Disability and Health Journal最新文献

{"title":"Transportation for people with intellectual and developmental disabilities in Home- and Community-Based Services.","authors":"Carli Friedman","doi":"10.1016/j.dhjo.2024.101708","DOIUrl":"https://doi.org/10.1016/j.dhjo.2024.101708","url":null,"abstract":"<p><strong>Background: </strong>Transportation can help improve the health, quality of life, and community integration of people with intellectual and developmental disabilities (IDD). Yet, transportation is one of people with IDD's most common unmet needs.</p><p><strong>Objective: </strong>The aim of this study was to examine if, and, how, states provide non-medical transportation to people with IDD in their Medicaid HCBS programs.</p><p><strong>Methods: </strong>Using content analysis and descriptive statistics, this study analyzed fiscal year (FY) 2021 Medicaid HCBS 1915(c) waivers for people with IDD from across the nation to examine how they allocated transportation.</p><p><strong>Results: </strong>In FY 2021, all 44 states and the District of Columbia with HCBS waivers for people with IDD provided transportation services. Transportation was included either by providing a stand-alone service that exclusively provided transportation, or by being embedded within another service. Transportation was embedded within 896 different HCBS services for people with IDD, most commonly within residential habilitation services (26.70 %), supported employment services (19.44 %), and day habilitation (18.44 %). Thirty-three states (73.33 %) also provided 145 different stand-alone transportation services in their programs for people with IDD, to increase community integration and help people gain access to waiver services. A total of $781.78 million of spending was projected for stand-alone transportation services for 261,109 people with IDD (30.32 % of waiver recipients).</p><p><strong>Conclusions: </strong>HCBS waivers are an important resource for providing transportation for people with IDD. However, significant variation in how states do so may result in disparities or unmet needs.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101708"},"PeriodicalIF":3.7,"publicationDate":"2024-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142299400","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Author Information","authors":"","doi":"10.1016/S1936-6574(24)00144-4","DOIUrl":"10.1016/S1936-6574(24)00144-4","url":null,"abstract":"","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"17 4","pages":"Article 101699"},"PeriodicalIF":3.7,"publicationDate":"2024-09-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S1936657424001444/pdfft?md5=40ab98f508312448c561d18e438fccb7&pid=1-s2.0-S1936657424001444-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142168452","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Still Missing","authors":"Margaret A. Turk MD ,&nbsp;Monika Mitra PhD","doi":"10.1016/j.dhjo.2024.101686","DOIUrl":"10.1016/j.dhjo.2024.101686","url":null,"abstract":"","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"17 4","pages":"Article 101686"},"PeriodicalIF":3.7,"publicationDate":"2024-08-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142037524","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Inequities in medicaid home- and community-based services waiver enrollment among people with intellectual and/or developmental disabilities: A nationwide claims-based analysis.","authors":"A Alex Levine, Megan B Cole, Amy Lynn Michals, Na Wang, Eric Rubenstein","doi":"10.1016/j.dhjo.2024.101676","DOIUrl":"https://doi.org/10.1016/j.dhjo.2024.101676","url":null,"abstract":"<p><strong>Background: </strong>States use Medicaid 1915(c) waiver programs to enable access to home- and community-based services for people with intellectual and/or developmental disabilities (I/DD). However, enrollment rates and potential inequities are not well documented, impeding efforts to improve care access and quality for waiver program enrollees, especially for racially minoritized beneficiaries experiencing compounded barriers to services and supports.</p><p><strong>Objective: </strong>To characterize year-by-year 1915(c) waiver program enrollment among Medicaid-enrolled adults with I/DD from 2016 to 2019 and to analyze population-level inequities by type of I/DD and racial/ethnic group.</p><p><strong>Methods: </strong>Our data source was 2016-2019 Medicaid Transformed Medicaid Statistical Information System Analytic Files Demographic and Eligibility files for beneficiaries with Down syndrome, autism, and intellectual disability. We used generalized estimating equation linear models to estimate the associations of type of I/DD and racial/ethnic group with the probability of 1915(c) waiver program enrollment and reported (1) unadjusted estimates and (2) estimates adjusted for demographics with state and year fixed effects.</p><p><strong>Results: </strong>From 2016 to 2019, across all types of I/DD and racial/ethnic groups, unadjusted 1915(c) waiver program enrollment rates ranged from 40 to 60 % nationwide. We found modest growth in 1915(c) I/DD waiver program enrollment but persistent inequities over time. Compared to beneficiaries with intellectual disabilities, beneficiaries with autism were less likely to enroll while beneficiaries with Down syndrome were more likely. While some racial/ethnic groups had higher unadjusted mean enrollment, after adjustment, racially minoritized beneficiaries were 3.66-12.0 percentage points less likely to enroll compared to white non-Hispanic beneficiaries.