Early Childhood Development Is Not Enough: In Defense of Children with Developmental Delays and Disabilities and Their Right to Family-Centered Early Childhood Intervention (In the Global South).

The international recognition of the critical importance of the early childhood phase has been firmly established through decades of rigorous research, evidence-based practices, and undeniable evidence of the returns on investment made during this formative period. Consequently, early childhood development has emerged as a top priority on both national and international agendas. This momentum reached a pinnacle in 2015 with the unanimous adoption of the 17 Sustainable Development Goals (SDGs) by the United Nations, which placed a particular emphasis on children under the age of five within the education-focused SDG 4, notably target 4.2, centered on ensuring that all girls and boys are ready for primary education through the provision of accessible "quality early childhood development, care and pre-primary education". However, the Global South reflects the glaring omission of addressing the needs of children at risk of poor development due to disabilities. This paper underscores the imperative for specialized early childhood intervention tailored to young children with disabilities and their families, commencing as early as possible following birth. It advocates for Early Childhood Intervention (ECI) as a service distinct from general Early Childhood Development (ECD), emphasizing the crucial role of families as active partners from the outset. Furthermore, the paper strengthens the case for Family-Centered Early Childhood Intervention (Fc-ECI) through the integration of evidence-based practices and an in-depth description of one such program in South Africa with specific reference to deaf and hard-of-hearing infants and their families. This model will be guided by core concepts outlined in WHO and UNICEF Early Childhood Intervention frameworks. Through this exploration, the paper aims to shed light on the urgent need for inclusive approaches to early childhood development, particularly for children with disabilities, and to advocate for the adoption of Family-Centered Early Childhood Intervention as a cornerstone of global efforts to ensure the holistic well-being and development of all children.

Disabilities in Early Childhood: A Global Health Perspective.

Prior to the launch of the United Nations' Sustainable Development Goals (SDGs) in 2015, childhood disability was rarely considered an important subject in global health. The SDGs till 2030 now require that children under 5 years who are at risk of not benefitting from inclusive quality education are identified, monitored, and promptly supported. A new tool for identifying children who are not developmentally on track has been developed by UNICEF but has limited sensitivity for detecting children with disabilities due to reliance on parental assessment of child behavior in certain everyday situations. In this paper, we identified conditions that are commonly associated with developmental disabilities based on the International Classification of Diseases (ICD) codes and clarified the concept of "developmentally on track" as it relates to children with developmental disabilities and developmental delays. We summarized the latest evidence on the global burden of developmental disabilities in children under 5 years based on the diagnostic and functional approaches for measuring disabilities at the population level. We highlighted the global health context for addressing the needs of children with developmental disabilities and provided an overview of the opportunities and the role of pediatric caregivers in supporting children with developmental disabilities.

Audiological profile of deaf and hard-of-hearing children under six years old in the "HI HOPES cohort" in South Africa (2006-2011).

BACKGROUND: This study concerns deaf children under six years in the South African HI HOPES Cohort. OBJECTIVE: To examine their audiological profile, aetiological risk factors for infant hearing loss as well as the relationship between identification, amplification and socio-economic influences. DESIGN: Using a cohort design, secondary data analysis of a pre-existing dataset demonstrated adequate representation of South African demographic characteristics. STUDY SAMPLE: A total of 532 deaf and hard-of-hearing infants enrolled in the HI HOPES early intervention programme in three provinces (2006-2011). RESULTS: The median age of identification of children with bilateral hearing loss (n = 502) was 24.0 months (IQR = 12-36 months). Infants with aetiological risk factors were identified later than those without risk factors, and the latest age of identification (28.5 months) was for those with three aetiological risk factors (n = 42). The median age of amplification was 32 months with 102 children eligible for amplification at 31.1 months still unamplified. Early identification did not imply early amplification, and the more economically advantaged a Province the smaller the gap between ages of identification and amplification. CONCLUSIONS: In a field with little population-level evidence, the size, and representativeness of this dataset makes a significant contribution to our understanding of infant hearing loss in South Africa.

Ototoxicity: A review of South African studies.

