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Uncertain Personhood: Notes on Ageing and Disability in Guwahati During COVID 19

BEZBARUAH, Vaijayanti
2021

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The circumstantial understanding of the ‘normal’, ushered in by the spread of COVID 19, has been the practice of ‘social distancing’. Exercising this ‘new normal’ has been a challenge in general for society. However, it is particularly important to recognize the psycho-social impact and analyse it through the lens of ageing in relation to experiences of disability. This paper therefore attempts to explore the experiences of uncertainties in the light of ageing with disabilities, pronounced during a time of crisis, leading to social distress. With the help of telephonic conversations, the paper discusses some of the stories of people living in Guwahati, in the age-group of 70 to 90, drawing on an intersectional understanding of personhood, social suffering, and symbolic disability. It is also an attempt to look into the aspect of wellbeing (physical, psychological and emotional) of the elderly amidst disabilities, while stepping into unfamiliar social boundaries of ambiguity, that further disable the elderly in terms of the sudden fading of the regular support structures and systematic foundations of the ‘social’ once known to them.

Exploring the Use of Communication Supports Inventory- Children and Youth (CSI-CY) - to Identify Barriers and Facilitators in Implementing Augmentative and Alternative Communication in India: Preliminary Evidence from Two Case Reports

PM, D
SREEKUMAR, K
PHILIP, V S
2021

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Purpose: Augmentative and Alternative Communication (AAC) systems are very often abandoned by the users and caregivers due to potential challenges in implementation. This study aimed at exploring the use of Communication Supports Inventory-Children and Youth (CSI-CY), based on the International Classification of Functioning, Disability, and Health-Children and Youth (ICF-CY), as a potential tool for identifying barriers and facilitators in AAC implementation in the southern part of India.

 

Method: The CSI-CY was administered to the parents of a child with cerebral palsy and a child with autism spectrum disorder, respectively. Environmental facilitators and barriers that affect communication were rated. A semi-structuredinterview was also conducted to identify additional barriers and facilitators as identified by parents.

 

Results: Barriers related to services and policies, people and assistive technology, were identified for both cases. Additionally, the semi-structured interview identified barriers related to myths, clinicians, child, AAC use, economy andsociety.

 

Conclusion: CSI-CY is a potential tool for clinicians to systematically identify and document barriers and facilitators to implement AAC. It can further assist them in setting goals and defining the necessary intervention for each child with disability. Early use of AAC contributes to better therapeutic outcomes. Training should be given to professionals, special need educators and school teachers about different AACs and the appropriate techniques to be used. Counselling and evidence from earlier successful AAC interventions can dispel existing myths. Awareness programmes, group discussions and training on AAC can be done to eliminate barriers that may exist among rehabilitation professionals in India.

Effectiveness of Community-Based Rehabilitation on the lives of Parents of Children with Cerebral Palsy: A Mixed Method Study in Karnataka, India

Bokalial, Doly
Hossain, Forhad Md
Kumar, Senthil N S
Bajracharya, Shristi
2020

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Purpose: The study aimed to identify the effects of the CBR programme on parents of children with Cerebral Palsy, living in Karnataka State, India. It also tried to find the challenges and improvements needed to make the CBR programme more effective.

 

Method: A cross-sectional, descriptive study design was used to collect a sample of 100 parents of children with Cerebral Palsy, with GMFCS levels IV and V. The sample was drawn from various communities in Bangalore, Davanagere and Bijapur, where the services of The Association of People with Disability are available. Face-to-face interviews were conducted with the study subjects. Data was analysed by SPSS using descriptive and inferential statistics.

 

Results: It was observed that the CBR programme had a positive effect on parents’ health, knowledge, social lives and empowerment. A binary logistic regression was done to find the relationship between health, knowledge, social lives and assistive devices use. A strong association was found between all the areas (p=.001) except GMFCS and assistive devices use (p=.004) at 95% CI. The odds ratios between them were greater than 1 and showed the strong positive effect of the CBR programme on parents.

 

Conclusion: The CBR programme not only has a positive effect on children with Cerebral Palsy, but also plays an important role in parents’ lives. It contributes in a positive way to parents’ overall activity.

