Causes and Risk Factors of Cerebral Palsy in Ashanti Region, Ghana
  • Changes in Social Participation of Persons Affected by Leprosy, Before and After Multidrug Therapy, in an Endemic State in Eastern India
  • Users’ Satisfaction with Assistive Devices in Afghanistan
  • Perceived Benefits and Barriers to Exercise among Physically Active and Non-Active Elderly People

Brief reports are:

  • The GRID Network: A Community of Practice for Disability Inclusive Development
  • A Preliminary Report of the Audiological Profile of Hearing Impaired Pupils in Inclusive Schools in Lagos State, Nigeria

An experiential report is given:

  • MAANASI - A Sustained, Innovative, Integrated Mental Healthcare Model in South India

 

NOTHING ABOUT US WITHOUT US! Cooperation with organisations of persons with disabilities in community programmes A learning guide

LIGHT FOR THE WORLD
June 2019

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Good practices of DPO (Organisations of Persons with Disabilities) involvement in Light for the World programmes are analysed and successful ways of supporting DPO empowerment are reported. The paper is based on interviews and focus group discussions with organisations of persons with disabilities (DPOs), other project partners and Light for the World programme colleagues in Bolivia, Ethiopia, Mozambique, Northeast India and South Sudan

Barriers in Dental Care Delivery for Children with Special Needs in Chennai, India: A Mixed Method Research

KRISHNAN, Lakshmi
IYER, Kiran
KUMAR, Parangimalai Diwakar Madan Madan
2019

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Purpose: The study aimed to assess the barriers faced by children with disability, both qualitatively and quantitatively, from the perspectives of caregivers and dental practitioners.

 

Methods: A concurrent mixed method design was used. A sample of 195 dentists and 100 caregivers was selected through convenience sampling. A prevalidated questionnaire was used to assess the barriers faced by the children with disability in their care. Focus group discussions and in-depth interviews were conducted with caregivers. Descriptive statistics were computed using SPSS version 20 and thematic analysis of qualitative data was done using NVivo software.

 

Results: 195 dentists and 100 caregivers responded to the survey. Majority of practising dentists (83.7%) reported inadequate training in handling children with special needs, while caregivers (38%) reported fear of dentist among the children as major barriers experienced in utilising dental services.

 

Conclusion and Implications: This study helps to identify the barriers faced by children with special healthcare needs. The findings highlight the need for hands-on training to be incorporated into the dental curriculum. It also suggests that improvements be made in dental clinics to accommodate these children in comfort. Due to limitations of the study, it is suggested that there is a need for further longitudinal studies that involve other family members of children with disability.

Sightsavers' approach to making health services inclusive for everyone

Sightsavers
April 2019

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Sightsavers has produced a new film that sets out our work to make health care services accessible and inclusive for everyone. It focuses on our programmes in Bhopal, India and Nampula, Mozambique. This highlights how we work and share learnings globally, but also shows how programmes can be made locally relevant by working with partners with direct experience.

The film showcases some of the people who work hard to make our inclusive health programmes a success, from Sightsavers experts and government health workers to leaders of disabled people’s organisations.

To find out more our inclusive health work and how we are developing best practice in terms of inclusive health programmes, visit our website: https://www.sightsavers.org/disability/health/

India inclusion summit 2018

March 2019

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India Inclusion Summit is a community driven initiative that aspires to build an Inclusive India by 2030. It is an annual event that began in 2012 to create awareness about disabilities and the need for Inclusion. The event brings together thought leaders and unsung heroes from the field of disability and inclusion to deliberate, discuss and drive change in our society.

