Pub Date : 2023-11-27DOI: 10.1007/s10882-023-09942-4
Carli Friedman
Unpaid (informal) family caregivers provide vitally important supports to people with intellectual and developmental disabilities (IDD), but receive little support or training. This study’s aim was to examine how states across the nation supported informal family caregivers in their Medicaid Home- and Community-Based Services (HCBS) programs for people with IDD. To do so, I examined fiscal year (FY) 2021 Medicaid HCBS 1915(c) IDD waivers to determine trends in how they allocated respite, family support services, and family training and counseling, and how they permitted paying family caregivers to provide services. HCBS waivers provided respite services to relieve unpaid caregivers, family support services to relieve caregivers and enhance family functioning, and family training and counseling services to strengthen caregiver abilities and self-efficacy. In FY2021, states projected spending $947.4 million on respite services for 174,406 people with IDD, $433.3 million on family support services for 14,159 people with IDD, and $9.3 million for family training and counseling services for 8,744 people with IDD. In addition, states also supported family caregivers by allowing them to be paid to provide certain HCBS services to their family members with IDD; 1,843 HCBS services, or approximately half of HCBS services in FY2021, allowed family members to be paid to provide services to people with IDD. Through integrated supports, states can maximize the quality of life of both people with IDD and their families.
{"title":"Supporting Families: Formal HCBS Supports for Informal Family Caregivers of People with IDD","authors":"Carli Friedman","doi":"10.1007/s10882-023-09942-4","DOIUrl":"https://doi.org/10.1007/s10882-023-09942-4","url":null,"abstract":"<p>Unpaid (informal) family caregivers provide vitally important supports to people with intellectual and developmental disabilities (IDD), but receive little support or training. This study’s aim was to examine how states across the nation supported informal family caregivers in their Medicaid Home- and Community-Based Services (HCBS) programs for people with IDD. To do so, I examined fiscal year (FY) 2021 Medicaid HCBS 1915(c) IDD waivers to determine trends in how they allocated respite, family support services, and family training and counseling, and how they permitted paying family caregivers to provide services. HCBS waivers provided respite services to relieve unpaid caregivers, family support services to relieve caregivers and enhance family functioning, and family training and counseling services to strengthen caregiver abilities and self-efficacy. In FY2021, states projected spending $947.4 million on respite services for 174,406 people with IDD, $433.3 million on family support services for 14,159 people with IDD, and $9.3 million for family training and counseling services for 8,744 people with IDD. In addition, states also supported family caregivers by allowing them to be paid to provide certain HCBS services to their family members with IDD; 1,843 HCBS services, or approximately half of HCBS services in FY2021, allowed family members to be paid to provide services to people with IDD. Through integrated supports, states can maximize the quality of life of both people with IDD and their families.</p>","PeriodicalId":47565,"journal":{"name":"Journal of Developmental and Physical Disabilities","volume":"36 3","pages":""},"PeriodicalIF":1.8,"publicationDate":"2023-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138513908","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-11-23DOI: 10.1007/s10882-023-09939-z
Melissa N. Savage, Tina A. Clark, Edward Baffoe, Alexandra E. Candelaria, Lola Aneke, Renee Gonzalez, Ali Al Enizi, Marisol Anguita-Otero, Keita Edwards-Adams, Lilliesha Grandberry, Stella Reed
Physical health habits including physical activity and nutrition are essential for numerous health benefits. However, beginning in childhood, individuals with intellectual disability engage in lower levels of physical activity and healthy nutrition habits compared to individuals without intellectual disability, a trend that carries on into adulthood. Researchers continue to examine the effectiveness of interventions to increase engagement in physical health habits and improve health outcomes for individuals with intellectual disability, with an increased focus on technology-based interventions. This scoping review aimed to describe how technology was being utilized within interventions to improve health-related outcomes for adults with intellectual disability. We described the technology being used, who used the technology, and the feasibility of the interventions. Forty-one studies met criteria, with a total of 698 adult participants with an intellectual disability. While no studies on nutrition were located, technology was used in various physical activity interventions, with the most common being preferred stimulus access, exergaming, and video-based instruction. Most studies took place at day or rehabilitation centers, were implemented by research teams, and either did not discuss cost or were vague in their description related to cost. Implications, limitations, and future research directions are discussed.