BACKGROUND: Ototoxicity is damage to cells in the inner ear after administering a toxic drug, with a resultant hearing loss. Drugs used to treat illnesses such as cancer, tuberculosis, human immuno-deficiency virus (HIV) and infections are potentially ototoxic. South Africa has one of the highest rates of HIV and tuberculosis, and thus a potentially greater degree of the population is being affected by hearing loss from the medications used to treat these illnesses. METHODS: To determine the current status of research in ototoxicity, a systematic literature review was carried out to determine the focus areas of South African studies for the period 1989-2019. From the database search engines used (Science Direct, Ebscohost and Proquest), a total of 33 relevant articles were identified, including the themes of pharmacology, audiology and knowledge. RESULTS: Studies were conducted in the three most resourced provinces in South Africa. Findings indicate that there is a need for educating doctors regarding ototoxicity and a delineation of the role of the audiologist in monitoring and management of ototoxic hearing loss. There is a resultant need for audiology training on the pharmacology of ototoxic medication, otoprotective strategies and adherence to recommended guidelines. This has implications for university audiology training programmes and curriculum planning. The need for development of South Africa-specific audiology guidelines was highlighted. CONCLUSION: Whilst it is noted that there is a lack of resources for effective implementation of ototoxicity-monitoring protocols, it is also noted that there are measures and otoprotective strategies that can be put in place without additional resources.

'The world is full of magic things, patiently waiting for our senses to grow sharper' (WB Yeats): enhancing resilience among deaf young people in South Africa through photography and filmmaking.

This article concerns deaf children and young people living in South Africa who are South African Sign Language users and who participated in an interdisciplinary research project using the medium of teaching film and photography with the goal of enhancing resilience. Specifically, this paper explores three questions that emerged from the deaf young people's experience and involvement with the project: (i) What is disclosed about deaf young people's worldmaking through the filmic and photographic modality? (ii) What specific impacts do deaf young people's ontologically visual habitations of the world have on the production of their film/photographic works? (iii) How does deaf young people's visual, embodied praxis through film and photography enable resilience? The presentation of findings and related theoretical discussion is organised around three key themes: (i) 'writing' into reality through photographic practice, (ii) filmmaking as embodied emotional praxis and (iii) enhancing resilience through visual methodologies. The discussion is interspersed with examples of the young people's own work.

Diagnostic hearing testing of infants aged 0-36 months in 3 South African provinces - Comparison of audiology records to HPCSA guidelines.

INTRODUCTION: Within the Early Hearing Detection and Intervention (EHDI) pathway, which includes the processes of screening, diagnosis and intervention for paediatric hearing loss, paediatric diagnostic audiology involves a battery of specific tests and procedures. International studies have highlighted a golden standard for diagnosis of paediatric hearing loss as based on the Joint Committee of Infant Hearing (2007) diagnostic guidelines, closely resembling the HPCSA diagnostic guidelines. There are limited South African studies on the processes and protocols followed in diagnostic paediatric audiology. OBJECTIVES: This study aims to provide a comparison for how the tests used for diagnosis of paediatric hearing loss in South Africa (within both the public and private healthcare sectors) compare to the HPCSA recommended diagnostic guidelines. METHODS: A retrospective record review of paediatric clients with hearing loss (recruited through nonprobability convenience sampling) was conducted. This study is part of a longitudinal study of 711 deaf or hard of hearing children referred to the HI HOPES early intervention programme from September 2006 to December 2011. Diagnostic data from audiology reports of 117 children between 0 and 36 months were coded and analysed. RESULTS: Large variation was found in the tests included in the diagnostic audiology reports. For 22 children (19%) a comprehensive test battery was used. Health Professions Council of South Africa (HPCSA) recommended guidelines for diagnostic testing were not followed in any of the records analysed. Components of the HPCSA recommended test battery most frequently omitted was bone conduction testing. For both electrophysiology and behavioural testing, there was limited frequency specificity information. This exclusion of information is evidence of deficiencies in data recording and management, as well as having an effect on accuracy of classification of degree and type of hearing loss. CONCLUSION: There are gaps in age-appropriate assessment protocols, which will have an effect on accurate differential diagnosis of paediatric hearing loss. Reasons for not including all testing components of the HPCSA recommended guidelines, as well as the possibility of developing guidelines more relevant to a developing world context, should be explored. There might be a need for. The impact of South African specific factors that have an effect on provision of accurate paediatric diagnostic audiology services should be determined.

