Disability-Related Disparities in Access to Health Care Before (2008-2010) and After (2015-2017) the Affordable Care Act.

Objectives. To explore the effect of the Affordable Care Act (ACA) on disparities in access to health care based on disability status, as well as age, income, race, and ethnicity. Methods. In this study, I used logistic regression to analyze nationally representative data from 128 000 respondents to the US National Health Interview Survey from 2008 to 2010 and 2015 to 2017. Outcome variables were uninsurance over the previous 12 months, delayed or forgone health care for reasons of cost, and having a regular provider at a doctor's office or health clinic. Results. Over the period when the ACA was implemented, large existing disparities in access to health care were reduced for people with certain types of disabilities, young adults aged 19 to 25 years, and low-income families. Conclusions. The ACA improved overall access to health care and reduced some disparities, but substantial disparities persist. Disability status remains associated with much greater risk of delayed or forgone care, and mental health disability is associated with greater likelihood of uninsurance. Public Health Implications. The ACA partially achieved its goals and must not be weakened or rolled back. Further policy efforts are needed to address the remaining disparities.

Outcomes of Person-Centered Planning in Medicaid Home- and Community-Based Services.

BACKGROUND AND OBJECTIVES: Person-centered planning (PCP) allows recipients of home- and community-based service (HCBS) to plan services and supports according to their preferences and needs. The extent to which HCBS systems engage in PCP and evidence for the relationship between PCP and beneficiary outcomes are limited. We examine the prevalence of PCP among HCBS recipients and the relationship between PCP and person-reported outcomes. RESEARCH DESIGN AND METHODS: We used the 2018-2019 National Core Indicators-Aging and Disability survey, collected among adult Medicaid HCBS recipients in 12 states (n = 5,849). We examined 2 general PCP measures (1 on decision making and another on whether service plans reflected preferences/choices). We also constructed a scale to assess the fidelity of recipients' service planning meeting to the PCP process. Outcomes included unmet service needs and community living (i.e., participation, control, and satisfaction). We examined recipient characteristics associated with PCP and used adjusted logistic regression models to assess the relationship between PCP and outcomes. RESULTS: About 72% of HCBS recipients were involved in decision making, 72% reported their service plan reflected their preferences/choices, and 47% had meetings that scored "high fidelity" on the PCP fidelity scale. PCP measures were consistently related to lower likelihood of unmet service needs and greater likelihood of experiencing community living outcomes. DISCUSSION AND IMPLICATIONS: Findings suggest PCP is important for adequately meeting service needs and ensuring community living among HCBS beneficiaries. Additional standardized measures should be developed to facilitate quality improvement and accountability for delivering person-centered HCBS.

Excess Deaths Of Medicaid Home And Community-Based Services Recipients During COVID-19.

Using health plan data, we calculated excess mortality rates for Medicaid home and community-based services recipients during March-December 2020. For younger recipients, excess mortality was 7.4 times that of other community-dwelling Medicaid beneficiaries and 26.6 times that of the general population. As a proportion of expected mortality, excess mortality rates for older recipients and nursing home residents were comparable.

Trends in self-reported visual impairment in the United States: 1984 to 2010.

OBJECTIVE: To explore trends in the prevalence of self-reported visual impairment in the noninstitutionalized adult US population during the 27-year period from 1984 to 2010. DESIGN: Data obtained from the National Health Interview Survey (NHIS) and the Survey of Income and Program Participation (SIPP) were used to analyze trends in the prevalence of self-reported visual impairment in the United States. PARTICIPANTS: Representative, population-based samples of between 45 000 and 92 000 adults (NHIS) and between 37 000 and 71 000 adults (SIPP) during each year of data collection. METHODS: Survey results were age-adjusted to a standard (2010) population. Sampling weights were used throughout the analysis using strata and primary sampling unit variables provided in the public use datasets to appropriately take into account the complex design of the surveys. The statistical significance of trends was estimated by computing the difference in chi-squares of a fit to a linear trendline and a fit without a trend. MAIN OUTCOME MEASURES: The trends and percent change in the prevalence of visual impairment from 1984 to 1996 and from 1997 to 2010 for NHIS and 1984 to 2010 for SIPP. RESULTS: On the basis of NHIS data, the prevalence of activity-limiting visual impairment among persons aged ≥65 years declined by 51.7% (P < 0.001), from 3.5% in 1984 to 1.7% in 1996, and by 45.8% (P < 0.001), from 3.1% in 1997 to 1.7% in 2010. On the basis of SIPP data, the prevalence of functional visual impairment in the same age category declined by 58.3% (P < 0.001), from 23.3% in 1984 to 9.7% in 2010, whereas the prevalence of severe functional impairment declined by 47.1% (P < 0.001), from 5.1% to 2.7%. CONCLUSIONS: There was a marked reduction in the prevalence of self-reported visual impairment in the noninstitutionalized adult US population during the period from 1984 to 2010.

