Two recently published qualitative studies—conducted in Australia and Singapore—coincided with Rare Disease Day 2025, and they delved into the profound psychosocial impacts of inherited retinal diseases (IRDs) among working-age adults. Both studies independently identified similar themes related to identity disruption, social invisibility, emotional turbulence and the significant challenges of adapting to progressive vision loss. This serendipitous alignment highlights the universal challenges and struggles of IRD across distinct cultures, and the findings illuminate how IRDs transcend medical diagnoses, demanding coordinated psychosocial support and policy-level interventions. This commentary reflects upon the implications for healthcare and society at large, and urges a clarion call to action. Improving psychosocial support, enhancing public awareness and advocating for empathetic care models and inclusive policies for persons affected by IRDs are imperatives. In doing so, we can build more equitable systems that address the realities of IRDs and empower individuals to lead fulfilling lives despite their vision impairment.
{"title":"A shared journey and a call for action for persons living with inherited retinal diseases","authors":"Qin Xiang Ng , Hwei Wuen Chan , Gerald Choon Huat Koh","doi":"10.1016/j.dhjo.2025.101921","DOIUrl":"10.1016/j.dhjo.2025.101921","url":null,"abstract":"<div><div><span><span>Two recently published qualitative studies—conducted in Australia and Singapore—coincided with Rare Disease Day 2025, and they delved into the profound psychosocial impacts of inherited </span>retinal diseases (IRDs) among working-age adults. Both studies independently identified similar themes related to identity disruption, social invisibility, emotional turbulence and the significant challenges of adapting to progressive </span>vision loss<span>. This serendipitous alignment highlights the universal challenges and struggles of IRD across distinct cultures, and the findings illuminate how IRDs transcend medical diagnoses, demanding coordinated psychosocial support and policy-level interventions. This commentary reflects upon the implications for healthcare and society at large, and urges a clarion call to action. Improving psychosocial support, enhancing public awareness and advocating for empathetic care models and inclusive policies for persons affected by IRDs are imperatives. In doing so, we can build more equitable systems that address the realities of IRDs and empower individuals to lead fulfilling lives despite their vision impairment.</span></div></div>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"18 4","pages":"Article 101921"},"PeriodicalIF":3.3,"publicationDate":"2025-07-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144576820","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}
Pub Date : 2025-07-02DOI: 10.1016/j.dhjo.2025.101923
Joy Haizelden , Linda Knol , Lori Turner
Background
Risk factors for low bone mineral density (BMD) are widely recognized in the general population; however, influences on BMD in people with mobility limitations is not well understood.
Objective
To examine factors that influence BMD in US adults with mobility limitations, including demographic, anthropometric, and physical activity measures.
Methods
Cross-sectional analysis of NHANES 2013–2018 data, including 421 adults aged ≥20 years with self-reported walking difficulties. Risk factors for low bone mineral density were used including physical activity. Physical activity was assessed using the Global Physical Activity Questionnaire and recoded as meeting or not meeting the guidelines. Total BMD was measured with a dual-energy X-ray absorptiometry scan. Multiple linear regression was used to assess for differences in total BMD.
Results
BMD was significantly higher for males versus females (p < .001), Non-Hispanic blacks versus Non-Hispanic whites (p = .004), individuals who were overweight or obese compared to a people with healthy weights (p = .02, p < .001, respectively). As age increased, BMD decreased. No significant difference in BMD was found between participants meeting physical activity guidelines (1.084 ± 0.012 g/cm2) and those who did not meet guidelines (1.076 ± 0.011 g/cm2; p = .99).
Conclusion
In adults with mobility limitations, traditional demographic and anthropometric risk factors significantly influenced BMD. Calcium intake, vitamin D intake and physical activity guideline adherence were not significant. These findings suggest the need for targeted research to more fully understand bone health determinants in this population.