The HI HOPES data set of deaf children under the age of 6 in South Africa: maternal suspicion, age of identification and newborn hearing screening.

BACKGROUND: Identification of deafness before 3 months of age substantially improves the socio-linguistic and cognitive development of deaf children. Existing studies demonstrating the feasibility of newborn hearing screening in South Africa have used small samples unrepresentative of general population characteristics. This study establishes the characteristics of the largest data set of deaf infants and their families in South Africa on which there is baseline and longitudinal data (n = 532); explores its representativeness in terms of socio-demographic features and reports on access to and quality of newborn hearing screening within the sample. It examines specifically the relationship between age of maternal suspicion of childhood deafness and age of identification of deafness by cohort characteristics. METHODS: Secondary analysis, using descriptive and inferential statistics, of a pre-existing longitudinal data set (n = 532) of deaf infants under 6 years of age, and their families, collected as routine monitoring of the HI HOPES (HH) early intervention programme. RESULTS: The HH cohort is representative in terms of racial profile and private/public health care use but displays slightly higher level of maternal education and slightly lower socio-economic status than national comparators. 102 out of 532 infants had undergone newborn hearing screening, resulting in 29 true positives, 15 of whom would have met the criteria for targeted screening. Later onset deafness does not account for the 73 false negatives. The median age of maternal suspicion (n = 247) of infant deafness was 18 months; the median age of identification of 28 months. Age of identification was unrelated to private/public health care status. The median delay between age of suspicion and age of identification was significantly longer in the public sector (7 m; IQR 0-15 m) compared to the private sector (2 m; IQR 0-8.5 m) (p = 0.035). Age of suspicion was unrelated to level of maternal education. Earlier age of suspicion did not predict earlier identification. CONCLUSION: Targeted screening as timely response to maternal suspicion offers a viable means to reduce substantially the age of identification of deafness in South Africa until implementation of newborn hearing screening on a population-wide basis can be justified.

Narrative review of EHDI in South Africa.

BACKGROUND: With 17 babies born with hearing loss every day in South Africa, there is a pressing need for systematic Early Hearing Detection and Intervention (EHDI) services. Progress is being made in offering newborn hearing screening and studies have been conducted to document these processes within South Africa. However, due to the lack of a national and holistic overview of EHDI services to date, an accurate picture of the current status of EHDI within the South African context is required. OBJECTIVE: To document and profile what has been published within the field of EHDI in South Africa over the last two decades (Jan 1995­Sept 2014) in order to gain a comprehensive overview of the current status and practice of screening and diagnosis in the field of paediatric hearing loss. METHOD: A narrative review of peer-reviewed articles related to EHDI in South Africa was conducted by searching the EBSCOHOST, SCOPUS and JSTOR databases for the period January 1995 to September 2014. RESULTS: Results indicate that over the last two decades research and publications in the field of EHDI have increased considerably. These publications have revealed extensive knowledge related to paediatric hearing screening and intervention services in South Africa; however, this knowledge seems to be limited primarily to the provinces of Gauteng and the Western Cape. Furthermore, studies pertaining to diagnosis have revealed that, although much has been written on the scientific aspects on tools for diagnosis of hearing loss, there is a lack of comprehensive information on diagnostic protocols and procedures. CONCLUSION: Despite the clear progress being made in South Africa in the field of early hearing detection and intervention, there is a need for comprehensive studies on protocols and procedures in diagnosing paediatric hearing loss. Finally, the narrative review revealed a clear need to ensure that development and growth in the field of EHDI is a national priority and extends beyond the two provinces currently showing growth.

Development of deaf identity: an ethnographic study.

