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BACKGROUND: Young people with intellectual developmental disabilities have a persistent delay in the development of executive functions. Virtual reality (VR) is increasingly being used as a cognitive intervention tool, with significant effectiveness demonstrated in different types of populations. METHODS: This pilot study aims to investigate the impact of a cognitive training program utilizing VR on young adults diagnosed with intellectual developmental disabilities (IDDs). The participants (N = 15) served as their own control group and were assessed three times: weeks 0, 8, and 16, with a rest period (0-8 weeks) and an intervention period (8-16 weeks). The assessments included measures of cognitive function provided by E-Prime® (Version 3). RESULTS: Overall, an improvement in working memory and inhibitory control was found after the intervention, but not in sustained attention. CONCLUSIONS: These findings suggest that VR-based cognitive training holds promise as an effective intervention for enhancing cognitive abilities in young adults with intellectual developmental disabilities. This study provides a foundation for future investigations into VR's role in cognitive rehabilitation and its potential to support daily living skills and overall quality of life for individuals with IDDs. Further research is needed to explore the long-term effects and broader applicability of VR interventions.

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Objective: To describe how the intersectionality of race, ethnicity, and language with autism and intellectual and developmental disability (IDD) impacts mental health inequities in psychopharmacological management of youth. Method: This was a scoping review in which a series of searches were conducted in PubMed, Web of Science, Google Scholar, and manual review of the articles collected. Results: Although autism and/or IDD increases the risk for poor physical and mental health, social determinants of health such as race, ethnicity, and language account for approximately a third of poor outcomes. Minoritized children with autism/IDD experience significantly greater delays to diagnosis and misdiagnosis and are less likely to receive appropriate services. Access to psychological testing and psychosocial services is often limited by availability, skilled practitioners, a shortage of non-English-language providers or interpreters, and poor reimbursement. Conclusion: The intersectionality of autism and/or IDD with race, ethnicity, and language compounds the health inequities associated with either of these challenges independently.

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PURPOSE: The purpose of this study was to compare antipsychotic use by youth with intellectual/developmental disabilities to youth without IDD as they transitioned from pediatric to adult health care services. In addition, antipsychotic use was compared between youth with different types of IDD (autism, Fetal Alcohol Syndrome, Down syndrome and 'other'). METHODS: Population level administrative health data was used to compare the dispensing of antipsychotics for youth aged 15 to 24 years with and without IDD, between 2010 and 2019. Because antipsychotics are associated with metabolic syndrome and type 2 diabetes, we also examined the dispensing data for metformin. In addition, we examined dispensed antipsychotics between different types of IDD. For both dispensing of antipsychotics and metformin, we used multi-variable logistic regression to derive adjusted odds ratios. RESULTS: There were 20,591 youth with IDD and 1,293,791 youth without IDD. Youth with IDD had significantly higher odds of being dispensed an antipsychotic (7.13 (6.82, 7.44)), even when a diagnosis of a psychotic illness was included in the regression. Higher odds were found in all age groups. Youth with IDD also had significantly higher odds of being dispensed metformin (3.739 (3.323, 4.208)) compared to youth without IDD. Youth with autism, FAS and 'other' types of IDD diagnoses all had higher odds of being dispensed an antipsychotic compared to youth with Down syndrome. CONCLUSION: Compared to youth without IDD, youth with IDD were more frequently dispensed antipsychotics and metformin. These findings have important implications for the health of youth with IDD.

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Background: We compared the effects of home- vs gym-based delivery modes of two 8-week supervised multicomponent intensity training regimes on cardiorespiratory fitness and arterial stiffness in 17 adults with intellectual and developmental disability during the COVID-19 pandemic. Methods: Participants were assigned to sprint interval training or continuous aerobic training, both incorporating resistance training. The intervention started with 8-weeks of online training (M1-M2), 1-month of detraining, plus 8-weeks of gym-based training (M3-M4). Results: Peak oxygen uptake decreased from M1-M2 and increased from M2-M4. Central arterial stiffness decreased between M1-M2, and M1-M4, along with peripheral arterial stiffness. Central systolic blood pressure decreased from M1-M2 only with sprint interval training. Conclusion: Home-based training minimized the negative impact of the lockdown on central arterial stiffness and central blood pressure, but it did not match the benefits on cardiorespiratory fitness and peripheral arterial stiffness of a gym-based intervention, irrespective of the multicomponent intensity training regime. Registered in ClinicalTrials.gov NCT05701943.