 

Videos of some of the presentations are available including:

My Journey and ‘Deaf gain’ing an accessible India:  Vaibhav Kothari (18 mins), signed

You’re not just special. You’re Special Edition:  SwarnaLatha (11 mins)

Don’t let disability come in the way of things you love: Zoyeb Zia (10 mins), signed

The Adventure of Autism and quest to serve each other: Rupert Isaacson (20 mins), signed

Making a billion people read despite their disabilities: Brij Kothari (21 mins), signed

The ability needed to be whoever you want to be: Devika Malik (13 mins), signed

Everyone has something to give: Suchitra Shenoy (11 mins), signed

From being inclusive to doing acts of inclusion: Yetnebersh Niguissie (12 mins), signed

Finding your missing piece: Jerry White (18 mins), signed

Listening to the voice within that opens infinite possibilities: Rajni Bakshi (15 mins), signed

Being a mother is the most satisfying role: Suhasini Maniratnam (21 mins) signed

 

 

CII launches the India Business Disability Network, a unique platform for companies to enable inclusion

ILO Global Business and Disability Network
February 2019

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The Confederation of Indian Industry (CII) launched the India Business Disability Network (IBDN) at the National Conference on ‘Mainstreaming Inclusivity & Accessibility – Enabling Industry’ in Delhi on 21 January 2019.

The IBDN is a National Business and Disability Network that promotes and facilitates an inclusive, accessible and a barrier-free workplace within the corporate sector, and set up in joint partnership with the International Labour Organisation (ILO) and the Employers’ Federation of India (EFI). IBDN is a one stop solution to share learnings and best practices, create context-based solutions, facilitate partnerships, facilitate inclusion, and create & dissemination knowledge

Leaving no-one behind: Building inclusive social protection systems for persons with disabilities

KIDD, Stephen
et al
February 2019

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How to make social protection systems and schemes more inclusive of persons with disabilities is examined. Social protection can play a key role in empowering persons with disabilities by addressing the additional costs they face, yet the majority of persons with disabilities are currently excluded from schemes.

The report identifies a wide range of barriers persons with disabilities experience in accessing social protection to be overcome. It calls for better data on disability, disability-specific and old age pension schemes and expanded coverage; adapting communications about social protection schemes; and improving disability assessment mechanisms. The research underpinning the report comprised involved a review of the literature, an analysis of household survey datasets, and consultations with key stakeholders and persons with disabilities in seven low- and middle-income countries: Brazil, India, Kenya, Mauritius, Rwanda, South Africa and Zambia.

Topics covered include:

  • Types of social protection schemes for persons with disabilities
  • Levels of investment in social protection for persons with disabilities
  • Coverage of persons with disabilities by social protection
  • Impacts of social protection on persons with disabilities
  • Barriers to accessing social protection and measures to address them
  • Links between social protection schemes and other public services

Leaving no-one behind: Building inclusive social protection systems for persons with disabilities

KIDD, Stephen
et al
February 2019

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This report identifies a wide range of barriers persons with disabilities experience in accessing social protection to be overcome. It calls for better data on disability, disability-specific and old age pension schemes and expanded coverage; adapting communications about social protection schemes; and improving disability assessment mechanisms. The project involved a review of the literature, an analysis of household survey datasets, and consultations with key stakeholders and persons with disabilities in seven low- and middle-income countries: Brazil, India, Kenya, Mauritius, Rwanda, South Africa and Zambia.

Impact of training programmes for people with disabilities (Disability Inclusion Helpdesk Report 5)

FRASER, Erika
ABU AL GHAIB, Ola
February 2019

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 Supporting people with disabilities into employment is important not only in providing income, but research in Nepal has shown positive life changes including increased confidence, social status, and acquiring new skills. This document provides a rapid review of the evidence of the types of interventions used to reduce barriers and support people with disabilities into employment, as well as the impact of training programmes on employment and/or livelihood outcomes (Section 4). Case studies are included in Section 5 and Annex 1 to give further details on key learnings.

 

Case studies outlined are 

  • Vocational training programme by Madhab Memorial Vocational Training Institute (MMVTI), Bangladesh 
  • Gaibandha Food Security Project (Bangladesh)
  • Self-help groups (Nepal) 
  • EmployAble programme (Kenya, Rwanda and Ethiopia) 
  • Economic Empowerment of Youth with Disabilities (Rural Uganda)
  • Access to Livelihoods Programme (India, Sri Lanka, Bangladesh, Pakistan, the Philippines, South Africa)

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