Families of Deaf Children With Co-Occurring Disabilities

The authors of this chapter focus on immigrant families who have deaf children with co-occurring disabilities. The journey is filled with understanding deafness, co-occurring disabilities, resources, cultural impact, communication and amplification options, and navigating the American education system. The chapter covers a range of information for professionals and families to understand what families with deaf children with co-occurring disabilities face and the continuous decisions that must be made and implemented while having limited access to support due mainly to language barriers and cultural understand. The chapter covers from the time the deaf child with co-occurring disabilities is identified and the multiple layers to understanding the path the family takes, knowing each one is as unique as the child.

Ka puāwai ngā kōhungahunga turi: a study of the nature and impacts of early intervention for Māori deaf children and their whānau

<p>This research investigates the early experiences of Māori deaf children, documenting whānau (family) perspectives on interactions with early intervention professionals and environmental sources of information, the effects of these on whānau perceptions of deafness, how decisions around communication and language use are arrived at, and how these affect a sense of parental competence. The features of a whānau-centred model of intervention are explored by whānau participants and the researcher in order to provide an understanding of how early intervention services could be more effective from Māori perspectives. Developing age appropriate language, communication skills and social acculturation is a synchronous process which typically occurs within the context of families. The majority of deaf children, however, are born to hearing parents and families with little experience of deaf people from which to develop a subconscious repertoire of skills with which to engage, facilitate and teach language to a deaf child. Early intervention services seek to support deaf children and their families in this process. In New Zealand a family-centred model of early intervention is accepted practice. Māori children are over-represented in deafness diagnostic statistics and their early language and social development takes place within a social context that is configured differently to the prototypical non-Māori family, that is, the whānau. Little is known or documented about the characteristics and efficacy of a family-centred model in relation to Māori deaf children and their whānau. The Māori metaphor of transformative praxis was used to frame a kaupapa Māori approach to case study research. Kete mātauranga (woven baskets of knowledge) were co-constructed between whānau participants, early intervention professionals, and the researcher, using Māori methods of qualitative data collection: kōrero-a-tinana (observations of action and behaviour), kōrero-a-waha (spoken language), kōrero-a-ringaringa (signed language), kōrero-a-tuhituhi (written language). Analysis of the data suggests that whānau perceptions of their deaf child evolve as the child moves through developmental stages and as the whānau encounters different sources of information and experiences relating to deafness. The study shows how the relevance of information, spoken, written, and signed, from early intervention professionals and observational knowledge gained from others with lived experience of deafness, deaf people and their whānau, was interpreted and weighed by participants as they interacted with their own deaf child in everyday social contexts. Participants' aspirations for their deaf children centred on a holistic perspective of wellbeing and development, the whānau providing the foundational context from which this developed. Recognising that their deaf child was situated at the borders of multiple cultural and linguistic groups, through either familial or social connection, whānau aspirations centred on the child’s active social and linguistic participation within these groups. Initial encounters with professionals focused on medical perspectives of hearing loss, positing deafness as a medical concern remedied through routine technical and medical interventions. However, as the child entered developmental stages, whereby language acquisition and the social acculturation process began, whānau started to relate to their deaf child in more social terms, and required more social and linguistic support to ensure participation in various home and educational contexts. Early intervention services were seen by some participants to constrain, or conflict with, their social-cultural aspirations for the child, through a focus on acquisition of spoken English and facilitating participation in mainstream educational contexts. Whānau expressed frustration at the compromise they endured as a consequence and wished for a model of support that engaged with whānau aspirations and relational styles more effectively. Potential features of a whānau-centred model of early intervention were composed by the researcher and whānau participants during a wānanga (forum) held as a part of the research. The features identified utilised the tradition of raranga (weaving) as a metaphor with which to frame relational and participatory components of a whānau-centred early intervention model for Māori deaf children.</p>

Ka puāwai ngā kōhungahunga turi: a study of the nature and impacts of early intervention for Māori deaf children and their whānau