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BACKGROUND: Cognitive reserve (CR) has not been studied in people with Intellectual Developmental Disability, a population with a high incidence of dementia. Commonly adopted CR proxies should be adapted to reflect more specifically the experiences of people with Intellectual Developmental Disability. METHOD: This scoping review intended to identify CR proxies relevant to people with this condition. RESULTS: Some of these were the same already detected in a population without intellectual disabilities (education, occupation, physical activity, leisure, community and social activities); others were found to be specifically relevant for this population: type of schooling, parental educational level, environmental stimulation and living place. CONCLUSIONS: These proxies need to be considered in studies on CR and Intellectual Developmental Disability and in clinical practice. Research on the protective effect of CR aims to encourage policies promoting lifestyle-based educational and preventive interventions and overcome participation barriers for people with Intellectual Developmental Disability.

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There is evidence in the literature that youth with intellectual/developmental disabilities (IDD) experience mental health issues to a greater extent compared to youth without IDD. In addition, transition from pediatric to adult services may be a period of increased anxiety and mental health problems for these youth. This study used a retrospective cohort design using population level administrative health data to compare mental health diagnoses between youth with IDD and youth without IDD; particularly examining the period when youth transition from pediatric health services to adult health services. In addition, this study compared the mental health of youth with various types of IDD (Down syndrome, autism, fetal alcohol syndrome and other rarer diagnoses). Results showed that at the population level youth with IDD have greater odds of anxiety/depression or psychotic illness than youth without IDD. Adjusted odds of anxiety/depression or psychotic illness also varied with age, income level, sex, and type of IDD. Youth with fetal alcohol syndrome had the greatest odds of both anxiety/depression and a psychotic illness. Odds of anxiety/depression increased from age 15-19 years old. Odds of a psychotic illness increased from age 15 to age 24 years old.

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BACKGROUND: Intellectual disability (ID) is a con neurodevelopmental disorder in children. The genetic etiology of ID is complex, but more subtypes are defined due to the broad application of next-generation sequencing. METHODS: Whole-exome sequencing (WES) and Sanger sequencing was applied in a family with ID. RESULTS: We report a Chinese 7.5-year-old boy, born to non-consanguineous parents. He showed severe intellectual disability, seizures and autistic features. Two previously unreported variants in MBOAT7, c.669C>G (p.(Tyr223*)) and c.1095C>G (p.(Ser365Arg)) were identified by trio-WES. His mother is a heterozygous carrier of the c.1095C>G variant. The c.669C>G variant is a de novo variant which was undetected in his parents. By construction of the full-length cDNA of the patient's MBOAT7, we verified that these two variants were trans-compound heterozygous variants, which support the genetic etiology of this patient. CONCLUSION: This patient is the first Chinese case of intellectual developmental disorder (IDD), autosomal recessive 57 (OMIM:617188) with two unreported MBOAT7 variants.

