Environmental Modifications for People With Intellectual and Developmental Disabilities: A Policy Analysis of Medicaid Home- and Community-Based Services.

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.

The State of Employment for People With IDD: Implications for Practice, Policy, and Equity.

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.

A systematic review of acquisition and mastery of skills taught using the Picture Exchange Communication System.

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.

Using varied technological agents-assisted simultaneous prompting for teaching discrete skills to children with developmental disabilities.

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.

Pushing the Integrated Employment Agenda: Employment Systems Partners and the High-Performing States Model.

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.

Parent-authored memoirs: Lessons in the practice of narrative medicine.

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.

Pilot Study on the Use of a Video-Based Metric Goal Attainment Assessment.

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.

Clinical management of individuals with Intellectual Disability: The outbreak of Covid-19 pandemic as experienced in a clinical and research center Research in Developmental Disabilities.

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.

A Novel Means-End Problem-Solving Assessment Tool for Early Intervention: Evaluation of Validity, Reliability, and Sensitivity.

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.

Exploração qualitativa do itinerário terapêutico de crianças com deficiência física na Nigéria usando análise de conteúdo temática / Exploración cualitativa del itinerario terapéutico de niños con discapacidades físicas en Nigeria utilizando análisis de contenido temático / Qualitative exploration into therapeutic itinerary of children with physical disabilities in Nigeria using thematic content analysis

Resumo Objetivo Explorar o itinerário terapêutico na busca de cuidados para crianças com deficiências físicas pelos cuidadores. Métodos Um plano qualitativo descritivo que recrutou nove cuidadores de crianças com deficiência física, com consentimento, que frequentavam um Hospital Universitário Nigeriano. Foi utilizado um guia de entrevista semi-estruturado para coletar dados sobre o itinerário terapêutico, que foi definido como os caminhos percorridos pelos indivíduos para resolver o seu problema de saúde. As entrevistas foram gravadas em áudio e transcritas literalmente. Os dados foram analisados utilizando a análise do conteúdo temático. Resultados os temas emergentes revelaram que os cuidadores iniciaram o itinerário terapêutico para os respetivos filhos após a observação de quaisquer deficiências que vão para além de doenças casuais. A falta de capacidade dos hospitais privados, que servem como ponto inicial de entrada na busca de cuidados, encorajou a procura por cuidados nos hospitais públicos, lares espirituais, e clínicas tradicionais. A entrada na fisioterapia dependia de auto-referências, referências por parentes e médicos. Cuidar de crianças com deficiência física prejudicou de modo significativo a vida social, as finanças, o trabalho do cuidador; e expectativas não alcançadas de que a criança melhorasse o mais cedo possível encorajaram um pluralismo contínuo. Conclusão e implicações para a prática O fato de ter crianças com deficiências e de ter havido atraso nos progressos levou os cuidadores a práticas múltiplas e complexas na busca de cuidados de saúde.

Resumen Objetivo Explorar el itinerario terapéutico para la búsqueda de cuidado de niños con discapacidad física por parte de los cuidadores. Métodos Un diseño cualitativo descriptivo que recluta a nueve cuidadores de niños con discapacidades físicas que asisten a un hospital universitario de Nigeria. Se utilizó una guía de entrevista semiestructurada para recopilar datos sobre el itinerario terapéutico que se definió como los caminos que recorren los individuos para abordar su problema de salud. Las entrevistas fueron grabadas en audio y transcritas textualmente. Los datos se analizaron mediante análisis de contenido temático. Resultados Los temas emergentes revelaron que los cuidadores iniciaron un itinerario terapéutico para sus hijos al observar cualquier impedimento que vaya más allá de las enfermedades casuales. La falta de capacidad en los hospitales privados, que sirve como punto inicial de entrada en la búsqueda de atención, fomenta la vacilación en los hospitales públicos, hogares espirituales y clínicas tradicionales. La entrada en fisioterapia dependía de las autorremisiones, las derivaciones de familiares y médicos. El cuidado de niños con discapacidad física afectó significativamente la vida social, las finanzas y el trabajo del cuidador; y las expectativas no satisfechas de que un niño se recupere lo antes posible fomentaron el pluralismo continuo. Conclusión e implicaciones para la práctica El hecho de que los niños presentaran discapacidades e hitos retrasados condujo a múltiples prácticas complejas de búsqueda de atención médica entre los cuidadores. Por lo tanto, estos cuidadores se vuelven médicos pluralistas y encubiertamente no se adhieren a las prescripciones de tratamiento hospitalario.

