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.

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.

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.

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.

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.

Engaging Families in Employment: Individuals and Families' Retrospective Transition Experiences With Employment Services.

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).

Employment Equity for People With IDD Across the Lifespan: The Effects of State Funding.

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.

Avaliação do desenvolvimento motor infantil e sua associação com a vulnerabilidade social / Evaluación del desarrollo motor infantil y su asociación con la vulnerabilidad social / Evaluation of child motor development and its association with social vulnerability

RESUMO O objetivo deste estudo foi avaliar o desenvolvimento motor de crianças de quatro a 17 meses e investigar sua associação com fatores de risco sociodemográficos. Estudo transversal, descritivo, composto por crianças de quatro a 17 meses provenientes da unidade de internação pediátrica de um hospital público de Porto Alegre (RS), clinicamente estáveis e com alta breve prevista. Para a avaliação dos fatores de risco sociodemográficos foi utilizado um questionário elaborado pelas pesquisadoras, que abordou fatores biológicos, sociais e ambientais. Para a avaliação do desenvolvimento motor foi utilizada a Alberta Infant Motor Scale na versão traduzida, adaptada e validada para a população brasileira. Para a análise estatística foi utilizado o teste t de Student e o teste qui-quadrado, com nível de significância de 5% (p≤0,05). De um total de 110 crianças avaliadas, o desempenho motor se mostrou aquém do esperado em mais da metade delas (63,6%, n=70). Houve associação estatisticamente significativa entre o desenvolvimento motor e vacinas atrasadas (p=0,005), convivência com tabagistas em casa (p=0,047) e recebimento de benefício socioeconômico (p=0,036). Conclui-se que esses fatores sociais podem estar associados a fatores de risco ao desenvolvimento motor de crianças de quatro a 17 meses.

RESUMEN El presente estudio tuvo el objetivo de evaluar el desarrollo motor de niños de 4 a 17 meses de edad e investigar su asociación con factores de riesgo sociodemográficos. Es un estudio transversal, descriptivo, en el cual participaron niños de 4 a 17 meses de la unidad de hospitalización pediátrica de un hospital público en Porto Alegre (Brasil), clínicamente estables y con la espera de recibir el alta pronto. Para la evaluación de los factores de riesgo sociodemográficos, se utilizó un cuestionario desarrollado por los investigadores, que abordó los factores biológicos, sociales y ambientales. Para la evaluación del desarrollo motor, se utilizó la Alberta Infant Motor Scale en la versión traducida, adaptada y validada para la población brasileña. En el análisis estadístico, se aplicaron la prueba t de Student y la prueba chi-cuadrado, con un nivel de significación del 5% (p≤0,05). De 110 niños evaluados, más de la mitad de ellos (63,6%, n=70) tuvieron rendimiento motor inferior a lo esperado. Hubo una asociación estadísticamente significativa entre el desarrollo motor y las vacunas tardías (p=0,005), la convivencia con fumadores en el hogar (p=0,047) y el recibimiento de beneficios socioeconómicos (p=0,036). Se concluye que estos factores sociales pueden estar asociados con factores de riesgo para el desarrollo motor de niños de 4 a 17 meses.

ABSTRACT This study aimed to evaluate the motor development of children aged four to 17 months and investigate its association with sociodemographic risk factors. This is a cross-sectional descriptive study conducted with clinically stable children aged four to 17 months from the pediatric inpatient unit of a public hospital in Porto Alegre, RS, and whose hospital discharge would happen soon. For the evaluation of sociodemographic risk factors, a questionnaire developed by the researchers was used which addressed biological, social and environmental factors. The Alberta Infant Motor Scale (AIMS), in its version translated, adapted and validated to Brazilian Portuguese, was used in the evaluation of motor development. In statistical analysis, Student's t-test and Chi-square test were used with significance level of 5% (p≤0.05) for all tests. From a total of 110 evaluated children, motor performance was lower than expected in more than half of them (63.6%, n=70). Motor development presented statistically significant associations with delayed vaccines (p=0.005), cohabitation with smokers (p=0.047), and receiving socioeconomic benefits (p=0.036). In conclusion, social factors such as delayed vaccines, cohabitation with smokers and receiving socioeconomic benefits may be associated with risk factors related to motor development of children aged four months to 17 months old.

Technology and social media use by adult patients with intellectual and/or developmental disabilities.

