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Importance: The scope of early intervention (EI) programs, which mostly focus on motor skills, needs to be expanded., Objective: To examine the effects of an EI on developmental domains and parent-child interactions., Design: Randomized controlled study., Participants: Children ages 24-36 mo with developmental delay (DD; intervention group, n = 30; control group, n = 40)., Setting: Pediatric occupational therapy unit of Hacettepe University., Intervention: The intervention group received an intervention that used the Goal Activity and Motor Enrichment (GAME) approach and a home program, whereas the control group received a home program only. Both groups received the same intervention dosage., Outcomes and Measures: Developmental domains were assessed using the Bayley Scales of Infant and Toddler Development Third Edition (Bayley III) and the Ages and Stages Questionnaires (ASQ). Sensory processing was assessed with the Infant/Toddler Sensory Profile 2 (ITSP-2), social-emotional development with the ASQ:Social-Emotional (ASQ:SE), and parent-child interaction with the Parenting Interactions with Children: Checklist of Observations Linked to Outcomes (PICCOLO™). A compliance checklist was used to determine compliance with the home program., Results: A significant between-groups difference was found on all Bayley III and PICCOLO subscales and on the Gross Motor, Fine Motor, Problem-Solving, and Social-Emotional domains of the ASQ and ASQ:SE in favor of the intervention group (p < .05). The intervention group showed more typification (normal sensory processing) in sensory quadrants and general processing. Both groups were 100% compliant with the home program., Conclusions and Relevance: The GAME-based intervention for children with DD, including sensory and cognitive activities, is effective in improving developmental domains and parent-child interactions. Plain-Language Summary: The scope of early intervention programs mostly focuses on motor skills and needs to be expanded to include the essential roles of children's sensory and cognitive abilities. This study provides important insights into early interventions by occupational therapists and the impact on children with developmental delay and parent-child interactions. We found that the Goal Activity and Motor Enrichment (GAME) intervention for children with developmental delay, which includes sensory and cognitive activities, is effective in improving developmental domains and parent-child interactions., (Copyright © 2024 by the American Occupational Therapy Association, Inc.)

Background: Individuals (i.e. children/young adults) with developmental disabilities (DDs) and intellectual disabilities (IDs) often display a variety of physical and motor impairments. It is well known that participation in motor activities can positively impact the development of children's cognitive and social skills. Recently, virtual and digital technologies (e.g. video conferencing applications, virtual reality and video gaming) have been increasingly used to promote better physical/motor outcomes. The efficacy of digital technologies in improving motor outcomes for those with DD/ID varies depending on the technology and population, and the comparative effects of various technologies are unknown. The aim of our study is to conduct a systematic review to comprehensively examine the quantitative and qualitative results of current studies reporting the efficacy of digitally based motor interventions on motor outcomes in individuals with DD/ID., Methods: Literature published from 1900 to 2024 was searched in four health sciences databases: PubMed, PsycINFO, Scopus and CINAHL. Articles that examined the effects of gross motor/physical activity training using technologies such as exergaming (i.e. exercise through video gaming such as the Wii and Xbox Kinect), virtual reality or telehealth video conferencing applications (i.e. Zoom, Webex or mobile health apps) on the standardised or game-specific gross motor performance of individuals with DD/ID diagnoses that do not typically experience significant walking challenges using experimental or quasi-experimental study designs were included. Thirty relevant articles were retrieved from a search of the databases PubMed (914), PsycINFO (1201), Scopus (1910) and CINAHL (948)., Results: Our quantitative synthesis of this published literature suggests strong and consistent evidence of small-to-large improvements in motor skill performance following digital movement interventions., Conclusions: Our review supports the use of digital motor interventions to support motor skill performance in individuals with DD without ID. Digital technologies can provide a more engaging option for therapists to promote motor skill development in individuals with DD or for caregivers to use as an adjunct to skilled therapy., (© 2024 John Wiley & Sons and MENCAP.)

Objective: To evaluate the change in the neurodevelopmental status of children (1-30-months-old) with severe acute malnutrition (SAM) following nutritional rehabilitation., Methods: A prospective study was conducted in the Severe Malnutrition Therapeutic Unit (SMTU) of a tertiary hospital in Central India, between April 2021 and October 2022. Children with primary neurological conditions like cerebral palsy and epilepsy were excluded. Neurodevelopment was assessed using the Developmental Assessment Scale of Indian Infants (DASII) at admission and following nutritional rehabilitation as per the National Health Mission (NHM) guidelines at the time of discharge, 2 months and 4 months follow-up. Developmental quotient (DQ) ≤ 70 was considered delayed., Results: 114 children with SAM were included; 4 were lost to follow-up. There was an increase in Motor Developmental Quotient (MoDQ) and Mental Developmental Quotient (MeDQ) at discharge, 2 months, and 4 months. The improvement in MoDQ and MeDQ was greater in children with adequate weight gain. Poor weight gain, higher age of presentation and lower MeDQ and MoDQ at admission were associated with persistent developmental delay at 4 months follow-up., Conclusion: There was a consistent improvement in DQ with improvement in nutritional status.

Background: The role of, and impact on, mothers caring for children with neuro-developmental delay (NDD) is well documented. However, the role of fathers and siblings in families of children with NDD remains significantly understudied, particularly in low- and middle-income countries (LMICs). There has been an increased call for holistic rehabilitation of children with NDD at the family level. This study aimed to explore the involvement of fathers and siblings in the home rehabilitation programmes of children with NDD., Methods: A scoping review was conducted using the Joanna Briggs Institute (JBI) Peters et al.'s methodology and reported according to Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines. Articles were retrieved from PUBMED, ScienceDirect, PsycINFO, SCOPUS, PEDro, and Google Scholar. Reference lists of relevant studies were also manually searched., Results: Thirty research articles were identified. Father and sibling participation in home-based rehabilitation and caregiving is low in LMICs compared to high-income countries due to economic factors and cultural beliefs. Reduced participation stresses mothers and reduces developmental outcomes in children with NDD., Conclusions: This review highlights the need for rehabilitation professionals to encourage father and sibling participation in caregiving for children with NDD in home rehabilitation programmes., (© 2024. The Author(s).)

