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.

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)

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)

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.

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 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)

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)

From growth attenuation therapy for severely developmentally disabled children to the post-natal management of infants with trisomy 13 and 18, pediatric treatment decisions regularly involve assessments of the probability and severity of a child’s disability. Because these decisions are almost always made by surrogate decision-makers and because these decision-makers must often make decisions based on both prognostic guesses and potentially biased quality of life judgments, they are among the most ethically complex in pediatric care. As the introduction to (...) HEC Forum’s special thematic issue on Childhood and Disability, this article orients the reader to the history of bioethics’ relationship to both pediatric ethics and disability studies and introduces the issue’s five manuscripts. As clinicians, disability scholars, philosophers and clinical ethicists writing on various aspects of pediatric disability, the articles’ authors all invite readers to dig beneath an overly-simplified version of what disability might mean to children and families and instead embrace a posture of genuine humility, recognizing both the limits and harms of traditional medical and bioethical responses to the disabled child. (shrink)

pt. 1. Background you need. -- What is brain-compatible teaching -- The old and new of it -- When brain research is applied to the classroom everything will change -- Change can be easy -- We're not in Kansas anymore -- Where's the proof -- Tools for exploring the brain -- Ten reasons to care about brain research -- The evolution of brain models -- Be a brain-smart consumer: recognizing good research -- Action or theory: who wants to read all (...) that research -- Excellent sources of research -- Fun factoids on the brain -- What's in the human brain -- Brain teaser -- The brain divided -- The brain connected -- Brain geography -- Brain "cell" ebration: far-out facts about brain cells -- Learning happens but how -- Are today's kids different -- Boy's and girl's brain differences -- Learning disabilities; different brains -- The cranial soup bowl: understanding the chemicals in our brains -- pt. 2. The foundation for teaching is principles, not strategies. What are the principles -- Principle 1: the principle of change: brain is dynamic, not fixed -- Principle 2: the principle of variety: all brains are unique -- Principle 3: the principle of developmental sensitivity -- Principle 4: the principle of interaction: we have a social brain -- Principle 5: the principle of connectivity: the brain is an integrated system of systems -- Principle 6: the principle of memory malleability -- Principle 7: the principle of resource consumption -- necessity for processing -- pt. 3. So what; now what. Asking big questions: what's in a brain-compatible curriculum -- Brain-compatible test-taking success strategies -- Systemic change: the next level -- Big picture analysis: transformation happens -- Action research makes a difference -- The learning community -- What's next. (shrink)

Background: Humor, both producing and appreciating, underpins positive social interactions acting as a facilitator of communication. There are clear links to wellbeing that go along with this form of social engagement. However, humor appears to be a seldom studied, cross-disciplinary area of investigation when applied to people with an intellectual disability, this review collates the current state of knowledge regarding the role of humor behavior in the social interactions of people with intellectual disabilities and their carers. Method: A systematic review (...) utilizing the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines was completed which aimed to explore the current state of knowledge and quality of empirical evidence relating to humor in people with intellectual disabilities. Following this, articles were grouped thematically and summarized. A comprehensive search of four electronic databases (1954–2017) and additional search strategies yielded 32 articles which met the final inclusion criteria. Results: Humor played a significant positive and negative role in the social interactions of people with intellectual disabilities. Research had investigated humor in the classroom and humor expression in different groups including those with autism, Down syndrome, Angelman syndrome, Williams syndrome and Rett syndrome. Few investigations directly studied humor appreciation and comprehension hence themes did not focus solely on humor production/appreciation. Humor comprehension was reportedly supported by gestures. Some groups with intellectual disabilities found non-literal humor (e.g. sarcasm, irony) more difficult to understand which may affect social relationships. Various types of humor were found to be appreciated. The role of humor in relationship development, social facilitation, creativity and stigma had all received some limited attention. Humor also played a role for carer groups in coping with and enjoying the caring role. Research varied in quality with few experimental studies and mainly quasi-experimental and well-conducted qualitative studies. Conclusions: This review revealed the importance of humor behavior in many aspects of the social lives of people with intellectual disabilities. Limited disparate research exists pertaining to humor in this group, suggesting the need for further robust research in this area, including more high quality primary research in the areas of humor production, appreciation, comprehension and stigma. (shrink)

