A diverse panel of experts convened in Bad Ischl, Austria, in June of 2012 for the purpose of coming to consensus on essential principles that guide family-centered early intervention with children who are deaf or hard of hearing (D/HH). The consensus panel included parents, deaf professionals, early intervention program leaders, early intervention specialists, and researchers from 10 nations. All participants had expertise in working with families of children who are D/HH, and focus was placed on identifying family-centered practice principles that are specific to partnering with these families. Panel members reported that the implementation of family-centered principles was uneven or inconsistent in their respective nations. During the consensus meeting, they identified 10 agreed-upon foundational principles. Following the conference, they worked to refine the principles and to develop a document that described the principles themselves, related program and provider behaviors, and evidence supporting their use (drawing upon studies from multiple disciplines and nations). The goal of this effort was to promote widespread implementation of validated, evidence-based principles for family-centered early intervention with children who are deaf and hard of hearing and their families.
BACKGROUND: Estimates of children and adolescents with disabilities worldwide are needed to inform global intervention under the disability-inclusive provisions of the Sustainable Development Goals. We sought to update the most widely reported estimate of 93 million children ,15 years with disabilities from the Global Burden of Disease Study 2004. METHODS: We analyzed Global Burden of Disease Study 2017 data on the prevalence of childhood epilepsy, intellectual disability, and vision or hearing loss and on years lived with disability (YLD) derived from systematic reviews, health surveys, hospital and claims databases, cohort studies, and disease-specific registries. Point estimates of the prevalence and YLD and the 95% uncertainty intervals (UIs) around the estimates were assessed. RESULTS: Globally, 291.2 million (11.2%) of the 2.6 billion children and adolescents (95% UI: 249.9-335.4 million) were estimated to have 1 of the 4 specified disabilities in 2017. The prevalence of these disabilities increased with age from 6.1% among children aged ,1 year to 13.9% among adolescents aged 15 to 19 years. A total of 275.2 million (94.5%) lived in lowand middle-income countries, predominantly in South Asia and sub-Saharan Africa. The top 10 countries accounted for 62.3% of all children and adolescents with disabilities. These disabilities accounted for 28.9 million YLD or 19.9% of the overall 145.3 million (95% UI: 106.9-189.7) YLD from all causes among children and adolescents. CONCLUSIONS: The number of children and adolescents with these 4 disabilities is far higher than the 2004 estimate, increases from infancy to adolescence, and accounts for a substantial proportion of all-cause YLD. WHAT'S KNOWN ON THIS SUBJECT: The World Disability Report 2011 indicated that at least 93 million (∼5.1%) children ,15 years old had a moderate-to-severe disability and 13 million (0.7%) had a severe disability on the basis of the Global Burden of Disease Study 2004. WHAT THIS STUDY ADDS: More than 291 million children aged ,20 years had epilepsy and intellectual and sensory disabilities in 2017. The top 10 countries accounted for 62% of the children with these disabilities, and 95% lived in low and middle income countries.
Accelerating progress on early childhood development for children under 5 years with disabilities by 2030The Global Research on Developmental Disabilities Collaborators*The likelihood of a newborn child dying before their fifth birthday (under-5 mortality rate) is universally acknowledged as a reflection of the social, economic, health, and environmental conditions in which children (and the rest of society) live, but little is known about the likelihood of a newborn child having a lifelong disability before their fifth birthday if he or she survives. Available data show that globally the likelihood of a child having a disability before their fifth birthday was ten times higher than the likelihood of dying ( 377•2 vs 38•2 per 1000 livebirths) in 2019. However, disability funding declined by 11•4% between 2007 and 2016, and only 2% of the estimated US$79•1 billion invested in early childhood development during this period was spent on disabilities. This funding pattern has not improved since 2016. This paper highlights the urgent need to prioritise early childhood development for the beneficiaries of global child survival initiatives who have lifelong disabilities, especially in low-income and middle-income countries, as envisioned by the Sustainable Development Goals agenda. This endeavour would entail disability-focused programming and monitoring approaches, economic analysis of interventions services, and substantial funding to redress the present inequalities among this cohort of children by 2030.
Objectives: To assess the performance of newborn hearing screening (NHS) programmes, through selected quality measures and their relationship to protocol design. Design: NHS coverage, referral, follow-up and detection rates were aggregated. Referral rates were compared to age at screening step 1, number of steps, and test method: OAE or aABR. Study sample: A questionnaire on existing hearing screening was completed by experts from countries in Europe, plus Russia, Malawi, Rwanda, India and China. Results: Out of 47 countries or regions, NHS coverage rates were reported from 26, referral rates from 23, follow up from 12 and detection rates from 13. Median coverage rate for step 1 was 96%. Referral rate from step 1 was 6-22% where screening may be performed <24 h from birth, 2-15% for >24 h, and 4% for >72 h. Referral rates to diagnostic assessment averaged 2.1% after one to two steps using OAE only, 1.7% after two steps including aABR, and 0.8% after three to four steps including aABR. Median detection rate for bilateral permanent hearing impairment !40dB was 1 per 1000 infants. Conclusion: Referral rates were related to age, test method and number of screening steps. Quality measures were not available for many NHS programmes.
This article concerns the first stage of a research and development project that aimed to produce both parent and professional guidelines on the promotion and provision of informed choice for families with deaf children. It begins with a theoretical discussion of the problems associated with the concept of informed choice and deaf child services and then focuses specifically on why a metastudy approach was employed to address both the overcontextualized debate about informed choice when applied to deaf children and the problems associated with its investigation in practice with families and professionals. It presents a detailed analysis of the conceptual relevance of a range of identified studies "outside" the field of deafness. These are ordered according to 2 main conceptual categories and 7 subcategories-(a) the nature of information: "information that is evaluative, not just descriptive"; "the difficulties of information for a purpose"; "the origins and status of information"; and "informed choice and knowledge, not informed choice and information" and (b) parameters and definitions of choice: "informed choice as absolute and relative concept", "preferences and presumptions of rationality", and "informed choice for whom?" Relevant deaf child literature is integrated into the discussion of each conceptual debate in order both to expand and challenge current usage of informed choice as applied to deaf children and families and to delineate possible directions in the planning of the next stage of the main project aimed at producing parent/professional guidelines.
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