This ethnographic study explores the identity development of 9 deaf participants through the narratives of their educational experiences in either mainstream or special schools for the Deaf. This exploration goes beyond a binary conceptualization of deaf identity that allows for only the medical and social models and proposes a bicultural "dialogue model." This postmodern theoretical framework is used to examine the diversity of identities of deaf learners. The inclusion of the researcher's own fluid cross-cultural identity as a bicultural "DeaF" participant in this study provides an auto-ethnographic gateway into exploring the lives of other deaf, Deaf, or bicultural DeaF persons. The findings suggest that deaf identity is not a static concept but a complex ongoing quest for belonging, a quest that is bound up with the acceptance of being deaf while "finding one's voice" in a hearing-dominant society. Through the use of dialogue and narrative tools, the study challenges educators, parents, and researchers to broaden their understanding of how deaf identity, and the dignity associated with being a deaf person is constructed.

South African Deaf education and the Deaf community.

In a special section of the american Annals of the Deaf, Deaf education and the Deaf community in South Africa are discussed. The special section is organized into 7 segments: a historical overview to establish context, the educational context, educators and learners, postgraduate education and employment, perspectives of Deaf children and their parents, sport and the arts, and spiritual lives and mental health. Throughout the entire section, however, the central focus is on the overall foundation (or lack thereof) of education for Deaf learners in South Africa.

Early hearing detection and intervention in South Africa.

Early hearing detection and intervention programs have become the standard of care to ensure optimal outcomes for infants with hearing loss, their families and society at large. The overwhelming majority of infants with congenital or early-onset permanent bilateral hearing loss are however born in developing countries like South Africa where services are scarce and awareness poor. Despite its comparatively well-developed economic and reasonably developed health care infrastructure in sub-Saharan Africa, limited information on infant hearing loss and the status of early hearing detection and intervention has been available for South Africa. Recently however, an increasing number of initiatives and reports have highlighted the extent of infant hearing loss and the status of identification and intervention services offered in the country. This report provides a review of the available evidence on infant hearing loss and the status of current early hearing detection and intervention services in South Africa.

EHDI Africa: advocating for infants with hearing loss in Africa.

Children with hearing loss who happen to reside in Africa deserve the chance to develop according to their potential as much as their peers living in more affluent regions. This leaves a moral obligation to pursue ways of initiating, developing,and growing early hearing detection and intervention services in Africa. For these reasons, the first EHDI Africa international conference was held in Johannesburg, South Africa, in 2007 (13-14 August). The theme was 'Building bridges in Africa: Early childhood development for children with hearing loss'. This special issue contains several reports from the EHDI Africa conference.

Early intervention in South Africa: moving beyond hearing screening.

Since little information is available on the outcome of early hearing intervention programs in South Africa, this article examines data on infants and families registered with a family-centred, home-based intervention program (HI HOPES) over a 12-month period in order to track the effectiveness of the holistic unbiased support to families of infants and toddlers with a hearing-loss. The aim of HI HOPES, which is based on the SKI-HI model of early intervention in the USA, is to ensure that families are enabled to make informed choices for their unique infant. Data were gathered on 32 infants ages birth to three years and their families using both qualitative and quantitative measures which included analysis of demographic data, quarterly language assessments, and parent satisfaction surveys. The report on the pilot year of this early intervention program shows that, though the sample is small, there is significant improvement in infant receptive and expressive language for infants identified before seven months of age, as well as a high level of satisfaction from families who have received services.

Towards integrated practices in early detection of and intervention for deaf and hard of hearing children.

It is well documented that undetected hearing loss can have a profound effect on a child's holistic development, including communicative, language and cognitive development. It is crucial therefore that deaf and hard of hearing infants are detected as early as possible so that appropriate intervention services and support can be initiated. To assist parents in enabling their child's optimal growth and development, HI HOPES-the first South African home-based early intervention project-was launched in August 2006, offering families weekly home-based support that is both child-centred and family-directed. A critical overview of the pilot implementation of HI HOPES is presented, from inception to implementation, focusing on its innovative services and practices, and issues that influence the intervention process including a reflection on the challenges and areas for development.