{"title":"Technology-Based Physical Health Interventions for Adults with Intellectual Disability: A Scoping Review","authors":"Melissa N. Savage, Tina A. Clark, Edward Baffoe, Alexandra E. Candelaria, Lola Aneke, Renee Gonzalez, Ali Al Enizi, Marisol Anguita-Otero, Keita Edwards-Adams, Lilliesha Grandberry, Stella Reed","doi":"10.1007/s10882-023-09939-z","DOIUrl":"https://doi.org/10.1007/s10882-023-09939-z","url":null,"abstract":"<p>Physical health habits including physical activity and nutrition are essential for numerous health benefits. However, beginning in childhood, individuals with intellectual disability engage in lower levels of physical activity and healthy nutrition habits compared to individuals without intellectual disability, a trend that carries on into adulthood. Researchers continue to examine the effectiveness of interventions to increase engagement in physical health habits and improve health outcomes for individuals with intellectual disability, with an increased focus on technology-based interventions. This scoping review aimed to describe how technology was being utilized within interventions to improve health-related outcomes for adults with intellectual disability. We described the technology being used, who used the technology, and the feasibility of the interventions. Forty-one studies met criteria, with a total of 698 adult participants with an intellectual disability. While no studies on nutrition were located, technology was used in various physical activity interventions, with the most common being preferred stimulus access, exergaming, and video-based instruction. Most studies took place at day or rehabilitation centers, were implemented by research teams, and either did not discuss cost or were vague in their description related to cost. Implications, limitations, and future research directions are discussed.</p>","PeriodicalId":47565,"journal":{"name":"Journal of Developmental and Physical Disabilities","volume":"35 24","pages":""},"PeriodicalIF":1.8,"publicationDate":"2023-11-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138513909","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-11-15DOI: 10.1007/s10882-023-09937-1
Brenna Griffen, Elizabeth R. Lorah, Nicolette Caldwell, Donald A. Hantula, John Nosek, Matt Tincani, Shea Lemley
Abstract Handwashing is a vital skill for maintaining health and hygiene. For individuals with intellectual and developmental disabilities (IDD), such as autism spectrum disorder, evidence-based strategies, such as prompting and task analysis, may be effective in teaching these skills. Due to the shortage of experts who teach individuals with IDD skills such as handwashing, staff working with children need a means of ensuring these instructional strategies are implemented with fidelity. This study examined the effects of a tablet-based application that used artificial intelligence (GAINS®) on four behavior technicians’ implementation of least-to-most prompting, total task chaining, and time delay during an acquisition of handwashing program with young children with autism. All four technicians increased fidelity immediately upon using GAINS and all four technicians reached mastery criteria within the shortest number of sessions possible. One child participant met mastery criteria, two showed some gains, and one demonstrated a high degree of variability across sessions. Limitations of the least-to-most prompting procedure, user design, considerations and directions for future research and practice are discussed.
{"title":"The Effects of Artificial Intelligence on Implementors’ Fidelity of Instructional Strategies During Handwashing Acquisition in Children with Autism","authors":"Brenna Griffen, Elizabeth R. Lorah, Nicolette Caldwell, Donald A. Hantula, John Nosek, Matt Tincani, Shea Lemley","doi":"10.1007/s10882-023-09937-1","DOIUrl":"https://doi.org/10.1007/s10882-023-09937-1","url":null,"abstract":"Abstract Handwashing is a vital skill for maintaining health and hygiene. For individuals with intellectual and developmental disabilities (IDD), such as autism spectrum disorder, evidence-based strategies, such as prompting and task analysis, may be effective in teaching these skills. Due to the shortage of experts who teach individuals with IDD skills such as handwashing, staff working with children need a means of ensuring these instructional strategies are implemented with fidelity. This study examined the effects of a tablet-based application that used artificial intelligence (GAINS®) on four behavior technicians’ implementation of least-to-most prompting, total task chaining, and time delay during an acquisition of handwashing program with young children with autism. All four technicians increased fidelity immediately upon using GAINS and all four technicians reached mastery criteria within the shortest number of sessions possible. One child participant met mastery criteria, two showed some gains, and one demonstrated a high degree of variability across sessions. Limitations of the least-to-most prompting procedure, user design, considerations and directions for future research and practice are discussed.","PeriodicalId":47565,"journal":{"name":"Journal of Developmental and Physical Disabilities","volume":"9 2","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136228778","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-11-11DOI: 10.1007/s10882-023-09941-5