Getting hired: successfully employed people with disabilities offer advice on disclosure, interviewing, and job search.

INTRODUCTION: Many people with disabilities want to work, but face employment barriers that have resulted in dismal employment rates. Successfully employed people with disabilities have valuable experience that can help others seeking employment, yet research literature provides little information about their strategies for discussing disabilities with employers and negotiating the hiring process. METHOD: In five focus groups, 41 people competitively employed for at least 5 years discussed employment experiences related to their varied disabilities. The sample excluded people in disability-related jobs or self-employed. Data were coded and analyzed using a grounded theory method. RESULTS: Disclosure and discussion decisions were influenced by the nature of disability (visible, hidden, stigmatized, multiple), whether and when people needed accommodations, and the perceived "disability-friendliness" of organizations. Qualitative data analysis suggested guidelines for whether, when, and how to discuss disability, while acknowledging the complexity of decision-making depending on workplace culture and personal choices. Interview strategies included ways to emphasize strengths, gather information about duties and work environment, handle inappropriate questions, and address unspoken employer concerns. Participants gave disability-specific advice to help job-seekers balance their abilities and interests, and use networking and other approaches to find favorable opportunities. Concluding that people with disabilities must work harder than others to get a job, they described approaches and tools to help others achieve success. CONCLUSIONS: Findings suggest approaches to assist job-seekers to make decisions about disclosing or discussing their disability, present themselves in a straight-forward, disability-positive manner, and find satisfying work based on their skills and interests.

Medicaid home- and community-based services: impact of the affordable care act.

The Affordable care Act (ACA) legislation of 2010 has three important voluntary provisions for the expansion of home- and community-based services (HCBS) under Medicaid: A state can choose to (1) offer a community first choice option to provide attendant care services and supports; (2) amend its state plan to provide an optional HCBS benefit; and (3) rebalance its spending on long term services and supports to increase the proportion that is community-based. The first and third provisions offer states enhanced federal matching rates as an incentive. Although the new provisions are valuable, the law does not set minimum standards for access to HCBS, and the new financial incentives are limited especially for the many states facing serious budget problems. Wide variations in access to HCBS can be expected to continue, while HCBS will continue to compete for funding with mandated institutional services.

The relationship between unmet need for home and community-based services and health and community living outcomes.

BACKGROUND: Few studies have examined user-reported perspectives about the quality and sufficiency of home and community-based services (HCBS) and their relationship to key health and community living outcomes. OBJECTIVE: To examine the association between unmet need for HCBS and health and community living outcomes in a multi-state, multi-program sample of Medicaid HCBS users. METHODS: We used data from the 2017-2018 National Core Indicators-Aging and Disability (NCI-AD) survey, collected among older adults and adults with physical disabilities who were receiving Medicaid HCBS across 13 states (N = 10,263). We conducted descriptive analysis on the demographic, functional, and health characteristics of the sample, and examined the prevalence of unmet need for HCBS across five domains: 1) assistance with daily activities, 2) assistive technology, 3) home modifications, 4) transportation, and 5) sufficiency of services for meeting user needs and goals. We used logistic regressions to estimate adjusted odds ratios for the association between unmet need for HCBS and health care utilization (ED visits, hospital/rehab stays, preventative care) and community living outcomes (active in the community, interacting with family/friends, satisfaction, control). RESULTS: Across the five domains, prevalence of unmet need ranged from 21% (unmet need for assistance with self-care or other daily activities) to 54% (unmet need for assistive technology). Individuals who experienced unmet need had consistently worse health and community living outcomes than those who reported no unmet need, after adjusting for key user demographic, functional, and social characteristics (p < 0.05). CONCLUSIONS: Unmet need for HCBS is consistently and significantly associated with poor health and community living outcomes among Medicaid users.

