The efficacy of traditional training programs (e.g., neurodevelopmental therapy) in promoting independent mobility and early child development across all three International Classification of Functioning, Disability, and Health levels lacks rigorous research support. Therefore, early power mobility training needs to be considered as a feasible intervention for very young children who are unlikely to achieve independent mobility. This perspective article has three aims: (1) to provide empirical evidence of differences in early independent mobility, motivation, daily life activities, and social (...) participation between young children with typical development and motor disabilities; (2) to discuss the contemporary concepts of and approaches to early power mobility training for young children with motor disabilities and the current need for changes to such training; and (3) to provide recommendations for early power mobility training in pediatric rehabilitation. Independent mobility is critical for social participation; therefore, power mobility can be accessible and implemented as early as possible, specifically for infants who are at risk for mobility or developmental delay. To maximize the positive effects of independent mobility on children’s social participation, early power mobility training must consider their levels of functioning, the amount of exploration and contextual factors, including individual and environmental factors. (shrink)

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)

We examined the effects of three different training conditions, all of which involve the motor system, on kindergarteners’ mental transformation skill. We focused on three main questions. First, we asked whether training that involves making a motor movement that is relevant to the mental transformation—either concretely through action or more abstractly through gestural movements that represent the action —resulted in greater gains than training using motor movements irrelevant to the mental transformation. We tested children prior to (...) training, immediately after training, and 1 week after training, and we found greater improvement in mental transformation skill in both the action and move-gesture training conditions than in the point-gesture condition, at both posttest and retest. Second, we asked whether the total gain made by retest differed depending on the abstractness of the movement-relevant training, and we found that it did not. Finally, we asked whether the time course of improvement differed for the two movement-relevant conditions, and we found that it did—gains in the action condition were realized immediately at posttest, with no further gains at retest; gains in the move-gesture condition were realized throughout, with comparable gains from pretest-to-posttest and from posttest-to-retest. Training that involves movement, whether concrete or abstract, can thus benefit children's mental transformation skill. However, the benefits unfold differently over time—the benefits of concrete training unfold immediately after training ; the benefits of more abstract training unfold in equal steps immediately after training and during the intervening week with no additional training. These findings have implications for the kinds of instruction that can best support spatial learning. (shrink)

Recent research showed the potential benefits of robot-assisted therapy in treating children with Autism Spectrum Disorder. These children often have some form of Intellectual Disability too, but this has mainly been neglected by previous robotics research. This article presents an empirical evaluation of robot-assisted imitation training, where the child imitated the robot, integrated into the Treatment and Education of Autistic and related Communication handicapped Children program. The sample included six hospitalized children with different levels (...) of ID, from mild to profound. We applied mixed methods to assess their progress, during treatment and three months later. Results show increased Gross Motor Imitation skills in the children, except for those with profound ID and the therapists’ positive attitude towards the humanoid robot. Furthermore, the therapists suggest how a robot could be used to autonomously collect and analyze the information obtained in the rehabilitation training for a continuous evaluation of the participants. (shrink)

Despite the importance of knowing the cognitive capabilities of children with neurodevelopmental conditions, less than one-third of children with cerebral palsy participate in standardized assessments. Globally, approximately 50% of people with cerebral palsy have an intellectual disability and there is significant risk for domain-specific cognitive impairments for the majority of people with cerebral palsy. However, standardized cognitive assessment tools are not accessible to many children with cerebral palsy, as they require manual manipulation (...) of objects, verbal response and/or speeded response. As such, standardised assessment may result in an underestimation of abilities for children with significant motor and/or speech impairment. The overall aim of the project is to examine and compare the psychometric properties of standardised cognitive assessment tools that have been accommodated for use with either a switch device or eye-gaze control technologies, with the specific aims to: Examine the psychometric properties of accommodated assessment tools by comparing the performance of typically developing children on six cognitive assessment tools administered via standardised versus accommodated administration; Describe and compare the performance and user experience of children with cerebral palsy on six accommodated cognitive assessments administered via switch or eye-gaze control technologies. Secondary aims are to: Describe the completion rates and time to complete assessments of participants in each group; Within the group with cerebral palsy, examine the effects of condition-specific characteristics and demographics on participation. This protocol paper describes a two-phase validation and acceptability study that utilizes a mixed-model design. This study will collect concurrent data from 80 typically developing children and 40 children with cerebral palsy, who use switch or eye-gaze control technology as alternate access communication methods. The set of instruments will measure receptive vocabulary, fluid reasoning, sustained attention, vision perception, visuospatial working memory and executive functions. Data analyses will be conducted using SPSS v. 25 and R v 4.1.0. SPSS Sample Power 3 was used for power computation and allows for a 10% drop out rate. Quantitative descriptive statistics, measurement agreement data plotting, bivariate and multiple regressions analysis will be conducted using appropriate methods. (shrink)