Unheard children. Championing deaf children’s rights to family, community, education and independence in developing countries

DEAF CHILDREN WORLDWIDE
November 2020

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This report highlights the specific barriers facing deaf children and young people and demonstrates a number of smallscale approaches and initiatives that have succeeded in breaking down some of these barriers.

Topics are:

  • Language and communication. Early diagnosis and support (example from Bangladesh). Effective and affordable hearing technology. Communication choices. What is sign language? Tanzanian Sign Language – the need for more interpreters
  • Families. Early diagnosis and support. Upskilling parents and primary caregivers. Power to the parents (example from Uganda). Catalyst for change (example from India). 
  • Communities. Deaf role models (example from Bangladesh). Challenging the public and professionals. Educating the police force (example from India). Sharing knowledge across organisations
  • Education. Intensive communication. Extra help in the classroom (example from Kenya). Making secondary education accessible. Developing sign language skills. Inclusive further and higher education
  • Independence. Listening to deaf young people. Involving deaf young people in research. Support to make informed choices. Challenging perceptions in the workplace (example from Kenya)

 

 

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.

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.

Disability and unpaid care work

CBM AUSTRALIA
2019

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This report looks at the impact of unpaid care work on disability inclusive programming and shares some practical ideas for how to address this based on experiences of CBM partners and other agencies. 

 

Programme experience discussed include:

  • Building agency and relationships: a community mobilisation approach in Jharkhand, India
  • Engaging men as care advocates in the Phillipines
  • Recognising and supporting care givers in Ghana
  • Good practice

 

Enabling Education Review Issue 8 - 2019: Family involvement in inclusive education

CORCORAN, Su
LEWIS, Ingrid
Eds
2019

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Articles in this issue include:

Working together to advocate for our children in Trinidad and Tobago

The inclusion of deaf children in Malaysia: parental support and advocacy

Family-mediated intervention to support inclusion in Bulgaria

Creating inclusivity and diversity through a parent support group in Kolkata, India 

The positive impact of family involvement in inclusive education, Tetouan, Morocco

Lived Experience of Psychosocial Disability and Social Inclusion: A Participatory Photovoice Study in Rural India and Nepal

FERNANDES, Helen Lea
CANTRILL, Stephanie
SHRESTHA, Ram, Lal
RAJ, Rachel, Belda
ALLCHIN, Becca
KAMAL, Raj
BUTCHER, Nicole
GRILLS, Nathan
2018

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Purpose: This study aimed to investigate the experiences of people living with a psychosocial disability in rural India and Nepal, and to highlight key barriers and enablers for inclusion.

 

Method: Participatory action research approaches and Photovoice methodology were employed to investigate the lived experience of 32 participants in rural India and Nepal. There were 12 participants and 4 caregivers of people with psychosocial disability from each of the two countries. Semi-structured interviews with study participants were transcribed and analysed thematically to answer the study question.

 

Results: The findings revealed themes related to various supports, meaningful engagement in activity, and community awareness. Among these categories were both enabling and impeding factors to inclusion, the presence or absence of which was typically associated with improvements or worsening of symptoms respectively.

 

Conclusions and Implications: This study underscores the need for integrated community-based approaches that are multisectoral, inclusive of family, and strengthen community responses. Photovoice was also shown to be a feasible research methodology for providing insights into the lived experience of people with psychosocial disability and for fostering their empowerment

Everybody Matters: Good practices for inclusion of people with disabilities in sexual and reproductive health and rights programmes

Van SLOBBE, Caroline
November 2017

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This publication provides introductory chapters from two activists who work to create better opportunities for people with disabilities in Nigeria and India. Subsequently, the challenges that organisations worldwide have encountered whilst improving the access to and knowledge of sexual and reproductive health and rights for people with disabilities are presented. Ways in which they managed to find solutions and the results achieved are reviewed. Some cases show the importance of a more personal approach whilst others emphasise the advantage of changing systems and policies. Different regions, types of disabilities and various SRHR-topics are reflected in these stories. All cases provide lessons learnt that contribute to a set of recommendations for improved responses. The closing chapter highlights the challenges, solutions, and ambitions that are presented and lead up to a concise overview of recommendations.  