Person‐centred care, with its central focus on the patient in partnership with healthcare practitioners, is considered to be the contemporary gold standard of care. This type of care implies effective communication from and by both the patient and the healthcare practitioner. This is often problematic in the case of the paediatric population, because of the many communicative challenges that may arise due to the child's developmental level, illness and distress, linguistic competency and disabilities. The principle of universal design put forth (...) in conventions and legislation means that the design of products and services should be usable by all people, to the greatest extent possible. Augmentative and alternative communication encompasses strategies, for example pictures and apps, that are typically used with people with communication disability. In this position paper, we argue for the universal use of augmentative and alternative communication to support person‐centred communication and care for children, regardless of age or potential disability. Clinical examples are shared from three different paediatric care settings where pictorial supports were applied universally. Interviews were conducted with children and adolescents (with and without disabilities), parents and healthcare practitioners, and the principles of universal design were used as a framework to demonstrate how person‐centred communication is supported in paediatric care. (shrink)

Despite a century of progress in medical knowledge, many diagnostic odysseys end in disappointment, especially when the child has a developmental disorder. In cases of autism and intellectual disability, relatively few children receive a specific diagnosis, and virtually none of those diagnoses lead to a specific medical treatment. Whole‐genome or ‐exome sequencing offers a quantum leap in the diagnostic odyssey, in that we will always learn something from sequencing—sometimes much more than families bargained for, as discussed elsewhere in this special (...) report. The trick is whether the knowledge gained will help the child and family. A family‐centered approach gives families permission to choose but does not lay all of the responsibility on them. The goal is to pursue the degree of medical diagnostic evaluation that matches the family's values. (shrink)

I explore the ethics of altering the body of a child with severe cognitive disabilities in such a way that keeps the child “forever small.” The parents of Ashley, a girl of six with severe cognitive and developmental disabilities, in collaboration with her physicians and the Hospital Ethics Committee, chose to administer growth hormones that would inhibit her growth. They also decided to remove her uterus and breast buds, assuring that she would not go through the discomfort of menstruation and (...) would not grow breasts. In this way she would stay “forever small” and be able to be carried and handled by family members. They claimed that doing this would ensure that she would be able to be part of the family and of family activities and to have familial care. But the procedure has raised thorny ethical questions. I wish to explore these questions philosophically by bringing to bear my own experiences as a mother of a grown daughter with severe cognitive impairments. (shrink)

The case of Ashley X involved a young girl with profound and permanent developmental disability who underwent growth attenuation using high-dose estrogen, a hysterectomy, and surgical removal of her breast buds. Many individuals and groups have been critical of the decisions made by Ashley's parents, physicians, and the hospital ethics committee that supported the decision. While some of the opposition has been grounded in distorted facts and misunderstandings, others have raised important concerns. The purpose of this paper is to provide (...) a brief review of the case and the issues it raised, then address 25 distinct substantive arguments that have been proposed as reasons that Ashley's treatment might be unethical. We conclude that while some important concerns have been raised, the weight of these concerns is not sufficient to consider the interventions used in Ashley's case to be contrary to her best interests, nor are they sufficient to preclude similar use of these interventions in the future for carefully selected patients who might also benefit from them. (shrink)

The case of Ashley X involved a young girl with profound and permanent developmental disability who underwent growth attenuation using high-dose estrogen, a hysterectomy, and surgical removal of her breast buds. Many individuals and groups have been critical of the decisions made by Ashley's parents, physicians, and the hospital ethics committee that supported the decision. While some of the opposition has been grounded in distorted facts and misunderstandings, others have raised important concerns. The purpose of this paper is to provide (...) a brief review of the case and the issues it raised, then address 25 distinct substantive arguments that have been proposed as reasons that Ashley's treatment might be unethical. We conclude that while some important concerns have been raised, the weight of these concerns is not sufficient to consider the interventions used in Ashley's case to be contrary to her best interests, nor are they sufficient to preclude similar use of these interventions in the future for carefully selected patients who might also benefit from them. (shrink)