BACKGROUND: Technology and social media offer individuals with intellectual and/or developmental disabilities (I/DD) unique and innovative ways to facilitate active participation in their own healthcare process. What remains unclear is the extent to which devices are currently used by this growing patient population. OBJECTIVE: To explore the prevalence of technology and social media use, as well as the possible barriers, among adult patients with I/DD. METHODS: A cross-sectional study utilizing an anonymous, accessible survey was used to obtain data from all adult patients (18 + years of age) with I/DD presenting for primary care services at a healthcare facility in New York between September and December of 2016. RESULTS: A total of 370 individuals completed the survey (529 approached, 69.9% response rate). Less than half (44.6%) of respondents used devices such as a tablet, smartphone or desktop; most (86.8%) did not use social media. Only 21.6% of respondents indicated that they use some type of assistive technology. While some respondents (46.0%) were identified by their caregivers as having a disability that would prevent them from learning/using technology, other respondents reported having no challenges (18.0%), needing training and/or ongoing support (7.4%), or being uncertain as to whether they would experience any challenges (15.5%). CONCLUSIONS: Many adult patients with I/DD do not use technology and social media that could promote self-determination and participation in their healthcare. Continued efforts must be made to promote technology use among adults with I/DD and to ensure that appropriate training is available for both the individual and his/her caregivers to achieve adoption and utilization.

Examining the Structure of a New Pediatric Measure of Functional Independence Using the interRAI Child and Youth Mental Health Assessment System.

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.

Impact of multiple co-occurring emotional and behavioural conditions on children with autism and their families.

BACKGROUND: Comorbid conditions are very common in children and adults with autism spectrum disorder (ASD) and can affect school performance, adaptive skills and peer relationships. Comorbid conditions place strain on the family as well as the individual with ASD. This project aimed to determine the affect of comorbid conditions over and above child and family characteristics. METHODS: The present authors examined 3,055 cases of children with ASD who had varying numbers of comorbid conditions (i.e., ADHD, depression, anxiety or behaviour problems). RESULTS: Multiple comorbid conditions did have a unique impact on difficulties accessing services. A greater number of comorbid conditions impacted daily activity participation, but not a family's receipt of mental health care or respite, work changes or number of weekly hours dedicated to caring for a child with ASD. CONCLUSIONS: Families, practitioners, paraprofessionals and educators of children with autism should address comorbid conditions to ensure both child and family well-being.

New and emerging AAC technology supports for children with complex communication needs and their communication partners: State of the science and future research directions.

This paper discusses recent research and development with a specific focus on selected new and emerging research-based augmentative and alternative communication (AAC) technologies that are developmentally appropriate and responsive to the individual interests, needs, and skills of children with developmental disabilities, their families, peers, and other communication partners. Specifically, this paper reviews the state of the science and future directions related to recent research and development of AAC technologies as supports to (a) enhance language learning, (b) facilitate social interaction, (c) improve literacy skills, (d) increase participation in society, and (e) teach interaction strategies to communication partners.

Perceptions of Gastrostomy Buttons Among Caregivers of Children With Special Health Care Needs.

INTRODUCTION: Children with special health care needs (CSHCN) have chronic conditions that generally are classified as developmental disabilities. Children with developmental disabilities are at high risk of malnutrition. Gastrostomy buttons are frequently used to provide enteral nutrition for children with developmental disabilities. OBJECTIVE: This study aimed to understand caregivers' perceptions regarding gastrostomy button placement for CSHCN. METHODS: Caregivers (N = 257) were recruited from CSHCN peer support groups to complete an online survey regarding perceptions of gastrostomy button placement. Kolmogorov-Smirnov testing found that results were not normally distributed. Nonparametric testing with Spearman rank correlation was used to determine the relationship between Overall Satisfaction With Choice and all other perception variables. RESULTS: The findings suggested overall satisfaction and willingness to accept gastrostomy button placement earlier. CONCLUSION: Gastrostomy button placement has diverse effects for children with developmental disabilities and their families. Health care professionals must be knowledgeable about the positive and negative outcomes to effectively educate families as they consider gastrostomy placement.

Comparison of visual analysis, non-overlap methods, and effect sizes in the evaluation of parent implemented functional assessment based interventions.