{"title":"Influences on bone mineral density among adults with mobility Limitations: Results from a national survey","authors":"Joy Haizelden , Linda Knol , Lori Turner","doi":"10.1016/j.dhjo.2025.101923","DOIUrl":"10.1016/j.dhjo.2025.101923","url":null,"abstract":"<div><h3>Background</h3><div>Risk factors<span> for low bone mineral density (BMD) are widely recognized in the general population; however, influences on BMD in people with mobility limitations is not well understood.</span></div></div><div><h3>Objective</h3><div><span>To examine factors that influence BMD in US adults with mobility limitations, including demographic, anthropometric, and </span>physical activity measures.</div></div><div><h3>Methods</h3><div><span><span>Cross-sectional analysis of NHANES 2013–2018 data, including 421 adults aged ≥20 years with self-reported walking difficulties. Risk factors for low bone mineral density were used including </span>physical activity. Physical activity was assessed using the Global Physical Activity Questionnaire and recoded as meeting or not meeting the guidelines. Total BMD was measured with a dual-energy X-ray absorptiometry scan. </span>Multiple linear regression was used to assess for differences in total BMD.</div></div><div><h3>Results</h3><div>BMD was significantly higher for males versus females (p < .001), Non-Hispanic blacks versus Non-Hispanic whites (p = .004), individuals who were overweight or obese compared to a people with healthy weights (p = .02, p < .001, respectively). As age increased, BMD decreased. No significant difference in BMD was found between participants meeting physical activity guidelines (1.084 ± 0.012 g/cm<sup>2</sup>) and those who did not meet guidelines (1.076 ± 0.011 g/cm<sup>2</sup>; p = .99).</div></div><div><h3>Conclusion</h3><div><span><span>In adults with mobility limitations, traditional demographic and anthropometric risk factors significantly influenced BMD. </span>Calcium intake, </span>vitamin D intake and physical activity guideline adherence were not significant. These findings suggest the need for targeted research to more fully understand bone health determinants in this population.</div></div>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"19 1","pages":"Article 101923"},"PeriodicalIF":3.3,"publicationDate":"2025-07-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144621017","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}
Pub Date : 2025-07-01DOI: 10.1016/j.dhjo.2024.101678
Joseph Caldwell, Elad Daniels, Kaitlin Stober
Background
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.
Objective
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.
Methods
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.
Results
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.
Conclusions
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.
{"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":"10.1016/j.dhjo.2024.101678","url":null,"abstract":"<div><h3>Background</h3><div>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.</div></div><div><h3>Objective</h3><div>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.</div></div><div><h3>Methods</h3><div>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.</div></div><div><h3>Results</h3><div>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.</div></div><div><h3>Conclusions</h3><div>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.</div></div>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"18 3","pages":"Article 101678"},"PeriodicalIF":3.7,"publicationDate":"2025-07-01","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}
Pub Date : 2025-07-01DOI: 10.1016/j.dhjo.2024.101708
Carli Friedman
Background
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.
Objective
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.
Methods
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.
Results
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).
Conclusions
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.
{"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":"10.1016/j.dhjo.2024.101708","url":null,"abstract":"<div><h3>Background</h3><div>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.</div></div><div><h3>Objective</h3><div>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.</div></div><div><h3>Methods</h3><div>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.</div></div><div><h3>Results</h3><div>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).</div></div><div><h3>Conclusions</h3><div>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.</div></div>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"18 3","pages":"Article 101708"},"PeriodicalIF":3.7,"publicationDate":"2025-07-01","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}
Pub Date : 2025-07-01DOI: 10.1016/j.dhjo.2024.101590
Kelsey S. Goddard , Jean P. Hall , Lillie Greiman , Lyndsie M. Koon , Randi C. Gray
Background
People with mobility disabilities often have reduced stamina and limited energy, making daily activities physically demanding. Home modifications, such as installing grab bars and optimizing the environment, have the potential to reduce exertion and enhance safety in the home, enabling individuals to participate more in other activities.
Objective
The purpose of this study was to evaluate the effects of a home modification intervention on perceptions of exertion and safety among people with mobility disabilities.
Methods
The study utilized the Home Usability Program (HUP), which aims to improve accessibility, safety, and independence in participants' homes. Participants were recruited from four Centers for Independent Living (CILs) across the US and underwent a comprehensive assessment to identify consumer-directed, individualized home modifications. Surveys examining safety and exertion, in addition to qualitative interviews, were conducted to explore the impact of the intervention on participants’ energy levels and feelings of safety.
Results
Analysis of pre-post measures and participant interviews revealed that the HUP intervention resulted in decreased exertion. Decreased exertion had positive outcomes, including increased time for other activities, improved socialization, enhanced independence, and the potential for engaging in activities outside the home. Additionally, the HUP intervention led to increased safety, which positively affected mental well-being and independence.