Pica is a life-threatening behavior that is relatively common among individuals with intellectual and developmental disabilities. Pica can be conceptualized as a response chain in which the pica item acts as a discriminative stimulus for the next response (i.e. picking up the pica item), which itself acts as a discriminative stimulus for the final response (i.e. consumption). Interventions that disrupt this response chain and alter the discriminative properties of the pica stimulus may be clinically indicated. Preliminary research supports response-interruption and redirection (RIRD) with differential reinforcement of alternative behavior (DRA) as an effective intervention for pica. We evaluated this procedure in an inpatient unit with a young boy with who engaged in pica. Our outcomes provide additional support for DRA with RIRD as an effective pica treatment.

Background: Attitudes toward childhood disability have historically focused on biomedical efforts on 'fixing'. The introduction of WHO's ICF framework for health and Canadian researchers' 'F-words' (functioning, fitness, fun, friends, family and future) have significantly changed the field. To explore whether the F-words ideas influenced parents' perspectives on their child's abilities and rehabilitation goals, this qualitative pilot study introduced the F-words to Iranian parents with a child with a developmental disability., Methods: This study was conducted in Tabriz, Iran, in 2023, using Iranian educational F-words materials built on ideas available on the CanChild F-words Knowledge Hub. Data were collected through semistructured interviews with five mothers of children <5 years old with a developmental disability before and after attending an 'F-words Awareness Session' and analysed using thematic analysis., Results: In the preinterviews, six themes (and 20 subthemes) were identified: (i) routines (5); (ii) challenges (4); (iii) parental concerns (3); (iv) child's needs and priorities (3); (v) the role of parents in satisfying needs and challenges (2); and (vi) expectations of rehabilitation (3). In the postinterview, the same six themes and four additional subthemes emerged., Conclusion: Findings from the pilot study showed that the intervention had an impact on the attitudes and behaviours of participants. Specifically, teaching about the F-words reduced parents' emphasis on the concept of 'normality'. Families' positive response to the 'F-words Awareness Session' indicates their openness to incorporating this approach into their daily lives. These findings highlight the potential benefits of utilizing the F-words in rehabilitation in Iran. Studies like these can serve as a foundation for developing effective strategies for integrating the F-words into existing rehabilitation practices in Iran., (© 2024 John Wiley & Sons Ltd.)

Introduction: Promoting physical wellness for preschool-aged children with developmental disorders (DD) is a known challenge. Interventions are more likely to succeed when physical activity opportunities are available to children within the context of their typical environments. We evaluated the feasibility and preliminary effect of 1 potential solution: structured creative dance classes delivered within a preschool environment., Methods: Using a non-randomized feasibility study design, we offered physical activity in the form of creative dance classes for children with and without DD within an inclusive preschool. Classes lasted 30 minutes and were held once a week or 7 weeks. We measured attendance (primary), observed active participation (% of class duration), and balance (Pediatric Balance Scale). Non-parametric descriptive statistics are expressed as median (interquartile range). Balance was evaluated regarding (a) difference between groups at baseline (Mann-Whitney statistic) and (b) intervention effect for children with DD (1-tailed, paired t-test)., Results: Twelve preschoolers (age range = 3-5 years) participated: 4 with DD and 8 with neurotypical development. Attendance was 93% (79%-100%) for children with and 100% for children without DD. Per class, rate of active participation in dance activity was 33% (28%-45%) for children with and 80% (71%-82%) for children without DD. Starting balance scores were lower ( P  = .014) for children with DD (42 (39-45)) compared to those without (51 (50-52)). Post-intervention, balance scores improved for the children with DD to 50 (50-51) (df = 3, p = .014, t -statistic = 2.35); each child with DD surpassed minimal detectable change for balance., Conclusion: Creative dance classes, delivered within an inclusive preschool environment, are feasible for some preschool-aged children with DD to participate in and efficacious as a physical training challenge at low activity doses. More study is warranted of this potential solution to meet the need for physical wellness promotion among young children with DD., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Tailored sexuality education for adolescents with intellectual and developmental disabilities is a crucial, yet unmet, need as this population is particularly at risk for sexual abuse and victimisation. However, there are no evidence-based interventions to specifically address this need. This paper presents the development of an intervention framework to address equity in sexuality education and support adolescents with intellectual and developmental disabilities to understand and provide sexual consent, a foundational aspect of sexuality education and sexual health., Methods: The Sexual Health Equity Project team used a Community-Based Participatory Research approach to develop a four-module sexual consent intervention for adolescents with intellectual and developmental disabilities. We leveraged a diverse, interdisciplinary team in a suburban Midwestern school district, and used Backward Design to create objectives and assessments which were rooted in findings from qualitative data by special education teachers., Results: The resulting sexual consent intervention, Ask Me First-Choices, is comprised of four modules covering topics including definition of sexual consent; decision-making strategies and practice; communicating consent and refusal, identifying situations of consent and non-consent; and legal issues surrounding consent. Each module is divided into five components for content delivery: (1) introduction, (2) lecture, (3) supplemental activity, (4) assessment, and (5) conclusion. We detail the intervention's unique aspects, emphasising areas where we used Universal Design for Learning principles to support teachers' instruction and students' learning., Conclusion: Our efforts to create a sexual consent intervention directly address sexuality education equity issues. We offer commentary on our design process and decisions, as well as recommendations for future groups who want to develop sexual health interventions in similar contexts for students with intellectual and developmental disabilities. Next steps include further testing and validation of the sexual consent intervention to build the evidence-base of sexuality education for adolescents with intellectual and developmental disabilities., (© 2024 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Assistive technology (AT) has been successfully used by researchers and practitioners to increase task completion and independence in work and home environments for individuals with intellectual and developmental disabilities. While prior research has shown increased outcomes of incorporating AT into daily tasks, research has also indicated that actual use of AT in these settings is much lower., Method: The current qualitative study used semi-structured interviews with a sample of 25 adults (22 individuals with intellectual and developmental disabilities and three job coaches) to examine the perceived use and implementation of AT into home and work environments, along with potential challenges and barriers. Interviews were analyzed using a thematic analysis approach., Results: Three themes were identified: (1) technologies used to support daily living skills, (2) technologies used to support employment and (3) challenges and barriers to using technologies., Conclusions: Findings indicate that while individuals with intellectual and developmental disabilities are using a variety of AT in their homes both successfully and independently, they have extremely limited use in their workplaces. Implications for practice and future research are discussed., (© 2024 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Youth with intellectual and developmental disabilities (IDD) aspire to participate in a variety of activities after high school, such as attaining paid employment, enrolling in postsecondary education, being involved in their communities, living independently, and building friendships. However, complex and longstanding transition barriers require comprehensive solutions that are tailored to a local community's unique needs and available resources so that local youth with IDD may achieve their desired outcomes. This article presents "virtual community conversations" as a promising approach for bringing together local communities to tackle barriers to good outcomes for residents with IDD. Attendees were able to effectively generate innovative recommendations for addressing issues in their local communities. We offer recommendations for enhancing and extending implementation of this approach., (©AAIDD.)

