National Institute on Disability, Independent Living, and Rehabilitation Research

This paper is based on work from the Global Research, Innovation, and Education on Assistive Technology (GREAT) Summit that was coordinated by WHO’s Global Cooperation on Assistive Technology (GATE). The purpose of this paper is to describe the needs and opportunities embedded in the assistive product lifecycle as well as issues relating to the various stages of assistive product mobilization worldwide.The paper discusses assistive technology product terminology and the dangers of focusing on products outside the context and rolling out products without a plan. Additionally, the paper reviews concepts and issues around technology transfer, particularly in relation to meeting global needs and among countries with limited resources. Several opportunities are highlighted including technology advancement and the world nearing a state of readiness through a developing capacity of nations across the world to successfully adopt and support the assistive technology products and applications.The paper is optimistic about the future of assistive technology products reaching the people that can use it the most and the excitement across large and small nations in increasing their own capacities for implementing assistive technology. This is expressed as hope in future students as they innovate and in modern engineering that will enable assistive technology to pervade all corners of current and potential marketplaces. Importantly, the paper poses numerous topics where discussions are just superficially opened. The hope is that a set of sequels will follow to continue this critical dialog.Implications for RehabilitationSuccessful assistive technology product interventions are complex and include much more than the simple selection of the right product.Assistive technology product use is highly context sensitive in terms of an individual user’s environment.The development of assistive technology products is tricky as it must be contextually sensitive to the development environment and market as well.As a field we have much to study and develop around assistive technology product interventions from a global perspective.

BACKGROUND: Medical specialty societies are important resources for physicians in advancing their careers. There is a gap in the literature regarding gender disparities within these societies. This study assesses one area where disparities may exist: recognition awards. OBJECTIVE: To determine whether female physicians are underrepresented among recognition award recipients by the American Academy of Physical Medicine and Rehabilitation (AAPM&R). DESIGN: Surveillance study. SETTING AND METHODS: A published online list of national award recipients from the AAPM&R was analyzed. Forty-eight years of data were included, as the list contained all major recognition award recipients from 1968 to 2015. All awards that were given exclusively to physicians were included. There were eight award categories listed online; seven met this criterion, with a total of 264 individual awards presented. One award category was excluded because it focused on distinguished public service and included both physician and nonphysician (eg, public official) recipients. Awards that were not published online were also excluded. MAIN OUTCOME MEASURES: Total awards given to female versus male physicians from 1968 to 2015, with awards given over the past decade (2006-2015) assessed independently. Lectureships were also analyzed as a set. For awards given to groups of physician recipients, analysis included gender composition of the group (eg, male only versus female only versus mixed-gender physician groups). To assess the proportion of female versus male physiatrists over time, physician gender and specialty data from 3 sources were used: the American Medical Association (AMA), the Association of American Medical Colleges (AAMC), and the AAPM&R. RESULTS: Over the past 48 years, the AAPM&R presented 264 recognition awards to physicians. Award recipients were overwhelmingly male (n = 222; 84.1%). Females received 15.9% (n = 42) of the total awards, although there was an upward trend in female physician recipients to 26.8% (n = 26) from 2006 to 2015. Lectureships were given to 8 female physicians (n = 8 of 77, 10.4%). These results were lower than the proportion of female physicians in the field of physiatry (35% in 2013). Female physicians were more likely to receive awards if they were part of a group and less likely to be recognized if the award was given to only 1 recipient each year or involved a lectureship with a speaking opportunity at a national meeting. CONCLUSIONS: To our knowledge, this is the first study in medicine to assess whether female physicians are underrepresented among recipients of recognition awards presented by a national medical society. For nearly half a century, female physicians have been underrepresented in awards presented by the AAPM&R. Although it is encouraging that the proportion of female physicians receiving awards is increasing, further research is needed to understand why underrepresentation remains. LEVEL OF EVIDENCE: Not applicable.