This article presents a novel set of ten play scenarios for robot-assisted play for children with special needs. This set of scenarios is one of the key outcomes of the IROMEC project that investigated how robotic toys can become social mediators, encouraging children with special needs to discover a range of play styles, from solitary to collaborative play. The target user groups in the project were children with Mild Mental Retardation,1 children with (...) Severe Motor Impairment and children with Autism. The play scenarios were developed against specific educational and therapeutic objectives that were discussed with panels of experts in various countries, during several user panel meetings for each of the above mentioned target user groups. These objectives were classified with reference to the ICF-CY, the International Classification of Functioning – version for Children and Youth. The article presents a detailed description of the play scenarios, each with its relevant educational and therapeutic objectives in five key developmental areas. While the play scenarios described in this paper originally were developed for and tested with the above user groups and with the IROMEC robot, the play scenarios can potentially be applied to other user groups and to a wide range of other applications involving human-robot interaction using different robotic toys. Keywords: human-robot interaction; assistive technology; play scenarios; autism; mild mental retardation; sever motor impairment; assisted play. (shrink)

Autism is a neurodevelopmental disorder typically assessed and diagnosed through observational analysis of behavior. Assessment exclusively based on behavioral observation sessions requires a lot of time for the diagnosis. In recent years, there is a growing need to make assessment processes more motivating and capable to provide objective measures of the disorder. New evidence showed that motor abnormalities may underpin the disorder and provide a computational marker to enhance assessment and diagnostic processes. Thus, a measure of motor patterns (...) could provide a means to assess young children with autism and a new starting point for rehabilitation treatments. In this study, we propose to use a software tool that through a smart tablet device and touch screen sensor technologies could be able to capture detailed information about children’s motor patterns. We compared movement trajectories of autistic children and typically developing children, with the aim to identify autism motor signatures analyzing their coordinates of movements. We used a smart tablet device to record coordinates of dragging movements carried out by 60 children during a cognitive task. Machine learning analysis of children’s motor patterns identified autism with 93% accuracy, demonstrating that autism can be computationally identified. The analysis of the features that most affect the prediction reveals and describes the differences between the groups, confirming that motor abnormalities are a core feature of autism. (shrink)

In recent years there has been increased focus on supporting the safety and wellbeing of children and young people with disability. This paper reports on a study that asked children and young people with disability and adults who work with them about practices that support their wellbeing and safety, including barriers and enablers to ethical practice. We used the theory of practice architectures to unpack the practices. Findings point to a range of practices (...) that both young people and adults regarded as important in creating the cultural conditions for young people to feel happy, safe and well, albeit placing different emphases on particular practices. Several tensions within and between these practices and the evolving requirements of disability and safeguarding policy environments were also apparent. While often not well articulated, the inherent tensions have implications when considering what children and young people need, particularly those with higher support needs. Findings suggest closer attention needs to be given to the intersection between individual and systemic factors in shaping ethical practice aimed at supporting the wellbeing and safety of children and young people with disability. (shrink)

Starting in early childhood, children are socialized to be honest. However, they are also expected to avoid telling the truth in sensitive situations if doing so could be seen as inappropriate or impolite. Across two studies (total N = 358), the reasoning of 3‐ to 5‐year‐old children in such a scenario was investigated by manipulating whether the information in question would be helpful to the recipient. The studies used a reverse rouge paradigm, in which a confederate with (...) a highly salient red mark on her nose asked children whether she looked okay prior to having her picture taken. In Study 1, children tended to tell the truth only if they were able to observe that the mark was temporary and the confederate did not know it was there. In Study 2, children tended to tell the truth only if they were able to observe that the mark could be concealed with makeup. These findings show that for children as young as age 3, decisions about whether to tell the truth are influenced by the likelihood that the information would be helpful to the recipient. (shrink)

The study reported in this paper utilised a qualitative approach to investigate the everyday lives of two children with cerebral palsy, as experienced by their carers. Analysis of the data collected through in-depth interviews with the girls’ teachers, mothers and therapists was informed by the reflective lifeworld research approach of Dahlberg et al.. The broader theme identified, negotiating motor in/capabilities, comprised the constituent sub-themes identity and difference, and living motor in/capabilities in a disabling/enabling environment. The (...) phenomenological approach employed revealed that, as experienced by their carers, the two girls, both of whom have quite profound forms of motor impairment, flourish by utilising their bodily and psychosocial resources towards experiencing enhanced autonomy and a sense of mastery. Overall, their respective carers served as resources for each of the girls, providing them with enabling social and physical environments that promote their optimal functioning. Theory-driven intervention efforts to promote social participation and well-being in children with cerebral palsy who have severe motor impairments would benefit from taking into account the nuances and complexities inherent in the everyday experiences of these children. (shrink)

