Systemic barriers hinder person-centered home and community based services (HCBS): Perspectives of service users and professionals.

BACKGROUND: In response to the 2014 Final Settings Rule issued by the Centers for Medicaid and Medicare Services, home-and-community based services (HCBS) provider organizations strengthened person-centered (PC) planning for HCBS to improve participants' choice and control over their services. Despite the call for widespread adoption of PC services, systemic barriers influence service users' and professionals' experiences in receiving and delivering PC services. OBJECTIVE: This study describes the perspectives of HCBS professionals and users on systemic barriers that affect PC HCBS delivery. METHODS: Semi-structured interviews with 20 HCBS users and 22 HCBS professionals explored perspectives on providing and receiving PC HCBS as well as higher level systems challenges to providing PC services. Qualitative analysis focused on participants' perspectives of system-level issues. RESULTS: Qualitative analysis generated three themes: (1) Workforce considerations; (2) Resources and service access; and (3) Infrastructure for feedback. High direct service provider turnover rates, service-eligibility determination procedures, and waitlists affected service delivery. Participants highlighted a need for increased direct service provider compensation, access to higher-quality training, improved financial resources, and effective feedback infrastructures. Waiver flexibility due to the Covid-19 public health emergency allowed expanded service access and improved quality. CONCLUSION: Organizational and system-level issues hinder delivery of PC services. Increased flexibility and resource allocation for service provision, as demonstrated in the Covid-19 public health emergency response, should be sustained. HCBS users' suggestions for service-delivery improvements are consistent with recent state and organizational initiatives. HCBS improvements benefit from user-identified solutions in program development and implementation.

Online Delivery of the Individualized Reduction of Falls Intervention for Persons With Multiple Sclerosis Who Use a Wheelchair or Scooter Full-time: A Pilot Study.

BACKGROUND: People with multiple sclerosis (MS) who use a wheelchair or scooter full-time fall frequently; however, fall prevention programming that meets the unique needs of this population is limited. This study examined the preliminary efficacy of a group-based online fall prevention and management intervention designed specifically for people with MS. METHODS: This pre/post intervention, mixed-methods study included people with MS who used a wheelchair or scooter full-time, experienced at least 1 fall within the past year, and transferred independently or with minimal or moderate assistance. Participants engaged in a 6-week, online, individualized, multicomponent fall prevention and management intervention: Individualized Reduction of Falls-Online (iROLL-O). RESULTS: No statistically significant change in fall incidence occurred after iROLL-O. However, fear of falling significantly decreased (P < .01) and knowledge related to fall management (P = .04) and fall prevention and management (P = .03) significantly improved. Qualitative results indicated that participants valued the opportunity for peer learning and iROLL-O's attention to diverse influences on fall risk. CONCLUSIONS: This study is the first to examine the preliminary efficacy of an online fall prevention and management intervention for people with MS who use a wheelchair or scooter full-time. iROLL-O has promise, and participants found it valuable. Further efforts are needed to retain iROLL-O participants with lower confidence and functional mobility, and more research is needed to investigate the impact of the intervention on key outcomes over time.

A process evaluation of an on-line fall prevention and management program for individuals who use wheelchairs or scooters living with multiple sclerosis.

Background: Falls and resulting injury are a significant concern for individuals living with multiple sclerosis (MS) that use a wheelchair and/or scooter to support mobility. Effective fall prevention efforts are vital to support the health, wellbeing, and participation for these individuals. Aims: This study reports the findings from the process evaluation conducted in association with a pilot study evaluating the efficacy of Individualized Reduction of FaLLs-Online (iROLL-O), an online, group fall prevention, and management program specifically designed for community-based people living with multiple sclerosis (pwMS) who are full-time wheelchair or scooter users. Methods: A mixed-methods process evaluation was conducted, with specific attention to the impact of online delivery on intervention implementation, participant satisfaction, and mechanisms of change (MOC). Multiple data sources were utilized, including post-session and post-intervention participant and trainer feedback forms and participant qualitative interview data. Descriptive analysis was conducted using Microsoft Excel. Close-ended questions were analyzed by examining five-point Likert scale responses. Qualitative interview data was explored using thematic analysis. Results: Twelve participants and three trainers (one occupational therapist and two physical therapists) contributed to the study. Online delivery did not compromise session fidelity, which averaged 95%. No significant adaptations to the intervention were made during delivery. Participant satisfaction was high at 4.6/5.0. Post-course Trainer Feedback Forms indicate trainer satisfaction with the group dynamic, ability to address unique group needs, and program content. Reach improved with online delivery as transportation barriers were removed and recruitment from a broader geographic area was enabled. Three themes reflecting key MOC emerged from the analysis: group context, motivation for participant engagement, and the multifaceted nature of the program. The COVID-19 pandemic was identified as a contextual factor impacting community participation. Both participants and trainers identified the group dynamic as a strength. The trainers valued the program's flexibility in allowing them to address individual and/or group-specific fall prevention needs. Conclusion: Feedback from key stakeholders was essential to a meaningful process evaluation. Online delivery supported program implementation, including reach, and resulted in high levels of satisfaction among participants and trainers. Future iterations should aim to uphold the positive group context, recruit, and train skilled interventionists who are licensed as occupational or physical therapists and continue to provide the program's diverse approach to fall prevention and management.

"A Legitimate Place in the Profession": Author Reflections on the 2005 Disability Studies Special Issue.