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.

Purpose: The purpose of this study was to compare mobile technology devices (i.e., Tablets) with built-in decision prompts and branching to improve the independent vocational performance of four secondary students with autism spectrum disorder (ASD) and/or intellectual and developmental disability (IDD)., Materials and Methods: An adapted alternating treatments design was used to compare the effectiveness of the prompting system presented on Apple iPads and Microsoft Windows-based tablets. The prompting system contained audio, video, and picture prompts. Further, we investigated the effectiveness of improving problem-solving through decision-making prompts and branching. Participants used the devices to make decisions on how to properly prepare a teacher's lounge including filling salt and pepper shakers, cleaning tables, and filling silverware containers., Results: Results indicated that both devices produced immediate and significant increases in independent responding for all participants. All participants also self-faded prompt dependence throughout the duration of the intervention as vocational skill acquisition increased., Conclusion: Teachers and students have enhanced access to powerful devices capable of providing individual support for vocational skills. This study indicates that a multimedia prompting system with multiple prompt mediums can improve independent completion of targeted vocational skills while decreasing the reliance on technological support.

This study aimed to improve hand performance and play behavior in children with developmental disabilities (DD) using a remodeled glove puppetry approach. Overall, 62 children with DD were randomly assigned to experimental and control groups ( n  = 31 each). The experimental group underwent a 12-week rehabilitation program by playing with the remodeled glove puppetry, while the children in the control group played with non-remodeled glove puppetry. The Chinese puppet was remodeled using a Lego EV3® robot. Hand kinematics were analyzed through the Siliconcoach® Pro 7 software, which measured the force produced by the baseline ® hydraulic pinch gauge. Play behavior was measured using the Knox Preschool Play Scale-revised (KPPS-r). The experimental group exhibited significant improvements compared to the control group in hand kinematics (wrist range of motion [ROM], p  < .05; metacarpophalangeal ROM, p  < .05; proximal interphalangeal ROM, p  < .05) and KPPS-r scores (space management, p  < .05; material management, p  < .05; pretense-symbolic, p  < .05; participation, p  < .05). After the 12-week rehabilitation with the remodeled glove puppetry, the experimental group exhibited significant improvement in kinematics and KPPS-r scores.