Advancing Health Equity And Reducing Health Disparities For People With Disabilities In The United States.

Definitions of disability have evolved over time. Consistent with the biopsychosocial model used by the World Health Organization, we conceptualize disability as an interaction between a person's functional impairments or chronic health conditions and the physical and social environment. Having a disability is not synonymous with poor health, and maintaining and improving health is equally important for both people with and people without disabilities. In this article we review estimates of disability prevalence in the US and present evidence of differences in prevalence by race, ethnicity, and sexual orientation; health disparities by disability status and type of disability; and health disparities for people whose disability intersects with other forms of marginalization. We suggest policy changes to advance equity, reduce disparities, and enhance the health and well-being of all Americans with disabilities.

Why don't employers hire and retain workers with disabilities?

INTRODUCTION: Despite persistently low employment rates among working-age adults with disabilities, prior research on employer practices and attitudes toward workers with disabilities paints a generally rosy picture of successfully accommodated workers in a welcoming environment. Findings from previous studies might have been biased because of either employer self-selection or social desirability, yielding non-representative or artificially positive conclusions. METHODS: In this study, a novel approach was used to survey human resource professionals and supervisors working for employers known or reputed to be resistant to complying with the ADA's employment provisions. Attendees of employer-requested ADA training sessions were asked to assess various possible reasons that employers in general might not hire, retain, or accommodate workers with disabilities and to rate strategies and policy changes that might make it more likely for employers to do so. RESULTS: As cited by respondents, the principal barriers to employing workers with disabilities are lack of awareness of disability and accommodation issues, concern over costs, and fear of legal liability. With regard to strategies employers might use to increase hiring and retention, respondents identified increased training and centralized disability and accommodation expertise and mechanisms. Public policy approaches preferred by respondents include no-cost external problem-solving, subsidized accommodations, tax breaks, and mediation in lieu of formal complaints or lawsuits. CONCLUSIONS: Findings suggest straightforward approaches that employers might use to facilitate hiring and retention of workers with disabilities, as well as new public programs or policy changes that could increase labor force participation among working-age adults who have disabilities.

Demographics and trends in wheeled mobility equipment use and accessibility in the community.

This article presents a profile of household-resident U.S. adults using wheeled mobility equipment (WME) in 2005, trends in WME use from 1990 to 2005, and data on accessibility features and problems from 1994-97. Data were obtained from the Survey of Income and Program Participation (SIPP) and the National Health Interview Survey on Disability (NHIS-D). Compared to the general population, WME users are more likely to be older, female, and in poor health. Forty-four percent are working-aged, with twice the rate of poverty of the general population, and only 17% are employed. Mobility difficulty is the most significant predictor of WME use, but gender, race, poverty, and educational attainment are also significant predictors. From 1990-2005, WME use grew 5% per year, while mobility difficulty declined among the elderly and remained steady among working-age persons. This contrast suggests a reduction in unmet need for WME. In 1994-97, more than half of WME users had difficulty entering or exiting their homes, and one-third had accessibility problems outside their homes. Usage of home modification was low, with substantial unmet need. Regular national data collection on the use of WME and other mobility aids, their financing, and accessibility issues is warranted.

Stuck at the bottom rung: occupational characteristics of workers with disabilities.

INTRODUCTION: The proportion of workers reporting disabilities varies tremendously across occupations. Although differences in the occupational distributions may partly explain the large disparities in earnings and job security between workers with and without disabilities, little is known about the reasons that workers with disabilities are underrepresented in certain occupations and overrepresented in others. METHODS: Using a large, national survey of the US population combined with official data on the skill and experience requirements and occupational risks of 269 occupations, a multilevel regression analysis was performed to identify occupational and individual factors that influence the representation of workers with disabilities across occupations. Models of overall, sensory, mobility, and cognitive disability were constructed for working-age labor force participants, as were models of overall disability for younger, in-between, and older workers. RESULTS: At the occupational level, reported disability is negatively associated with occupational requirements for information and communication skills and with the amount of prior work experience that is required, after controlling for individual factors such as age and educational attainment. Little relationship is found between disability status and a set of occupational risk factors. These findings generally hold true across disability types and age groups. CONCLUSIONS: Even after taking into account their lower average educational attainment, workers with disabilities appear to be disproportionately relegated to entry-level occupations that do not emphasize the better-remunerated job skills. Underemployment results in lower wages and less job security and stability. Possible reasons include employer discrimination, low expectations, deficits in relevant skills or experience, and work disincentives.