Conclusions
Findings highlight the need for useable living environments that minimize physical strain and reduce exertion. Policy recommendations include prioritizing accessibility standards for housing, implementing individualized assessments for funding home modifications, providing financial assistance options, and allocating research funding for innovative solutions and technologies.
{"title":"Examining the effects of home modifications on perceptions of exertion and safety among people with mobility disabilities","authors":"Kelsey S. Goddard , Jean P. Hall , Lillie Greiman , Lyndsie M. Koon , Randi C. Gray","doi":"10.1016/j.dhjo.2024.101590","DOIUrl":"10.1016/j.dhjo.2024.101590","url":null,"abstract":"<div><h3>Background</h3><div>People with mobility disabilities often have reduced stamina and limited energy, making daily activities physically demanding. Home modifications, such as installing grab bars and optimizing the environment, have the potential to reduce exertion and enhance safety in the home, enabling individuals to participate more in other activities.</div></div><div><h3>Objective</h3><div>The purpose of this study was to evaluate the effects of a home modification intervention on perceptions of exertion and safety among people with mobility disabilities.</div></div><div><h3>Methods</h3><div>The study utilized the Home Usability Program (HUP), which aims to improve accessibility, safety, and independence in participants' homes. Participants were recruited from four Centers for Independent Living (CILs) across the US and underwent a comprehensive assessment to identify consumer-directed, individualized home modifications. Surveys examining safety and exertion, in addition to qualitative interviews, were conducted to explore the impact of the intervention on participants’ energy levels and feelings of safety.</div></div><div><h3>Results</h3><div>Analysis of pre-post measures and participant interviews revealed that the HUP intervention resulted in decreased exertion. Decreased exertion had positive outcomes, including increased time for other activities, improved socialization, enhanced independence, and the potential for engaging in activities outside the home. Additionally, the HUP intervention led to increased safety, which positively affected mental well-being and independence.</div></div><div><h3>Conclusions</h3><div>Findings highlight the need for useable living environments that minimize physical strain and reduce exertion. Policy recommendations include prioritizing accessibility standards for housing, implementing individualized assessments for funding home modifications, providing financial assistance options, and allocating research funding for innovative solutions and technologies.</div></div>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"18 3","pages":"Article 101590"},"PeriodicalIF":3.7,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139877027","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}
Pub Date : 2025-07-01DOI: 10.1016/j.dhjo.2024.101628
Alec Nyce, Matthew A Roberts, Renáta Tichá, Brian H Abery
Background
The Research and Training Center on HCBS Outcome Measurement (RTC/OM) developed and piloted measures in six domains to assess the outcomes experienced by HCBS recipients. These measures were based upon the revised National Quality Forum's HCBS Outcome Measurement framework.
Objective
The background and rationale for the pilot study are outlined along with the research design, sampling frame, and psychometric and statistical methods used. In addition, administration feasibility for all measures are described. Finally, a summary of results across all measures is provided. Detailed results for individual outcome measure domains are left to forthcoming publications.
Methods
Measure construct under study were piloted on a sample of 107 participants identified as receiving HCBS or HCBS-like services and experiencing one of five disabilities: intellectual and developmental, age-related, or physical disabilities as well as Traumatic/Acquired Brain Injury and Serious Mental Health Conditions. Participants were interviewed either in-person or through HIPAA compliant online video conferencing over one to two sessions. Psychometric evidence was evaluated with internal consistency and test-retest reliability, as well as inter-observer agreement. Nonparametric methods were used to test for group comparisons.
Results
Initial reliability and validity results of outcomes on five measures were good to excellent. No significant group differences between disability groups were found.
Conclusions
The psychometric evidence for the tested measures is very promising. Only two of the six measures required significant changes prior to their use in an upcoming field study. Details on results and revisions for individual measures will appear in later publications.