Michelle C. Reynolds, Mirian E. Ofonedu, Angelina Alpert
{"title":"A Conceptual View of Expanding Person-Centered Thinking Approaches for Developing Personalized Integrated Supports for People with Disabilities and Their Families","authors":"Michelle C. Reynolds, Mirian E. Ofonedu, Angelina Alpert","doi":"10.1007/s10882-023-09941-5","DOIUrl":"https://doi.org/10.1007/s10882-023-09941-5","url":null,"abstract":"","PeriodicalId":47565,"journal":{"name":"Journal of Developmental and Physical Disabilities","volume":"49 12","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135042958","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-11-10DOI: 10.1007/s10882-023-09935-3
Michelle P. Kelly, Ingy Alireza, Shariffah Azzaam, Lamis M. Baowaidan, Ahlam A. Gabr, Roqayyah Taqi, Sharifa N. Yateem
{"title":"Correction: Applied Behavior Analysis and Autism Spectrum Disorder in the Gulf Region in the Middle East","authors":"Michelle P. Kelly, Ingy Alireza, Shariffah Azzaam, Lamis M. Baowaidan, Ahlam A. Gabr, Roqayyah Taqi, Sharifa N. Yateem","doi":"10.1007/s10882-023-09935-3","DOIUrl":"https://doi.org/10.1007/s10882-023-09935-3","url":null,"abstract":"","PeriodicalId":47565,"journal":{"name":"Journal of Developmental and Physical Disabilities","volume":"19 12","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135092541","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-11-07DOI: 10.1007/s10882-023-09936-2
Sarah A. Sobotka
{"title":"Magic Mothers: How Parents of Children with Invasive Mechanical Ventilation Can Make Health System Crises Disappear","authors":"Sarah A. Sobotka","doi":"10.1007/s10882-023-09936-2","DOIUrl":"https://doi.org/10.1007/s10882-023-09936-2","url":null,"abstract":"","PeriodicalId":47565,"journal":{"name":"Journal of Developmental and Physical Disabilities","volume":"50 36","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135432866","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-11-07DOI: 10.1007/s10882-023-09933-5
Ban Haidar, Hedda Meadan
{"title":"The COVID-19 Pandemic Experience for Families of Young Children with Autism","authors":"Ban Haidar, Hedda Meadan","doi":"10.1007/s10882-023-09933-5","DOIUrl":"https://doi.org/10.1007/s10882-023-09933-5","url":null,"abstract":"","PeriodicalId":47565,"journal":{"name":"Journal of Developmental and Physical Disabilities","volume":"52 14","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135432083","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-11-01DOI: 10.1007/s10882-023-09938-0
T. S. van der Woude, R. M. Schüller-Korevaar, A.M. Ulgiati, G.J. Pavlis-Maldonado, J.H.M. Hovenkamp-Hermelink, A.D. Dekker
Abstract Background and Aim Timely diagnosis of dysphagia is important for people with an intellectual disability. Periodic screening of each individual by speech-language therapists is barely feasible with respect to limited resources. Therefore, preselection of individuals with an increased dysphagia risk through screening by caregivers is crucial. Objective This study aimed to develop the novel Screening instrument for Dysphagia for people with an Intellectual Disability (SD-ID). Methods The SD-ID was developed, validated and optimised in two rounds. Version 3, consisting of nine risk factors and 20 items concerning eating/drinking behaviour, was thoroughly studied for feasibility, concurrent validity and reliability, and then optimised. Outcomes and Results The SD-ID (version 3) was filled out in an average of four minutes (feasibility). A strong positive association was found between scores on SD-ID and Dysphagia Disorder Survey (concurrent validity). Test-retest and interrater reliability were very good. Two additional risk factors were added and two items removed to yield the final version 4. The most optimal cut-off score appeared to be either 4 or 5. Conclusions and Implications The SD-ID is a reliable instrument to screen for an increased risk of dysphagia in people with an intellectual disability. Ideally it is part of a cyclic work process: Screening with SD-ID (step 1), diagnostic work-up if necessary (step 2), recommendations (step 3), and evaluation (step 4).