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Rationale: Loss-of-function (LoF) mutations in GRIN2B result in neurologic abnormalities due to N-methyl-D-aspartate receptor (NMDAR) dysfunction. Affected persons present with various symptoms, including intellectual developmental disability (IDD), hypotonia, communication deficits, motor impairment, complex behavior, seizures, sleep disorders and gastrointestinal disturbance. Recently, in vitro experiments showed that D-serine mitigates function to GluN2B (mutation)-containing NMDARs. 11 previous case reports are published on (experimental) L-serine treatment of patients between 1.5 and 12 years old with GRIN2B missense or null mutations, some of whom showed notable improvement in motor and cognitive performance, communication, behavior and abnormalities on electro encephalography (EEG). Our objective is to further evaluate the effectiveness of L-serine for GRIN2B-related neurodevelopmental disorder (GRIN2B-NDD), using an n-of-1 trial design, increasing the level of evidence. Methods/design: These n-of-1 trials, consisting of 2 cycles of 6 months, will be performed to evaluate the effect of L-serine compared to placebo in 4 patients with a GRIN2B LoF mutation. The aggregation of multiple n-of-1 trials will provide an estimate of the average treatment effects.The primary outcome is the Perceive-Recall-Plan-Perform of Task Analysis, assessing developmental skills. Secondary outcomes include Goal Attainment Scaling, seizure log books, EEGs, sleep log books, the irritability subscale of the Aberrant Behavior Checklist, the Bristol Stool Scale and the Pediatric Quality of Life Inventory. Conclusion: This study employs an innovative methodological approach to evaluate the effectiveness of L-serine for patients with a GRIN2B LoF mutation. The results will establish a foundation for implementing L-serine as a disease-modifying treatment in GRIN2B-NDD.

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BACKGROUND: There is evidence that female youth with intellectual/developmental disabilities (IDD) experience poorer gynecological care compared to female youth without disabilities. OBJECTIVE: The objective of this study was to obtain baseline data on visits to a health care provider for a gynecological issue for females with IDD and compare that information to the experiences of female youth without IDD. METHODS: This study is a retrospective cohort study using population-level administrative health data from 2010 to 2019 for females aged 15-24 years, with and without IDD. RESULTS: 6452 female youth with IDD and 637,627 female youth without IDD were identified in the data. Over the ten-year period, 53.77% of youth with IDD and 53.68% of youth without IDD had a visit to a physician for a gynecological issue. However, as females with IDD aged, the number of people seeing a physician for a gynecological issue decreased. In the group aged 20-24 years, 15.25% of females with IDD and 24.47% of females without IDD (p < 0.0001) had a Pap test done at any time; 25.94% of females with IDD had a visit for contraception management and 28.38% of females (p < 0.0001) without IDD had a visit for contraception management. Gynecological care also varied by type of IDD. CONCLUSIONS: Females with IDD had a similar number of visits for a gynecological issue as female youth without IDD. However, the reasons for visits and the age at which visits occurred differed between youth with and without IDD. As females with IDD transition into adulthood, gynecological care must be maintained and improved.

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INTRODUCTION: The literature indicates that youth with intellectual/developmental disabilities (IDD) have poor health and that access to health services decreases as they transition from pediatric to adult services. At the same time their use of emergency department services increases. The objective of this study was to compare use of emergency department services by youth with IDD to youth without IDD, with particular emphasis on the transition period from pediatric to adult health care services. METHODS: This research used a population level administrative health data base for the province of British Columbia Canada for 2010-2019 to examine the use of emergency departments by youth with IDD (N = 20,591) compared to a population group of youth without IDD (N = 1,293,791). Using the ten years of data, odds ratios for visits to the emergency department were calculated adjusting for sex, income and geographical area within the Province. In addition, difference-in-differences analyses were calculated for age matched subsets of the two cohorts. RESULTS: Over the ten year period, 40.60% of youth with IDD visited an emergency department at least once, compared to 29.10% of youth without IDD. Youth with IDD had an odds ratio of visiting an emergency department 1.697 (1.649, 1.747) times that of youth without IDD. However, when odds were adjusted for a diagnosis of either psychotic illness or anxiety/depression, the odds for youth with IDD visiting emergency compared to youth without IDD were reduced to 1.063 (1.031, 1.096). Use of emergency services increased as youth aged. Type of IDD also affected use of emergency services. Youth with Fetal Alcohol Syndrome had the greatest odds of using emergency services compared to youth with other types of IDD. DISCUSSION: The findings from this study indicate that youth with IDD have higher odds of using emergency services than youth without IDD although these increased odds appear to be largely driven by mental illness. In addition, use of emergency services increases as the youth age and transition from pediatric to adult health services. Better treatment of mental health issues within this population may reduce their use of emergency services.