</p><p><strong>Conclusions: </strong>Given extensive waiting lists for 1915(c) waiver programs, Medicaid programs should evaluate existing enrollment and authorization processes and consider alternative HCBS program authorities.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101676"},"PeriodicalIF":3.7,"publicationDate":"2024-08-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141890619","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Unmet needs for long-term services and supports and associations with health outcomes.","authors":"Joseph Caldwell, Elad Daniels, Kaitlin Stober","doi":"10.1016/j.dhjo.2024.101678","DOIUrl":"https://doi.org/10.1016/j.dhjo.2024.101678","url":null,"abstract":"<p><strong>Background: </strong>The availability of population-level data on unmet needs for long-term services and supports (LTSS) is limited at state and national levels. Data on unmet LTSS needs can improve our understanding of disparities and relationships with health outcomes.</p><p><strong>Objective: </strong>1) Explore differences in unmet LTSS needs by socio-demographic characteristics, including age, sex, race/ethnicity, metropolitan status, sexual orientation, and socio-economic status; and 2) Examine associations between unmet LTSS needs and health/preventative healthcare outcomes.</p><p><strong>Methods: </strong>We used the 2021 Behavioral Risk Factor Surveillance System (BRFSS) core survey and state-added LTSS questions to analyze a sample of adults with LTSS needs in Texas (N = 1232). We compared socio-demographic characteristics between adults with and without unmet LTSS needs. We conducted modified-Poisson regressions to estimate unadjusted and adjusted risk ratios (with 95 % confidence intervals) for each health/preventative healthcare outcome among adults with unmet LTSS needs. Health outcomes included health status, healthy days-physical health, healthy days-mental health, suicide ideation, and multiple chronic conditions. Preventative healthcare outcomes included routine check-up and flu vaccine.</p><p><strong>Results: </strong>Among adults with LTSS needs, those with unmet LTSS needs were statistically significantly more likely to be younger (age<65), female, higher educational attainment, and non-straight sexual orientation. After controlling for socio-demographic variables, having unmet needs for LTSS was significantly associated with poorer physical and mental health outcomes and suicide ideation.</p><p><strong>Conclusions: </strong>Improved data collection on unmet needs LTSS can assist policymakers, particularly at the state level in guiding reforms to reduce disparities in access to home and community-based services (HCBS) and improve health outcomes.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101678"},"PeriodicalIF":3.7,"publicationDate":"2024-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141908115","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Additive interaction of disability with chronic conditions on mortality risk in middle-aged and older adults in Spain","authors":"Roberto Pastor-Barriuso PhD ,&nbsp;Iñaki Galán MD, PhD ,&nbsp;Javier Damián MD, PhD","doi":"10.1016/j.dhjo.2024.101672","DOIUrl":"10.1016/j.dhjo.2024.101672","url":null,"abstract":"<div><h3>Background</h3><p>Disability and chronic diseases are prevalent conditions associated with mortality, but little information is available on their potential synergistic effects.</p></div><div><h3>Objective</h3><p>This study aimed to describe additive interactions between disability and chronic diseases on mortality risk in middle-aged and older adults.</p></div><div><h3>Methods</h3><p>A representative cohort of 22,800 community-dwelling Spanish people aged 50 years or older were interviewed for disability with the Global Activity Limitation Indicator and specific chronic diseases in the 2011–12 and 2014 National Health Surveys and subsequently followed up for mortality. Five-year all-cause mortality risks were standardized in each disability-by-comorbidity category through inverse probability weighting. We computed interaction contrasts as the departure of the standardized risk difference for people with both conditions from the sum of the standardized risk differences for those with any single condition.</p></div><div><h3>Results</h3><p>The baseline prevalence of disability was 35.1 % (95 % confidence interval [CI] 34.4 %, 35.9 %). There was compelling evidence of synergistic effects of disability with chronic liver disease, heart diseases other than myocardial infarction, cancer, and cerebrovascular disease, with large positive interaction contrasts (95 % CIs) of 106.7 (−16.4, 229.9), 45.7 (6.9, 84.5), 45.1 (−15.0, 105.2), and 42.9 (−41.0, 126.9) excess deaths per 1000 persons. Less clear synergistic responses were observed for other comorbidities. We found some evidence of antagonism for osteoporosis, with a negative interaction contrast of −18.0 (95 % CI −82.2, 46.2) deaths per 1000 persons.