Combined non-invasive brain stimulation (NIBS) and rehabilitation interventions have the potential to improve function in children with unilateral cerebral palsy (UCP), however their effects on developing brain function are not well understood. In a proof-of-principle study, we used single-pulse transcranial magnetic stimulation (TMS) to measure changes in corticospinal excitability and relationships to motor performance following a randomized controlled trial consisting of 10 days of combined constraint-induced movement therapy (CIMT) and cathodal transcranial direct current stimulation (tDCS) applied to (...) the contralesional motor cortex. Twenty children and young adults (mean age = 12 years, 9 months, range = 7 years, 7 months, 21 years, 7 months) with UCP participated. TMS testing was performed before, after, and 6 months after the intervention to measure motor evoked potential (MEP) amplitude and cortical silent period (CSP) duration. The association between neurophysiologic and motor outcomes and differences in excitability between hemispheres were examined. Contralesional MEP amplitude decreased as hypothesized in five of five participants receiving active tDCS immediately after and 6 months after the intervention, however no statistically significant differences between intervention groups were noted for MEP amplitude [mean difference = −323.9 μV, 95% CI = (−989, 341), p = 0.34] or CSP duration [mean difference = 3.9 ms, 95% CI = (−7.7, 15.5), p = 0.51]. Changes in corticospinal excitability were not statistically associated with improvements in hand function after the intervention. Across all participants, MEP amplitudes measured in the more-affected hand from both contralesional (mean difference = −474.5 μV) and ipsilesional hemispheres (−624.5 μV) were smaller compared to the less-affected hand. Assessing neurophysiologic changes after tDCS in children with UCP provides an understanding of long-term effects on brain excitability to help determine its potential as a therapeutic intervention. Additional investigation into the neurophysiologic effects of tDCS in larger samples of children with UCP are needed to confirm these findings. (shrink)

Based on a qualitative anthropological study of American mothers of infants and young children newly diagnosed with disability, this essay examines how mothers understand their children and define disability in relation to publicly available discourses of disability and identity. In seeking to improve their children’s opportunities in mainstream society, mothers appear to comply with the medical model. But over time and in the process of providing meaning to their experience, mothers retool models, drawing both (...) on the social and minority group models’ rejection of a problem-based definition of disability as inherently caused by impairment and on their own intimate engagement with impairment as an embodied experience. (shrink)

This article presents diagrams developed from the insights of three middle school children with limited mobility about their experiences navigating social and spatial relations in their home, school and neighbourhoods. The paper explores the concept of assemblage as well as operationalising the Deleuzian idea of the diagram. The diagrams we produce are developed in connection with dominant idealisations of neighbourhood and home range that function in North America to choreograph children's progression from infancy through adolescence. We (...) undertake this diagramming in order to immediately and affectively illustrate the limits and possibilities of the challenges these young people face. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Surprised by DisabilityEmily K. MichaelToday I am meeting Diana, one of my young blind students, for coffee. Soon she will enroll in our summer program that teaches blind teenagers independent living skills and self–advocacy. Her teachers explain that she has prepared questions for me.“So,” Diana begins, as we follow the uneven sidewalk toward the restaurant. “What would you do if you wanted to go outside without your sunglasses?”I (...) can guess why she poses this question, but I conceal my theory for now. Instead, I smile and adjust the large, dark sunglasses that fit over my regular glasses. “Why would I want to do that?”“I don’t know... Just say, you wanted to,” she finishes diffidently. She walks slightly in front of me, the familiar sound of her white cane scraping and tapping against the bricks laid in the sidewalk. I rarely travel with other blind people, so the sound of her cane comforts me.“I’m so sensitive to light that I’d be miserable without my shades,” I explain. I’m careful with my tone here. Like me, Diana is unable to read facial expressions—she listens attentively to vocal cues. She is a smart 13–year–old, and she will notice if I start to sound preachy. [End Page 207]“Okay, so what if you wanted to go out without your cane?”I’m ready for this one: “Diana, my cane keeps me safe. I’m happy to have it with me.” The cane alerts me to vital environmental changes, like the textural difference between sidewalks and streets. Unexpected curbs, sudden stairs, perilous sign-posts, and wayward children become apparent to me through the white cane. It is as if the cane helps sketch the boundaries around me; its contact with objects creates a vivid spatial awareness.I sense that my responses fill Diana with a mixture of defeat and frustration. I have not validated her reticence to use the shades or cane. Nor have I handed her a rhetorical placebo, a catchy phrase she can pull out whenever she feels uncomfortable with her disability. Resisting her white cane and dark glasses, she loathes the idea of looking different. Though neither of us can see others staring, we feel the judgment and pity—and the occasional sense of wonder from those for whom we’re still a novelty, the ones who want to point and exclaim, “Look Ma, a real blind girl!”Both Diana and I carry emblems of blindness that are easily recognized from a distance—visible signs of disability. Other disabled people can “pass” as nondisabled. If they don’t use wheelchairs, crutches, canes, dogs, or braces, no one will know that they have disabilities. Hence, the disabilities that don’t require visible accessories are called “invisible disabilities”—a term that strengthens the connection between disability and appearance.Diana doesn’t want to “look” blind. She wants me to give her an out, to divulge the strategies I’ve devised for leaving the house without my cane and shades. Underneath her casual questions lies the prevailing obsession, “What’s the secret to looking normal?” As a successful blind woman, I must have it figured out. The secret, Diana, is easy to articulate and difficult to enforce. I can write it more readily than I can live it.The secret begins with a very broad spectrum of acceptance. First, I must accept myself as a blind woman who needs a cane and dark glasses to travel in safety and confidence. Then I must accept that these mobility aids are uncommon and highly visible—which means that, almost every time I go out, people will approach me. And lastly, I must accept that the attitudes of others do not determine who I am, that their idea of blindness does not define my experience of it.The white cane was not always easy for me to carry. Though I have been legally blind from birth, I did not use the white cane in my daily life until high school. Before my freshman year, I could pass as nondisabled. At high school, I found myself on a large, crowded campus with only six minutes... (shrink)