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Background: The COVID-19 global pandemic has put adults with intellectual/developmental disabilities at greater risk of being socially excluded due to physical distancing. Technology has been looked at as a tool for adults with intellectual/developmental disabilities to stay connected, however, little is known about this topic. The purpose of this study was to explore how a grassroots disability organisation used technology to help adults with intellectual/developmental disabilities feel socially connected during the pandemic. Methods: Data were collected through questionnaires, attendance records, and field notes; and analysed through trend and thematic analysis. Findings: Four main themes emerged from the data: active leadership, mental wellbeing, technology/digital inclusion, and safety. Conclusion: These findings suggest that when participants overcome technological barriers they found it easy to socially connect online during lockdown.

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Children and adolescents with autism spectrum disorder (ASD) and/or Intellectual/Developmental Disability (IDD) are at greater risk of developing comorbid medical conditions, mental health diagnoses, behavioral challenges, and having overall poorer physical and mental health outcomes. Hospital environments present unique stressors and challenges for children and adolescents with ASD/IDD including a change in familiar environment, unpredictable routines, and exposure to sensory stimuli that may be overwhelming. While many school boards have specialized multi-disciplinary special needs support teams and services made up of professionals with expertise in supporting students with ASD/IDD, most hospitals do not have a formal multi-disciplinary ASD/IDD support team in place to support patients, families, and health care staff across the hospital. There is an emerging recognition of the need for specialized multi-disciplinary developmental-behavioral and mental health expertise in hospital inpatient settings. This paper describes the framework for the development of an innovative multi-disciplinary program to better support children and adolescents with ASD/IDD within a tertiary children's hospital setting.

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BACKGROUND: Trauma is a significant underlying factor in the multimorbidity of people with Intellectual and/or Development Disabilities (IDD). This relationship is further complicated by a growing recognition of a subset of multiply stigmatized individuals with an IDD and complex, intersecting health and social needs. AIM: The aim of this review was to examine what is known about trauma and people with an IDD and complex needs, as defined by Community Living British Columbia's (CLBC) Multiple, Complex Needs (MCN) framework, through a broad review of relevant literature. METHOD AND PROCEDURES: We conducted a scoping review of the peer-reviewed (9 disability journals; 7 academic databases) and grey (2 grey literature databases) on IDD and trauma through an inclusive approach that used search criteria drawn from the defining features of CLBC's MCN Framework. OUTCOMES AND RESULTS: Apart from there being a limited amount of research on trauma and IDD, two key findings emerged. Through differing approaches that get at issues of trauma in different ways (i.e., through adverse life events or experiences of abuse), the first finding is that the research related to trauma and IDD is not cleanly linked together. The second is the focus on treatment services or interventions and not on what's happening at the organizational or system level. CONCLUSION AND IMPLICATIONS: There is limited research on trauma and IDD making it even more important to unify the evidence that exists. However, the literature is not integrated across different theoretical and disciplinary perspectives. In addition, the focus of trauma-related research that is occurring is interventions at the individual versus system level. Also needed are studies that explore trauma-informed practice from an organizational or top-down perspective.

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INTRODUCTION: Preliminary evidence suggests dialectical behaviour therapy (DBT) may be beneficial for persons with intellectual disabilities. This pilot randomized controlled trial aimed to determine the feasibility of adapted DBT for adults with intellectual disabilities and co-morbid psychiatric disorders in the community. METHODS: An adapted DBT programme (aDBT-ID) was delivered to adults with mild-to-moderate intellectual disability (n = 20) and their caregivers (n = 20). A single-blind, mixed-methods design was employed with treatment (n = 10) and control (n = 10). In addition to feasibility, pre-post-measures of emotional regulation, anger and mental health were taken from clients and caregivers. RESULTS: Results suggest it was feasible and beneficial to deliver adapted DBT in the community. Qualitative findings found both participants and caregivers were satisfied with the treatment delivery. No differences between conditions were found. CONCLUSION: This pilot study highlights the feasibility of adapted DBT for individuals with intellectual disabilities and the practicalities of delivering community-based inclusive research.