</p></div><div><h3>Conclusion</h3><p>Given the high mortality risk in people with disability, the study of its synergistic effects with target comorbidities can provide relevant information regarding preventive measures.</p></div>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"17 4","pages":"Article 101672"},"PeriodicalIF":3.7,"publicationDate":"2024-07-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S1936657424001110/pdfft?md5=f1a9f0e210ea5a7ac7d9a89cfd97d1a0&pid=1-s2.0-S1936657424001110-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141762055","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Time in childhood extracurricular activity and mental health of young adults with developmental disability","authors":"","doi":"10.1016/j.dhjo.2024.101671","DOIUrl":"10.1016/j.dhjo.2024.101671","url":null,"abstract":"<div><h3>Background</h3><p><span>People with developmental disability have higher rates of </span>mental health<span><span> problems such as anxiety, depression, psychological distress, or a limited sense of belonging to a community. Extracurricular activity can help children and adolescents build social connections beyond family, increasing social capital, which may promote mental health in the transition into adulthood. Little is known about such associations among people with </span>developmental disability.</span></p></div><div><h3>Objective</h3><p>To examine associations of childhood extracurricular activity with mental health in young adulthood among people with and without developmental disability.</p></div><div><h3>Methods</h3><p>Data: Panel Study of Income Dynamics (PSID, 1968–2017), its Child Development Supplement (1997, 2002, 2007) and its Transition into Adulthood Supplement (2005–2019) (n = 2801). Time diaries measured time in activity. Outcomes were psychological distress (Kessler K6) and flourishing (Mental Health Continuum-Short Form). Adjusted linear regressions modeled associations.</p></div><div><h3>Results</h3><p>In nationally representative results, 9.6 % (95 % confidence interval, CI 7.8, 11.4) had a disability. Children without disability reported more average weekly time in group activity, 125.1 min (CI 113.2, 136.9) vs. 93.6 (CI 55.1, 132.0; not significant at conventional levels). In adjusted results, “some” group activity (0–180 weekly minutes) was associated with greater flourishing for those with developmental disability (0.89; CI 0.16, 1.61).</p></div><div><h3>Conclusion</h3><p>Among people with developmental disability, group activity in childhood was associated with greater flourishing in young adulthood. More research is needed to understand the complex nature of activity participation for children with developmental disabilities.</p></div>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"17 4","pages":"Article 101671"},"PeriodicalIF":3.7,"publicationDate":"2024-07-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141591848","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development of a single-item physical activity intention measure for adults with intellectual disabilities: Evidence of validity and reliability","authors":"Yetunde Marion Dairo PhD ,&nbsp;Johnny Collett PhD ,&nbsp;Helen Dawes PhD","doi":"10.1016/j.dhjo.2024.101670","DOIUrl":"10.1016/j.dhjo.2024.101670","url":null,"abstract":"<div><h3>Background</h3><p>Physical activity (PA) is important for overall health and well-being, but adults with intellectual disabilities often struggle to achieve adequate levels of PA. Therefore, it is necessary to understand their PA behaviour.</p></div><div><h3>Objective</h3><p>To develop a Single-Item Physical Activity Intention Measure (SPAIM) to assess PA intentions of adults with intellectual disabilities and preliminarily analyse its psychometric properties in terms of validity and reliability.</p></div><div><h3>Methods</h3><p>The study had three phases: developing the SPAIM, assessing its validity and reliability evidence, and conducting a cross-sectional survey to analyse the relationship between PA intentions (measured by SPAIM) and PA levels. Participants were recruited between September 2016 and August 2017 from diverse settings in Oxford, UK, to ensure representation across the intellectual disability spectrum.</p></div><div><h3>Results</h3><p>There were 82 participants aged 20–68 (mean age 36 ± 13) years who had mild-profound intellectual disabilities. The study provided evidence of content- and response processes-related validity to ensure respondents' understanding. Additionally, test-criterion evidence was provided, showing a predictive correlation between PA intention and sedentary hours/day (12 % of the explained variability). However, there was no correlation between PA intention and PA minutes/week. The study also provided adequate test-retest evidence (r = 0.78).</p></div><div><h3>Conclusions</h3><p>SPAIM may be a valuable tool for measuring PA intention in adults with intellectual disabilities. Modifying PA intentions could prove crucial in reducing sedentary behaviour and improving the health outcomes of this population. Future research and application of SPAIM in varied contexts will deepen our understanding of PA intentions and explore its predictive characteristics.