Thomas & Karmiloff-Smith (T&K-S) raise an issue of considerable theoretical importance: Are developmental disorders like cases of adult brain damage? However, a related question: Are developmental disabilities the same in children and adults? is rarely addressed. Failure to consider the cumulative and differing effects of aberrant development across the life span confounds the current literature on both developmental dyslexia and Specific Language Impairment.

Supporting families of people with developmental disabilities from culturally diverse backgrounds is receiving increased attention in the era of globalisation. However, there is little information about how disability policy and cultural values work together to support families. This article examined how disability policy and Chinese cultural values influence family care of children and young people with developmental disabilities. By comparing qualitative interview data from Chinese families in Taipei (15) and Sydney (10), we analysed how their expression (...) of cultural values in family care differs by policy context, relative to ethics of care claims for recognition, rights and redistribution. We found that positive expressions of Chinese culture in family care fade if policies do not complement them. Policies can alleviate potential tension with cultural values in three ways: reinforcing family capacity to care; ensuring the rights of both family caregivers and people with disabilities; and extending care choices for families. These approaches resonate with ethics of care principles. We argue that culturally responsive disability policy for families means working with cultural values to achieve ethics of care. This implies that incorporating principles of ethics of care could inform cultural responsiveness in disability policy development. (shrink)

This comment on Chalgoumi et al.’s article “Information Privacy for Technology Users with Intellectual and Developmental Disabilities: Why Does It Matter?” focuses on the concept of autonomy in order to expand the scope of the ethical discussion. First we explore the conceptual and practical relations between privacy and autonomy. Following this, we address the issue of underfunding of information technology for persons with intellectual and developmental disabilities in terms of distributive justice and provide some potential policy (...) solutions. (shrink)

End-of-life care is the only major reference to systematically explore the unique medical, social, legal, political, and ethical issues to consider while providing care to adults and children with intellectual and developmental disabilities who are facing terminal illness or life-limiting conditions.

This paper discusses three cultural narratives that threaten the health of people with intellectual/developmental disabilities (IDD) and which have become more evident during the COVID-19 pandemic. These meta-narratives are the medical model of health/disability; the population health approach to health inequalities; and policies premised on the assumption of the importance of national economic growth as an incentive for reducing health inequalities. Evidence exists that health research is more likely to become policy if it fits within a medical model (...) and addresses national economic growth. These two criteria are particularly problematic for people who have IDD. The paper also proposes a research model to facilitate the inclusion of IDD related issues in future policy regarding health inequalities. (shrink)

Children and individuals with developmental disabilities compared to typical participants are disadvantaged not only by virtue of being vulnerable to risks inherent in research participation but also by the higher likelihood of exclusion from research altogether. Current regulatory and ethical guidelines although necessary for their protection do not sufficiently ensure fair distributive justice. Yet, in view of disproportionately higher burdens of co-occurring physical and mental disorders in individuals with DD, they are better positioned to benefit from research by (...) equitable participation. Greater elucidation of this ethical dilemma is called for by researchers, institutional review boards, and funding agencies to urgently redress the imbalance. This article discusses many of the regulatory principles to ensure better research participation of children and individuals with DD: human rights, validity, distributive justice, beneficence/nonmaleficence, and autonomy. (shrink)

This article aims to explore the attitudes and behaviors of persons with intellectual and developmental disabilities related to their information privacy when using information technology. Six persons with IDD were recruited to participate to a series of 3 semistructured focus groups. Data were analyzed following a hybrid thematic analysis approach. Only 2 participants reported using IT every day. However, they all perceived IT use benefits, such as an increased autonomy. Participants demonstrated awareness of privacy concerns, but not in (...) situations involving the use of technology; their awareness is not transferred to the abstract context of IT use. Privacy breaches were revealed to be a major risk for persons with IDD, who did not seem to understand how their personal information was used. Most protection mechanisms and tools reported were those suggested and implemented by caregivers and close relatives who had a great influence on the participants’ attitudes and behaviors toward IT and privacy. Our findings suggest that when using IT, persons with IDD often experience the consequences of a trade-off between autonomy and privacy. Further research and action is needed to support persons with IDD to understand and balance the benefits of IT use and the inherent threats to information privacy. (shrink)