This article describes the evolution of the quality of life concept through the lens of six distinct eras. Each era reflects a shared process in which multiple stakeholders, including persons with intellectual and developmental disabilities and researchers, have played a significant role. Across these six eras, research on quality of life has evolved from operationalizing a concept to developing a theory. As described in the article, the first three eras resulted in formulating conceptualization, measurement, and application principles; developing quality of life conceptual and operational models; and constructing reliable and valid instruments to assess quality of life domains or domain-referenced indicators. The application era has focused on applying the concept of quality of life and its measurement, supports provision, conceptualization and theory, and systemic change. The final two eras have involved theory development and theory confirmation., Competing Interests: Declarations of interest None., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Background: A disability service organization piloted a parent capacity-building intervention for parents of children with developmental disabilities in rural South India., Aims: To examine the impact of this parent capacity-building group intervention on parent empowerment, peer support, social inclusion, advocacy skills, and the factors influencing these outcomes., Methods and Procedures: A qualitative study recruited 37 participants from 17 parent groups through convenience sampling. Six focus groups occurred six months post the start of this intervention and explored these parents' experiences with the groups and their perceived impacts., Outcomes and Results: Qualitative analysis yielded four main themes and corresponding sub-themes: peer support (feeling peaceful and supported, building self-efficacy), social inclusion (space to share, acceptance and identity), knowledge sharing (increasing awareness, accepting advice), and advocacy (building confidence, making requests). Participation in parent groups provided participants with opportunities to find peer support, utilize knowledge sharing, feel socially included, and build advocacy skills., Conclusions and Implications: This study provides a greater understanding of the impact and benefits of parent capacity-building interventions in low-resource settings. Results will improve this intervention and guide other organizations in creating similar programs., What This Paper Adds: This paper adds perspectives of parents who are caregivers of children with developmental disabilities in rural South India. More specifically, this paper highlights the impact of a parent-focused intervention in group settings in both rural and urban areas. Parent support group interventions are not common in India and low- and middle-income countries and there is a paucity of literature describing these interventions and their impact. In this study, parents described a need for multifaceted interventions to support their child in the community. These parent groups provided space for caregivers of children with developmental disabilities to make connections, feel validated, and grow confidence to utilize new knowledge or advice shared by other parents to further enhance their lives. Further, parent-group settings provide opportunities to build advocacy skills through timely discussions. Parents reported an increase in feelings of acceptance within the group itself but not within the wider community. This highlights the need for involving the wider community in interventions to promote integration for families with children with disabilities., Competing Interests: Declaration of Competing Interest The authors of this paper have no conflicts of interest to declare. Navamani Venkatachalapathy is employed by Amar Seva Sangam. Dinesh Krishna and Marie Brien are consultants for Amar Seva Sangam. These relationships do not pose a conflict of interest as the study and results of the study do not impact any financial or other benefits for the authors., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Background: Providing menstrual education and guidance for menstrual management for girls and young women with intellectual disabilities is recommended to ensure smooth pubertal transitions and to support menstrual self-agency., Method: The purpose of this systematic review is to explore menstrual education interventions for girls and young women with intellectual disabilities., Results: Nine studies were included. Interventions were provided in small groups (n = 4) and individually (n = 5). Most studies used dolls (n = 7) and task analysis (n = 7) to teach pad-replacement skills. All reported significant improvements in participant skills and/or knowledge following the intervention. Only one study addressed self-agency and self-esteem as an outcome of the intervention. Menstrual education for girls and young women with intellectual disabilities is largely focused on pad-replacement skills., Conclusion: Further research is needed to understand the impact of menstrual health and hygiene education on variables apart from skill improvement such as self-agency and long-term health outcomes related to menstrual health., (© 2024 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Extinction bursts, or temporary increases in rates and intensities of behavior during extinction, can preclude the inclusion of extinction in intervention packages meant to suppress severe challenging behavior. To identify underlying behavioral mechanisms responsible for response persistence and bursting, 69 adults with developmental disabilities completed a low-stakes translational investigation employing a 2 × 2 factorial, crossed, and randomized matched blocks design, with batched randomization logic. In each of the four test groups, we made distinct antecedent manipulations with two value parameters commonly studied through behavioral economics (i.e., demand intensity, P max ) and evaluated the extent to which each of these manipulations influenced target responding during extinction. Although we found statistically significant differences attributable to both parameters, variations in reinforcer consumption relative to demand intensity were most influential across all dependent variables. This outcome implicates consumption relative to demand intensity as both a mitigating and exacerbating preextinction factor that influences the prevalence of adverse collateral extinction effects (e.g., bursts)., (© 2024 The Author(s). Journal of Applied Behavior Analysis published by Wiley Periodicals LLC on behalf of Society for the Experimental Analysis of Behavior (SEAB).)

Importance: Play is the primary occupation in childhood and fundamental to occupational therapy practice., Objective: To evaluate a play intervention in special school settings., Design: Pre- and postinvolvement of a 7-mo play program., Setting: Four special schools in Victoria, Australia, for children with IQs < 70., Participants: Thirty-eight children with diagnoses including intellectual disability, autism, and global developmental delay, 7 teachers, 2 speech pathologists, and 2 occupational therapists., Intervention: Learn to Play Therapy for 1 hr per week over a 7-mo period., Outcomes and Measures: Pre-post outcome measures included children's pretend play skills, language, social skills, emotional regulation, and academic competence., Results: Mean age of 38 children (15 girls and 23 boys) at baseline was 5 yr 7 mo (SD = 0.46 yr). Results showed significant changes in children's pretend play (p = .03), ability to recall sentences (p = .02), social skills (p = .022), and academic competence (p = .012). Learn to Play had a large effect on children's narrative skills (d = 2.72). At follow-up, object substitution at baseline influenced expressive language (p < .001), narrative mean language utterance (MLU; p = .015), social skills (p < .001), and academic competence (p < .001); elaborate play at baseline plus time influenced social skills (p < .001); and elaborate play at baseline influenced narrative MLU (p =. 016), sentence recall (p = .009), and academic competence (p = .001)., Conclusions and Relevance: Embedding pretend play within practice positively influenced children's language, narrative, social, and academic skills. Plain-Language Summary: This study adds to the limited research on play-based therapy programs in special school settings for children with an IQ of less than 70. Children participated in Learn to Play Therapy, during which an occupational therapist, who has observed and assessed the child's play and understands the child's play abilities, played beside the child. Learn to Play Therapy is a child-centered therapy that is used to increase a child's ability to self-initiate and enjoy pretend play. The positive impacts of supporting the children's pretend play ability were highlighted by increases in their pretend play, language, social skills, academic competence, and narrative language after participating in Learn to Play Therapy in their special schools., (Copyright © 2024 by the American Occupational Therapy Association, Inc.)