<p>This research investigates the early experiences of Māori deaf children, documenting whānau (family) perspectives on interactions with early intervention professionals and environmental sources of information, the effects of these on whānau perceptions of deafness, how decisions around communication and language use are arrived at, and how these affect a sense of parental competence. The features of a whānau-centred model of intervention are explored by whānau participants and the researcher in order to provide an understanding of how early intervention services could be more effective from Māori perspectives. Developing age appropriate language, communication skills and social acculturation is a synchronous process which typically occurs within the context of families. The majority of deaf children, however, are born to hearing parents and families with little experience of deaf people from which to develop a subconscious repertoire of skills with which to engage, facilitate and teach language to a deaf child. Early intervention services seek to support deaf children and their families in this process. In New Zealand a family-centred model of early intervention is accepted practice. Māori children are over-represented in deafness diagnostic statistics and their early language and social development takes place within a social context that is configured differently to the prototypical non-Māori family, that is, the whānau. Little is known or documented about the characteristics and efficacy of a family-centred model in relation to Māori deaf children and their whānau. The Māori metaphor of transformative praxis was used to frame a kaupapa Māori approach to case study research. Kete mātauranga (woven baskets of knowledge) were co-constructed between whānau participants, early intervention professionals, and the researcher, using Māori methods of qualitative data collection: kōrero-a-tinana (observations of action and behaviour), kōrero-a-waha (spoken language), kōrero-a-ringaringa (signed language), kōrero-a-tuhituhi (written language). Analysis of the data suggests that whānau perceptions of their deaf child evolve as the child moves through developmental stages and as the whānau encounters different sources of information and experiences relating to deafness. The study shows how the relevance of information, spoken, written, and signed, from early intervention professionals and observational knowledge gained from others with lived experience of deafness, deaf people and their whānau, was interpreted and weighed by participants as they interacted with their own deaf child in everyday social contexts. Participants' aspirations for their deaf children centred on a holistic perspective of wellbeing and development, the whānau providing the foundational context from which this developed. Recognising that their deaf child was situated at the borders of multiple cultural and linguistic groups, through either familial or social connection, whānau aspirations centred on the child’s active social and linguistic participation within these groups. Initial encounters with professionals focused on medical perspectives of hearing loss, positing deafness as a medical concern remedied through routine technical and medical interventions. However, as the child entered developmental stages, whereby language acquisition and the social acculturation process began, whānau started to relate to their deaf child in more social terms, and required more social and linguistic support to ensure participation in various home and educational contexts. Early intervention services were seen by some participants to constrain, or conflict with, their social-cultural aspirations for the child, through a focus on acquisition of spoken English and facilitating participation in mainstream educational contexts. Whānau expressed frustration at the compromise they endured as a consequence and wished for a model of support that engaged with whānau aspirations and relational styles more effectively. Potential features of a whānau-centred model of early intervention were composed by the researcher and whānau participants during a wānanga (forum) held as a part of the research. The features identified utilised the tradition of raranga (weaving) as a metaphor with which to frame relational and participatory components of a whānau-centred early intervention model for Māori deaf children.</p>

A systematic scoping review of early interventions for parents of deaf infants

Background Over 90% of the 50,000 deaf children in the UK have hearing parents, many of whom were not expecting a deaf child and may require specialist support. Deaf children can experience poorer long-term outcomes than hearing children across a range of domains. After early detection by the Universal Newborn Hearing Screening Programme, parents in the UK receive support from Qualified Teachers of the Deaf and audiologists but resources are tight and intervention support can vary by locality. There are challenges faced due to a lack of clarity around what specific parenting support interventions are most helpful. Methods The aim of this research was to complete a systematic scoping review of the evidence to identify early support interventions for parents of deaf infants. From 5577 identified records, 54 met inclusion criteria. Two reviewers screened papers through three rounds before completing data extraction and quality assessment. Results Identified parent support interventions included both group and individual sessions in various settings (including online). They were led by a range of professionals and targeted various outcomes. Internationally there were only five randomised controlled trials. Other designs included non-randomised comparison groups, pre / post and other designs e.g. longitudinal, qualitative and case studies. Quality assessment showed few high quality studies with most having some concerns over risk of bias. Conclusion Interventions commonly focused on infant language and communication followed by parental knowledge and skills; parent wellbeing and empowerment; and parent/child relationship. There were no interventions that focused specifically on parent support to understand or nurture child socio-emotional development despite this being a well-established area of poor outcome for deaf children. There were few UK studies and research generally was not of high quality. Many studies were not recent and so not in the context of recent healthcare advances. Further research in this area is urgently needed to help develop evidence based early interventions.

Effectiveness of Aural-Oral Approach Based on Volubility of a Deaf Child with Late-Mapping Bilateral Cochlear Implants

Background: The purpose of this study was to investigate the effectiveness of aural-oral habilitation (AO) over the traditional speech-language therapy, based on the number of vocalization-volubility of a deaf child with late-mapping bilateral cochlear implants using sequential measurements. Methods: The spontaneous productions during child interactions were analyzed. The child (CY, 7;0 years old) with a mean unaided pure-tone average (PTA) hearing loss >80 dB HL was assessed by using an assessment battery. Study design consisted of two phases: (a) baseline (end of speech therapy) and (b) end of AO treatment. Protophones were analyzed via acoustical analysis using PRAAT software. Results: One-way repeated-measure ANOVAs were conducted within and between phases. The analyses revealed significant differences between the ‘phase’ and the vocalization outcome (F = 9.4, df = 1, p = 0.035). Post hoc analyses revealed the significant difference between the mean number of disyllable vocalizations of AO approach (p = 0.05). The mean number of vocalizations was calculated for each protophone type, but no other significant difference was measured. Conclusions: AO approach proved effective as measured through volubility. The outcome of this study is indicative and is a starting point for broader research.