Disparities in usage of assistive technology among people with disabilities.

Assistive technology is essential to the lives of many people with disabilities, but disparities in usage put certain segments of the disability population at a particular disadvantage. This article uses survey data and statistical modeling to explore differences in technology usage across disability subpopulations. Responses to a 2005 survey of nearly 2,000 adult consumers of California Independent Living Centers reveal large differences in technology usage by age, race, ethnicity, education, income, and type and severity of disability. Statistical modeling of overall device usage, number of devices used, and usage of high-, medium-, and low-tech devices reveals several factors that appear to put people with disabilities at a disadvantage in accessing and using assistive devices. These factors include lower educational attainment, racial or ethnic minority status, lower household income, later disability onset, and disability related to mental as opposed to physical or sensory functioning. Findings highlight approaches needed to expand usage of and to promote equal access to technologies that enable greater social and economic participation for people with disabilities.

Beneficiaries Respond To California's Program To Integrate Medicare, Medicaid, And Long-Term Services.

In 2014 California implemented a demonstration project called Cal MediConnect, which used managed care organizations to integrate Medicare and Medicaid, including long-term services and supports for beneficiaries dually eligible for Medicare and Medicaid. Postenrollment telephone surveys assessed how enrollees adjusted to Cal MediConnect over time. Results showed increased satisfaction with benefits, improved ratings of quality of care, fewer acute care visits, and increased personal care assistance hours over time. Enrollees also had somewhat better prescription medication access and lower unmet needs for personal care, compared to the comparison group. The lack of improvement in care coordination raises concerns about the implementation of the care coordination benefit, a key feature of the program. The Bipartisan Budget Act of 2018 contains provisions that permanently certify the use of managed care (such as Dual Eligible Special Needs Plans) to integrate Medicare and Medicaid, which makes the lessons learned from California's duals demonstration especially relevant for informing other integrated programs for seniors and people with disabilities.

Assistive technology and employment: experiences of Californians with disabilities.

For people with disabilities, work remains the best route to independence and enacting one's own choices. Assistive technology (AT) is often crucial in removing barriers to employment, and in enabling workers with disabilities to work more productively. A participatory action research project known as Community Research for Assistive Technology surveyed people with disabilities using Independent Living Centers throughout California, in part to identify barriers to employment and study use of job-related AT to overcome such barriers. Across disability groups, disability itself was cited as the primary barrier to employment, with potential loss of benefits and lack of education cited as secondary barriers. A majority of working respondents reported using assistive technology (such as adapted telephones, wheelchairs, magnifiers, and adapted computer equipment) or services to perform job functions. The vast majority of those using job-related AT reported substantial benefits to their productivity and self-esteem. Employees' requests for AT as a workplace accommodation were granted more often than not, but many other employees had to pay for their own workplace AT.

Long-term services and supports in the community: toward a research agenda.

Researchers, policy experts, and advocates participating in an invitational conference discussed research needed to address pressing policy issues in long-term services and supports (LTSS). Future research on need for LTSS should focus on projections of need, geographic variations, equity, and unmet needs of consumers and caregivers. Research on access to home- and community-based services (HCBS) should address progress in rebalancing LTSS in favor of HCBS, cost-containment strategies, the shift to managed LTSS, and the performance of managed care organizations. Major gaps in research on LTSS costs and quality center on both comparative costs and cost-effectiveness of HCBS versus institutional programs, cost savings of managed LTSS versus fee-for-service, performance incentives in managed LTSS, and LTSS quality and outcome measurement. Research on workers and caregivers could focus on worker availability, improving job quality, worker training standards, the impact of paying family members to provide LTSS, and the private-pay LTSS workforce.

Unmet need for personal assistance services: estimating the shortfall in hours of help and adverse consequences.