Aims: To analyze needs and requirements of Pediatric Physical Therapists (PPTs), parents, children and adolescents with and without developmental disabilities in the future use of an activity monitor prototype (AM-p) in everyday clinical practice., Methods: Qualitative exploratory study with a thematic analysis approach, based on Braun and Clarke's six steps. Codes derived from the analysis and central themes were collated, based on Fleuren et al.'s groupings of determinants., Results: We interviewed 25 PPTs, 12 parents, and 12 children and adolescents. Within four groupings of determinants, we found nine themes: 1) development of information materials; 2) application: output visualization and ease of use; 3) design; 4) relevance and acceptance; 5) shared decision-making; 6) compatibility in daily living; 7) finances, 8) time, and 9) legislation and regulations., Conclusions: End-users have similar basic needs, with individual fine-tuning to be addressed during further development of the AM-p. A child-friendly design, information material, and an easy-to-use application to read and interpret results, need to be developed. Efficient training for PPTs is important for the use of the AM-p and analysis of results. Communication between PPTs and children as well as parents enhances shared decision-making. We recommend involving diverse end-users to enable maximum customization of the AM-p., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Engels et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Meaningful progress in improving employment outcomes for people with intellectual and developmental disabilities continues to be elusive, despite 40 years of investment in research, policy, and supports. This article reviews the current state of employment for individuals with intellectual and developmental disabilities (IDD) and describes policy, practice, and individual factors that influence employment outcomes. Research suggests the need for a holistic approach to change that addresses systems-level strategy, policy, and fiscal investment while strengthening individual experiences with employment and related day services. Recommendations address strengthening the implementation of employment policy, developing pathways to employment, and engaging individuals with IDD and, in particular, individuals with diverse social characteristics in reflecting on the quality of their experiences and supports., (©AAIDD.)

The Picture Exchange Communication System (PECS) is a popular augmentative and alternative communication intervention for individuals with developmental disabilities that includes six, sequential phases of instruction. We systematically reviewed published and unpublished single-case PECS studies for details about the percentage of participants mastering PECS phases, how long it took participants to master PECS phases (in trials to mastery), and what constituted mastery of PECS phases. We found most participants mastered only the first two phases of PECS, and Phases I, II, and IV showed the slowest and widest variability in trials to mastery. Moreover, participants who were taught the third PECS phase learned to select from an average array of three symbols, which may limit the range of messages they can communicate. We discuss our findings in light of a few important limitations and provide directions for future researchers along with recommendations for professionals who might consider PECS.

Leisure participation enhances the learning of adaptive skills and the quality of life in youth with developmental disabilities. The goal of this study was to evaluate the effects of a leisure education program in individuals with developmental disabilities in terms of adaptive behavior and quality of life. Nine participants divided into two small groups and their families were included. A quasi-experimental design was employed to determine whether there was a program effect. The Adaptive Behavior Assessment System, the KIDSCREEN-27, and the Family Quality of Life Scale were administered before and after the intervention. There was a significant increase in social, home, and school skills as well as a better perception of quality of life in relationships with parents, social support, and school. In addition, the program affected the family's perception of practical and emotional support. Findings provide support for the application of this leisure program to enhance quality of life outcomes., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

This study examined the effects of a combined virtual-reality- and gym-based physical activity (PA) program on PA levels, motor skills, and social skills of children with a developmental disability (DD). Twenty-five children with DD were randomly assigned to experimental and control groups. The intervention was conducted for 60 min, two times a week, for 12 weeks. Pre- and postintervention assessments encompassing PA levels measured via Gravity Estimator of Normal Everyday Activity, motor skills evaluated using the Test of Gross Motor Development-Third Edition, and social skills gauged via the Social Skills Rating System-Parent were conducted. Additionally, a follow-up assessment was administered to the experimental group 12 weeks postintervention. The findings unequivocally demonstrate that the combined virtual-reality- and gym-based PA program yielded significant enhancements in PA levels, motor skills, and social skills among children with DD in the experimental group. Notably, these improvements were sustained 12 weeks after the intervention. These findings may help professionals develop and implement better PA programs for children with DD.

Importance: Environmental modifications are targets for occupational therapy intervention because they support activities of daily living, self-efficacy, personal control, independence, and community living for people with intellectual and developmental disabilities (IDDs)., Objective: To examine how environmental modifications were provided to people with IDDs through Medicaid home- and community-based services (HCBS) waivers across the United States in fiscal year (FY) 2021., Design: Using a mixed-methods policy analysis, we examined FY 2021 Medicaid HCBS 1915(c) waivers from across the United States to examine whether, and how, states provided environmental modifications to people with IDDs., Results: In FY 2021, 35 states projected spending $68.8 million on environmental modifications for 12,671 people with IDDs. The purpose of environmental modifications was most often to promote the health, welfare, and safety of people with IDDs (82.68%), and to promote their independence (69.29%). The most common examples of environmental modifications included ramps and/or lifts (70.08%), widening doorways and/or hallways (61.42%), bathroom modifications (58.27%), specialized electrical and/or plumbing for medical equipment (54.33%), and grab bars and/or handrails (53.54%)., Conclusions and Relevance: HCBS waiver data on environmental modifications for people with IDDs enhances an understanding of this funding source and provides a foundation of advocacy for occupational therapy practitioners to support people with IDDs with living, as well as aging, in the community rather than in institutions. An expansion of environmental modifications in HCBS for people with IDDs aligns with the aim of Medicaid HCBS waivers to promote community integration, self-determination, and independence, which are all benefits of environmental modifications. Plain-Language Summary: This study can help occupational therapy practitioners determine what funding sources are available in their state to help their clients with intellectual and developmental disabilities access environmental modifications. The findings can also help guide advocacy and lobbying efforts to expand access to environmental modifications., (Copyright © 2024 by the American Occupational Therapy Association, Inc.)

This study examines the effectiveness of combining simultaneous prompting method with small group teaching through computer projection, SMART board, tablet computer and humanoid robot to teach discrete skills to children with developmental disabilities (CDD). The study included 14 CDD aged 10-15. It utilizes a multiple probe design across behaviors and probe conditions and replicates them across subjects. Each participant is taught discrete skills within a small group teaching arrangement. The study includes daily probes, full probes, teaching sessions, generalization, and follow-up sessions. It also collects interobserver reliability and application reliability data. Graphical analysis demonstrates the effectiveness of computer-based simultaneous prompting incorporating different technologies in a small group teaching setting. Additionally, we examined differences in children's responses to different technological agents in teaching discrete skills to children with developmental disabilities. The study provided preliminary data on which of these agents is best. The results demonstrate its effectiveness by showing that participants maintained the learned behaviors and applied them to a variety of tools, equipment, and individuals in the first, third, and fourth weeks after the intervention. Additionally, the study highlights the subjects' high accuracy in acquiring behavior through observational learning. Finally, simple humanoid robots, tablets, smart SMART boards, and computer projections have been effective in teaching discrete skills to CDD, respectively., (© 2024 International Society for Developmental Neuroscience.)