IntroductionThe relations of motor skills to different developmental domains, i.e., cognitive, emotional, and social domain, are well-documented in research on children with poor motor competence and children with disabilities. Less conclusive evidence on interaction of motor and social or emotional development can be seen in research on typically developing children. The purpose of this study was to determine a correlation between motor skills and social-emotional functioning in typically developing preschool children (...) and to identify differences in social-emotional functioning in children with different levels of motor competence.MethodsA total of 125 preschool children participated in this study. To assess children’s motor skills, we used the Test of Gross Motor Development–Second Edition that measures locomotor and object-control skills. To screen child’s social and emotional functioning, we used the Ages and Stages Questionnaire–Social Emotional: Second Edition. Spearman’s correlation analysis was used to determine association between motor skills and social-emotional functioning. Difference in social-emotional functioning between groups of preschool children with High and Low motor competences was calculated using Mann-Whitney U-test.ResultsThe main result of this study is weak correlation of child’s motor skills to social-emotional functioning. Furthermore, preschool children with High and Low motor competences do not differ in risk for social and emotional difficulties.ConclusionFurther research on typically developing children is needed to have more conclusive evidence on interaction of motor and social or emotional development. (shrink)

Intrinsic gait variability, i.e., fluctuations in the regularity of gait patterns between repetitive cycles, is inherent to the sensorimotor system and influenced by factors such as age and pathology. Increased GV is associated with gait impairments in individuals with cerebral palsy and has been mainly studied based on spatiotemporal parameters. The present study aimed to describe kinematic GV in young people with CP and its associations with clinical impairments [i.e., passive range of motion, muscle weakness, (...) reduced selective motor control, and spasticity]. This retrospective study included 177 participants with CP representing 289 clinical gait analyses [n = 172 for unilateral CP vs. 117 for bilateral CP ]. As variability metrics, Root Mean Square Deviation for nine lower-limb kinematic parameters and Gait Standard Deviation – as composite score of the kinematic parameters – were computed for the affected and most affected side, respectively, as defined by clinical scores. GaitSD was then computed for the non/less-affected side for between leg comparisons. Uni- and multivariate linear regressions were subsequently performed on GaitSD of the affected/most affected side with all clinical impairments as independent variables. Highest RMSD were found in the transverse plane, for distal joints in the sagittal plane and for foot progression. GaitSD was not different between uCP and bCP but higher in the non-affected vs. affected side in uCP. GaitSD was associated with age, gait deviation index, muscle weakness, selectivity, and pROM. After adjustment for age and GDI, GaitSD remained associated with muscle weakness and selectivity. Kinematic GV can be expressed as global indicator of variability in young people with CP given the strong correlation of RMSD for lower-limb kinematic parameters. In terms of asymmetry, increased variability of the non-affected vs. affected side may indicate contralateral compensation mechanisms in uCP. Notably muscle weakness and selectivity – but not spasticity – were associated with GaitSD. Further studies need to explore the clinical relevance of kinematic GV in CP to support the interpretation of clinical gait analyses and therapeutic decision-making. (shrink)

Tragedy is a founding theme in disability studies. Critical disability studies have, since their inception, argued that understandings of disability as tragedy obscure the political dimensions of disability and are a barrier facing disabled persons in society. In this paper, we propose an affirmative understanding of tragedy, employing the philosophical works of Nietzsche, Spinoza and Hasana Sharp. Tragedy is not, we argue, something to be opposed by disability politics; we can affirm life within it. To make our case, we look (...) to an ongoing ethnography of two Canadian children’s rehabilitation clinics. Looking to the clinical experience of Canadian boys and young men diagnosed with Duchenne Muscular Dystrophy and those of their families, we show how this affirmative understanding of tragedy allows us to pursue the themes of disability politics within tragedy. Contrary to an optimism that would eschew tragedy at all costs or a pessimistic approach that declines to act in the face of tragic circumstance, we argue that a revised understanding of tragedy allows us to situate the occasionally-tragic clinical experience of disability in a philosophy of life. Both disability and tragedy point us to the shared entanglements that make life what it is. (shrink)