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BACKGROUND: Research suggests that sport facilitates belonging for diverse athletes. This scoping review characterizes literature on sport participation and belonging for young adults with intellectual and developmental disabilities. MATERIALS AND METHODS: A search of five databases identified 17,497 articles. Selected articles (N = 39) underwent data extraction and analysis guided by a theoretical framework of belonging, outlining four processes through which belonging is experienced by individuals with intellectual and developmental disabilities. RESULTS: Articles originated from developed countries and in the context of Special Olympics (N = 17). Studies commonly used qualitative interviews with proxy respondents. While all studies described at least one belonging process, only 11 studies applied the term "belonging," and no study defined the construct. CONCLUSION: Belonging is not well-conceptualized in sports literature for athletes with intellectual and developmental disabilities. Understanding belonging through sport participation for this population may inform sport-based policies and programming.

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In Norway, where all citizens are entitled to live in their own homes in their local communities, people with intellectual disabilities receive community-based home care services that aim to promote their ability to live on their own. In our study, we investigated how using an assistive device for cognitive impairment - namely, a memo planner (MP) - in community-based home care services affected the everyday lives of people with intellectual developmental disabilities (IDD). Our sample consisted of seven young adults with IDD and their support staff. Data were collected during field observations and group interviews and analysed via systematic text condensation. The findings illuminate how using an MP can structure the daily lives of young adults with IDD and afford them opportunities to participate in everyday activities. In this article, we discuss how using an MP shapes interactions between people with IDD and their support staff.

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Intellectual disability (ID) or intellectual developmental disability (IDD) is one of the commonest neurodevelopmental disabilities worldwide and is known to affect 2% of the population of France or just over a million people. It is marked by a reduced ability to reason and understand abstract or complex information, which heavily restricts school learning and limits the individual's ability to adapt to daily life, including their transition to adulthood. Intellectual handicap or mental handicap results from an interaction between the individual vulnerability of a person with ID and their ecosystem, in other words, their family, and cultural and institutional environment, which can be a barrier or a facilitator. Identifying a child with an unusual developmental trajectory requires professionals to have a good understanding of psychomotor development. ID may be isolated but is very often intertwined with other neurodevelopmental disorders, including autism, motor or sensory difficulties (hearing, vision), serious sleep and eating disorders, and medical conditions such as epilepsy, as well as a wide variety of psychopathologic problems, including anxiety, depression, and emotional regulation disorders. There are many causes of ID. More than half of all cases are genetic in origin, and there are several hundreds of rare diseases about which little is known so far. The use of new genetic techniques (high-throughput sequencing) should reduce the number of people who are undiagnosed and give way to a comprehensive diagnostic approach based on clinical practice. A regular multidimensional evaluation of cognitive, educational, socioemotional, and adaptive skills throughout life provides a better understanding of how individuals with ID function and will contribute toward the planning of more appropriate strategies for learning, care, and support, leading to a better quality of life and participation in society.