Aim: Prior studies on Japanese parents raising children with developmental disorders have predominantly emphasized negative psychological aspects like parenting conflicts and challenges. Purpose of this study was to construct a conceptual model to aid mothers in parenting children with developmental disorders by identifying effective parenting strategies., Methods: In this qualitative study, participants were mothers who engaged in a home program through individual outpatient occupational therapy. Therapy sessions occurred biweekly, totaling 12 sessions, each lasting 40 min. Data collection involved semi-structured interviews, and the data were analyzed through the Modified Grounded Theory Approach., Results: Analysis of mothers' narratives revealed heightened physical burden, psychological distress, severe stress, and social isolation. Our findings highlight those mothers who engaged in the home program navigated the intricate parenting landscape through problem-solving, including managing negative emotions, their demanding schedules, and societal norms., Conclusion: This study offers insights into the perceptions, experiences, and behaviors of families in supporting the development of parenting strategies within the family. Occupational therapy should prioritize evaluating a mother's parenting context and her interactions with her environment. Furthermore, it is crucial to provide support for her to independently formulate suitable parenting strategies that resonate with the specific circumstances of her family.

This article summarizes data collected from key informants in Iowa, Maryland, and Oklahoma regarding efforts to support integrated employment for people with intellectual and developmental disabilities (IDD). We highlight features that contribute to the effectiveness of collaborative structures that have resulted in each state's success in achieving integrated employment outcomes for individuals with IDD across three state systems: IDD, vocational rehabilitation, and education. We present these features using the seven elements of the High-Performing States Employment Model. These elements have been found to be important in achieving higher rates of competitive integrated employment outcomes for people with IDD., (©AAIDD.)

Healthcare professionals, including practitioners of medical genetics and genetic counseling, have much to learn about the experiences of parents who are raising and caring for a child with a rare disease or developmental disability. Knowledge and understanding of the challenges in the care of a child with conditions such as Down syndrome and Wolf-Hirschhorn syndrome are at the core of the practice of genetic medicine. Insights into this experience can come from active listening to stories and from deep reading of memoirs and narratives authored by parents of children having these challenges. A recent book, Raising a rare girl: A memoir, by writer, poet, and teacher, Heather Lanier, represents a relevant and prototypic example of this genre. Spending the effort in the contemplation of the parental stories provides a valuable lesson in narrative medicine and the experience of empathy for the plight of the family., (© 2021 Wiley Periodicals LLC.)

The scientific investigation of developmental neurorehabilitation has been negatively impacted by a lack of outcome measures sensitive to interventional effect, and is currently in need of assessment measures that can be used during social distancing protocols. Here we report on the usability and feasibility from a pilot test of a novel assessment methodology. This preliminary data demonstrate the usability and feasibility of this assessment system, suggests that it is sensitive to change, and supports the further development and testing of this assessment. The assessment methodology, here presented, generates a percent change score based on the metric measurement of individualized goals before and after intervention, thereby facilitating comparisons between groups and across goals. Moreover, it can be conducted remotely and introduces the novel element of goal appropriacy assessment such that goal selection, as well as goal attainment, are assessed via metric measurement.

During the COVID-19 pandemic, the Oasi Research Institute of Troina (Italy) became an important hotbed for infection; in fact, 109 patients with different levels of Intellectual Disability (ID) tested positive for COVID-19. The procedures and interventions put in place at the Oasi Research Institute due to the COVID-19 pandemic are exhaustively reported in this paper. The description of the clinical procedures as well as remote/in person psychological support services provided to people with ID and their families are here divided into three different sections: Phase I (or Acute phase), Phase II (or Activity planning), and Phase III (or Activity consolidation). In each section, the main psycho-pathological characteristics of patients, the reactions of family members and the multidisciplinary interventions put in place are also described., (Copyright © 2021 Elsevier Ltd. All rights reserved.)

Purpose: To evaluate validity, reliability, and sensitivity of the novel Means-End Problem-Solving Assessment Tool (MEPSAT)., Methods: Children with typical development and those with motor delay were assessed throughout the first 2 years of life using the MEPSAT. MEPSAT scores were validated against the cognitive and motor subscales of the Bayley Scales of Development. Intra- and interrater reliability, developmental trends, and differences among groups were evaluated., Results: Changes in MEPSAT scores positively related to changes in Bayley scores across time for both groups of children. Strong intra- and interrater reliability was observed for MEPSAT scoring across all children. The MEPSAT was sensitive to identify change across time and differences in problem-solving among children with varying levels of motor delay., Conclusions: The MEPSAT is supported by validity and reliability evidence and is a simple tool for screening early problem-solving delays and evaluating change across time in children with a range of developmental abilities. What this adds to the evidence: The novel MEPSAT is supported by validity and reliability evidence. It is sensitive to detect problem-solving differences among young children with varying motor ability and to capture changes in problem-solving across time. It requires minimal equipment and time to administer and score and, thus, is a promising tool for clinicians to screen for early problem-solving delays or to track intervention progress in young children with or at risk for problem-solving delays., Competing Interests: The authors declare no conflicts of interest., (Copyright © 2021 Academy of Pediatric Physical Therapy of the American Physical Therapy Association.)

