Purpose: This paper addresses how Medicaid personal care attendant (PCA) service users with physical disabilities experience barriers to cross-state movement arising from the interstate variation in ...these programs. Using the Moves in Context model, this analysis focuses on the structural-level influences on individual cross-state move trajectories.
Methods: Semi-structured interviews were conducted with 18 Medicaid PCA service users who were considering or pursuing cross-state moves motivated by opportunity. Questions addressed the cross-state move process; social participation; education and employment; and access to PCA services. Grounded theory methods were used to analyze interview transcripts and generate analytic codes and categories.
Findings: Participants described their experiences with interstate variation in Medicaid PCA services in terms of (1) contending with conflicts between the need for services and the desire for cross-state moves; (2) navigating "hoops of fire"; and (3) recasting imagined futures. Participants also expressed experiences of intrastate confinement, or being stuck in their current state (4) using metaphors of immobility and (5) recognizing intrastate confinement as a form of categorical exclusion.
Conclusion: Interstate variation in Medicaid PCA policy impedes program users' ability to pursue educational and occupational advancement, and leads to feelings of second-class citizenship. Policy changes should be explored to affirm the autonomy of Medicaid PCA service users.
Implications for Rehabilitation
Interstate variation in Medicaid PCA services and cross-state moves
* Medicaid personal care assistance service users desire and pursue cross-state moves, especially when drawn by educational or employment opportunities.
* Interstate variation in Medicaid policy negatively impacts the ability for PCA service program users to pursue these moves due to gaps or delays in service access, creating inequity in opportunity and feelings of second-class citizenship.
* Individual users of Medicaid PCA services need information and services as they plan pursue cross-state moves.
* States and the Center of Medicare and Medicaid Services should offer guidance to support the independent living, educational, and economic goals of users of PCA services who desire cross-state moves.
For users of Medicaid personal care assistance (PCA) services and their families, interstate variation in eligibility and service availability act as structural barriers to cross‐state movement. ...However, program users desire and pursue cross‐state moves. In this article, we provide a grounded theory analysis of 18 interviews with Medicaid PCA users with physical disabilities who expressed desire for or pursued cross‐state moves. Our analysis identified six forms of previously unnamed and unrecognized work. As PCA users plan or pursue cross‐state moves, they are also (1) assessing service ecosystems, (2) finding the right door, (3) persisting through the bureaucratic gauntlet, (4) advocating for systems cooperation, (5) reestablishing networks of support, and (6) responding to service gaps/lapses. Collectively, we describe this hidden labor as beneficiary work, the unremunerated work that program users must do in order to retain access to benefits for which they qualify. Beneficiary work, while hidden, is not optional; it is necessary for continued access to community and broadly, for survival. Identifying and describing beneficiary work expands on Feminist and interactionist perspectives on disability, poverty, and work, and highlights the need for changes to Medicaid policy that address PCA users as mobile citizens.
Research on geographic mobility in the US has neglected disabled people, missing their experiences of abridged citizenship as their desires to move across states are frustrated by social policy ...barriers. To illustrate how meso- and macro-level factors impact individual lives, I review three publicly-reported stories of Medicaid home and community-based services (HCBS) users. To advance research in this area, I analyzed these three stories and developed an original conceptual model, Moves in Context. The model attends to the individual cross-state move trajectories of disabled people, and HCBS users, in particular. Moves in Context focuses on the individual journey (i.e., impetus, ability, and success of move; and the influence of the move story) in relation to both social position/personal resources and social structure/ideology. Through the model, I introduce and explain intrastate confinement, a term to describe the geographic immobility resulting from policy variations across states. I conclude with a discussion of the broader implications of both the Moves in Context model and intrastate confinement for further research on disabled people and interrogating other social problems.
For older adults and people with disabilities in the United States, family caregiving is an important part of remaining at home and in the community. As care recipients and caregivers age, family ...dynamics change, and the health, social, and financial impacts of this (largely unremunerated) work have implications for individuals, families, and social policy. In this review, the authors map the literature across multiple fields related to disability and aging to understand caregiving in late life, what it means to be an older caregiver and/or to care for older people. The authors summarize the findings of 97 articles to address the care, services, and supports family caregivers provide for older adults; negative and positive impacts for caregivers serving in this role; supports that family members use or need; and societal impact of family caregiving. Much of the literature describes the work family caregivers provide and negative impacts of caregiving. Less attention is devoted to caregiving benefits, supports used by family caregivers, and societal impacts. The authors conclude with an agenda for future research that attends to the need for research that includes: more diverse samples, new types of caregivers, longitudinal data, qualitative data and analysis, and comparative research.