Abstract Objective To explore the therapeutic itinerary for seeking care for children with physical disabilities by caregivers. Methods A descriptive qualitative design recruiting nine consenting caregivers of children with physical disabilities attending a Nigerian Teaching Hospital. A semi-structured interview guide was used to collect data on therapeutic itinerary which was defined as the paths taken by individuals to address their health problem. Interviews were audio-recorded and transcribed verbatim. Data was analyzed using thematic content analysis. Results Emerging themes revealed that caregivers commenced therapeutic itinerary for their children upon observation of any impairments that go beyond casual illnesses. Lack of capacity in private hospitals, which serves as initial point of entry into care seeking, encourage vacillation into public hospitals, spiritual homes, and traditional clinics. Entry into physiotherapy was dependent on self-referrals, referrals by relatives, and physicians. Caring for children with physical disability significantly affected caregiver's social life, finances, work; and unmet expectations for a child to get well as soon as possible encouraged continuous pluralism. Conclusion and implications for the practice Having children presenting with impairments and delayed milestones led to complex multiple health care seeking practices among caregivers. Thus, these caregivers become medical pluralists and covertly non-adherent to hospital treatment prescriptions.

Employment Trends in Rhode Island From 2011 to 2017 for Adults With Intellectual Disability and Developmental Disabilities.

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.

Efectos de programas interprofesionales terapéuticos basados en el juego para niños con discapacidades del desarrollo / Effects of play-based therapeutic interprofessional programs for children with developmental disabilities

Este trabajo es la continuación de un artículo publicado el año 2020 en la Revista Argentina de Terapia Ocupacional describiendo un programa grupal interprofesional y terapéutico basado en el juego (PITBJ) para niños con discapacidades del desarrollo (Rosin, Saa y Pavone, 2020). El propósito de este articulo es analizar los efectos que tuvo la participación en dos PITBJ en 12 niños de 18 meses a 4 años por medio de dos estudios. El primero, de pre y post prueba, donde 7 niños fueron evaluados en sus habilidades motoras y cognitivas, así como por sus niveles de desarrollo funcional. El segundo utilizó un diseño de caso único, en el que se tomaron 5 medidas de comportamiento discretas a 5 niños en la fase inicial y en la fase de intervención. Los resultados mostraron una tendencia positiva que los PITBJ aumentan los niveles de desarrollo funcional, las habilidades adaptativas, motoras y cognitivas en los niños estudiados y apoya los resultados de estudios similares publicados previamente (Imperatore, Chang, Gutiérrez, & Gunter, 2016 y Acuña, Gutiérrez, e Imperatore, 2020), resaltando la importancia de la detección y la atención temprana utilizando programas con estas características. Mas aún, este estudio da luz a la viabilidad de implementación de los PTIBs en la población de Latinoamérica con resultados positivos.

This work is the continuation of an article published in 2020 in the Argentine Journal of Occupational Therapy describing an interprofessional and therapeutic group program based on play (PITBJ) for children with developmental disabilities (Rosin, Saa and Pavone, 2020). The purpose of this article is to analyze the effects that participation in two PITBJ had on 12 children aged 18 months to 4 years through two studies. The first, a pre and post test study, where 7 children were evaluated on their motor and cognitive skills, as well as their functional development levels. The second used a single case design, in which 5 discrete behavioral measures were taken from 5 children in the initial and in the intervention phase. The results showed a positive trend that the PITBJs increase the levels of functional development, adaptive, motor and cognitive skills in the children studied, and supports the results of similar studies previously published (Imperatore, Chang, Gutiérrez, & Gunter, 2016 and Acuña, Gutiérrez, and Imperatore, 2020), highlighting the importance of early detection and intervention using programs with these characteristics. Furthermore, this study sheds light on the feasibility of implementing PTIBJs in the Latin American population with positive results.

Impact of COVID-19 outbreak on mental health and perceived strain among caregivers tending children with special needs.

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.

Adapted Picture Exchange Communication System using tangible symbols for young learners with significant multiple disabilities.

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.

How COVID-19 May Change the World of Services to People With Intellectual and Developmental Disabilities.

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.

Implementation Science of Mindfulness in Intellectual and Developmental Disabilities.

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.

Family-Based Practices to Promote Well-Being.

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.

The Marriage of Policy, Practices, and Data to Achieve Educational Reform.

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.

Parental Influence on the Physical Activity Behaviors of Young Children With Developmental Disabilities.

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 (ß = 0.26, p = .01, and ß = 0.24, p = .02, respectively). Tangible parental support was positively associated with parents' PA behaviors and PA enjoyment (ß = 0.22, p < .001, and ß = 0.13, p = .04, respectively). Intangible parental support was positively associated with parents' PA behaviors and PA importance (ß = 0.19, p = .05, and ß = 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.