This study reports on state-level data in Rhode Island on employment and non-work activities of adults with intellectual and developmental disabilities receiving services between 2011 and 2017. The goal was to examine the complex patterns of change over time in individual-level employment outcomes and the potential short-term impacts of a consent decree entered into by the state of Rhode Island to address integrated employment outcomes. Findings suggest that policy initiatives such as the consent decree can lead to reductions in reliance on facility-based work, but also highlight the importance of planning for the transition to competitive, integrated employment and not simply a shift toward non-work activities. Further, the data support the notion that the best predictor of integrated employment over time is previous experiences in integrated employment (not facility-based or other work or non-work activities), suggesting the role of ongoing supported employment and transition services that create and support the maintenance of integrated employment., (©AAIDD.)

This qualitative study develops a programme theory demonstrating the complexity embedded in sleep hygiene education (SHE) as an intervention to improve sleep problems in children with developmental disabilities. In co-design workshops, eight parents and six sleep practitioners deliberated themes developed from findings of an earlier exploratory study of stakeholder perceptions of SHE. A SHE tool underpinned by programme theory was developed evidenced by mid-range theories of change. Analytical themes were developed to explain the programme theory and the complexities of a successful SHE intervention: the need to legitimize children's sleep problems and consider the nature of customization, knowledge sharing, health expectation and impact of sleep service rationing and gaming strategies on implementation success. Policy and practice implications include a need to raise the public profile of children's sleep problems and promote parental involvement in intervention implementation. Further research is needed to test out this theory-driven framework for evaluating SHE.

Background: While COVID-19 outbreak has had adverse psychological effects in children with special needs, the mental state and burden on their caregivers during this pandemic has yet to be reported., Aims: The objectives of this study were to describe the mental health status and the change in perceived strain among caregivers during the COVID-19 outbreak., Methods and Procedures: Two hundred sixty four caregivers completed an online survey that assessed demographics, use and perspective on tele-rehabilitation, homecare therapy, caregiver's strain and mental health., Outcomes and Results: The prevalence of depression, anxiety and stress symptoms were found to be 62.5 %, 20.5 % and 36.4 % respectively. A significant difference in caregiver strain (p <  0.001, effect size = 0.93) was observed during the outbreak compared to levels pre-outbreak (pre-outbreak strain was measured retrospectively). Caregivers not using tele-rehabilitation along with a perception of it being a poor medium for rehabilitation were at greater risks for poor mental health whereas a negative perception on homecare therapy were strongly associated with higher psychological symptoms and strain., Conclusions and Implications: This study identified a high prevalence of depression and significant change in strain displayed by caregivers during the COVID-19 outbreak. We identified several factors associated with poor mental health and perceived strain that can be used to help safeguard caregivers., (Copyright © 2020 Elsevier Ltd. All rights reserved.)

Activities of daily living (ADL) are key to daily living and adjustment. A number of ADL scales have been developed and validated to examine functional performance in the pediatric population; however, most of these scales are limited to specific groups. The purpose of this research was to test the plausibility of developing and validating a hierarchical versus additive ADL summary scale for children and youth using the interRAI Child Youth Mental Health (ChYMH) assessment system. Data from 8980 typically developing children (mean age 12.02 years) and 655 children with developmental disabilities (mean age 11.9 years) was used to develop ADL summary scales. Patterns among the data were analyzed and, unlike with adult populations, a hierarchical scale did not capture ADL performance and mastery. Two new ADL additive summary scales for children and youth were developed to measure ADL skills within this group.

The COVID-19 epidemic caused disruption and dislocation in the lives of people with disabilities, their families, and providers. What we have learned during this period regarding the strengths and weaknesses of the service system for people with disabilities should provide a roadmap for building a more robust and agile system going forward. Based on a canvas of leaders in our field, I propose a way of outlining a reimagined system., (©AAIDD.)

The purpose of this study was to test a modified conceptual model of the associations between parental supports and physical activity (PA) orientations and the PA behaviors of young children with developmental disabilities (DDs). In total, 135 parents of young children with DDs completed a questionnaire, which consisted of 67 questions. A pathway analysis indicated that tangible and intangible parental supports were significantly associated with PA behaviors in young children with DDs (β = 0.26, p = .01, and β = 0.24, p = .02, respectively). Tangible parental support was positively associated with parents' PA behaviors and PA enjoyment (β = 0.22, p < .001, and β = 0.13, p = .04, respectively). Intangible parental support was positively associated with parents' PA behaviors and PA importance (β = 0.19, p = .05, and β = 0.33, p < .001, respectively). In addition, parental PA behaviors and parents' perceptions of their children's motor performance were both directly associated with PA behaviors in young children with DDs. These results highlight the importance of parental support and PA orientations in relation to the PA behaviors of young children with DDs.

The policy decisions of state, district and school educators affect the extent to which students have access to high-quality practices. This is especially relevant for students with disabilities and their families. This article summarizes a presentation made at the 2019 AAIDD conference and proposes an operational role for policy makers. Two frequently cited advances in education are (a) the commitment to adopt "evidence-based practices," and (b) the impact of information technology and data systems on the active "use of data for decision making" in schools. This article reviews the integrative role that policy decisions make in transforming effective practices and good data systems into practical outcomes for children and families., (©AAIDD.)

Interventions that promote parent and child well-being in families with children with intellectual and developmental disabilities (IDD) are important, given the caregiving burden often associated with supporting children with developmental and behavioral challenges. This article summarizes a presentation made at the 2019 AAIDD annual conference and reviews evidence-based interventions that promote parenting skills, enhance caregiver well-being, and reduce child challenging behavior. The article reviews the role that behavioral and mindfulness-based interventions play in enhancing family well-being. A discussion of research gaps and future directions is included, especially as they relate to the role of technology in scaling up interventions and making them accessible to a broader audience., (©AAIDD.)