Good practice examples include:

A shift in SRH programming (Nepal)

Breaking Barriers with performance art (Kenya)

Her Body, Her Rights (Ethiopia)

People with disabilities leading the way (Israel Family Planning Association)

Best Wishes for safe motherhood (Nepal)

It’s my body! (Bangladesh)

Calling a spade a spade (Netherlands)

Four joining forces (Colombia)

Change agents with a disability (Zimbabwe)

Tito’s privacy and rights (Argentina)

Sign language for service providers (Kenya)

Parent Empowerment in Early Intervention Programmes of Children with Hearing Loss in Mumbai, India

KULKARNI, Kasturi Arun
GATHOO, Varsha Shrikant
2017

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Purpose: Since families are perceived to be active agents in the early intervention programmes of young children with disabilities, professionals ought to treat parents as equal partners and keep them informed and involved in various aspects of the intervention.  This study aimed to explore the areas in which parent empowerment is currently being facilitated in the early intervention centres for children with hearing loss.

 

Method: A qualitative research with conversational analysis was the approach used. Focus group discussions with the two primary stakeholders, namely parents and special educators, were held separately at five sites in Mumbai, to gather their views on the existing areas of empowerment. It was also decided to explore the felt needs of parents in this regard. Person triangulation was used to ascertain the credibility of the data.

 

Results: Conversational analysis yielded 4 themes with respect to parents: Parental knowledge, involvement, support and needs. 

 

Conclusion and Implications: The study highlighted the gaps in parent empowerment in the programmes undertaken by early intervention centres.  A recommendation is made to develop a common framework for empowering parents. It is envisaged that such a framework will bridge the gap between what currently exists for parents, their felt needs, and current global practices.  This framework could also assist in measuring family empowerment outcomes.

Positive and Negative Impacts on Caregivers of Children with Intellectual Disability in India

ADITHYAN, G S
SIVAKAMI, M
JACOB, John
2017

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Purpose: The factor integral to the empowerment of children with intellectual disability is the presence and active involvement of support mechanisms such as their family and their caregivers. This study assesses both positive and negative impacts on parents/caregivers of children with intellectual disability in Oddanchatram block of Dindigul District in Tamil Nadu, India.

 

Method: Mixed method techniques (quantitative and qualitative) were used.

 

Results: Although many disturbing realities in the family situation were revealed, there were also positive impacts which were a hopeful sign.

 

Conclusion: Empowering the caregivers of children with intellectual disability is the first step towards inclusion of these special children in society. Various strategies to achieve this goal are discussed in the study. 

Effect of Multidisciplinary Intervention on Clinical Outcomes of Children with Autism Spectrum Disorder in Mumbai, India

DALWAI, S H
MODAK, D K
BONDRE, A P
ANSARI, S
SIDDIQUI, D
GAJRIA, D
2017

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Purpose: To analyse clinical outcomes in terms of functional changes in children with Autism Spectrum Disorder (ASD), before and after receiving a multidisciplinary developmental intervention programme.

 

Methods: Structured goal-oriented multidisciplinary intervention, individualised to each child, was implemented through 5 child development centres in Mumbai, India, in 2014-2015. Secondary data analysis of 38 children diagnosed with ASD, in the age group of 2.1 - 6.1 years, was conducted. All children received occupational therapy and speech therapy, and parental counselling was also done. The average number of intervention sessions were 48-72 for occupational therapy (twice or thrice a week), 24-48 for speech therapy (once or twice a week) and 5-6 for parental counselling (once a month). Childhood Autism Rating Scale (CARS) and Vineland Social Maturity Scale (VSMS) were used for assessment, before and after intervention.

 

Results: Mean positive difference in CARS total scores through paired t-test was 4.18 (p < 0.0001). Significant positive changes in functional ability were observed in most of the sub-scales (relating to people; object use; visual response; verbal and non-verbal communication; taste, smell and touch response and use; level and consistency of intellectual response and general impression). Paired t-test also showed significant positive changes on all VSMS sub-scales, exceptSocialisation.

 

Conclusions: The model used in this multidisciplinary intervention, and adherence to its protocols, has the potential to improve functional ability (or the child’s adaptation to his/her condition) in children with ASD, in a region with limited awareness of developmental disabilities.