{"title":"The design and methodology for a pilot study of home and community-based services outcome measures","authors":"Alec Nyce, Matthew A Roberts, Renáta Tichá, Brian H Abery","doi":"10.1016/j.dhjo.2024.101628","DOIUrl":"10.1016/j.dhjo.2024.101628","url":null,"abstract":"<div><h3>Background</h3><div>The Research and Training Center on HCBS<span> Outcome Measurement (RTC/OM) developed and piloted measures in six domains to assess the outcomes experienced by HCBS recipients. These measures were based upon the revised National Quality Forum's HCBS Outcome Measurement framework.</span></div></div><div><h3>Objective</h3><div>The background and rationale for the pilot study are outlined along with the research design, sampling frame, and psychometric and statistical methods used. In addition, administration feasibility for all measures are described. Finally, a summary of results across all measures is provided. Detailed results for individual outcome measure domains are left to forthcoming publications.</div></div><div><h3>Methods</h3><div>Measure construct under study were piloted on a sample of 107 participants identified as receiving HCBS or HCBS-like services and experiencing one of five disabilities: intellectual and developmental, age-related, or physical disabilities as well as Traumatic/Acquired Brain Injury and Serious Mental Health<span> Conditions. Participants were interviewed either in-person or through HIPAA compliant online video conferencing over one to two sessions. Psychometric evidence was evaluated with internal consistency and test-retest reliability, as well as inter-observer agreement. Nonparametric methods were used to test for group comparisons.</span></div></div><div><h3>Results</h3><div>Initial reliability and validity results of outcomes on five measures were good to excellent. No significant group differences between disability groups were found.</div></div><div><h3>Conclusions</h3><div><span>The psychometric evidence for the tested measures is very promising. Only two of the six measures required significant changes prior to their use in an upcoming </span>field study. Details on results and revisions for individual measures will appear in later publications.</div></div>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"18 3","pages":"Article 101628"},"PeriodicalIF":3.7,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140776494","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}
Pub Date : 2025-07-01DOI: 10.1016/S1936-6574(25)00132-3
{"title":"Author Information","authors":"","doi":"10.1016/S1936-6574(25)00132-3","DOIUrl":"10.1016/S1936-6574(25)00132-3","url":null,"abstract":"","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"18 3","pages":"Article 101903"},"PeriodicalIF":3.7,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144534177","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}
Pub Date : 2025-07-01DOI: 10.1016/j.dhjo.2025.101773
Kartik Trivedi , Sydney Pickern , Teresa Nguyen
Background
Economically insecure people with disabilities are often forced to choose between health and housing. Housing instability in the form of mortgage, rent delinquency, or missing utility payments can adversely affect the health and well-being of people with disabilities and, specifically, people with LTSS needs.
Objective
Our study investigates the disparity in housing stability for LTSS households and non-LTSS disability households in comparison to non-disability households. We also investigate the differences in housing stability indicators between 2017 and 2021 (during COVID-19) to assess the potential impact of the COVID-19 crisis on housing instability. Finally, we conducted a stratified analysis to investigate the intricate relationship between LTSS needs and aging.
Methods
We used data from the American Housing Survey (AHS) from 2017 to 2021 to conduct a logistic regression analysis to examine housing instability for households with members with LTSS needs. We also conducted a stratified logistic regression analysis, with data stratified by age groups, to investigate whether this relationship varied across different age groups.
Results
LTSS households faced housing instability in 2017 and 2021, with higher odds of missing mortgage, rent, and utility payments. Compared to 2017, LTSS households in 2021 face marginally lower odds of missing mortgage and utility payments but higher odds of missing rent.
Conclusion
We need sustained policy intervention to reduce housing instability for LTSS and non-LTSS households. Some policies employed during the COVID-19 crisis at both federal and state levels may have reduced housing instability for the LTSS and non-LTSS disability households.
{"title":"Housing stability for households with LTSS needs in America: Contrasting pre-pandemic housing data from 2017 with data from 2021","authors":"Kartik Trivedi , Sydney Pickern , Teresa Nguyen","doi":"10.1016/j.dhjo.2025.101773","DOIUrl":"10.1016/j.dhjo.2025.101773","url":null,"abstract":"<div><h3>Background</h3><div>Economically insecure people with disabilities are often forced to choose between health and housing. Housing instability in the form of mortgage, rent delinquency, or missing utility payments can adversely affect the health and well-being of people with disabilities and, specifically, people with LTSS needs.</div></div><div><h3>Objective</h3><div>Our study investigates the disparity in housing stability for LTSS households and non-LTSS disability households in comparison to non-disability households. We also investigate the differences in housing stability indicators between 2017 and 2021 (during COVID-19) to assess the potential impact of the COVID-19 crisis on housing instability. Finally, we conducted a stratified analysis to investigate the intricate relationship between LTSS needs and aging.</div></div><div><h3>Methods</h3><div>We used data from the American Housing Survey (AHS) from 2017 to 2021 to conduct a logistic regression analysis to examine housing instability for households with members with LTSS needs. We also conducted a stratified logistic regression analysis, with data stratified by age groups, to investigate whether this relationship varied across different age groups.</div></div><div><h3>Results</h3><div>LTSS households faced housing instability in 2017 and 2021, with higher odds of missing mortgage, rent, and utility payments. Compared to 2017, LTSS households in 2021 face marginally lower odds of missing mortgage and utility payments but higher odds of missing rent.</div></div><div><h3>Conclusion</h3><div>We need sustained policy intervention to reduce housing instability for LTSS and non-LTSS households. Some policies employed during the COVID-19 crisis at both federal and state levels may have reduced housing instability for the LTSS and non-LTSS disability households.</div></div>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"18 3","pages":"Article 101773"},"PeriodicalIF":3.7,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142984755","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}
Pub Date : 2025-07-01DOI: 10.1016/j.dhjo.2024.101712
Gum-Ryeong Park , Saud Haseeb , Eun Ha Namkung
Background
Poor housing conditions pose significant risks to the health of persons with disabilities. However, it is not well understood how and for whom the relationship between housing conditions and health is more pronounced.