This book offers a theoretical and practical overview of the specific ethical and legal issues in pediatric organ transplantation. Written by a team of leading experts, Ethical Issues in Pediatric Organ Transplantation addresses those difficult ethical questions concerning clinical, organizational, legal and policy issues including donor, recipient and allocation issues. Challenging topics, including children as donors, donation after cardiac death, misattributed paternity, familial conflicts of interest, developmental disability as a listing criteria, small bowel transplant, and considerations in navigating the media (...) are discussed. It serves as a fundamental handbook and resource for pediatricians, transplant health care professionals, trainees, graduate students, scholars, practitioners of bioethics and health policy makers. (shrink)

I am in the process of trying to organize an ethics committee at a large community mental health center in Central Massachusetts and am seeking advice from anyone with experience in this or a similar milieu. The agency is a large (almost 700 employees), nonprofit, community-based program that operates under the auspices of a broad, academically affiliated, behavioral health system. An independent board of trustees, responsible to the parent organization governs the agency. The agency primarily provides outpatient care and treatment (...) to adults and children with mental health, substance abuse, developmental disabilities, and homelessness issues. It does not provide any psychiatric emergency or acute in-patient mental health services but does operate an inpatient detoxification unit for substance abuse treatment and DUI program. Additionally, the agency has a vast network of residential programs and transitional facilities for individuals with a history of chronic mental illness and substance abuse problems. Outpatient medical care is also provided to homeless clients who reside in area shelters (including a shelter for men and women) and a large number of clients who have HIV/AIDS and/or who have been dually diagnosed (substance abuse and mental illness), and are part of a scattered-site supportive housing program. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Resilience and the Narratives of Parents of Adults with Autism Spectrum DisordersNabil Hassan El-GhorouryThe prevalence of autism spectrum disorders (ASDs) is on the rise; the most recent report from the Autism and Developmental Disabilities Monitoring Network (2012) indicated a prevalence of ASDs of one in 88 children. This was a 78% increase from reported prevalence rates in 2002, when the rate was one in 150. Major health organizations have (...) been emphasizing the importance of early identification (Johnson, Myers, & Council on Children with Disabilities, 2007) to increase access to early intervention services, which are most effective when implemented before age three (Rogers & Vismara, 2008).The bulk of autism research has been focused on children, particularly young children. Given the growing identification and prevalence of ASDs, there will be more and more adolescents and adults with ASDs in the near and long term future. This issue of Narrative Inquiries in Bioethics is important because of its focus on an underrepresented area in the literature. The constraints of current health care delivery systems do not allow for providers to spend significant amounts of time with their patients. Furthermore, hearing first person narratives can be valuable by informing health care professionals about the experiences that parents (and by extension, the individual with an ASD) have experienced.As a licensed clinical psychologist with over two decades of experience with children, adolescents, and adults with ASDs in a variety of settings, I have a professional perspective on autism. As the older brother of Omar, a 38–year–old adult male with autistic disorder, I also have a lifetime of personal experiences of autism. As long as I can remember, I have had a brother with autism. I hope this unique perspective as both a behavioral health care provider and a family member of an adult with an ASD allows me to comment on these narratives in a thoughtful manner.Seeing Beyond Autism: Multiple IdentitiesMany parents commented on how their child was more than just autism or Asperger’s; they reflected on the strengths, unique experiences, and perspectives of their child. The narratives are rich in their desire to see the whole being of their children. Anonymous One writes:Another thing, and I think every parent will agree with this—teachers, school staff, health care industry staff, doctors and every one that comes into contact with an ASD individual—take the time to get to know them. It may be difficult and some may appear non–caring and rude. You must overlook this and look to the person underneath. They are great people. They have been through stuff and it means so much to them. Like I said—parents, you know this. Please remember it when times get tough. [End Page 189]Mark Osteen wrote about his son Cameron as they were making the decision to place their son in a residential placement: “I felt proud. It was like he was being recruited for college. And I am just as proud of him, and love him just as much, as if he were. What I hate is talking only about his ‘disability.’ I hope they see his good qualities. How smart he is. How funny he is. How charming he is. How strong he is.”Understanding the multiple identities of individuals with ASDs is important for parents so that they are not solely focused on the autism diagnosis. The talents and skills of the young adults described are remarkable. Anonymous One’s son David became a computer engineer at 13, reportedly “he was the youngest person in the United States to do so at such a young age.” Lori Centineo’s son Nathaniel is a poet, a rock climber, and skilled at sailing. Virginia Clapp’s son Nathaniel is a “chess genius”, a talented juggler “with the ability to juggle seven balls, which he told me is ‘insanity in a nutshell’,” and an origami expert. David McDonald’s nephew grew from a teenager who spoke only 30 words to speaking thousands of words and ultimately becoming a world traveler. Anonymous Four’s son Sam is “practically an expert” in earth sciences.Seeing beyond the autism is not always easy. Given the serious challenges... (shrink)