Traditional measurement of multisensory facilitation in tasks such as speeded motor reaction tasks (MRT) consistently show age-related improvement during early childhood. However, the extent to which motor function increases with age and hence contribute to multisensory motor reaction times in young children has seldom been examined. Thus, we aimed to investigate the contribution of motor development to measures of multisensory (auditory, visual, and audiovisual) and visuomotor processing tasks in three young school age (...) groups of children (n = 69) aged (5−6, n = 21; 7−8, n = 25.; 9−10 n = 18 years). We also aimed to determine whether age-related sensory threshold times for purely visual inspection time (IT) tasks improved significantly with age. Bayesian results showed decisive evidence for age-group differences in multisensory MRT and visuo-motor processing tasks, though the evidence showed that threshold time for visual identification IT performance was only slower in the youngest age group children (5−6) compared to older groups. Bayesian correlations between performance on the multisensory MRT and visuo-motor processing tasks indicated moderate to decisive evidence in favor of the alternative hypothesis (BF10 = 4.71 to 91.346), though not with the threshold IT (BF10 < 1.35). This suggests that visual sensory system development in children older than 6 years makes a less significant contribution to the measure of multisensory facilitation, compared to motor development. In addition to this main finding, multisensory facilitation of MRT within race-model predictions was only found in the oldest group of children (9−10), supporting previous suggestions that multisensory integration is likely to continue into late childhood/early adolescence at least. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy, Psychiatry, & Psychology 10.1 (2003) 81-85 [Access article in PDF] "What's in the Box Then, Mum?"—Death, Disability, and Dogma Sheila Colman OVERHEARD IN AN EXCHANGE between a bereaved woman and her son outside the church just prior to a funeral service: "What's in the box, then?" "Daddy." The son is in his late 30s and has a learning disability. His mother had prepared him as well as she (...) could; his father had been ill for some time and was not expected to recover. Death, and the rituals surrounding it, had been explained and it was not the first family funeral he had attended.Trying to field such childlike questions is typical of living with a person with a learning disability; trying to find the right words is difficult enough without the added pressure of personal emotional distress.The generally accepted norm in life is that a child is parented within the home until adulthood and then independence is attained. Roles may well be reversed in later life in that the "child" may find responsibilities in caring for, and making decisions for, elderly parents. Few people can stop parenting when their offspring are fledged—even though it is at arms length and any advice may be ignored. Life with a child with a learning disability is unbalanced in this respect; as carers we do not lead lives considered to be normal because our children continue to be childlike for the rest of their, and our, lives. Some of us know that our sons and daughters do not have "apparently limitless potential... to develop skills and autonomy if only they are given the right help" (but try, as a parent or carer, saying that to a professional working in the field of learning disability!) and know that the best we can hope for is mature, rather than immature, dependence.No one tells parents of a learning disabled child—or any other, for that matter—what their responsibilities to that child are. Food, warmth, love, support, and so on are givens, but it takes a conscious effort to move a child toward adulthood when it involves changes in life, for example, moving away from the family home. The debate rages; is it letting go or getting rid of?We all delight in the pleasures our children experience in childhood; we know the magic has gone from the family Christmas once realisation dawns on the youngest child. If you consider that your son or daughter has been dealt a very poor hand in life, the temptation to prolong and promote that innocence is very tempting. It is much easier to prevaricate than to admit that life has its unpleasant sides; that failure and disappointment exist: my son was a great fan of Thomas the Tank engine videos until he was in his early teens, long after it was age appropriate. I passed them onto a younger child, having told him the videos were lost. The fall-out was spectacular [End Page 81] (but fortunately short lived!) and he eventually became very interested in Formula 1 motor racing. I had to push him to grow up.For all of us, the transition from childhood to adulthood is a process, not an event. Although I agree with the professionals that the child with a learning disability should be part of any discussions concerning his or her future, if that child does not have the intellectual capacity to make informed choices, someone else has to do it. That someone else is usually a parent, but is it a parent who is prepared to let go to help that person become an adult with his or her own life away from the family home, or is it a parent who has protected and coddled the child by promising they will never have to go?Lest you think I am a particularly hard, confrontational, and unfeeling mother, I would point out that I have almost 50 years of experience of living with learning disability in the immediate family; my son is 20 but my brother... (shrink)

The COVID-19 pandemic has precipitated profound global transformations, and in the Philippines, Emergency Remote Learning (ERT) emerged as a vital response to address the educational needs of students during this crisis. While existing research has extensively examined the challenges faced by parents during ERT, limited attention was devoted to understanding the unique experiences of parents of children with intellectual disabilities (ID) and hearing impairments (HI). Using a qualitative descriptive case study within interpretative paradigm, this study aims to fill (...) this gap by exploring the challenges encountered and coping strategies employed by 15 parents in the Philippines who have children with ID and HI. Findings illuminate the multifaceted challenges faced by parents, encompassing their roles as caregivers and facilitators of their children’s education. Moreover, it reveals the support mechanisms available to these parents, while also highlighting the pressing need for additional assistance to better meet the complex needs of these children. The research also identifies the most effective strategies employed by parents to navigate the challenges of remote learning. The results serve as a critical resource for parents, educators, and policymakers, providing a roadmap for enhancing the support system for families with children who have ID and HI, particularly during times of crisis. (shrink)

People with disabilities face attitudinal barriers including prejudice, stereotypes, and low expectations. Many young people without disabilities may doubt that people with disabilities can be fulfilling partners in any loving adult relationship. The objective of the present research was to assess the willingness of non-disabled youth to engage in conjugal relationships with persons with disabilities in Wolaita Sodo town, Ethiopia. Both descriptive and explanatory study designs were used and quantitative data were collected. A self-administered questionnaire (...) was designed and distributed to randomly selected 403 (202 females & 201 males) unmarried youth. Data analysis was undertaken using SPSS software in which both descriptive and inferential statistical techniques were utilized for data presentation. The result showed that most (85.5%) of the young people without disabilities participated in the survey were not willing to have any type of personal relationships with persons with disabilities and the main reason for 44.2% of these respondents being the fear of reaction from family members. Furthermore, it was found that the level of willingness of youth without disabilities to engage in romantic love and marital relationships was not influenced by the socio-economic status of people with disabilities. Moreover, the result of binary logistic regression analysis showed that the willingness of respondents to have marital and romantic love relationship with persons with disabilities is significantly associated to the sex (OR = 2.376; P < 0.05; 95%CI = 1.210, 4.664), raised-up area (OR = 2.512; P < 0.01; 95%CI = 1.319, 4.783), age (OR = 2.886; P < 0.05; 95%CI = 1.012, 8.228) and the presence of person with disability in the family (OR = 3.945; P < 0.01; 95%CI = 1.648, 9.442) of respondents. The findings of the present research demonstrate that people with disabilities have continued to face stereotypes and discriminations. Such stereotypes extend to assuming them as asexual and unfit to carryout roles that arise from love or marital relationships which violates the rights of PWDs to form their own family and have children. It is therefore, important to raise the awareness of young people about the differences between disability and sexuality and that physical disability has nothing to do with sexuality and relationship formation. (shrink)