This article aims to explore the attitudes and behaviors of persons with intellectual and developmental disabilities (IDD) related to their information privacy when using information technology (IT). Six persons with IDD were recruited to participate to a series of 3 semistructured focus groups. Data were analyzed following a hybrid thematic analysis approach. Only 2 participants reported using IT every day. However, they all perceived IT use benefits, such as an increased autonomy. Participants demonstrated awareness of privacy concerns, but (...) not in situations involving the use of technology; their awareness is not transferred to the abstract context of IT use. Privacy breaches were revealed to be a major risk for persons with IDD, who did not seem to understand how their personal information was used. Most protection mechanisms and tools reported were those suggested and implemented by caregivers and close relatives who had a great influence on the participants’ attitudes and behaviors toward IT and privacy. Our findings suggest that when using IT, persons with IDD often experience the consequences of a trade-off between autonomy and privacy. Further research and action is needed to support persons with IDD to understand and balance the benefits of IT use and the inherent threats to information privacy. (shrink)

This study was conducted to investigate the relationship between posttraumatic growth, resilience, positive coping style, and self-efficacy among the primary caregivers of children with developmental disorders in Chongqing, China. A total of 198 primary caregivers aged from 22 to 66 years old, including 155 females and 43 males, were enrolled. The Posttraumatic Growth Inventory, Connor-Davidson Resilience Scale-10, Simplified Coping Style Questionnaire, and General Self-Efficacy Scale were used for data collection. The results found that PTG could be positively predicted by (...) resilience. Positive coping style and self-efficacy mediated the relationship between resilience and PTG. The different levels of PTG were determined by the resident location, monthly income and education of the primary caregivers. The results suggest that it is critical to improve the mental health of the primary caregivers of children with developmental disabilities. Our results also provide a scientific basis for future research. (shrink)

Through an exploration of the experience of severe and profound intellectual disability, this essay will attempt to expose the predominant, yet usually obscured, medical anthropology of the child and examine its effects on pediatric bioethics. I will argue that both modern western society and modern western medicine do, actually, have a robust notion of the child, a notion which can find its roots in three influential thinkers: Aristotle, Immanuel Kant and Jean Piaget. Together, these philosophers offer us a compelling vision: (...) the child is primarily a future rational, autonomous adult. While this tacit understanding has arguably widespread effects on such things as our concept of good parenting, of proper schooling, and so on, I will focus on the effect is has on the treatment of children with severe developmental disabilities. When examined in light of this population, the dominant medical anthropology of the child will be shown to be deficient. Instead, I argue for an expansion—indeed, a full reimagining—of our notions of childhood, not only to re-infuse dignity into the lives of children with SDD, but to better represent the goods of childhood, generally. (shrink)

In a recent case, parents of a profoundly developmentally disabled child asked physicians to use high-dose oestrogen to inhibit the growth of their child in the interests of allowing better care of her as she ages. The physicians asked whether such an intervention would be ethically acceptable. Such an intervention would seem to violate the rights of the child to bodily integrity and to normal growth, making the intervention ethically objectionable. But in this paper, I argue that in some rare (...) instances, a developmentally disabled child may have only a minimal right against interference with her growth. In those instances, parents may be acting ethically if they use medical interventions to inhibit the growth of their child for the purposes of facilitating better care. But they may so intervene only when the child's disabilities are so profound that the child has no personal interest in developing an adult size and when the intervention is the least intrusive means available for facilitating the care of the child. (shrink)

BackgroundThere is little information on how adverse experiences in early life are associated with the risk of having a child with health problems and whether the health of racial and gender minority groups would be particularly compromised if they have developmentally disabled children.ObjectiveBy integrating life-course perspectives and the intersectionality framework, we examine the extent to which parents’ early-life adversities are associated with having children with DD or other health issues and whether the association between having DD children and parental health (...) varies across race–gender groups after accounting for ELAs.MethodsUsing data from Black and White parents from the Midlife in the US Study, we employed multinomial logistic regression models to investigate the degree to which ELAs are associated with parenting types and multiple regression models with a three-way interaction term to investigate whether the gender–parenting type association differs by race.ResultsWith more adversities, the probability of having children with health issues increases for all race–gender groups, but most dramatically for Black women. Having DD children is associated with more chronic illnesses and functional limitations for women than men, with the largest burden for Black women, yet neither gender nor racial differences in depressive symptoms. Our results highlight that while raising children with DD takes a toll on the health of all parents, the strain might be larger for Black mothers.ConclusionThe adverse effects of parenting a child with DD is more pronounced for Black women than for other race–gender groups indicating opportunities to promote community-based programs for these parents. (shrink)