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.

Genetic information and technologies are increasingly important in health care, not only in technologically advanced countries, but world-wide. Several global factors promise to increase future demand for morally conscious genetic health services and research. Although they are the largest professional group delivering health care world-wide, nurses have not taken the lead in meeting this challenge. Insights from feminist analysis help to illuminate some of the social institutions and cultural obstacles that have impeded the integration of genetics technology into the discipline (...) of nursing. An alternative model is suggested - the transdisciplinary model - which was developed initially by a nurse and introduced in the 1970s into the delivery of health care and social services for children with developmental disabilities. This holistic model enables all health care professionals to have an equal voice in determining how genetic health care will be globalized. (shrink)

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)

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.

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 chapter contains sections titled: Postscript: Exchange with Peter Singer References.

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)

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)

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 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)

BackgroundSexual boundary violations in healthcare are harmful and exploitative sexual transgressions in the professional–client relationship. Persons with mental health issues or intellectual disabilities, especially those living in residential settings, are especially vulnerable to SBV because they often receive long-term intimate care. Promoting good sexual health and preventing SBV in these care contexts is a moral and practical challenge for healthcare organizations.MethodsWe carried out a qualitative interview study with 16 Dutch policy advisors, regulators, healthcare professionals and other relevant experts to explore (...) their perspectives on preventing SBV in mental health and disability care organizations. We used inductive thematic analysis to interpret our data.ResultsWe found three main themes on how healthcare organizations can prevent SBV in mental health and disability care: setting rules and regulations, engaging in dialogue about sexuality, and addressing systemic and organizational dimensions.ConclusionOur findings suggest that preventing SBV in mental health and disability care organizations necessitates setting suitable rules and regulations and facilitating dialogue about positive aspects of sexuality and intimacy, as well as about boundaries, and inappropriate behaviors or feelings. Combining both further requires organizational policies and practices that promote transparency and reflection, and focus on creating a safe environment. Our findings will help prevent SBV and promote sexual health in mental health and disability care organizations. (shrink)

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)

This paper examines the prevalence of the ideal of “independence” in intellectual disability care in the Netherlands. It responds to a number of scholars who have interrogated this ideal through the lens of Michel Foucault’s vocabulary of governmentality. Such analyses hold that the goal of “becoming independent” subjects people with intellectual disabilities to various constraints and limitations that ensure their continued oppression. As a result, these authors contend, the commitment to the ideal of “independence” – the “ethic of autonomy” – (...) actually threatens to become an obstacle to flourishing in the group home. This paper offers an alternative analysis. It does so by drawing on a case study taken from an ethnographic study on group home life in the Netherlands. Briefly put, the disagreement stems from differing conceptualizations of moral life. Put in the vocabulary of moral anthropologist Cheryl Mattingly, the authors propose to approach the group home more from a “first-person” perspective rather than chiefly from a “third-person” perspective. They then draw on Mattingly to cast the group home as a “moral laboratory” in which the ethic of autonomy is not just reproduced but also enacted, and in which the terms of (in)dependence constantly get renegotiated in practice. What emerges is not only a new perspective on the workings of the “ethic of autonomy” in the group home, but also an argument about the possible limitations of the vocabulary of governmentality for analysing care practices. (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)

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