The human sensory system is continuously engaged in experiencing and interpreting every interaction with other living beings, objects, and the environment. The purpose of this article is to describe the impact limited opportunities for rich sensory experiences have on students with severe disabilities in two middle school classrooms situated in a public separate school in the southeastern USA. The study employed a postcritical ethnographic approach and grounded theory thematic analysis of fieldnotes gathered over a two-year period. Three major (...) themes supported by the data are presented and discussed in depth. They are: students are afforded limited sensory rich experiences, everyday routines make students passive recipients to school, and instructional approaches result in little interaction with extended periods of waiting. The implications of the findings for improved sensory experiences and possible future directions are described. (shrink)

ObjectiveThe main purpose of this study was to explore the association between early fundamental motor skills and executive function in preschool children.MethodsA total of 394 young children were evaluated. The FMS and EF were evaluated using the Test of Gross Motor Development-2 and the NIH Toolbox Cognition Battery, respectively.ResultsTotal FMS score was moderately and positively correlated with total EF score and was a significant predictor of total EF score. Specifically, locomotor skills were significant predictors (...) of inhibition control, working memory, and cognitive flexibility, while object control skills were only significant predictors of inhibition control.ConclusionFMS were significantly and positively correlated with EF and were significant predictors of EF. Early childhood policymakers, preschool teachers, and researchers should take these connections seriously and implement appropriate complex motor intervention programs in future teaching to stimulate the development of both motor and higher-order cognitive skills in preschool children. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:IntroductionParenting Children with Autism Spectrum Disorders During the Transition to AdulthoodKelly Dineen and Margaret Bultas, Symposium EditorsThis issue of Narrative Inquiry in Bioethics is devoted to the personal stories of parents or guardians whose children with ASDs are transitioning or have transitioned to adulthood. The same parents who navigated the educational and health systems with little support twenty years ago once again find themselves (...) as pioneers in somewhat unchartered territory. Transition to adulthood, again, presents new terrain without well–defined parameters or reliable expectations for individuals with ASD and the parents who support them. At current, very little has been studied or written about the unique perspectives of parents during transition. What does exist suggests that parents of individuals with autism perceive their experiences as novel, even as compared with parents of children with other kinds of disabilities (Woodgate, Ateach, & Secco, 2008).One in 88 children is estimated to have an autism spectrum disorder (ASD) in 2012, a 78% increase since 2007 (Centers for Disease Control and Prevention, 2012). Although a variety of factors are certainly involved, the rate of diagnosis of individuals with ASDs has increased dramatically over the last twenty years and by all accounts the level and quality of support in health and social systems have lagged behind.While support and interventions have progressed significantly over time, attention on older populations has played a secondary role to early interventions. The proliferation of young people with ASD has outpaced supportive efforts at all levels. ASDs are usually diagnosed in childhood and funding for and access to research and interventions for children have resulted from, in no small part, the zealous efforts of parents. As this growing population of individuals with ASDs transitions to adulthood, finding appropriate supports and interventions have proven more elusive and more complicated. The hallmark symptoms of ASDs include social skill deficits and communication and behavioral difficulties—all traits that especially strain typical teenage and young adult relationships. Recent research backs up these difficulties and indicates that individuals with ASDs fare relatively poorly in traditional measures of independence such as employment, education and social relationships. Parents like the authors in this symposium continue to work to help their teenage and adult children navigate the demands, challenges and rewards of adulthood and independence with all its uncertainties and surprises.The editors of this issue of Narrative Inquiry in Bioethics solicited the personal stories of the parents who have navigated this transition. The call for stories was distributed to autism awareness groups, autism list–serves, bloggers, and social media outlets. Personal appeals to thought leaders and advocacy groups to distribute the call for stories also produced a number of responses. The [End Page 147] people and organizations that passed along our request and responded are too numerous to list here but our gratitude is sincere: their help made this issue possible.We hope the stories will give readers a sense of what parents find rewarding as well as especially challenging during this time and what actions and supports make a difference for the better. Stories about any aspect of the transition were welcome, ranging from navigating the health system to issues surrounding romantic relationships. We welcomed parents’ thoughts on any topic, including gender, level of function, provider behavior, stigma, friendship, services (existing or needed), decision making, independent living, co–morbidities, expectations, work, school or relationships.These topics and more emerged. Stories primarily came from mothers; however one father and one uncle also contributed. Consistent with diagnostic trends, most tell stories of parenting young men. The 12 stories that were selected for this edition represent just a fraction of the diverse set of issues, needs and commonalities of this growing population of adults. We received more stories than we could put in print. Twelve were selected to represent a range of experiences. Many other stories were so powerful that they will appear on–line in the Project MUSE edition of the journal.Commentators also represent a diverse group of professionals whose work includes direct care and support of individuals with ASD and their families, education, research, scholarship and advocacy. Some of our commentators also have a child or a loved one with ASD.Patricia Bashe... (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)