OBJECTIVE: Caregivers usually are not involved while planning the stroke survivor's medical and rehabilitation goals and interventions. This review aimed to identify the needs of stroke survivors as perceived by their caregivers. DESIGN: A literature search from 2003 to 2014 was conducted using Medline, CINAHL, PsychINFO, and Google Scholar. Sixty-six studies were included. Most studies excluded did not encompass caregivers' perspectives. Four reviewers screened the titles, abstracts, and full texts of the articles for inclusion. The data extracted from these studies were synthetized into metathemes. RESULTS: Fifty-two qualitative, ten quantitative survey, and four mixed-methods studies were included in the final synthesis. The studies came from 11 countries. The data synthesis produced following three metathemes: (a) body functional needs, including psychological function, physical function, cognitive function, and uncertainty related to function; (b) activity and participatory needs, including healthy lifestyle, physical activities, speech, independence, cognitive activities, and uncertainty related to activities and participation; and (c) environmental needs, encompassing support, services, safety, accommodation and accessibility, and uncertainty related to environmental factors. CONCLUSIONS: This scoping review identified a range of needs of stroke survivors as perceived by their caregivers. Incorporating the caregiver's preferences and values into clinical decisions may improve outcomes among stroke survivors.

OBJECTIVES: To compare self-reported aggression in people with and without traumatic brain injury (TBI) and examine the relations of aggression to alexithymia (poor emotional insight), depression, and anxiety. SETTING: Rehabilitation hospital. PARTICIPANTS: Forty-six adults with moderate to severe TBI who were at least 3 months postinjury; 49 healthy controls (HCs); groups were frequency matched for age and gender. DESIGN: Cross-sectional study using a quasi-experimental design. MAIN MEASURES: Aggression (Buss-Perry Aggression Questionnaire); alexithymia (Toronto Alexithymia Scale-20); depression (Patient Health Questionnaire-9); and trait anxiety (State-Trait Anxiety Inventory). RESULTS: Participants with TBI had significantly higher aggression scores than HCs. For participants with TBI, 34.2% of the adjusted variance of aggression was significantly explained by alexithymia, depression, and anxiety; alexithymia accounted for the largest unique portion of the variance in this model (16.2%). Alexithymia, depression, and anxiety explained 46% of the adjusted variance of aggression in HCs; in contrast to participants with TBI, depression was the largest unique contributor to aggression (15.9%). CONCLUSION: This was the first empirical study showing that poor emotional insight (alexithymia) significantly contributes to aggression after TBI. This relation, and the potential clinical implications it may have for the treatment of aggression, warrants further investigation.

. The revision was requested by the Committee on Disability Issues in Psychology and was approved by the APA Council of Representatives in February 2022. The task force updated and expanded the guidelines' empirical bases; squarely situated the guidelines in a changing sociocultural landscape (reflected in discussions of disability models, biases and barriers, language use, intersectionality, and respectful and fair assessment and intervention); and added many concrete suggestions for conceptualizing disability and working with disabled clients and their support systems. In this executive summary, we include key points from each of the 23 guidelines. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

The success of persons with severe physical disabilities in living independently in the community, engaging in self‐directed productive activities, and staying healthy depends, in part, on getting and maintaining adequate personal assistance with basic tasks such as getting out of bed and tending to personal hygiene. Although few policymakers would disagree with the contention that many people with disabilities need assistance with daily tasks, there is considerable debate about who should provide assistance, what services should be included, who should pay, who should be entitled to publicly provided and paid services, how much assistance should be provided, and who should control its administration. The prevailing model for delivery of personal assistance services has been primarily medical, with control of services by health care professionals, rather than independent living, with control by consumers receiving services. Traditionally there has been an institutional bias of funding for disability‐related service, despite its much higher expense than community‐based personal assistance services and its violation of basic human rights. Proponents of various solutions to health care reform have given little consideration to the provision of support services for people with disabilities. The advantages of implementing a uniform national system for the delivery of personal assistance services based on consumer control are discussed.

Abstract Employment in general workforce and economic self-sufficiency continue to be the exceptions for people with intellectual and developmental disabilities (IDD), rather than the norm. Research, policy, and practice can and should play a coordinated role in solving this problem. This article summarizes the methods used and the consensus-based national goals identified to guide the direction of the field that were developed by experts in the field. A discussion of the implications of the findings is also provided, including the need for advocacy to advance the goals.

