"Starting to Live a Life": Understanding Full Participation for People With Disabilities After Institutionalization.

IMPORTANCE: A key objective of the Americans With Disabilities Act of 1990 (ADA) is community integration; yet, nearly 30 yr later, little is known about the participation of people with disabilities who transition from institutions to the community. OBJECTIVE: To understand how people with disabilities describe full participation after transitioning from an institution to the community and to identify environmental barriers and facilitators to participation during and after this transition. DESIGN: The ADA-Participatory Action Research Consortium (ADA-PARC), a collaboration among researchers, people with disabilities, and community organizations, is implementing a multimethod, participatory action research study of participation among people with disabilities posttransition. This article presents qualitative findings from semistructured interviews collected as part of the larger ADA-PARC project. SETTING: ADA-PARC community partners across the United States. PARTICIPANTS: One hundred fifty-three adults with disabilities. OUTCOMES AND MEASURES: We used a semistructured interview guide to ask participants about their experiences during and after transition to the community. RESULTS: We identified four themes: (1) the process of transition as ongoing rather than a single event, (2) access to everyday occupations as full participation and what fully represents "living a life," (3) environmental barriers to participation, and (4) social identity as participation as the transformative process of moving from the disempowering isolation of the institution to being integrated into the community. CONCLUSIONS AND RELEVANCE: As people with disabilities transition into community settings, they require ongoing supports to facilitate their full, long-term participation. WHAT THIS ARTICLE ADDS: People with disabilities reported that transitioning from institutions to the community was itself not enough to support their full community participation; rather, they viewed transition as an ongoing process, and they needed services and supports to fully participate. Occupational therapy practitioners working in institutional and community settings can partner with local disability advocacy communities to support their clients' sense of identity and self-confidence during and after transition to the community.

Are local offices of emergency management prepared for people with disabilities? Results from the FEMA Region 9 Survey.

OBJECTIVE: To assess disaster planning of local Offices of Emergency Management (OEM) with respect to people with disabilities (PWD). DESIGN: A cross-sectional study of local OEM from Federal Emergency Management Agency (FEMA) Region 9 (N = 61) was conducted using an internet-based survey. The primary outcome was the adoption of emergency management recommendations by the Department of Justice (DOJ) and FEMA in applying Title II of the Americans with Disabilities Act (ADA). RESULTS: OEM implementation of ADA requirements was generally suboptimal. While 63 percent reported that plans addressed the needs of PWD, only 41 percent reported detailed operating procedures for PWD. Training of staff to ensure that they were knowledgeable on the ADA requirements for inclusivity was rarely conducted. While accessible shelters and transportation were often identified, accessible communication strategies, including emergency notifications, were often lacking; only 28 percent of OEMs reported availability of sign language interpreters at shelters. Shelters often allowed service animal access (62 percent), but fewer allowed access to personal assistants (39 percent). Engagement of the disability community, from plan development to community drills, was uncommon. While more than half (59 percent) of OEM felt clear about their responsibilities in providing equal access to PWD, only 23 percent reported having qualified staff and other resources necessary in order to meet those responsibilities. Participants cited the need for more training on the ADA requirements in order to better meet the needs of PWD. CONCLUSION: Strategies for improvement to assure inclusiveness of PWD in all phases of emergency management are needed.

Satisfaction, safety, and supports: Comparing people with disabilities' insider experiences about participation in institutional and community living.

BACKGROUND: Legislation and court decisions in the United States mandate the right to least restrictive community living and participation for people with disabilities, yet little research has examined differences in participation across institutional and community settings, or over time in the community post-transition. OBJECTIVE: As part of a multi-site participatory action research project examining participation, we examined the differences in quality of life in institutional and community living environments among people with disabilities. METHODS: We conducted surveys with adults with disabilities between 18 and 65 years-old that transitioned from institutions to the community in the United States within the last five years. This paper reports on findings for a diverse sample of 150 participants. RESULTS: We found significant differences between ratings of institutional and community experiences, with increased reports of satisfaction, personal safety, service access, and participation in community settings. We also found significant improvements in community integration and inclusion after transition to community living, although barriers to transportation and activity access often remained. CONCLUSIONS: This study of insider experiences of previously institutionalized people with disabilities illuminates important understandings of community participation, integration, and quality of life for the disability community in the United States.