Decisions regarding life-sustaining medical treatments for young children with profound disabilities can be extremely challenging for families and clinicians. In this study, Brick and colleagues1 surveyed adult residents of the UK about their attitudes regarding withdrawal of treatment using a series of vignettes of infants with varying levels of intellectual and physical disability, based on real and hypothetical cases.1 This is an interesting study on an important topic. We first highlight the limitations of using these survey (...) data to inform public policy and then offer a different interpretation from the authors’ regarding their findings about the value the public appears to place on relational capacity. The authors asked members of the lay public to interpret a disabled child’s best interest in a series of vignettes. The respondents were 92% white; 59% were atheist or reported no religious affiliation. Though the authors note this lack of diversity as a limitation, we would add that this limitation is particularly problematic in this context. Minority views on this issue may differ significantly from the majority perspective. When the stakes are high (as is the case for questions about withdrawing life-sustaining therapy from infants over parental objections), use of public opinion data to directly inform policy requires, at a minimum, a representative sample reflecting both the true diversity of views within the public and a method to justly account for the alternate views of the minority. Even if the sampled population were more …. (shrink)

The present study aimed to analyze the stability of the memory of a stressful event (medical examination within a hospital setting) over time in young people (age range 12 to 21, Mage = 15.11 years old, SD = 3.047) with mild or moderate intellectual disability (IQ = 54.32, SD = 13.47). The results show a stability of the memory of what happened an hour and a week after the event in relation to the people involved, the apparatus used, (...) and the parts of the body explored. No interaction effects were found between the stability of memory over time and the level of intellectual disability. The level of disability (mild or moderate) only affected the description of the doctor who performed the exploration and the explored parts of the body, showing better results for people with mild disability. In addition, the results highlight the relationship between memory and IQ, especially verbal IQ. (shrink)

In this paper, the author addresses the problem of socialisation of children with a history of disabilities and mental retardation by means of visual arts. It is important to look at the very sphere of life of these categories of children. As a rule, these children, for the most part, live in dysfunctional families, which makes it almost impossible to provide them with a form of socialization. This article focuses on the extent to which and (...) how a programme of socialisation of these children can be achieved through the medium of visual arts. At the moment there are works of modern pedagogues who have devoted their scientific researches to this problem, but there are few teachers-artists who deal with this problem. In this article the author devotes his creative attention to this issue and reflects on what means of fine arts and visual literacy can develop and guide in the right direction the socialization of children and young people with disabilities by means of fine arts. A number of scientific works devoted to this problem are seriously reviewed. The author is actively trying to draw the attention of the teaching community to the problem of prevailing social conditions, to reach an educational and cognitive level and, as a consequence, to a better product of the set task of socialization of children with special needs and disabilities in the learning process by means of subject disciplines: drawing, painting, composition, printmaking, etc. (shrink)

COVID-19 Lockdown was particularly challenging for most mothers of people with intellectual disabilities, including those with Rett syndrome, leading to feelings of abandonment from healthcare services of their children. Within those days, telerehabilitation has represented a valid alternative to support physical activity and treatment, supporting parents in structuring their children’s daily routine at home. This article aims to describe the well-being level of two groups of mothers of girls and women with RTT who were involved (...) in a home-based remotely supervised motor rehabilitation program, respectively, before and during the COVID-19 Italian lockdown. Forty participants with classic RTT were recruited before the lockdown and randomly assigned to two groups that performed the intervention immediately before and during the lockdown, respectively. The intervention included an individualized daily physical activity program carried out for 12 weeks by participants’ parents and fortnightly supervised throughout Skype contacts to plan, monitor, and accommodate individual activities in the participant’s life at home. The short form Caregivers Well-Being Scale was collected for the mothers in each group 12 weeks before intervention, at intervention initiation, immediately after intervention termination, as well as at 12 weeks after intervention termination. Mothers of participants in the Group 1 showed a stable level of well-being across all four evaluations with a slight improvement during the lockdown, without significant change. Similarly, the well-being level of mothers in the Group 2 showed a statistically significant increase in their well-being between T2 and T3 and its reduction to the pre-intervention level between T3 and T4. The results suggest that the lockdown did not negatively affect the participants’ mothers’ well-being, leading to its improvement. Moreover, the proposed intervention could have supported the mothers in managing the new daily routine at home, positively affecting maternal well-being. (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)