Over 50 million United States citizens (1 in 6 people in the US) have a developmental, acquired, or degenerative disability. The average US citizen can expect to live 20% of his or her life with a disability. Rehabilitation technologies play a major role in improving the quality of life for people with a disability, yet widespread and highly challenging needs remain. Within the US, a major effort aimed at the creation and evaluation of rehabilitation technology has been the Rehabilitation Engineering Research Centers (RERCs) sponsored by the National Institute on Disability, Independent Living, and Rehabilitation Research. As envisioned at their conception by a panel of the National Academy of Science in 1970, these centers were intended to take a "total approach to rehabilitation", combining medicine, engineering, and related science, to improve the quality of life of individuals with a disability. Here, we review the scope, achievements, and ongoing projects of an unbiased sample of 19 currently active or recently terminated RERCs. Specifically, for each center, we briefly explain the needs it targets, summarize key historical advances, identify emerging innovations, and consider future directions. Our assessment from this review is that the RERC program indeed involves a multidisciplinary approach, with 36 professional fields involved, although 70% of research and development staff are in engineering fields, 23% in clinical fields, and only 7% in basic science fields; significantly, 11% of the professional staff have a disability related to their research. We observe that the RERC program has substantially diversified the scope of its work since the 1970's, addressing more types of disabilities using more technologies, and, in particular, often now focusing on information technologies. RERC work also now often views users as integrated into an interdependent society through technologies that both people with and without disabilities co-use (such as the internet, wireless communication, and architecture). In addition, RERC research has evolved to view users as able at improving outcomes through learning, exercise, and plasticity (rather than being static), which can be optimally timed. We provide examples of rehabilitation technology innovation produced by the RERCs that illustrate this increasingly diversifying scope and evolving perspective. We conclude by discussing growth opportunities and possible future directions of the RERC program.

PURPOSE: To quantify effects of motor-assisted elliptical (Intelligently Controlled Assistive Rehabilitation Elliptical [ICARE]) training on walking and fitness of a child with cerebral palsy (CP). KEY POINTS: A 12-year-old boy with walking limitations due to spastic diplegic CP (Gross Motor Function Classification System II) participated in 24 sessions of primarily moderate- to vigorous-intensity ICARE exercise. Fitness improvements were evidenced clinically across sessions by the child's capacity to train for longer periods, at faster speeds, and while overriding motor's assistance. Postintervention, the child walked faster with greater stability and endurance and more rapidly completed the modified Time Up and Go test. CONCLUSION: The child's fitness and gait improved following engagement in a moderate- to vigorous-intensity gait-like exercise intervention. RECOMMENDATIONS FOR CLINICAL PRACTICE: Integration of moderate- to vigorous-intensity motor-assisted elliptical training can promote simultaneous gains in fitness and function for children with CP.

Asthma, a major cause of school absenteeism, can be triggered by allergens and irritants in the child's environment. A new measurement tool, the Environmental Observation Checklist (EOC), was developed and piloted for qualitative assessment of indoor asthma triggers (allergens and irritants), adequacy of ventilation, and existing environmental control practices. Seventy-five classrooms in 20 schools from two large urban school districts in Texas were surveyed using the EOC. A Q-TRAK Air Quality Monitor was used to assess indoor carbon dioxide, temperature, and relative humidity, concurrently. The EOC appears to be a useful screening tool for identifying schools in need of intervention.

This conceptual methods article parallels remarks given at the 2022 American Association on Intellectual and Developmental Disabilities conference highlighting the importance of including the voices of people with intellectual disability in research processes. The purpose of this article was to put forth a call to action to disability researchers to advance, expect, and model inclusive research practices and consider this action as a form of scholarly activism and allyship toward the intellectual and developmental disabilities community. This conceptual article is organized to engage existing inclusive research literature and offers a method of inclusive research team design with practical suggestions for consideration. Finally, implications for research policy are also presented.