Objective
This study aims to estimate the association between poor housing conditions and psychological health, and to explore whether residential characteristics, such as residence type and proximity to community resources, mitigate these risks for community-dwelling adults with disabilities.
Methods
Data were obtained from three waves of the Disability and Life Dynamic Panel (n = 5,058), a nationally representative study of individuals with disabilities in Korea. Our sample were limited to those aged 20 or older for the purpose of this study. Individual-level fixed effect analyses were conducted to assess the longitudinal association between poor housing conditions and depressive symptoms, accounting for individual-level heterogeneity. We also tested the moderating effects of the residential characteristics, including proximity to community resources and residence type.
Results
Poor housing conditions, characterized by structural unsafety and inadequate ventilation, lighting, and noise protection, were associated with increased depressive symptoms among adults with disabilities. The negative impact of poor housing conditions on depressive symptoms was less pronounced for those living close to community services or in apartment complexes where housing conditions are professionally managed.
Conclusions
The study indicates that the quality of housing and neighborhood environments affect the psychological health of adults with disabilities. These findings support for the need for place-based interventions aimed at improving the residential environments of community-dwelling adults with disabilities.
{"title":"The effects of poor housing conditions on depressive symptoms in persons with disabilities: Do neighborhood resources and residence type matter?","authors":"Gum-Ryeong Park , Saud Haseeb , Eun Ha Namkung","doi":"10.1016/j.dhjo.2024.101712","DOIUrl":"10.1016/j.dhjo.2024.101712","url":null,"abstract":"<div><h3>Background</h3><div>Poor housing conditions pose significant risks to the health of persons with disabilities. However, it is not well understood how and for whom the relationship between housing conditions and health is more pronounced.</div></div><div><h3>Objective</h3><div>This study aims to estimate the association between poor housing conditions and psychological health, and to explore whether residential characteristics, such as residence type and proximity to community resources, mitigate these risks for community-dwelling adults with disabilities.</div></div><div><h3>Methods</h3><div>Data were obtained from three waves of the Disability and Life Dynamic Panel (n = 5,058), a nationally representative study of individuals with disabilities in Korea. Our sample were limited to those aged 20 or older for the purpose of this study. Individual-level fixed effect analyses were conducted to assess the longitudinal association between poor housing conditions and depressive symptoms, accounting for individual-level heterogeneity. We also tested the moderating effects of the residential characteristics, including proximity to community resources and residence type.</div></div><div><h3>Results</h3><div>Poor housing conditions, characterized by structural unsafety and inadequate ventilation, lighting, and noise protection, were associated with increased depressive symptoms among adults with disabilities. The negative impact of poor housing conditions on depressive symptoms was less pronounced for those living close to community services or in apartment complexes where housing conditions are professionally managed.</div></div><div><h3>Conclusions</h3><div>The study indicates that the quality of housing and neighborhood environments affect the psychological health of adults with disabilities. These findings support for the need for place-based interventions aimed at improving the residential environments of community-dwelling adults with disabilities.</div></div>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"18 3","pages":"Article 101712"},"PeriodicalIF":3.7,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142394667","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}
Pub Date : 2025-07-01DOI: 10.1016/j.dhjo.2025.101782
Kimberly J. The , Maggie Sheets , Shulamith Acevedo , Emily Almeda-Lopez , Nancy Garr-Colzie , Luanjiao Aggie Hu , Dennis Heaphy
Background
This article evaluates a role, the Long Term Services and Supports (LTS) Coordinator in a program (called One Care) for dually eligible individuals who have Medicare and Medicaid.