 

Limitations: Separate effects of factors outside the intervention could not be tested due to inadequate sample sizes for sub-analyses. Results also need to be validated by tests that do not depend on parental reporting (e.g., CARS and VSMS) but assess the performance of the child instead.

Employment rights of persons with disabilities in India

RIOUX, Marcia
et al
2017

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This report presents an overview of individual experiences and systemic data concerning the right to work for persons with disabilities in India. The report is part of the AWARE Project conducted by DRPI in Hyderabad in Andhra Pradesh, India. A total of 78 people with various physical, sensory and intellectual disabilities participated in this study. The research team also consists of people with various disabilities. Individual experiences have been collected through individual interviews or focus groups discussions. Information was collected about the barriers and challenges to participate in the workforce. People with disabilities were asked by other people with disabilities to tell their own stories about when they have been left out, treated badly or prevented from participating in the workforce because of their disability. These stories give us information about the real human rights situation faced by persons with disabilities. Personal interviews were conducted in Hyderabad and Secundarabad cities in Andhra Pradesh, India. A total number of 78 people were interviewed. The data was collected, collated and interviews conducted by persons with disabilities

Translation of Revised Version of Developmental Coordination Disorder Questionnaire (DCDQ’07) into Kannada – Results of Validation

Girish, Srilatha
Raja, Kavitha
Kamath, Asha
2016

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Purpose: The revised version of Developmental Coordination Disorder Questionnaire (DCDQ’07) is a widely used parent-reported screening tool for DCD. The tool is not available in any Indian language. This article reports on the results of the cross-cultural validation of DCDQ’07 into Kannada, a South Indian language.

 

Methods: The questionnaire was first translated into Indian English to overcome differences in phraseology between Canadian and Indian English (DCDQ’07- IE). Following this, forward translation, synthesis, back translation, expert committee review, and pre-testing of the translated version were conducted to obtain the Kannada version of the questionnaire (DCDQ’07-K). Minor examples, in keeping with local usage, were added. 160 parents were recruited, among whom 80 were parents of children with motor difficulties and 80 were parents of children without motor difficulties. They rated their children on DCDQ’07- IE. After a washout period of 2 weeks, the same parents once again rated their children on DCDQ’07-K.Statistical analysis for reliability, construct validity, and Rasch diagnostics (person and item reliability, fit statistics, category functioning of scores and person-item map) were conducted.

 

Results: Internal consistency (Cronbach’s Alpha>0.8), parallel form test-retest reliability (ICC=0.95 at 95% CI) and floor and ceiling were acceptable. Principal component analysis (PCA) showed three factors accounting for total variance of 59.29% and 58.80% in DCDQ’07-IE and DCDQ’07-K respectively. Item reliability (<0.8) and separation index (<2) were poor in both versions. Category functioning was effective. Person-item map represented inconsistency in spread of items in difficulty and person’s abilities. Qualitative review of the parents revealed that they were unfamiliar with the performance of their children on sports-related items and hence scored their child on the basis of conjecture.

 

Conclusion: Translation into Kannada was fairly successful. Although traditional tool properties produced satisfactory results, Rasch analysis demonstrated problems with the tool. This could be due to cultural reasons. Hence DCDQ’07-K should be interpreted with caution when rated by parents in the local context.

Enabling education review, issue 4

ENABLING EDUCATION NETWORK
December 2015

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This newsletter contains a variety of articles about inclusive education in several countries around the world. The topics focus mostly on funding, managing and sustaining inclusive education; engaging and empowering beneficiaries in finding solutions; facilitating parental and child involvement and early childhood education

Enabling Education Review, issue 4

Prosthetics & orthotics impact assessment : India and Bangladesh

COCHRANE, Helen
ROSARIO, Demetria
SINGH, Anil
GHOSH, Ritu
June 2015

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Mobility India is the only International Society for Prosthetics and Orthotics​ (ISPO) recognised program in India offering training for ISPO Category II single discipline. From 2002 to the time of the study Mobility India enrolled two hundred and twenty-one students. This study was conducted in association with ISPO’s USAID funded programme: ‘Rehabilitation of physically disabled people in developing countries’. Activities included: field visits to India and Bangladesh, interviewing Ministry officials, Heads of Clinical Services and Heads of Prosthetic and Orthotic Departments;  a partial audit of graduate clinical skills and competencies and determining the professional development needs of graduates in selected South-East Asian countries; and listening to service users, hearing stories of how services had directly impacted upon their lives. Services in India and Pakistan are outlined and 22 recommendations to help to further develop prosthetic and orthotic services are provided.