Practitioners need validated strategies for teaching children with significant multiple disabilities (e.g., cognitive, motor, and sensory disability) to use tangible symbols for expressive communication. This single-case experimental design study replicated the positive effect of an adapted protocol for teaching Phase 1 of the Picture Exchange Communication System (PECS) using tangible symbols and extended it to a younger group (4-7 years old) of learners with multiple disabilities. It also tested the effect of an adapted protocol for Phase 2 of PECS to incorporate use of a single switch speech-generating device to gain the attention of an adult communication partner. Two of three students who reached mastery in Phase 1 also reached mastery in Phase 2 and may have generalized requesting behavior from the interventionist (i.e., researchers) to their classroom teacher. Results add to the growing evidence base that shows that the adapted PECS Phase 1 procedures are a promising practice for learners with multiple disabilities, including sensory impairment, and provide preliminary evidence for a more efficient and effective approach to adapting PECS Phase 2 than previously studied for this group of learners. Directions for future research and recommendations for practice are provided.

Implementation science deals with the translation of evidence-based knowledge into practice in the real world. Mindfulness-based programs for people with intellectual and developmental disabilities (IDD) emerged about 20 years ago. Efficacy and effectiveness studies provide the evidence-base for these programs and the field of IDD is moving towards large scale implementation of these programs. This article presents a model for implementing mindfulness-based programs in community settings, including family and group homes, schools, vocational settings, and congregate care facilities. The model is based on the 3-tier positive behavior support (PBS) system commonly used in school, family, and agency settings. Specific mindfulness-based programs can be linked to each of the three tiers to improve the quality of life of people with IDD., (©AAIDD.)

Background: Health-related physical fitness is vital for children with intellectual and developmental disabilities (IDD) to gain healthier lives. The adapted rhythmic gymnastics (ARG) program was designed for children with IDD and is aimed at testing the effects of the exercise program on children's physical fitness., Methods: Participants were recruited from two special needs schools in Beijing of China. Twenty-two children with IDD were assigned to an ARG experimental group or a traditional control group. The experimental group took part in a 16-week ARG program consisting of three 50 min sessions each week. And children's body composition, aerobic capacity, and musculoskeletal functioning were measured by the Brockport Physical Fitness Test (BPFT) before and after the program., Results: The between-group analysis revealed great improvements for the experimental group in abdominal strength (curl-up test: p = 0.025 < 0.05) and upper limb strength (dumbbell press test: p = 0.038 < 0.05). Compared to the pretest, most of the physical fitness parameters improved significantly in the experimental group except BMI, and flexibility of the experimental group children showed a substantial increase., Conclusions: Most of the physical fitness parameters of children with IDD in the experimental group improved significantly, especially on abdominal strength and upper limb muscle strength when comparing to the control group., Competing Interests: The authors certify that there is no conflict of interest with any financial organization regarding the material discussed in the manuscript., (Copyright © 2020 Chenchen Xu et al.)

In the last decade, major strides have been made to elevate the importance of employment for people with intellectual and developmental disabilities (IDD). Despite progress, improvement in employment outcomes remain modest. Using extant data, a sample of 9,871 adults with IDD accessing Medicaid Home and Community-Based Services waiver services across 33 states were studied using hierarchical modeling to understand the effects of age on employment as well as assess how state fiscal effort toward integrated employment services affects employment equity across the lifespan. Key findings showed young and older adults experienced the lowest employment outcomes. The effects of age, however, were moderated in states with higher fiscal effort to integrated employment services. Implications for research, policy, and practice are discussed., (©AAIDD.)

In the United States, employment experiences of people with intellectual and developmental disabilities (IDD) have been dominated by discrepancies between recent policy shifts promoting integrated employment for people with IDD and the stagnation of the employment rate in integrated settings for this population. Although there is no direct source for labor force participation for individuals with IDD in the general population, data from the National Core Indicators Project suggest that, in 2015-2016, only 19% of working-age adults supported by state IDD agencies worked in one of the three forms of integrated employment-group-supported, individual-supported, or competitive (individualized and without supports). Twelve percent (12%) worked in competitive or individual-supported employment, and 7% worked in group-supported employment (Hiersteiner, Bershadsky, Bonardi, & Butterworth, 2016). In addition, individual employment supports have not been implemented with fidelity to a consistent model or set of expectations, and participation in nonwork services has grown rapidly (Domin & Butterworth, 2013; Migliore et al., 2012; Winsor et al., 2017)., (©AAIDD.)

Employment for individuals with intellectual and developmental disabilities (IDD) has gained increased attention through legislation, policies, advocacy, and practice. For transition-age youth, this focus aims to set a trajectory of increased competitive employment outcomes and a lower reliance on facility-based and subminimum wage jobs. Using a statewide survey of day and employment service users, this study sought to understand how earnings of young adults fared compared to other age groups. Key findings highlighted differences across age groups, including that young adults had significantly better odds of earning higher wages. The implications for public policy and service systems in regard to the supports that young adults need in order to embark on a positive trajectory in their work lives are discussed., (©AAIDD.)

Assistive Technology for Cognition (ATC) is employed by children with and without disabilities. However, how the ATC is used in everyday life has not been studied. The current study investigated ATC-usage in everyday planning in three groups: 1) children qualifying for Swedish habilitation centers (ID/ASD), 2) children with disability not qualifying for habilitation service (ADHD), and 3) children with typical development (TD). A parental survey was conducted ( n  = 192) and answers were analyzed with statistical tests and inductive thematic text analysis. Results showed that all groups used ATC, most in the Habilitation group and least in the TD group. According to parents, ATC supported cognitive functions in all groups, but it became evident that the parents were responsible for planning by setting up the ATC, whilst the children merely executed the plans. This was linked to several limitations, for example the design was not appropriately adapted for these groups. The implications for the practitioners are 1) evaluate the users' cognitive abilities and choose an ATC suitable for that individual rather focusing on the diagnosis, and 2) follow up usage to see if it is the parent or the child that are using the ATC.