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BACKGROUND: Adults with Intellectual and Developmental Disabilities (IDD) have poor oral-hygiene and oral health. A better understanding of their oral-hygiene behaviours will inform interventions to improve personal and population health. OBJECTIVE/HYPOTHESIS: To identify the oral hygiene behaviours undertaken by and on behalf of older people with IDD. METHODS: Cross-sectional survey from the third wave of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) undertaken 2016-2017. Frequency of oral hygiene, level of support, type of brush used and for a subsample, brushing technique are reported. Bivariate analyses adopted Pearson's Chi Square test of independence. RESULTS: The sample (N = 609) had a mean age of 59.7 years (SD = 8.8); 88.4% (n = 536) reported tooth cleaning at least daily. The majority who had teeth to clean reported using standard toothbrushes (75.9%), with a minority using electric (9.6%) or modified toothbrushes (5.9%). Of the 505 who reported cleaning teeth, 285 (48.5%) did not report any assistance, 127 (25.2%) were totally dependent on another person and 133 (26.3%) reported assisted cleaning, of whom 40.0% (n = 52) were Supervised, reminded or encouraged, 27.7% (n = 36) reported Hand-on-Hand and 23.8% (n = 31) reported Brush-after-Brush techniques. An association was detected between assistance and type of toothbrush used (p < 0.001). None was detected between assistance and frequency-of-brushing (p > 0.05). CONCLUSIONS: Older adults with IDD present with a complex mix of supports, toothbrushes and techniques. This highlights the complexity of oral-hygiene behaviour for this population and indicates the need for bespoke individual care plans and complexity in interventions to improve population oral-hygiene.

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Purpose: The main objectives of this study were to learn from youths with intellectual and developmental disabilities about the ways their families were involved in their engagement in community life and to capture how they felt about such involvement.Method: The current study is a secondary analysis of a larger study, the Voices of Youths Research Project, framed by inclusive research methods. Thirty-eight semi-structured interviews that discussed perspectives on friendship, social inclusion, and quality of life from 20 participants (ages 13 to 24 years) were included in this paper. All interviews were video-recorded and coded using NVivo 10. Thematic analysis of the coded segments was guided by a constructivist grounded theory approach.Results: Three major themes emerged from the experiences of youths with intellectual and developmental disabilities on family involvement in their social and community engagement: (1) complex of supports and influences, (2) community engagement with and through family, and (3) points of tension.Conclusions: These thematic findings offer insights into the lived experiences of youths with intellectual and developmental disabilities about engagement in community life. These findings provide an understanding, outside of conventional schemas, of transition into young adulthood for these youths.IMPLICATIONS FOR REHABILITATIONRehabilitation professionals often work with youths with intellectual and developmental disabilities who face barriers to reaching transition goals identified either by themselves or others.Family members' views that may focus on goals of maximizing functional independence and/or decreasing caregiver demands can often overshadow the goals or views of youths with intellectual and developmental disabilities themselves.Rehabilitation professionals should find ways to explore with youth their family's roles in engagement and belonging in community life so that they can link youths to appropriate community resources and plan optimal interventions/programs.Rehabilitation professionals need to be aware of and respond to points of tension that can emerge between youths with intellectual and developmental disabilities and their family during transition.

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Background Medication management is undertaken by caregivers of people who have intellectual or developmental disabilities. Objective The objectives were to measure the medication management hassles reported by caregivers of adults who have intellectual or developmental disabilities and to describe associations between characteristics of caregivers, medication regimens, and the person with intellectual or developmental disability and the scale score. Setting Web-based survey conducted in the United States. Method A newsletter announcement with a link to the survey was sent to members of a disability advocacy organization. Caregivers were age 18 years and older who manage medications for adults with intellectual or developmental disabilities. The survey questions were used to obtain characteristics of the caregiver, the medication regimen they managed, and the care-recipient. The study was approved by the Institutional Review Board of Michigan Medicine (HUM00091002). Main outcome measure The Family Caregiver Medication Administration Hassles Scale (caregiver scale). Results Forty-two caregivers responded, with 41 being female with a mean age of 56.7 years. The mean caregiver scale score was 28.9 (possible range 0-120). Highest scores (greatest hassles) were significantly associated with a greater level of support required by the care-recipient, stronger caregiver beliefs of the necessity of medication and concern about using medications, lack of previous caregiver health-care training, and being an employed caregiver rather than family member. Conclusion Medication management can contribute to caregiver stress. Pharmacists should ensure that caregivers are counseled about medication that they manage, be accessible for questions, and examine medication regimens to reduce polypharmacy and complexity of regimens.

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