Family members are a key source of services and supports for people with disabilities across the life course, helping people to remain living at home and in the community. As part of an effort to ...generate a strategic plan for research on family caregiver experiences and supports, this issue includes four literature reviews on the current state of research, each specific to a life course stage. This introduction presents a framework that combines life course and ecological perspectives to organize the existing literature of family caregiver support and to identify gaps in existing research, as well as opportunities for future investigations.
This study describes the previously unexplored subsample of respondents who reported at least 1 same-sex sexual relationship (SSSR) in the National Social Life, Health, and Aging Project (NSHAP). The ...NSHAP collected data from 3,005 adults (aged 57-85). Approximately 4% (n = 102) of respondents reported at least one SSSR. These sexual minority elders were younger, more educated, were more likely to be working, had fewer social supports, and better physical health. Results may indicate crisis competence in sexual minority elders. Collecting sexual orientation and gender identity data in larger, US-based probability samples would inform the development of appropriate community-based services and supports.
Compared to non-Hispanic white individuals, assistive technology (AT) utilization is lower among Hispanic individuals.1–7 In the US, Spanish is the 2nd most frequently spoken language. Greater than ...one-fifth of Spanish-speaking households are limited English proficiencty (LEP) households (i.e., all individuals over age 14 in the household speak English less than "very well").8 Availability of AT materials in Spanish is one factor influencing knowledge about and utilization of AT among Spanish-speakers.
To examine the availability of Spanish-language AT information on state AT program websites and to assess the relationship between availability and state demographic and linguistic characteristics.
In 2018, we evaluated 56 state and territory AT program websites for the availability of AT information in Spanish. We calculated 4 measures (US Hispanic population in the state/territory; Hispanic individuals as a proportion of state population; overall Spanish-speaking households, and Spanish-speaking, limited English proficient households) from the 2016 American Community Survey and created ranked lists for each measure. Point biserial (rpb) correlations were calculated to test associations between each measure and availability of AT information in Spanish on each program’s website.
Sixteen program websites (15 states, 1 territory) provided access to Spanish-language AT information. None of the 4 measures were strongly associated with this outcome (rpb ranged from 0.30 to 0.42). For any of the 4 measures, no more than half of states in the top 10 ranks offered online access to AT information in Spanish.
Improving the online availability of AT information in Spanish is necessary to increase equity in AT utilization among Spanish-speaking people with disabilities.
Senior wellness fairs (SWFs) offer a unique opportunity for community health promotion and interprofessional education (IPE). The authors describe and evaluate the impact of a 3-year, ...university-community SWF collaboration on interprofessional competencies among students across multiple professional programs. Participation in the SWF enhanced student knowledge and skills in providing health promotion information to older adults in an interprofessional, collaborative setting as indicated by mean scores on the Perceived Learning Outcomes Survey, an instrument developed for this project. Open-ended data highlighted aspects of the SWF that students found most useful (interaction with seniors, community resources, interprofessional learning, and self-awareness) and most challenging (communication barriers, limited opportunity for interaction, and physical environment). Pre- and posttest scores on the Multidisciplinary SWF Practice Learning Quiz, another instrument developed for this project, illustrated improvement in student understanding of other professions and the importance of interprofessional cooperation to promote and maintain healthy aging. Implications and suggestions for structuring learning opportunities that combine community health promotion practice and interprofessional learning are discussed.
This article examines the narratives of 57 older gay women about their experiences in gay women's bars in the United States during the pre-Stonewall era (1945-1969). Cartier's (2010) concept of ..."theelogy" is used to develop two parallel theories that illustrate the meaning of the bars for these women. Christian rituals are used to outline the socioreligious significance of the bars, while achieving self-acceptance is expressed through language that illustrates interconnectedness (including "to see each other" and "to have each other"). The article closes by addressing the significance of these theories and this approach to spirituality for the field of gerontology.
Social Security is arguably the most successful social program in American history. It, along with Medicare and Workers Compensation, is the foundation of economic and health security for the ...elderly, people with disabilities, women, minorities and, indeed, all American wage earners and families. By spreading financial risk over a large pool of people, these programs collectively known as social insurance - offer all of us protection against life's difficulties.Despite widespread reliance on these programs, many business and political interests have engaged in a concerted, decades-long campaign to undermine confidence in them. Today, a large proportion of Americas young people are convinced that Social Security will not be there for them when they retire. As a result, younger Americans are more likely to see radical changes as necessary reforms. In addition, institutionalized ageism makes teaching about issues such as Social Security and Medicare problematic since young people feel distanced from older adults and their concerns.""Social Insurance, Social Justice, and Social Change"" offers such a resource. Featuring the voices of esteemed scholars from a wide cross-section of disciplines including gerontology, public health, social work, sociology, political science, and more, this comprehensive volume reviews the history of social programs and provides a framework for understanding current policy debates. Throughout, it explores social insurance programs and their relation to social inequality and social justice.
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