The Guide to Community Preventive Services and Disability Inclusion.

INTRODUCTION: Approximately 40 million people in the U.S. identify as having a serious disability, and people with disabilities experience many health disparities compared with the general population. The Guide to Community Preventive Services (The Community Guide) identifies evidence-based programs and policies recommended by the Community Preventive Services Task Force (Task Force) to promote health and prevent disease. The Community Guide was assessed to answer the questions: are Community Guide public health intervention recommendations applicable to people with disabilities, and are adaptations required? METHODS: An assessment of 91 recommendations from The Community Guide was conducted for 15 health topics by qualitative analysis involving three data approaches: an integrative literature review (years 1980-2011), key informant interviews, and focus group discussion during 2011. RESULTS: Twenty-six recommended interventions would not need any adaptation to be of benefit to people with disabilities. Forty-one recommended interventions could benefit from adaptations in communication and technology; 33 could benefit from training adaptations; 31 from physical accessibility adaptations; and 16 could benefit from other adaptations, such as written policy changes and creation of peer support networks. Thirty-eight recommended interventions could benefit from one or more adaptations to enhance disability inclusion. CONCLUSIONS: As public health and healthcare systems implement Task Force recommendations, identifying and addressing barriers to full participation for people with disabilities is important so that interventions reach the entire population. With appropriate adaptations, implementation of recommendations from The Community Guide could be successfully expanded to address the needs of people with disabilities.

Emergency preparedness in a sample of persons with disabilities.

OBJECTIVE: The objective of this study was to characterize emergency preparedness in this vulnerable population, and to ascertain the role of the personal assistant (PA) and the potential impact of prior emergency experience on preparedness efforts. DESIGN: Cross-sectional Internet-based survey conducted in 2011. SETTING: Convenience sample. PARTICIPANTS: Two-hundred fifty-three community residents with cognitive and /or physical disabilities, all receiving personal assistance services. MAIN OUTCOME VARIABLES: Emergency preparedness, operationalized as responses to a seven-item scale. RESULTS: The mean score for the emergency preparedness scale was 2.32 (SD = 2.74), range 0-7. Even though 62.8 percent (n = 159) of the participants had previously experienced one or more large-scale emergencies, only 47.4 percent (n = 120) of the entire sample and 55.3 percent (n = 88) of those with actual emergency experience reported preparing an emergency plan. Sixty-three percent (n = 76) of those reporting a plan had involved their PA in its development. Participants who reported such involvement were significantly more likely to have higher scores on the emergency preparedness scale (p < 0.001). Participants who had experienced a prior emergency were also more likely to score higher on the emergency preparedness scale (p < 0.001). In general, participants reported limited attention to other basic preparedness recommendations: only 28 percent (n = 70) had prepared a "go-bag" with necessary supplies, 29 percent (n = 74) had developed a strategy for communicating with their PA during emergencies, and 32 percent (n = 81) had stockpiled emergency supplies. Of particular importance, only 26 percent (n = 66) had made alternative back-up plans for personal assistance. CONCLUSIONS: Involving the PA in the planning process and experiencing an emergency were both significantly associated with higher emergency preparedness scores in this sample of people living with disabilities. However, critical deficiencies in preparedness were noted, such as lack of back-up plans for replacing their PA. Despite a concerted national effort to improve preparedness in the population of people living with disabilities, important preparedness gaps remain. These findings highlight the need for additional study on emergency preparedness barriers in people living with disabilities so that effective strategies to reduce vulnerabilities can be identified.