</p></div>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"17 4","pages":"Article 101670"},"PeriodicalIF":3.7,"publicationDate":"2024-07-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141699708","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Responsible inclusion: A systematic review of consent to social-behavioral research with adults with intellectual disability in the US","authors":"","doi":"10.1016/j.dhjo.2024.101669","DOIUrl":"10.1016/j.dhjo.2024.101669","url":null,"abstract":"<div><h3>Background</h3><p>In recognition of their status as a health disparities population, there is growing emphasis on conducting research inclusive of adults with intellectual disability to generate new knowledge and opportunities to improve health and equity. Yet they are often excluded from research, and human research participant protection experts and researchers lack agreement on effective consent protocols for their inclusion.</p></div><div><h3>Objective</h3><p>We sought to identify approaches to consent in US-based social-behavioral research with adults with intellectual disability.</p></div><div><h3>Methods</h3><p>We conducted a systematic review on approaches to self-consent with adults with intellectual disability published between 2009 and 2023, identified via searching eight databases and reference list hand searches. We identified 13 manuscripts and conducted a thematic analysis.</p></div><div><h3>Results</h3><p>Our analysis identified themes related to guiding principles, strategies to enhance informed and voluntary consent, approaches to consent capacity, involving individuals subject to guardianship, and strategies for expressing decisions and enhancing ongoing decisions.</p></div><div><h3>Conclusions</h3><p>Manuscripts largely reflected an emphasis on identifying approaches to consent that reflect disability rights principles to promote the right to be included and make one's own decisions based on assessment of relevant information, risks and benefits, and to employ reasonable modifications to achieve inclusion. To avoid the risks of exclusion and advance the responsible inclusion of adults with intellectual disability, we make recommendations to align consent approaches anchored in contemporary thinking about human research participant protections, including through integration with disability rights.</p></div>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"17 4","pages":"Article 101669"},"PeriodicalIF":3.7,"publicationDate":"2024-07-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141499391","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Developing a mobile exercise program for individuals with Spinal Cord Injury: Stakeholder perceptions of app features and implementation determinants","authors":"","doi":"10.1016/j.dhjo.2024.101667","DOIUrl":"10.1016/j.dhjo.2024.101667","url":null,"abstract":"<div><h3>Background</h3><p>Individuals with Spinal Cord Injury (SCI) often experience physical deconditioning, leading to long-term health challenges. While regular exercise can offer substantial health benefits, adherence to exercise guidelines among individuals with SCI is hindered by barriers such as inaccessibility. Exercise programs using the mobile application (App) tailored to individual needs present a promising solution for promoting exercise adherence among individuals with SCI.</p></div><div><h3>Objective</h3><p>This study aimed to identify factors contributing to the successful implementation of an app-based home exercise program for individuals with SCI and gather user feedback on app preferences, functionality, and features.</p></div><div><h3>Methods</h3><p>Guided by the Consolidated Framework for Implementation Research (CFIR), twenty-six clinicians completed an expert panel survey to rank factors influencing the implementation of an app-based intervention for increasing exercise adherence for individuals with SCI. CFIR-selected factors and app quality features obtained from the Mobile Application Rating Scale (MARS) framework were discussed in seven focus groups with 23 individuals with SCI, 6 caregivers, and 6 clinicians.</p></div><div><h3>Results</h3><p>The expert survey identified adaptability, complexity, evidence strength/quality, relative advantage, knowledge/beliefs about the initiative, and execution as the key CFIR factors that affected the intervention's success. Major themes emerging from focus groups with individuals with SCI and caregivers included usability, instruction and guidelines, user-friendly interface, and clinician interaction. In contrast, clinicians mentioned themes such as the representation of the SCI population, time commitment, accessibility, and equipment.</p></div><div><h3>Conclusions</h3><p>The study highlights the significance of incorporating these determinants into future designs to develop app-based home exercise interventions for individuals with SCI.</p></div>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"17 4","pages":"Article 101667"},"PeriodicalIF":3.7,"publicationDate":"2024-06-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141535716","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}