{"title":"Screening Instrument for Dysphagia in People with an Intellectual Disability (SD-ID): Quick and Reliable Screening by Caregivers","authors":"T. S. van der Woude, R. M. Schüller-Korevaar, A.M. Ulgiati, G.J. Pavlis-Maldonado, J.H.M. Hovenkamp-Hermelink, A.D. Dekker","doi":"10.1007/s10882-023-09938-0","DOIUrl":"https://doi.org/10.1007/s10882-023-09938-0","url":null,"abstract":"Abstract Background and Aim Timely diagnosis of dysphagia is important for people with an intellectual disability. Periodic screening of each individual by speech-language therapists is barely feasible with respect to limited resources. Therefore, preselection of individuals with an increased dysphagia risk through screening by caregivers is crucial. Objective This study aimed to develop the novel Screening instrument for Dysphagia for people with an Intellectual Disability (SD-ID). Methods The SD-ID was developed, validated and optimised in two rounds. Version 3, consisting of nine risk factors and 20 items concerning eating/drinking behaviour, was thoroughly studied for feasibility, concurrent validity and reliability, and then optimised. Outcomes and Results The SD-ID (version 3) was filled out in an average of four minutes (feasibility). A strong positive association was found between scores on SD-ID and Dysphagia Disorder Survey (concurrent validity). Test-retest and interrater reliability were very good. Two additional risk factors were added and two items removed to yield the final version 4. The most optimal cut-off score appeared to be either 4 or 5. Conclusions and Implications The SD-ID is a reliable instrument to screen for an increased risk of dysphagia in people with an intellectual disability. Ideally it is part of a cyclic work process: Screening with SD-ID (step 1), diagnostic work-up if necessary (step 2), recommendations (step 3), and evaluation (step 4).","PeriodicalId":47565,"journal":{"name":"Journal of Developmental and Physical Disabilities","volume":"196 2","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135321617","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-10-31DOI: 10.1007/s10882-023-09940-6
Steffie van der Steen, Yannick Hill, Ralf F. A. Cox
Abstract Purpose: Dyadic synchrony is positively associated with social competence. Although children diagnosed with Autism Spectrum Disorder (ASD) and children diagnosed with Down Syndrome (DS) both have trouble with dyadic synchrony, the origin of their difficulties is fundamentally different. In this mixed method study, we investigated differences in dyadic synchrony and social behavior between children diagnosed with ASD and DS. Methods: Twenty-seven children diagnosed with ASD (10 cisgender females; M age = 10.98 years; SD = 2.21) and twenty-five children diagnosed with DS (11 cisgender females; M age = 11.91 years; SD = 2.27) performed a collaborative drawing task with a parent in which they had to synchronize their drawing movements. We continuously tracked their dominant hand movements using wearable accelerometers, and performed Cross-Recurrence Quantification Analysis to extract synchrony measures. Additionally, we compared the social behaviors (interpersonal synchrony, emotion regulation, and social cognition, motivation, and confidence) of these children using quantitative parental questionnaires. Results: Parent-child synchrony measures were significantly higher for children diagnosed with ASD. Yet, parents were significantly more positive about the social behaviors of children diagnosed with DS. No significant correlation between the synchrony and questionnaire measures was found. Conclusion: While children diagnosed with ASD synchronize better during a collaborative task, the social behavior of the children diagnosed with DS (including social synchrony) is more positively evaluated by their parents. Possible reasons for this discrepancy are discussed.
{"title":"The Relationship Between Parent-Child Movement Synchrony and Social Behavior of Children Diagnosed with Autism Spectrum Disorder and Children Diagnosed with Down Syndrome","authors":"Steffie van der Steen, Yannick Hill, Ralf F. A. Cox","doi":"10.1007/s10882-023-09940-6","DOIUrl":"https://doi.org/10.1007/s10882-023-09940-6","url":null,"abstract":"Abstract Purpose: Dyadic synchrony is positively associated with social competence. Although children diagnosed with Autism Spectrum Disorder (ASD) and children diagnosed with Down Syndrome (DS) both have trouble with dyadic synchrony, the origin of their difficulties is fundamentally different. In this mixed method study, we investigated differences in dyadic synchrony and social behavior between children diagnosed with ASD and DS. Methods: Twenty-seven children diagnosed with ASD (10 cisgender females; M age = 10.98 years; SD = 2.21) and twenty-five children diagnosed with DS (11 cisgender females; M age = 11.91 years; SD = 2.27) performed a collaborative drawing task with a parent in which they had to synchronize their drawing movements. We continuously tracked their dominant hand movements using wearable accelerometers, and performed Cross-Recurrence Quantification Analysis to extract synchrony measures. Additionally, we compared the social behaviors (interpersonal synchrony, emotion regulation, and social cognition, motivation, and confidence) of these children using quantitative parental questionnaires. Results: Parent-child synchrony measures were significantly higher for children diagnosed with ASD. Yet, parents were significantly more positive about the social behaviors of children diagnosed with DS. No significant correlation between the synchrony and questionnaire measures was found. Conclusion: While children diagnosed with ASD synchronize better during a collaborative task, the social behavior of the children diagnosed with DS (including social synchrony) is more positively evaluated by their parents. Possible reasons for this discrepancy are discussed.","PeriodicalId":47565,"journal":{"name":"Journal of Developmental and Physical Disabilities","volume":"2 3","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135871510","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-10-19DOI: 10.1007/s10882-023-09934-4
Sara C. Collins, Andrea Barton-Hulsey, Christy Timm-Fulkerson, Michelle C. S. Therrien
{"title":"AAC & Literacy: A Scoping Review of Print Knowledge Measures for Students who use Aided Augmentative and Alternative Communication","authors":"Sara C. Collins, Andrea Barton-Hulsey, Christy Timm-Fulkerson, Michelle C. S. Therrien","doi":"10.1007/s10882-023-09934-4","DOIUrl":"https://doi.org/10.1007/s10882-023-09934-4","url":null,"abstract":"","PeriodicalId":47565,"journal":{"name":"Journal of Developmental and Physical Disabilities","volume":"9 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135667469","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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