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Child Abuse & Neglect Nov 2023Youth with intellectual and developmental disabilities (IDD) are at a significantly increased risk of experiencing maltreatment and abuse. Child maltreatment prevention...
BACKGROUND
Youth with intellectual and developmental disabilities (IDD) are at a significantly increased risk of experiencing maltreatment and abuse. Child maltreatment prevention education programs are effective at improving safety of children and youth, generally.
OBJECTIVE
The goal of this study was to understand challenges, benefits, and important considerations of developing an IDD-tailored prevention program.
PARTICIPANTS AND SETTING
In total, we recruited 21 professionals and parents who have experience with a child with IDD from New York, Indiana, and Florida.
METHODS
Participants were segmented into three focus groups, which were conducted through web-based videoconferencing. Focus groups were moderated by experts in child maltreatment prevention and recorded for data collection. Recordings were transcribed and subsequently coded using a qualitative content analysis approach.
RESULTS
The analysis identified several challenges to implementing child maltreatment prevention to students with IDD and pedagogical strategies to overcome those, such as the use of visuals, standardized vocabulary, and relatable examples. Benefits of a prevention program were also mentioned, including feelings of empowerment that can be cultivated by providing opportunities where children with IDD practice being assertive. Considerations for program developers and staff were discussed to ensure that prevention programs are easily adaptable to suit the needs of students with IDD across the continuum.
CONCLUSIONS
Previous research has indicated an unmet need for child maltreatment programs among children with IDD. Implementation of an IDD-tailored program must be preceded by gaining invaluable insight from professionals and parents. Findings provide insight into implementation challenges and methods to inform prevention programs.
Topics: Adolescent; Humans; Child; Developmental Disabilities; Educational Status; Students; Parents; Child Abuse
PubMed: 37647780
DOI: 10.1016/j.chiabu.2023.106428 -
Science Advances Aug 2023The 1.6-megabase deletion at chromosome 3q29 (3q29Del) is the strongest identified genetic risk factor for schizophrenia, but the effects of this variant on...
The 1.6-megabase deletion at chromosome 3q29 (3q29Del) is the strongest identified genetic risk factor for schizophrenia, but the effects of this variant on neurodevelopment are not well understood. We interrogated the developing neural transcriptome in two experimental model systems with complementary advantages: isogenic human cortical organoids and isocortex from the 3q29Del mouse model. We profiled transcriptomes from isogenic cortical organoids that were aged for 2 and 12 months, as well as perinatal mouse isocortex, all at single-cell resolution. Systematic pathway analysis implicated dysregulation of mitochondrial function and energy metabolism. These molecular signatures were supported by analysis of oxidative phosphorylation protein complex expression in mouse brain and assays of mitochondrial function in engineered cell lines, which revealed a lack of metabolic flexibility and a contribution of the 3q29 gene Together, these data indicate that metabolic disruption is associated with 3q29Del and is conserved across species.
Topics: Child; Humans; Animals; Mice; Aged; Schizophrenia; Chromosome Deletion; Developmental Disabilities; Neocortex; Intellectual Disability
PubMed: 37585521
DOI: 10.1126/sciadv.adh0558 -
Frontiers in Psychiatry 2023Despite the importance of health as a significant indicator of quality of life, individuals with intellectual and developmental disabilities (IDD) often face low...
The experiences of students with intellectual and developmental disabilities, parents, and teachers regarding health self-advocacy program with school-home connection: a qualitative study.
BACKGROUND
Despite the importance of health as a significant indicator of quality of life, individuals with intellectual and developmental disabilities (IDD) often face low expectations, stigma, and insufficient opportunities in health care and education. In response, we developed a health self-advocacy program with a school-home connection for students with IDD to promote self-directed health care and verified its effectiveness by implementing the program for students with IDD.
OBJECTIVE
This study aimed to explore participants' program experiences and support needs to reduce the stigma surrounding individuals with IDD and provide implications for enhancing health self-advocacy skills.
METHODS
Individual and focus group interviews were conducted with 14 students, six parents, and four teachers who participated in the program. The collected data were analyzed using the constant comparative method.
RESULTS
The following five main themes emerged: (a) the gap between perception and practice in health care; (b) advantages and influencing factors of the program; (c) challenges in program implementation; (d) outcomes of program implementation; and (e) support needs for promoting health self-advocacy.
CONCLUSION
Based on these findings, implications are provided and discussed to reduce the stigma surrounding individuals with IDD and enhance health self-advocacy.
PubMed: 37941966
DOI: 10.3389/fpsyt.2023.1273324 -
Child Abuse & Neglect Nov 2023Children with intellectual developmental disabilities (IDD) are at a heightened risk of experiencing child maltreatment (CM) when compared to their peers without IDD....