Over the past 15 years, ethics committees have become common within the acute care hospital setting. Their development within long-term care settings has evolved more slowly and has been confined primarily to nursing homes. In this paper, I describe the development of an ethics committee in a residential center for the mentally retarded and developmentally disabled. I describe how the committee has progressed and some of the ethical issues in this setting.

Sense of coherence and coping with stress in fathers of children with developmental disabilities** The aim of the study is to analyse the sense of coherence and strategies of coping with stress in fathers of disabled children. The research involved 128 fathers of children with Down syndrome, autism, cerebral palsy and children with normal development. Two questionnaires were used: The Sense of Coherence Questionnaire measuring SOC level and Ways of Coping Questionnaire measuring strategies of coping with stress. The (...) research revealed that there is a relationship between the type of child's developmental disability and SOC in fathers. The fathers with a low level of SOC more frequently used strategies of avoidance while the fathers with a high level of SOC more frequently used confrontation, positive reappraisal and planful problem solving. The results of the research indicate that looking after a disabled child may lower SOC and in turn may cause difficulties in coping with stress. (shrink)

The partnership of educators and parents of children with developmental disabilities is important for early intervention, as an integrated and interdisciplinary system of professional services intended for children of an early age with developmental disabilities and children who may be late in starting school due to inadequacy: nutrition, chronic diseases, biological and environmental factors. The aim of the research is to examine the assessments of educators and parents about the involvement of families of children with (...) class='Hi'>developmental disabilities in kindergarten activities. It started from the general assumption that there is a difference in the assessments of educators and parents about family involvement in kindergarten activities. The research conducted in October 2022 included 167 educators and 167 parents in the area of Kikinda and Sombor (Serbia), who assessed family participation in kindergarten activities (PP) for 167 children aged five to seven. The quality of cooperation was examined with the Subtest Parents’ involvement in kindergarten activities. This subtest forms part of the Parental Involvement Questionnaire (Fantuzzo et al, 2000) adapted for this research (a = 0,921). The research results show that there is a significant difference in the assessments of educators and parents in the area of family involvement in kindergarten activities. It was concluded that there is a need for planning guidelines and implementation of procedures that would enable parents to participate in kindergarten activities. The application of the new Program Basis in the context of cooperation between preschool institutions and parents would contribute to the improvement of project planning of learning and teaching in pedagogical practice. This would help parents better understand project-based learning and the importance of participating in kindergarten activities. (shrink)

Volume 20, Issue 4, May 2020, Page 25-27.

Coronavirus vaccines have made their debut. Now, allocation practices have stepped into the spotlight. Following Centers for Disease Control and Prevention guidelines, states and healthcare institutions initially prioritised healthcare personnel and elderly residents of congregant facilities; other groups at elevated risk for severe complications are now becoming eligible through locally administered programmes. The question remains, however: whoelseshould be prioritised for immunisation? Here, we call attention to individuals institutionalised with severe mental illnesses and/or developmental or intellectual disabilities—a group highly (...) susceptible to the damages of COVID-19, recent research shows, and critical to consider for priority vaccination. The language describing both federal-level and state-level intentions for this population remains largely vague, despite the population’s diversity across age, diagnosis, functional status and living arrangement. Such absence of specificity, in turn, leaves room for confusion and even neglect of various subgroups. We review data stressing this group’s vulnerability, as well as select state plans for priority vaccination, highlighting the importance of clarity when describing intentions to vaccinate, or even generally care for, diverse populations composed of distinct subgroups in need. (shrink)