A significant gap remains between existing evidence-based care coordination techniques for the general population and those that have been successfully translated for people with intellectual and developmental disabilities (IDD). Two models funded through the Health Care Innovation Awards have dedicated resources to the translation of evidence-based practices in community or clinical settings. This study analyzes quasi-experimental mixed-methods evaluation data, including Medicaid/Medicare claims on more than 600 beneficiaries who participated in the two models and survey data, site visits, and focus groups with participants and caregivers. Qualitative data suggest that both models address key contextual factors, considering residential setting, health disparities, and heterogeneity of the population. We identify key improvements in health care quality related to timeliness, patient safety, and medication reconciliation. In addition, both models show some evidence of reduced claims utilization. This study represents the first step to understand the potential of care coordination to improve the lives of adults aging with IDD. As health systems continue to struggle to manage the cost of their most expensive users and deliver high quality care, these models hold promise as vehicles to reduce utilization and cost among adults who have lived long-term with disability by addressing their unique health care and social needs.

BACKGROUND: To address limitations and challenges associated with current health surveillance of people with intellectual and developmental disabilities (IDD), this study investigates the use of all-payer claims data to identify and characterise this population. METHOD: All-payer claims data from 2010 to 2014 were used to study people with IDD in New Hampshire. Starting with the Centers for Medicare and Medicaid Services' algorithm, IDD was defined using ICD-9 diagnosis codes. Additional ICD-9 codes for developmental disabilities were included to build the knowledge base begun by recent research conducted on Medicaid claimants in five other states. RESULTS: Findings showed the enhanced algorithm offers a replicable and feasible way to conduct health surveillance of people with IDD at the state level. CONCLUSION: Substantive and significant differences between Medicaid and commercial claimants suggest that using all-payer claims provides a richer and more complete method for health surveillance of people with IDD.

OBJECTIVE: To identify psychosocial and functional predictors of self-reported depression and anxiety symptoms at year 2 following traumatic brain injury (TBI). SETTING: Five Department of Veterans Affairs (VA) Polytrauma Rehabilitation Centers (PRCs) within the TBI Model Systems (TBIMS). PARTICIPANTS: A total of 319 service members/veterans enrolled in VA TBIMS who were eligible for and completed both 1- and 2-year follow-up evaluations. DESIGN: Secondary analysis from multicenter prospective longitudinal study. MAIN MEASURES: Demographic, injury-related, military, mental health, and substance use variables. Questionnaires included the Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder-7 (GAD-7), and Neurobehavioral Symptom Inventory. Rating scales included the Participation Assessment with Recombined Tools-Objective and Disability Rating Scale. RESULTS: The final sample was largely male (96%) and predominantly White (65%), with a median age of 27 years. In unadjusted analyses, pre-TBI mental health treatment history and year 1 employment status, community activity, sleep difficulties, and self-reported depression and anxiety symptoms were associated with year 2 PHQ-9 scores; pre-TBI mental health treatment history and year 1 community activity, social contact, problematic substance use, sleep difficulties, and self-reported depression and anxiety symptoms were associated with year 2 GAD-7 scores. In multivariable analyses, only year 1 community activity and depression symptoms uniquely predicted year 2 PHQ-9 scores, and only year 1 employment status, community activity, problematic substance use, and anxiety symptoms uniquely predicted year 2 GAD-7 scores. CONCLUSION: Anxiety and depression commonly occur after TBI and are important treatment targets. Some predictors (eg, participation and substance use) are modifiable and amenable to treatment as well. Early identification of anxiety and depression symptoms is key.

BACKGROUND: Mental health problems are common after pediatric traumatic brain injury (TBI). Many patients in need of mental health services do not receive them, but studies have not consistently used prospective and objective methods or followed samples for more than 1 year. OBJECTIVE: To examine adolescents' use of mental health services after TBI. DESIGN: Secondary analysis from multicenter prospective randomized controlled trial. SETTING: Five level 1 U.S. trauma centers. PARTICIPANTS: Adolescents aged 12-17 years with moderate-to-severe TBI were recruited for a randomized clinical trial (n = 132 at baseline, 124 at 6 months, 113 at 12 months, and 101 at 18 months). METHODS: Participants were randomly assigned to counselor-assisted problem-solving or Internet resource comparison. Follow-up assessments were completed at 6, 12, and 18 months after baseline. Generalized estimating equations with a logit link were used to examine use of mental health services. Treatment group and participant impairment were examined as predictors of use. MAIN OUTCOME MEASUREMENTS: Mental health care use was measured with the Service Assessment for Children and Adolescents; daily functioning and clinical outcome with the Child and Adolescent Functional Assessment Scale; behavioral and emotional functioning with the Child Behavior Checklist; and executive dysfunction with the Behavior Rating Inventory of Executive Function. RESULTS: Use of mental health services ranged from 22% to 31% in the 2 years post-TBI. Participants with impairments were about 3 times more likely than those without impairments to receive services (odds ratio 4.61; 95% confidence interval 2.61-8.14; P < .001). However, 50%-68% of patients identified as impaired had unmet mental health care needs. CONCLUSIONS: Less than one half of adolescents with behavioral health needs after TBI received mental health services. Future studies are needed to examine barriers associated with seeking services after TBI and psychoeducation as preventive care for this population. LEVEL OF EVIDENCE: II.