OBJECTIVES: Perceived unmet need for personal assistance services (PAS) in activities of daily living (ADLs) and instrumental ADLs and its association with reduced hours of help received and with adverse consequences due to lack of help are examined for adults aged 18 and older using data from the 1994-1997 National Health Interview Survey on Disability. METHODS: A two-part multivariate regression model of the probability of PAS use and hours of help received was developed to control for need level, living arrangements, and other characteristics that may differ between persons with met and unmet needs and to determine the shortfall in hours associated with unmet need. RESULTS: Individuals with unmet need for personal assistance with two or more of the five basic ADLs have a shortfall of 16.6 hours of help per week compared with those whose needs are met. The relative shortfall is twice as great for persons who live alone as for those who live with others. People who live alone and have unmet needs fare worse than people with unmet needs who live with others, and both groups are more likely than those whose needs are met to experience adverse consequences, including discomfort, weight loss, dehydration, falls, burns, and dissatisfaction with the help received. DISCUSSION: Overall, just 6.6% of needed hours are unmet among the 3.3 million people needing help in two or more ADLs. We estimate the annual cost of eliminating unmet need among persons with incomes under 300% of the Supplemental Security Income level between 1.2 and 2.7 billion dollars for those living alone and from 2.2 to 7.1 billion dollars for those living with others.

Toward a model long-term services and supports system: state policy elements.

In response to a new Federal initiative to improve the U.S. long-term services and supports (LTSS) system, this commentary discusses an array of policies and practices that could potentially improve LTSS provision by shifting from institutional to community-based services, increasing equity across populations, offering consumers more choice and control, improving conditions for workers and caregivers, and promoting improved consumer-level outcomes. Policy areas include access to publicly funded LTSS, support for consumer direction, workforce development, caregiver support, transition from institutions to the community, diversion from institutional placement, and quality and outcome measurement. Policy considerations apply both to programs and to the managed care organizations that are increasingly responsible for LTSS provision. Additional policy areas related to managed LTSS include financial risk and capitation rates, enrollment strategies, assessment, outcomes monitoring, care coordination, and support for independent living goals.

Disability rates for working-age adults and for the elderly have stabilized, but trends for each mean different results for costs.

The aging of the baby-boom generation, as well as predicted growth in the number of people with disabilities, is expected to increase the demand for long-term services and supports dramatically. This study analyzed data from the Survey of Income and Program Participation from 1984 to 2010 to discern trends among noninstitutionalized working-age adults and the elderly who had some level of disability or need for help with activities of daily living. Some impairments among the elderly, such as in mobility and mental health, decreased. Meanwhile, some impairments among working-age adults, such as in cognitive ability, increased substantially. Of particular importance, the overall prevalence of disability for both age groups has largely stabilized since 2000. Among working-age adults, that stabilization is good news because it eases concern, fueled by prior research, that this population was becoming increasingly disabled and costly to public benefit programs such as Social Security Disability Insurance. However, the flattening of disability trends among the elderly is not good news, since it suggests that the number of elderly people with disabilities will continue to increase in direct proportion to the growing size of the elderly population. Among other implications, the need for both paid workers and unpaid caregivers to assist elderly people, especially those ages seventy-five and older, will continue to increase sharply.

Gradual rebalancing of Medicaid long-term services and supports saves money and serves more people, statistical model shows.

States are shifting Medicaid spending on long-term services and supports from institutional to home and community-based services, a process known as rebalancing. Using fifteen years of state expenditure data, a statistical model was developed to assess the effect of rebalancing on overall spending for long-term services and supports. The model indicates that spending is affected by the way rebalancing is implemented: Gradual rebalancing, by roughly two percentage points annually, can reduce spending by about 15 percent over ten years. More rapid rebalancing can save money, break even, or increase spending, depending on the pace and program specifics. Cuts to home and community-based services that hinder rebalancing are likely to increase, not decrease, overall spending on long-term services and supports as people who were receiving these services shift into nursing homes. Because many states continue to experience budget crises, policy makers must think carefully before altering spending patterns for long-term services and supports and adopt strategies that particular states have used to successfully reduce overall spending, such as gradually shifting expenditures toward home and community-based waiver programs.

Long-term care: who gets it, who provides it, who pays, and how much?

Long-term care in the United States is needed by 10.9 million community residents, half of them nonelderly, and 1.8 million nursing home residents, predominantly elderly. Ninety-two percent of community residents receive unpaid help, while 13 percent receive paid help. Paid community-based long-term care services are primarily funded by Medicaid or Medicare, while nursing home stays are primarily paid for by Medicaid plus out-of-pocket copayments. Per person expenditures are five times as high, and national expenditures three times as high, for nursing home residents compared to community residents. This suggests that a redistribution of spending across care settings might produce substantial savings or permit service expansions.