This essay draws on two emerging fields—the study of comics or graphic fiction, and disability studies—to demonstrate how graphic fictions articulate the embodied, ethical, and sociopolitical experiences of impairment and disability. Examining David B’s Epileptic and Paul Karasik and Judy Karasik’s The Ride Together, I argue that these graphic novels unsettle conventional notions of normalcy and disability. In so doing, they also challenge our assumed dimensions and possibilities of the comics genre and medium, demonstrating the great potential comics hold for (...) disability studies. (shrink)

Abstract:This essay criticizes recent trends in disability policy as restrictive of individual liberty and informed by too narrow a definition of what constitutes human flourishing. I defend the value of intentional community settings as one legitimate residential option for people with intellectual and developmental disabilities. Recent federal regulations (HCBS Final Rule) define intentional communities or disability-specific housing as presumptively institutional in nature, misunderstanding the positive, noninstitutional features of intentional, integrated communities created by and for people with developmental (...) disabilities. In addition, current disability policy, despite its stated concern for the autonomy of people with intellectual and developmental disabilities, limits individual liberty by strictly defining the types of settings eligible for Medicaid waiver funding, expressly excluding agricultural communities, disability-specific residential settings, and intentional communities. A robust commitment to the autonomy of people receiving Medicaid waiver services would allow them to choose to direct their program dollars, recognizing that some individuals may choose a life in intentional community or with others facing similar challenges to themselves over an illusory “integration” into a wider society that remains too often unwelcoming and difficult to navigate. (shrink)

Disabled‐2 (Dab2) is a multimodular scaffold protein with signaling roles in the domains of cell growth, trafficking, differentiation, and homeostasis. Emerging evidences place Dab2 as a novel modulator of cell–cell interaction; however, its mode of action has remained largely elusive. In this review, we highlight the relevance of Dab2 function in cell signaling and development and provide the most recent and comprehensive analysis of Dab2's action as a mediator of homotypical and heterotypical interactions. Accordingly, Dab‐2 controls the extent of platelet (...) aggregation through various motifs within its N‐terminus. Dab2 interacts with the cytosolic tail of the integrin receptor blocking inside‐out signaling, whereas extracellular Dab2 competes with fibrinogen for integrin αIIbβ3 receptor binding and, thus, modulates outside‐in signaling. An additional level of regulation results from Dab2's association with cell surface lipids, an event that defines the extent of cell–cell interactions. As a multifaceted regulator, Dab2 acts as a mediator of endocytosis through its association with the [FY]xNPx[YF] motifs of internalized cell surface receptors, phosphoinositides, and clathrin. Other emerging roles of Dab2 include its participation in developmental mechanisms required for tissue formation and in modulation of immune responses. This review highlights the various novel mechanisms by which Dab2 mediates an array of signaling events with vast physiological consequences. (shrink)

This chapter contains sections titled: Introduction Definition of Disability Causes of Intellectual Impairment Evolving Terminology for Intellectual Impairment The Bell Curve and IQ: Levels of Intellectual Disability Cognitive Developmental Thresholds Intellectual Disability and the Brain: Fluid and Crystallized Intelligence Neuroplasticity in Brain Development Developmental Perspective on Intellectual Disability: Cognitive Developmental Thresholds Moral Development Implications of Recognizing Personhood and Autonomy Participation in Research Summary References.

Although the field of psychiatry has witnessed the proliferation of studies on Gene x Environment (GxE) interactions, still limited is the knowledge we possess of GxE interactions regarding developmental disorders. In this perspective paper, we discuss why GxE interaction studies are needed to broaden our knowledge of developmental disorders. We also discuss the different roles of hazardous versus self-generated environmental factors and how these types of factors may differentially engage with an individual’s genetic background in predicting a resulting (...) phenotype. Then, we present exemplar studies that highlight the role of GxE in predicting atypical developmental trajectories as well as provide insight regarding treatment outcomes. Supported by these examples, we explicate the need to move beyond merely examining statistical interactions between genes and the environment, and to investigate specific genetic susceptibility and environmental contexts that drive developmental disorders. We propose that further parsing of genetic and environmental components is required to fully understand the unique contribution of each factor to the etiology of developmental disorders. Finally, with a greater appreciation of the complexities of GxE interaction, this discussion will converge upon the potential implications for clinical and translational research. (shrink)