We used an existing body of research (i.e., parent implemented functional-assessment based interventions) to examine visual analysis features and processes and evaluate the reliability of two frequently used non-overlap indices (NAP & Tau-U) and a novel effect size index-the between-case standardized mean difference (BC-SMD). Results indicated that visual analysis terms and procedures were inconsistently used across studies. Further, there was limited agreement between the non-overlap indices and independent visual analysis. Results regarding the BC-SMD were inconclusive given only 5 of the 15 studies were eligible for analyses for different dependent variables. Our results suggest that visual analysis standards are needed by which single case researchers analyze and report their results. Further, additional research is needed refining SCR effect sizes, which can be used to describe the magnitude of change within and across SCR studies with functional relations.

Validation of the Early Development Instrument for children with special health needs.

AIM: Population-level data on the development of children with special health needs attending primary school can assist special education, health and service delivery strategies. This study aims to determine whether results of the Early Development Instrument (EDI) can be interpreted and used with the same confidence for children with special health needs as for those who are typically developing. Psychometric properties of the EDI for kindergarteners with identified special health needs are examined. METHODS: Data for children with a special health need designation come from a database of all Canadian provincial implementations of the EDI between 2004 and 2014. Item and domain characteristics (distributions of scores and measures of internal consistency) of the EDI were examined. Construct validation was assessed by correlating EDI scores with gender and age. The fit of the original factor structure of the EDI was evaluated using confirmatory factor analysis. RESULTS: Data for 29 692 children (69.8% male) were analysed. The performance of items and domains was similar to that of typically developing children. As expected, boys scored lower on all EDI domains (Cohen's d: 0.03-0.46) and a general, but non-significant, positive trend was observed between age and EDI scores. The factor structure of the EDI in this population yielded similar goodness-of-fit statistics as those reported in studies with typically developing children. CONCLUSION: Results of this investigation support the validity of the EDI in children with special health needs, paving the way for a more extensive use of EDI data for this vulnerable, yet often neglected, population.

Effects of a family-centered workshop for children with developmental delays.

This study investigated the effects of a short-term family-centered workshop for children with developmental delays.This study was conducted in a rehabilitation outpatient clinic of a teaching hospital. We recruited 30 children with developmental delays and their parents as the study group and 57 age- and sex-matched children with typical development and their parents as the control group. The workshop was conducted for the children with developmental delays and their parents in the form of one 2-hour session per week for 6 weeks by health and education professionals by using a family-centered multidisciplinary approach. The Mandarin-Chinese Communicative Developmental Inventory and Peabody Developmental Motor Scales-Second Edition were used to assess the communication and motor skills of the children with developmental delays. The parent form of the Pediatric Outcomes Data Collection Instrument, Child Health Questionnaire, Pediatric Quality of Life (PedsQL) Inventory, and PedsQL Family Impact Module were administered to the parents of both groups.On study commencement, no significant differences were noted in functional performance and family impact between the children with developmental delays and those without delays. The children with developmental delays had lower health and health-related quality of life (HRQOL) scores than the children with typical development. Following the workshop, the study group exhibited significant improvements in physical health (94.2 vs 80.2, effect size: 1.00, P = .026), global function (94.8 vs 78.7, effect size: 0.88, P = .006), impact of the child's health on parental HRQOL (85.0 vs 70.4, effect size: 0.81, P = .043), and parental HRQOL (81.3 vs 65.0, effect size: 0.81, P = .015). No significant differences were recorded in function, health, HRQOL, or family impact between the children with developmental delays and those with typical development after 6 weeks.The multidisciplinary short-term family-centered workshop for children with developmental delays improved the children's physical health and global functional skills, and it reduced the impact of the child's health on parental HRQOL while also improving parental HRQOL.

Physical Therapy Services for People With Intellectual and Developmental Disabilities: The Role of Medicaid Home- and Community-Based Service Waivers.