Children with intellectual developmental disabilities (IDD) are at a heightened risk of experiencing child maltreatment (CM) when compared to their peers without IDD. Despite expanding evidence supporting the efficacy of school-based CM prevention programs, there are limited programs that tailor their lessons to the unique needs of children with IDD. This discussion first presents information regarding the prevalence and risk factors of CM among children with IDD. We then present existing peer-reviewed CM programs that have been developed for children with IDD. Finally, based on the latest research of CM prevention and special education, we present our considerations for a comprehensive school-based CM prevention program for children with IDD. Prevention programs for children with IDD may increase risk awareness among children with IDD and their parents, equip children with IDD with the protective skills necessary to navigate unsafe situations, and decrease the overall incidence of CM against this population.
Topics: Humans; Child; Adolescent; Developmental Disabilities; Intellectual Disability; Parents; Schools; Peer Group
PubMed: 37591048
DOI: 10.1016/j.chiabu.2023.106397 -
Disability and Rehabilitation.... Oct 2023Unmet needs for assistive technology (AT) contribute to health and quality of life disparities among people with intellectual and developmental disabilities (IDD) [1-4]....
PURPOSE
Unmet needs for assistive technology (AT) contribute to health and quality of life disparities among people with intellectual and developmental disabilities (IDD) [1-4]. The biggest barrier people with IDD face accessing technology is affordability and a lack of funding [1,3-6]. The purpose of this study was to examine how AT were provided to people with IDD in Medicaid Home- and Community-Based Services (HCBS) in the United States, the largest funding source for Long-Term Services and Supports for people with IDD.
MATERIALS AND METHODS
We analysed Medicaid HCBS 1915(c) waivers for people with IDD from across the USA in fiscal year (FY) 2021 using content analysis and descriptive statistics.
RESULTS AND CONCLUSIONS
In FY2021, 31 states and the District of Columbia provided AT (stand-alone and combined services) through 68 waivers for people with IDD to improve functioning, communication, independence, and community integration. In total, $63.3 million was projected for the AT services for 23,753 people with IDD. Average spending per person on AT services was $2,663. We found significant variability in terms of how states allocated AT to people with IDD in their HCBS programs. Not only were less than 3% of people with IDD with HCBS projected to receive assistive technology services, there was also large variance across services and states. Assistive technology promotes the health, safety, quality of life, independence, and community integration of people with IDD - they align with the very aims of HCBS, and thus, should be expanded.
PubMed: 37862062
DOI: 10.1080/17483107.2023.2272849 -
Journal of Intellectual Disabilities :... Mar 2024Social participation has been linked to healthy aging, yet little is known about social participation during extended periods of time for adults with intellectual and...
Social participation has been linked to healthy aging, yet little is known about social participation during extended periods of time for adults with intellectual and developmental disabilities. The social participation of 777 adults with intellectual and developmental disabilities (aged 18-77 years), during a 4-year period, was examined. Sociodemographic, physical, and behavioral health-related correlates of engagement in social participation were investigated. Findings indicated that the majority of adults with intellectual and developmental disabilities engaged in at least a moderate level of social participation during the 4-years. Employment status, physical health, and Special Olympics participation were associated with a higher level of social participation. Findings have implications for supports and services seeking to promote social participation opportunities for adults with intellectual and developmental disabilities.
Topics: Adult; Child; Humans; Social Participation; Developmental Disabilities; Intellectual Disability
PubMed: 36173645
DOI: 10.1177/17446295221130556 -
Journal of Applied Research in... May 2024To build capacity among people with intellectual and developmental disabilities to become co-researchers they need the opportunity to learn about research.
BACKGROUND
To build capacity among people with intellectual and developmental disabilities to become co-researchers they need the opportunity to learn about research.
METHOD
An inclusive research team developed an online training to support people with intellectual and developmental disabilities to serve as co-researchers. Seven participants were recruited as pilot trainees. The co-researcher training consisted of two 1-h training sessions. Pre- and post-surveys and a focus group were conducted to examine participant experiences with the co-researcher training.
RESULTS
The participants were actively engaged during the co-researcher training sessions and shared they had a positive experience with it. They expressed that people with intellectual and developmental disabilities add value to the research team because of their lived experiences.
CONCLUSION
The co-researcher training can instill a baseline level of knowledge about research in people with intellectual and developmental disabilities, and can be adjusted for different types of research in different settings and organisations.
