Transition to retirement: The lived experiences of adults with intellectual disabilities.

BACKGROUND: Adults with intellectual disabilities are living longer and experiencing retirement. However, research about retirement experiences is limited. METHOD: This qualitative study used semi-structured interviews with 10 retired/retiring U.S. adults with intellectual disabilities and an ally of their choice. RESULTS: Participants described factors that pushed or pulled them into retirement, such as health issues or wanting to spend more time with family. Individuals in community work settings described greater self-determination in their decision to retire. Regardless of reasons for retiring, all participants described initial difficulties with adjusting to retirement but over time people's situation, including their mental and physical health, reportedly improved. CONCLUSION: Retirement is a significant life transition. More attention is needed about planning and developing age-appropriate and person-cantered inclusive retirement options for older adults with intellectual disabilities, similar to the transition into adulthood and work life.

Direct Support Professionals and COVID-19 Vaccination: A Comparison of Vaccinated and Unvaccinated Direct Support Professionals.

Direct support professionals (DSPs) may be at increased risk of contracting COVID-19 due to the proximal nature of their work. In response to the pandemic a three-wave study was launched to understand experiences of DSPs. An on-line national survey found that 70% of DSPs were vaccinated. Vaccinated DSPs were older and had higher education levels. Among the unvaccinated, 56% reported concerns about COVID-19 vaccination safety. Unvaccinated DSPs were more likely to report that the people they supported were also unvaccinated. Encouraging DSPs to get vaccinated to protect the people they support is essential. Paid time off, arranging for vaccinations, and setting an expectation for vaccination may encourage vaccination uptake among DSPs.

Direct Support Professionals and COVID-19 Vaccination: A Comparison of Vaccinated Early Adopters and In-Betweeners.

Direct support professionals (DSPs) are at increased risk of contracting COVID-19. A four-wave survey series was conducted, in part, to understand DSPs' COVID-19 vaccination experiences. Fourth wave data were used to compare those vaccinated against COVID-19 when they became eligible (early adopters) and those waiting at least three months before vaccination (in-betweeners). Findings indicated that in-betweeners were more likely to be female, younger, and people of color with lower education levels and annual incomes, with employers requiring COVID-19 vaccination to remain employed. COVID-19 vaccination motivators included protection for self, family, or people supported; an employer who mandated COVID-19 vaccination; and having had COVID-19 or knowing someone who did.

The Direct Support Workforce: An Examination of Direct Support Professionals and Frontline Supervisors During COVID-19.

Direct support professionals (DSPs) and frontline supervisors (FLSs) have critical roles in home and community-based services for people with intellectual and developmental disabilities. Low wages and high levels of responsibility created a long-term crisis in recruitment and retention and are exacerbated by the COVID-19 pandemic. A national sample of DSPs and FLSs were compared on demographics and work-related circumstances using data from the third Direct Support Workforce COVID-19 Survey. Significant differences were found in demographics, hours worked, wages, wage augmentations, and quality of work-life. Policy recommendations to address the worsening workforce crisis are provided.

Direct Support Professional and Frontline Supervisor Perspectives on Work-Life in a Pandemic.

Direct support professionals (DSPs) and frontline supervisors (FLSs) play an invaluable role in delivering home and community-based services to people with intellectual and developmental disabilities (IDD). DSPs provide support with employment, community living, developing social connections, health and well-being, and many other areas. FLSs' primary responsibility is to provide direction and guidance to DSPs in their work; however, they also frequently provide direct support to people with IDD. This workforce has been in crisis with high turnover and vacancy which threaten the inclusion of individuals with disabilities in their communities. The COVID-19 pandemic exacerbated an already fraught situation.

A Systematic Review of U.S. Studies on the Prevalence of Intellectual or Developmental Disabilities Since 2000.

This systematic review examined 14 U.S. studies published since 2000 reporting prevalence estimates for intellectual disability (ID) or developmental disability (DD). Prevalence rates for children were between 11.0 and 13.4 per 1,000 for ID and between 45.8 and 69.9 per 1,000 for DD using data from 2010 or later. A 2015 Ohio study of adults yielded a prevalence estimate of 41.0 per 1,000 for DD. The only study of ID in adults and the only study incorporating DD Act definitions used the 1994/1995 NHIS-D yielding prevalence estimates for ID and/or DD of 38.2 per 1,000 for children birth to 5 years, 31.7 for children 6 to 18 years, and 7.9 per 1,000 for adults. Notable differences in prevalence estimates by age and operational definition have important implications for public policy and research. Serious surveillance gaps limit our understanding of service utilization rates, unmet needs, and health and other outcomes for adults with ID or DD.

The state of the science of health and wellness for adults with intellectual and developmental disabilities.

Historically, people with intellectual and developmental disabilities (IDD) have experienced health disparities related to several factors including: a lack of access to high quality medical care, inadequate preparation of health care providers to meet their needs, the social determinants of health (e.g., poverty, race and gender), and the failure to include people with IDD in public health efforts and other prevention activities. Over the past decade, a greater effort has been made to both identify and begin to address myriad health disparities experienced by people with IDD through a variety of activities including programs that address health lifestyles and greater attention to the training of health care providers. Gaps in the literature include the lack of intervention trials, replications of successful approaches, and data that allow for better comparisons between people with IDD and without IDD living in the same communities. Implications for future research needed to reduce health disparities for people with IDD include: better monitoring and treatment for chronic conditions common in the general population that are also experienced by people with IDD, an enhanced understanding of how to promote health among those in the IDD population who are aging, addressing the health needs of people with IDD who are not part of the disability service system, developing a better understanding of how to include people with IDD in health and wellness programs, and improving methods for addressing the health care needs of members of this group in an efficient and cost-effective manner, either through better access to general medical care or specialized programs.