Consonant Repertoire of a Prelinguistically Deaf Child with Late-Mapping Cochlear Implants

Objective: The present case study aims to report on the consonant repertoire during the pre-linguistic and first linguistic stage of a Greek-Cypriot speaking child bilaterally implanted with multichannel Cochlear Implants (CIs). Background: Children with Hearing Loss (HL) produce canonical babble later, and consonantal inventories of HL children are smaller. However, the consonant repertoire of CI Greek-speaking children has not been examined thus far and research on types of consonantal errors during phonological acquisition is scant. Clinical Case: A pre-linguistically deaf child (CY, 7;0 years old) received the first CI at 7 months of age, but the external part of the device was fitted at 2;7 years. An investigation of the child’s speech at 7;0 years was conducted through auditory analysis. The child’s canonical utterances were transcribed in IPA and his consonants were classified into subcategories, depending on articulation place, articulation manner and resonance. Regarding place, alveolar consonants were the main category produced. As regards manner, closed consonants was the first category to appear, while in terms of voicing, voiceless consonants were recorded more often than voiced ones. The analysis also showed that consonants /t/, /s/ and /p/ were dominant in the child’s speech and revealed several phonological processes. Conclusion: The present case holds special interest as the child’s phonological system is still between the pre-linguistic/first linguistic stages due to the delayed CI mapping. The results agree in part with several studies in the literature, while specific phonological error patterns observed, remain to be verified in other CI Greek-speaking children.

Genome editing and ‘disenhancement’: Considerations on issues of non-identity and genetic pluralism

In the decade prior to CRISPR-Cas9, Michael Parker criticised Julian Savulescu’s Procreative Beneficence (PB) Principle by arguing against the confidence to know what’s best in terms of genetic traits for our offspring. One important outcome of this criticism was a greater moral acceptance of deaf people genetically selecting deaf children. Although this outcome may have been morally controversial in an impersonal harm context, in such genetic selection (PGD) cases, a deaf child is not harmed in person-affecting terms because no other life is available to that child. We highlight that the person-affecting versus impersonal harm distinction is still held by many as making a significant moral difference to their overall argument (i.e. Savulescu, Parker, Boardman, De Miguel Beriain) and so for the purposes of this paper, we will assume it makes ‘some difference’ (even if only at the level of the message it sends out). Insofar as one considers the presence person-affecting harm to be morally important (and to whatever extent), the impersonal harm context in which the Parker–Savulescu debate arose thereby blunts an arguably even more radical outcome—that of genetically engineering, or gene editing, deafness into pre-existing embryos of future children. Now, the potential of CRISPR-Cas9 has revitalised such debates by reframing impersonal and person-affecting benefits/harms in the context of such disputes on the harm or not of a (chosen) disability. Replacing the genetic selection context with a genome editing context, we argue that Parker’s argument should also deem it morally acceptable for people who are deaf to genetically edit embryos to become children who are also deaf. Felicity Boardman’s recent comments suggest a similar radical potential as Parker’s, with the radicalness also blunted by an impersonal context (a context that Boardman, at least, sees as significant). We conclude that the genome editing reframing will push such arguments beyond what were originally intended, and this will create a more radical message that may help further define the relationship between new genomic technologies and disability.

Review of "Deaf Politician: The Gary Malkowski Story" by Richard Medugno (2020)

Deaf Politician: The Gary Malkowski Story is a self-published biography by Richard Medugno, who is also the author of Deaf Daughter, Hearing Father (Medugno, 2005), a published memoir about being the parent of a deaf child. It was this lived experience that led Medugno to first encounter Malkowski in 1993, midway through the latter’s term as the first and only signing deaf Member of Provincial Parliament in Canada.

Early language intervention in deaf children of hearing parents

Language development is often hampered by the fact that 90 per cent of deaf children are born into hearing families who do not know Sign language (SL) or haven't had any previous contact with the deaf world. Such parents often use only spoken language to communicate with the child, which results in no or very little language exposure. Many deaf children only start to learn a language, signed or spoken, when they start attending school, usually between the ages of three and seven. As a result, the deaf child has a delay in cognitive and language development and finds it hard to learn a SL, like South African Sign Language (SASL), as well as a written language (e.g., English). This late exposure to SL proves to be a serious cognitive problem for deaf children when compared to those children who acquired language from birth. This problem led to the research question namely, whether deaf children’s language and cognition can still develop to the required level for school readiness if early language intervention (ELI) takes place within the critical period of language acquisition. To answer the question, a case study was done at a school for the deaf and blind with a small group of deaf learners in the foundation phase. The results show that the little language exposure these children received in only one year of school already made a huge difference to their language and cognitive development. This article also makes recommendations to the various stakeholders in deaf education.