Objective
Examine the implementation of the LTS Coordinator role within the One Care demonstration project and assess its strengths and areas for improvement.
Methods
This study utilizes thematic analysis25 and is informed by participatory action research19. One Care members (n = 27), LTS Coordinators (n = 4), and One Care health plans’ staff members (n = 6) were recruited via convenience sampling. Semi-structured interviews were used for data collection.
Results
Participants felt supported and understood by their LTS Coordinators, which was helpful in combating isolation and loneliness. LTS Coordinators filled gaps in care related to social determinants of health. However, stakeholders had mixed understandings and definitions of the role of LTS Coordinators. Participants indicated the need for more resources for the LTS Coordinators.
Conclusions
The LTS Coordinator is a unique and innovative role in the One Care duals demonstration. The role of the LTS Coordinator can be strengthened by clarifying the LTS Coordinator role, integrating them within the care team, and improving training and compensation. The LTS Coordinator feature of One Care can serve as a model for other integrated care programs.
背景：本文评估了一项计划（名为 "一体护理"）中的长期服务与支持协调员这一角色，该计划针对的是同时符合医疗保险和医疗补助资格的个人：研究 "一体护理 "示范项目中长期服务与支持协调员角色的实施情况，并评估其优势和需要改进的地方：本研究采用主题分析法25 ，并借鉴了参与式行动研究19 的方法。通过便利抽样招募了 One Care 会员（n = 27）、LTS 协调员（n = 4）和 One Care 健康计划的工作人员（n = 6）。采用半结构式访谈收集数据：结果：参与者感觉到了他们的 LTS 协调员对他们的支持和理解，这有助于消除孤独和寂寞。LTS 协调员填补了与健康的社会决定因素相关的护理空白。然而，利益相关者对长者服务协调者角色的理解和定义不尽相同。与会者表示需要为长者服务协调员提供更多资源：在 "一体护理 "双重示范项目中，长期治疗服务协调员是一个独特而创新的角色。可以通过明确 LTS 协调员的角色、将其纳入护理团队以及改善培训和报酬来加强 LTS 协调员的作用。一体护理 "的 LTS 协调员功能可作为其他综合护理计划的典范。
{"title":"Explorations of the long term supports coordinator role in managed care for people who are dually eligible for Medicare and Medicaid: A participatory action research-informed study","authors":"Kimberly J. The , Maggie Sheets , Shulamith Acevedo , Emily Almeda-Lopez , Nancy Garr-Colzie , Luanjiao Aggie Hu , Dennis Heaphy","doi":"10.1016/j.dhjo.2025.101782","DOIUrl":"10.1016/j.dhjo.2025.101782","url":null,"abstract":"<div><h3>Background</h3><div>This article evaluates a role, the Long Term Services and Supports (LTS) Coordinator in a program (called One Care) for dually eligible individuals who have Medicare and Medicaid.</div></div><div><h3>Objective</h3><div>Examine the implementation of the LTS Coordinator role within the One Care demonstration project and assess its strengths and areas for improvement.</div></div><div><h3>Methods</h3><div>This study utilizes thematic analysis<sup>25</sup> and is informed by participatory action research<sup>19</sup>. One Care members (n = 27), LTS Coordinators (n = 4), and One Care health plans’ staff members (n = 6) were recruited via convenience sampling. Semi-structured interviews were used for data collection.</div></div><div><h3>Results</h3><div>Participants felt supported and understood by their LTS Coordinators, which was helpful in combating isolation and loneliness. LTS Coordinators filled gaps in care related to social determinants of health. However, stakeholders had mixed understandings and definitions of the role of LTS Coordinators. Participants indicated the need for more resources for the LTS Coordinators.</div></div><div><h3>Conclusions</h3><div>The LTS Coordinator is a unique and innovative role in the One Care duals demonstration. The role of the LTS Coordinator can be strengthened by clarifying the LTS Coordinator role, integrating them within the care team, and improving training and compensation. The LTS Coordinator feature of One Care can serve as a model for other integrated care programs.</div></div>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"18 3","pages":"Article 101782"},"PeriodicalIF":3.7,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143538042","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}
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