Many social practices treat citizens with cognitive disabilities differently from their nondisabled peers. Does John Rawls's theory of justice imply that we have different duties of justice to citizens whenever they are labeled with cognitive disabilities? Some theorists have claimed that the needs of the cognitively disabled do not raise issues of justice for Rawls. I claim that it is premature to reject Rawlsian contractualism. Rawlsians should regard all citizens as moral persons provided they have the potential for (...) developing the two moral powers. I claim that every citizen requires specific Enabling Conditions to develop and exercise the two moral powers. Structuring basic social institutions to deny some citizens the Enabling Conditions is unjust because it blocks their developmental pathways toward becoming fully cooperating members of society. Hence, we have a duty of justice to provide citizens labeled with cognitive disabilities with the Enabling Conditions they require until they become fully cooperating members of society. (shrink)

This Introduction to the collection of essays surveys the philosophical literature to date with respect to five central questions: justice, care, agency, metaphilosophical issues regarding the language and representation of cognitive disability, and personhood. These themes are discussed in relation to three specific conditions: intellectual and developmental disabilities, Alzheimer's disease, and autism, though the issues raised are relevant to a broad range of cognitive disabilities. The Introduction offers a brief historical overview of the treatment cognitive disability has (...) received from philosophers, and explains the specific challenges that cognitive disability poses to philosophy. In briefly summarizing the essays in the collection, it highlights the distinctive contributions the collection makes to ethics, political philosophy, bioethics, and the philosophy of disability. We hope that the richness of the topics explored by these essays will be a spur to further investigation. (shrink)

Joan Tronto defines care by three activities: maintaining, continuing, and repairing. These activities give care a maintenance quality, which is problematic given that caring often takes place within contexts of inequality and domination. Empirical research with paid support staff and people with intellectual and developmental disabilities (IDD) illustrate these problems: care practices tend to reinforce the social exclusion of people with IDD, particularly for people with challenging behavior. Yet, support workers’ care practices can facilitate a better quality of (...) life for people with IDD. This improved style of support maps onto Tronto’s fifth phase of care, caring with, which hinges practices of care on democratic principles of justice, equality, and freedom. As such, democratic care requires activities that Tronto excludes from care, including creativity, disruption, and pleasure. I use empirical research from the field of IDD to show how support workers and people with IDD practice creative, disruptive, and playful care to challenge persistent forms of exclusion, inequality, and stigma. (shrink)

This essay explores the boundaries of the moral community—the collection of agents eligible for moral responsibility—by focusing on those just inside it and those just outside it. In particular, it contrasts mild mental retardation with psychopathy, specifically among adults. For those who work with and know them, adults with mild mental retardation are thought to be obvious members of the moral community (albeit not full-fledged members). For those who work with and theorize about adult psychopaths, by contrast, they are not (...) members of the moral community (albeit not in such a full-fledged fashion as the insane). Both psychopaths and adults with MMR have a disability, and the essay is interested in how disability sometimes exempts one from the moral community and sometimes doesn't. It will be through two associated puzzles that we will eventually come to see the complicated tripartite relation between disability, responsibility, and moral community. (shrink)

Studying the typical development of reading is key to understanding the precise deficits that underlie reading disabilities. An important correlate of efficient reading is the speed of naming arrays of simple stimuli such as letters and pictures. In this cross-sectional study, we examined developmental changes in visual processing that occurs during letter and object naming from childhood to early adulthood in terms of behavioral task efficiency, associated articulation and eye movement parameters, and the coordination between them, as measured (...) by eye-voice span in both the spatial and temporal domains. We used naming speed tasks, in which participants were required to name sets of letters or simple objects as quickly and as accurately as possible. Single stimulus manipulations were made to these tasks to make the stimuli either more visually and/or phonologically similar to one another in order to examine how these manipulations affected task performance and the coordination between speech and eye movements. Across development there was an increased efficiency in speech and eye movement performance and their coordination in both the spatial and temporal domains. Furthermore, manipulations to the phonological and visual similarity of specific letter and object stimuli revealed that orthographic processing played a greater role than phonological processing in performance, with the contribution of phonological processing diminishing across development. This comprehensive typical developmental trajectory provides a benchmark for clinical populations to elucidate the nature of the cognitive dysfunction underlying reading difficulties. (shrink)