BACKGROUND: The focus of health care reform is shifting from all-cause to potentially preventable readmissions. Potentially preventable within-stay readmission rates is a measure recently adopted by the Centers for Medicare and Medicaid Services for the Inpatient Rehabilitation Facility Quality Reporting Program. OBJECTIVE: We examined the patient-level predictors of potentially preventable within-stay readmissions among Medicare beneficiaries receiving care in inpatient rehabilitation facilities. We also studied the reasons for readmissions and the risk-standardized variation across states. DESIGN: Retrospective cohort study. SETTING: Inpatient rehabilitation facilities. PATIENTS: Medicare fee-for-service beneficiaries receiving inpatient rehabilitation after hospitalization in 2012-2013 (N = 345,697). METHODS: Medicare claims were reviewed to identify potentially preventable readmissions occurring during inpatient rehabilitation. MAIN OUTCOME MEASURES: (1) Observed rates and odds of potentially preventable within-stay readmissions by patient sociodemographic and clinical characteristics, (2) risk-standardized state rates, and (3) primary diagnoses for hospital readmissions. RESULTS: The overall rate of potentially preventable within-stay readmissions was 3.5% (n = 11,945). Older age, male gender, hospitalizations during the previous 6 months, longer hospital lengths of stay, intensive care unit use, and number of comorbidities were associated with increased odds. Dual eligibility and disability status were not associated with increased odds. Greater functional scores at rehabilitation admission were associated with lower odds. Rates and odds varied across rehabilitation impairment groups. Risk-standardized state rates ranged from 3.1% to 4.1%. Readmissions for conditions reflecting inadequate management of infections (36.8%) were the most frequent and readmissions for inadequate injury prevention (6.1%) least frequent. CONCLUSIONS: Potentially preventable within-stay readmissions may represent a target for inpatient rehabilitation care improvement. Our findings highlight the need for care coordination across providers. Future research should focus on care processes that reduce patients' risk of these potentially preventable rehospitalizations. LEVEL OF EVIDENCE: II.

OBJECTIVE: The aim of the study was to predict suicidal ideation 1 yr after moderate to severe traumatic brain injury. DESIGN: This study used a cross-sectional design with data collected through the prospective, longitudinal Traumatic Brain Injury Model Systems network at hospitalization and 1 yr after injury. Participants who completed the Patient Health Questionnaire-9 suicide item at year 1 follow-up ( N = 4328) were included. RESULTS: A gradient boosting machine algorithm demonstrated the best performance in predicting suicidal ideation 1 yr after traumatic brain injury. Predictors were Patient Health Questionnaire-9 items (except suicidality), Generalized Anxiety Disorder-7 items, and a measure of heavy drinking. Results of the 10-fold cross-validation gradient boosting machine analysis indicated excellent classification performance with an area under the curve of 0.882. Sensitivity was 0.85 and specificity was 0.77. Accuracy was 0.78 (95% confidence interval, 0.77-0.79). Feature importance analyses revealed that depressed mood and guilt were the most important predictors of suicidal ideation, followed by anhedonia, concentration difficulties, and psychomotor disturbance. CONCLUSIONS: Overall, depression symptoms were most predictive of suicidal ideation. Despite the limited clinical impact of the present findings, machine learning has potential to improve prediction of suicidal behavior, leveraging electronic health record data, to identify individuals at greatest risk, thereby facilitating intervention and optimization of long-term outcomes after traumatic brain injury.