IMPORTANCE: In 2005, the American Journal of Occupational Therapy published a special issue focused on disability studies. Contributing authors challenged readers to reflect on their practices and recommended ways to change the field, yet literature on the current state of the integration of disability studies into occupational therapy is scarce. OBJECTIVE: To engage the original authors of the 2005 special issue in an examination of perspectives on how disability studies perspectives have contributed to changes within occupational therapy and what work remains. DESIGN: The research team conducted semistructured interviews with 11 authors who published an article in the special issue. Interview transcripts were analyzed using thematic analysis. Triangulation of coders, multiple phases of data analysis, and member checking were used to establish trustworthiness. RESULTS: Five themes emerged from the data: (1) exposure to disability and disability studies, (2) impact of the special issue on occupational therapy, (3) changes observed in occupational therapy beyond the special issue, (4) challenges integrating disability studies into occupational therapy, and (5) disability studies-informed recommendations for occupational therapy. CONCLUSIONS AND RELEVANCE: Although the original contributing authors acknowledged the transformative impact of disability studies on their own practice and scholarship, the results suggest that disability studies remains outside mainstream occupational therapy scholarship. Exploring the connections and divergence between disability studies and fields such as occupational science could improve understanding of how disability studies concepts are defined and used in theory and practice. What This Article Adds: Since the publication of the original special issue in 2005, the field of disability studies has continued to influence occupational therapy, although more often in individual than in systemic ways. Work is needed to embrace a disability studies-informed critical and intersectional foundation for the profession and explore the ways in which occupational therapy can better partner with populations through a disability studies lens.

Disability Studies and Occupational Therapy: Renewing the Call for Change.

Disability studies (DS) is an interdisciplinary field grounded in a minority studies philosophy that approaches disability as a socially constructed phenomenon. The first special issue of the American Journal of Occupational Therapy on DS was published in 2005. The present issue serves as a follow-up to highlight opportunities for and examples of DS integration into occupational therapy education, research, and practice. Studies in this special issue reflect a DS approach to research that prioritizes lived experiences, critical approaches, and participatory methodologies. Reported interventions focus on changing societal barriers rather than remediating individual impairments and acknowledge instrumental activities of daily living often neglected by traditional research. Studies on educational practices in occupational therapy have found persistent issues around negative attitudes toward disability and many opportunities to better infuse disabilities studies into curricula. Revisiting DS as it applies to occupational therapy has shown that many of the issues and considerations raised in 2005 remain in the field today. Recommendations across articles in this special issue highlight that advocacy and working for broader social change are essential for occupational therapy practitioners, given ongoing occupational injustices for people with disabilities. Infusing DS ideas into occupational therapy can promote greater alignment with priorities of disability communities and spur professional change to dismantle oppressive structures and ideologies.

"The Bigger Picture": Occupational Therapy Practitioners' Perspectives on Disability Studies.

OBJECTIVE: This qualitative study explored occupational therapy practitioners' perspectives about integrating principles from the field of disability studies (DS) into clinical education and practice. METHODS: After a conference presentation about DS, three simultaneous focus groups were conducted with 27 occupational therapy practitioners. A constant comparative, grounded-theory approach was used to identify themes across groups. RESULTS: Identified themes included convergences and divergences between the profession of occupational therapy and the field of disability studies, influence of perspectives of disability on service delivery, clinician navigation of systemic barriers, and incorporation of DS-aligned intervention strategies into practice. CONCLUSION: Despite points of alignment, occupational therapy has not fully addressed DS critiques. Practitioners recognized professional, systemic, and societal barriers and the need for more educational experiences, resources, and professional reflexivity and dialogue to inform the integration of DS concepts into practice.

Chronic expression of monocyte chemoattractant protein-1 in the central nervous system causes delayed encephalopathy and impaired microglial function in mice.

Increased central nervous system (CNS) levels of monocyte chemoattractant protein 1 [CC chemokine ligand 2 (CCL2) in the systematic nomenclature] have been reported in chronic neurological diseases such as human immunodeficiency virus type 1-associated dementia, amyotrophic lateral sclerosis, and multiple sclerosis. However, a pathogenic role for CCL2 has not been confirmed, and there is no established model for the effects of chronic CCL2 expression on resident and recruited CNS cells. We report that aged (>6 months) transgenic (tg) mice expressing CCL2 under the control of the human glial fibrillary acidic protein promoter (huGFAP-CCL2hi tg+ mice) manifested encephalopathy with mild perivascular leukocyte infiltration, impaired blood brain barrier function, and increased CD45-immunoreactive microglia, which had morphologic features of activation. huGFAP-CCL2hi tg+ mice lacking CC chemokine receptor 2 (CCR2) were normal, showing that chemokine action via CCR2 was required. Studies of cortical slice preparations using video confocal microscopy showed that microglia in the CNS of huGFAP-CCL2hi tg+ mice were defective in expressing amoeboid morphology. Treatment with mutant CCL2 peptides, a receptor antagonist and an obligate monomer, also suppressed morphological transformation in this assay, indicating a critical role for CCL2 in microglial activation and suggesting that chronic CCL2 exposure desensitized CCR2 on microglia, which in the CNS of huGFAP-CCL2hi tg+ mice, did not up-regulate cell-surface expression of major histocompatibility complex class II, CD11b, CD11c, or CD40, in contrast to recruited perivascular macrophages that expressed enhanced levels of these markers. These results indicate that huGFAP-CCL2hi tg+ mice provide a useful model to study how chronic CNS expression of CCL2 alters microglial function and CNS physiology.