Training on working memory (WM) improves attention and working memory in children with attention-deficit hyperactivity disorder and memory impairments. However, for children with intellectual disabilities (ID), the results have been less encouraging. In this preliminary study it was hypothesized that children with ID would benefit from an extended amount of training and that the level of difficulty during training would affect the outcome. We included 21 children with mild or moderate intellectual disabilities (...) aged 8–13 years. They went through between 37 and 50 training sessions with an adaptive computerized program on WM and non-verbal reasoning (NVR). The children were divided into two subgroups with different difficulty levels during training. The transfer to untrained cognitive tests was compared to the results of 22 children with intellectual disabilities training only 25 sessions, and to a control group. We found that the training group with the extended training program improved significantly on a block design task measuring NVR and on a WM task compared to the control group. There was also a significantly larger improvement on block design relative to the training group with the shorter training time. The children that received easier training tasks also improved significantly more on a verbal WM task compared to children with more demanding tasks. In conclusion, these preliminary data suggest that children with ID might benefit from cognitive training with longer training periods and less demanding tasks, compared to children without disabilities. (shrink)

The perceived meaning of life significantly affects the quality of human life. It is of particular significance in borderline situations. One of such situations is the birth of an intellectually disabled child. The article presents the results of the study concerning the perceived meaning of life in the case of parents who bring up a child with limited intellectual abilities. The study included 87 mothers and 65 fathers bringing up an intellectually disabled child. In the studied cases, parents perceived (...) their life as highly meaningful. The results indicated that the perceived meaning of life in the case of parents of intellectually disabled children was related with: suffering experienced by the parents as a result of a limited intellectual ability of their daughter/son, the manner of performing their parental role and the sense of parental identity. (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)

Cette étude vise à identifier les facteurs associés à l’insatisfaction des jeunes adultes finlandais qui présentent une incapacité physique majeure, avec ou sans déficience intellectuelle concomitante, à la suite de leur transition des services santé pour enfants aux services pour adultes. Les pédiatres neurologues ont utilisé la grille d’évaluation clinique du Système de classification de la fonction motrice globale (étendu et révisé) de niveau IV ou V afin de diagnostiquer l’incapacité physique majeure spécifique à chacun des 74 participants (âge moyen (...) : 20,2 ans). Trente-neuf (53%) participants présentaient une déficience intellectuelle concomitante, selon la CIM-10 (QI inférieur à 70). Les pédiatres neurologues ont développé l’instrument Severely Disabled Youths’ Life Situation and the Functioning of the Service Systems in Finland afin de recueillir et traiter les données. Enfin, les tests de Fisher examinaient les corrélations entre l’insatisfaction des facteurs de soins et les soins de santé. Des régressions logistiques binaires ont permis d’associer l’insatisfaction à l’égard des services santé à la nécessité d’utiliser de nouveaux appareils d’assistance, à la difficulté accrue d’accéder à des rendez-vous médicaux et à l’ignorance des médecins à l’égard des problématiques du handicap. L’étude recommande la création de cliniques neurologiques multi-professionnelles qui accueilleraient les jeunes adultes qui présentent des incapacités physiques majeures, avec ou sans déficience intellectuelle, et qui initieraient les médecins aux caractéristiques de ces catégories de patients et à leurs enjeux spécifiques. (shrink)

MyJay is an open-source robot designed to facilitate play between children with and without physical disabilities. The robot acts as a proxy for children with upper limb challenges, allowing them to participate in physical games with their peers. Our design was inspired by the FIRST Robotics Competition, which involves teleoperating robots to manipulate objects. Taking a user-centred perspective, we consulted therapists and conducted remote interviews with children with disabilities and their guardians at (...) various stages of the design process. We then conducted an in-person feasibility study with 18 typically developing children in a school setting. The study involved children teleoperating the robot to pick up and throw balls into a designated goal, and the interaction was evaluated using the user experience questionnaire and the Robotic Social Attributes Scale. The results of the study show great potential for MyJay to act as a play mediator in various scenarios, and the response from the children was positive. The ultimate aim of our research agenda is to pave the way towards creating more inclusive play environments through robot-mediated interactions, breaking barriers posed by physical limitations. (shrink)

Advances in technology, research development, and teaching practices have brought improvements in the training, levels of autonomy, and quality of life of people who need support and resources appropriate to their circumstances of disability. This article focuses on empirically analyzing the usefulness of treatments that have been supported by technology to answer the question “How do technological ecosystems being used help people with special educational needs?” The multiple case study methodology was used to address six categories of analysis: project (...) data, objectives, processes, outputs and outcomes, technologies, and impact. The processes, open in communication, were characterized as transversal, ethical, and sustainable. The results yielded various technological ecosystems that support people with disabilities, deliver the help they need to improve their health, and provide enjoyable user experiences. At the same time, they promote the training and improvement of teaching methodologies and involve families in order to improve their knowledge, attitudes, and care of children, young people, and adults with functional diversity. (shrink)

Spinal muscular atrophy (SMA) type 1 is a genetic neuromuscular disease in children that leads to degeneration of spinal cord motor neurons. This sometimes results in severe muscular paralysis requiring mechanical ventilation to sustain the child’s life. The onset of SMA type 1, the most severe form of the disease, is during the first year of life. These children become severely paralysed, but retain their intellectual capacity. Ethical concerns arise when mechanical ventilation becomes necessary for survival. When (...) professionals assess the resulting life for the child and family, they sometimes fear it will result in unreasonably excessive care. The aim of this article is to present an analysis of ethical arguments that could support or oppose the provision of invasive ventilation in this population. This examination is particularly relevant as France is one of the few countries performing tracheotomies and mechanical ventilation for this condition. (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)