BACKGROUND AND OBJECTIVES: Care coordination and palliative care supports are associated with reduced anxiety, fewer hospital admissions, and improved quality of life for patients and their families. Early palliative care can result in savings in the end-of-life period, but there is limited evidence that larger-scale models can improve both utilization and the cost of care. Three models that received Health Care Innovation Awards from the Centers for Medicare & Medicaid Services aimed to improve quality of care and reduce cost through the use of innovative care coordination models. This study explores the total cost of care and selected utilization outcomes at the end-of-life for these innovative models, each of which enrolled adults with multiple chronic conditions and featured care coordination with advance care planning as a component of palliative care. These included a comprehensive at-home supportive care model for persons predicted to die within a year and two models offering advance care planning in nursing facilities and during care transitions. RESEARCH DESIGN AND METHODS: = 277) who died during the study period (2013-2016), relative to a set of matched comparison patients. RESULTS: Comparing participants in each model who died during the study period to matched comparators, two of the three models were associated with significantly lower costs in the last 90 days of life ($2,122 and $4,606 per person), and the third model showed nonsignificant differences. Two of the three models encouraged early hospice entry in the last 30 days of life. For the comprehensive at-home supportive care model, we observed aggregate savings of nearly $19 million over the study period. One care transition model showed aggregate savings of over $500,000 during the same period. Potential drivers of these cost savings include improved patient safety, timeliness of care, and caregiver support. DISCUSSION AND IMPLICATIONS: Two of the three models achieved significant lower Medicare costs than a comparison group and the same two models also sustained their models beyond the Centers for Medicare & Medicaid Services award period. These findings show promise for achieving palliative care goals as part of care coordination innovation.

BACKGROUND: A significant proportion of burn injury patients are admitted to inpatient rehabilitation facilities (IRFs). There is increasing interest in the use of functional variables, such as cognition, in predicting IRF outcomes. Cognitive impairment is an important cause of disability in the burn injury population, yet its relationship to IRF outcomes has not been studied. OBJECTIVE: To assess how cognitive function affects rehabilitation outcomes in the burn injury population. DESIGN: Retrospective study. SETTING: Inpatient rehabilitation facilities in the United States. PARTICIPANTS: A total of 5347 adults admitted to an IRF with burn injury between 2002 and 2011. METHODS OR INTERVENTIONS: Multivariable regression was used to model rehabilitation outcome measures, using the cognitive domain of the Functional Independence Measure (FIM) instrument as the independent variable and controlling for demographic, medical, and facility covariates. MAIN OUTCOME MEASUREMENTS: FIM total gain, readmission to an acute care setting at any time during inpatient rehabilitation, readmission to an acute care setting in the first 3 days of IRF admission, rate of discharge to the community setting, and length of stay efficiency. RESULTS: Cognitive FIM total at admission was a significant predictor of FIM total gain, length of stay efficiency, and acute readmission at 3 days (P < .05). Cognitive FIM total scores did not have an impact on acute care readmission rate or discharge to the community setting. CONCLUSIONS: Cognitive status may be an important predictor of rehabilitation outcomes in the burn injury population. Future work is needed to further examine the impact of specific cognitive interventions on rehabilitation outcomes in this population. LEVEL OF EVIDENCE: II.

This study explores the effects of biopsychosocial factors on life satisfaction among persons with serious mental illness. Participants in this study included a convenience sample of 194 adults recruited from Texas and Wisconsin. A path analysis was conducted with psychiatric symptoms as an exogenous variable, and illness insight, social self-efficacy, social support, community integration, and life satisfaction as endogenous variables. Beginning with a hypothesized model, a best model was obtained after removing the paths that were not significant and adding recommended paths supported by theory. In the final model, psychiatric symptoms, social self-efficacy, social support, and community integration were directly associated with life satisfaction. Illness insight did not directly affect life satisfaction but had indirect effects. Psychiatric symptoms may be the most important and direct predictor of life satisfaction; illness insight, social self-efficacy, social support, and community integration buffer the direct of effect of psychiatric symptoms on life satisfaction.