The Development of a New Quality of Life Questionnaire for Children with Hearing Loss - The Impact of Hearing Loss on Children (IHL-C): Field Testing and Psychometric Evaluation

Raj, Lavanya J
Pitchai, Swarnakumari
2015

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Purpose: To report the development of user-defined, multidimensional, psychometrically sound Quality of Life questionnaires – Impact of Hearing Loss on Children – IHL-C 69 and Brief IHL-C for children with hearing loss, in two languages -Tamil and English.

 

Methods: 421 problem statements from previous qualitative studies were reduced to a 220-item questionnaire with 7 domains (educational implications, social integration, psycho-social well-being, speech, language and communication, family relationships, leisure time activities and general functioning). After field testing, the domain of leisure time activities was dropped, resulting in a 103-item self-administered questionnaire with 6 domains. This 103-item questionnaire was translated from Tamil to English, and self-administered by children with hearing loss (11-18 years of age) in Special schools (n=100) and Integrated schools (n=100), as well as by normal controls in Integrated schools (n=200). Standard methods were used for item reduction and to evaluate psychometric properties.

 

Results: Psychometric item reduction produced the 69-item IHL-C69 (long version) and 48- item Brief IHL-C (brief version) questionnaires. Psychometric evaluation showed that all the domains of both the questionnaires had good acceptability, high internal consistency (alpha >0.80; intrinsic validity >0.80) and test-retest reliability (0.86).The questionnaires significantly distinguished between the children with hearing loss and the normal controls. The domains of both the questionnaires showed moderate evidence of convergent validity, and discriminant validity derived through hypotheses testing showed mixed results. The translation validity was also determined.

 

Conclusion: The IHL-C 69 and Brief IHL-C are reliable and valid user-defined, multidimensional questionnaires, available for the first time in both Tamil and English languagesin Tamil Nadu, India. Designed to analyse the impact of hearing loss and to determine the quality of life of children with hearing loss, the questionnaires could be used to prioritise the goals for rehabilitation intervention for these children.

‘Ask us what we need’: Operationalizing Guidance on Disability Inclusion in Refugee and Displaced Persons Programs

PEARCE, Emma
2015

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Persons with disabilities remain one of the most vulnerable and socially excluded groups in any displaced community. Barriers to accessing humanitarian assistance programs increase their protection risks, including risk of violence, abuse and exploitation. Women’s Refugee Commission has been supporting the United Nations High Commissioner for Refugees and implementing partners to translate guidance on disability inclusion into practice at field levels through the provision of technical support to eight country operations. In the course of the project, WRC has consulted with over 600 persons with disabilities and care-givers and over 130 humanitarian actors in displacement contexts. Key protection concerns identified include a lack of participation in community decision making; stigma and discrimination of children and young persons with disabilities by their non-disabled peers; violence against persons with disabilities, including gender-based violence; lack of access to disabilityspecific health care; and unmet basic needs among families of persons with multiple impairments. Suggested strategies to further advance disability inclusion in humanitarian programming include: strengthening identification of protection risks and case management services for persons with disabilities; facilitating contextspecific action planning around key guidelines; and engaging the disability movement in advocacy on refugee issues.

 

Disability and the Global South (DGS), 2015, Vol. 2 No. 1

Treated worse than animals : abuses against women and girls with psychosocial or intellectual disabilities in institutions in India

SHARMA, Kriti
December 2014

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This in-depth, illustrated report on the abuses of female patients with psychosocial or intellectual disabilities at institutions in India found that patients experience widespread neglect and abuses of their rights, including denial of legal capacity, a lack of community-based support and services, verbal and physical violence as well as involuntary treatment and admission. It recommends that “India undertake urgent reforms to guarantee the legal capacity of people with psychosocial or intellectual disabilities and take steps to shift from institutional to community-based care and services for people with disabilities”, with specific recommendations for central and state government level, national and state commissions and international donors

 

Note: Easy-to-read version, summary and video also available

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