LAY SUMMARY
People with intellectual and developmental disabilities would like to learn more about research. They would also like to learn more about how to do research. People with intellectual and developmental disabilities who work on research are called co-researchers. Two researchers and a co-researcher with disability wrote together about research for people with intellectual and developmental disabilities. Seven people with intellectual and developmental disabilities took part in the class. They answered questions about how they liked the class. They also gave their opinion about research. They learned about what research is and how to do research. The class can be changed so that it can be used by other organizations.
Topics: Child; Humans; Intellectual Disability; Developmental Disabilities; Disabled Persons; Attitude; Focus Groups
PubMed: 38389315
DOI: 10.1111/jar.13200 -
Journal of the American Academy of... Jul 2024Neurodevelopmental disorders (NDDs) are a group of conditions characterized by impairments of brain processes that impact cognition, communication, motor abilities,...
Neurodevelopmental disorders (NDDs) are a group of conditions characterized by impairments of brain processes that impact cognition, communication, motor abilities, and/or behavior during development. These conditions typically have significant effects across the life span and impact personal, social, academic, or occupational functioning. The US Centers for Disease Control and report that 1 in 6 children has a developmental disability, making it highly likely for child and adolescent psychiatrists to encounter children with NDDs in daily practice. While the etiologies of NDDs are broad, genetic syndromes are a common cause of NDDs. The diagnostic yield of thorough genetic testing for NDDs as a group is about 40% based on meta-analysis, including 30% to 50% yield in patients with global developmental delay (GDD) or intellectual disability (ID) and 15% to 20% yield in patients with in autism spectrum disorder. The findings are extremely heterogeneous, including chromosomal copy number variants (CNVs) and more than 2,000 known monogenic disorders associated with NDDs. Diagnostic yields will increase over time with advances in technology and disease gene discovery..
Topics: Humans; Child; Adolescent; Child Psychiatry; Adolescent Psychiatry; Neurodevelopmental Disorders; Genetic Testing; Developmental Disabilities; Autism Spectrum Disorder; DNA Copy Number Variations
PubMed: 38325519
DOI: 10.1016/j.jaac.2023.09.555 -
Intellectual and Developmental... Oct 2023This study investigated Chinese special education teachers' perceptions and practices of individualizing instruction for students with intellectual and developmental...
This study investigated Chinese special education teachers' perceptions and practices of individualizing instruction for students with intellectual and developmental disabilities (IDD). Semistructured interviews were conducted with 31 teachers who taught elementary Chinese language arts and math in six public special education schools for students with IDD in Shanghai. In addition, lesson plans written by 19 of the 31 teachers were collected. Thematic analysis revealed that teachers recognized the necessity of adapting instruction. However, practices and beliefs associated with one-size-fits-all approaches to teaching were prevalent. Although all teachers described making efforts to address individual differences, these efforts appeared to be inadequate. Teachers perceived fully addressing the needs of individual students as difficult and described challenges in four areas.
Topics: Child; Humans; Developmental Disabilities; China; Intellectual Disability; Students; Schools
PubMed: 37770050
DOI: 10.1352/1934-9556-61.5.385 -
Cureus Jul 2023Objective Patients with intellectual and developmental disabilities (IDD) experience needle phobia at greater rates than individuals in the general population. Needle...
Objective Patients with intellectual and developmental disabilities (IDD) experience needle phobia at greater rates than individuals in the general population. Needle phobia deters patients with IDD from receiving routine medical procedures, which impacts their physical health outcomes. The aim of this quality improvement study was to assess the feasibility of a minimal sedation protocol in an outpatient care setting for patients with IDD and needle phobia. Methods The sample included 18 patients characterized as having a diagnosis of IDD only or IDD and needle phobia compared to patients with only a diagnosis of needle phobia. Reasons for referral to intervention included routine lab work, therapeutic drug monitoring, and routine vaccination. The minimal sedation intervention involved intranasal administration of a benzodiazepine (midazolam) by a registered nurse. Outcomes of interest were administration of the sedation and administration of medical orders. Results Nearly a third of patients were children (33.3%, n=6), and 39% of patients were female (n=7). Individuals with IDD (including those both with and without needle phobias) comprised 72.2% of patients (n=13). Half of intervention encounters were successful in both administering the sedation and performing the medical orders (n=9). Among individuals with IDD, 38.4% successfully completed the intervention (n=5). Conclusion This pilot study assessed the feasibility of implementing a minimal sedation protocol in primary care outpatient care settings. The preliminary results suggest that the minimal sedation protocol may improve the uptake of needle-related medical procedures for patients with IDD and/or needle phobia. The minimal sedation protocol should be studied in a larger sample and among multiple outpatient settings to establish effectiveness of the intervention.
PubMed: 37602094
DOI: 10.7759/cureus.42154