Background: Care and support for people with intellectual and developmental disabilities (IDD) in natural community contexts are increasing. Many people with IDD use physical therapy services to support their community participation. Medicaid Home- and Community-Based Services (HCBS) 1915(c) waivers are the largest providers of long-term services and supports for people with IDD. However, little is known about physical therapy provision under this program. Objective: The aim of this study was to compare the operational definitions of physical therapy service under the HCBS 1915(c) waiver system and to describe projected physical therapy service utilization, spending, and reimbursement for people with IDD across states. Design: This was a cross-sectional, descriptive study. Methods: This study analyzed fiscal year 2015 HCBS IDD waivers from across the nation (N = 111), focusing on physical therapy utilization (total projected spending, total participants, reimbursement rates, and average annual service provision per participant). Service definitions were also analyzed to determine trends across waivers. Results: Fifty-one waivers (45.9%) provided 61 different types of physical therapy services in fiscal year 2015. States utilized waivers to provide long-term remedial care rather than the acute short-term physical therapy. HCBS waiver physical therapy services were often provided in participants' homes and communities to expand physical therapy access and secure the benefits of providing physical therapy services in natural environments. Although most states have adopted similar definitions of physical therapy service, procedures and services vary. Limitations: Medicaid HCBS waivers are state projections made to the federal government rather than actual utilization data. Conclusions: Physical therapy service definitions, projected service utilization, spending, and reimbursement for people with IDD who use Medicaid HCBS waivers vary greatly between states. Physical therapy may be utilized less than expected given the reported benefits for people with IDD.

The 12-year prevalence and trends of childhood disabilities in Australia: Findings from the Survey of Disability, Aging and Carers.

AIM: This paper contributes to knowledge on the prevalence and nature of disabilities in Australian children over a 12-year period (2003-2015). Understanding the current state of childhood disability is imperative for predicting future needs for long-term care and early intervention services for this population. METHODS: We used data on children 0-14 years from the 2003, 2009, 2012, and 2015 survey of Disability, Aging and Carers, which is an ongoing national survey covering both rural and urban areas of all States and Territories of Australia. RESULTS: Using the test for trends in population, no significant increases were noted in the prevalence of childhood disabilities over the last 12 years, although the prevalence of any developmental disability increased from 6.9% to 7.42% between 2009 and 2015. The rate and severity of disability was higher among boys compared with girls of the same age for a number of selected disabilities and higher for children aged 5-14 years. CONCLUSIONS: With the anticipated rise in psychological related disability among Australian children, there is a need to ensure availability of a flexible and responsive model of service delivery for this population. This also implies that respite service coverage may need to be substantially increased to meet children and caregivers' needs.

Occupational Therapy in Medicaid Home and Community-Based Services Waivers.

OBJECTIVE: Medicaid Home and Community-Based Services (HCBS) 1915(c) waivers are the largest provider of long-term services and supports for people with intellectual and developmental disabilities (IDDs). In this study, we explored how HCBS IDD waivers projected providing occupational therapy services in Fiscal Year (FY) 2015. METHOD: Medicaid HCBS IDD waivers across the nation gathered from the Centers for Medicare and Medicaid Services were qualitatively and quantitatively analyzed to determine how they projected providing occupational therapy services in terms of service expenditures and utilization. RESULTS: In FY 2015, $14.13 million of spending was projected for occupational therapy services of 7,500 participants. However, there was large heterogeneity across states and services in terms of total projected spending, spending per participant, and reimbursement rates. CONCLUSION: Comparisons across states strengthen the profession's ability to assert the value of its services. These findings can help identify best practices and can advocate for the refinement of state occupational therapy programs.

What can structured professional judgement tools contribute to management of neurobehavioural disability? Predictive validity of the Short-Term Assessment of Risk and Treatability (START) in acquired brain injury.

Aggression is a frequently cited outcome of acquired brain injury (ABI). Paradoxically, evidence suggests that ABI clinicians underestimate the risk of violence, and aggression in neurobehavioural services appears more frequent than in forensic/secure psychiatric settings. Risk assessment tools are endemic in the latter and highly beneficial in managing harm. However, none has been validated for ABI. This study examines the predictive validity of ABI violence using one established tool, the Short-Term Assessment of Risk and Treatability (START). It is argued that successful management of aggression in neurobehavioural rehabilitation is partly attributable to ongoing programme calibration following regular review of measures conceptualised for ABI. The predictive ability of START and ABI measures was determined through correlational, receiver operating characteristic and hierarchical multiple regression analyses, using 4559 aggression recordings concerning 76 patients over 4 weeks. The START risk of violence was classed "low" for 50% of the sample and "high" for 13.7%. Significant relationships between individual measures and aggression were evident. However, multivariate analysis confirmed that the best fitting model comprised ABI measures of neurobehavioural disability and functional abilities: START data did not increase explained variance. ABI risk prediction may benefit from development of specific tools. However, these should be conceptualised for ABI to incorporate the diverse range of variables underpinning neurobehavioural disability.