Intellectual and Developmental Disabilities最新文献

The purpose of this study is to lay a foundation for illustrating the importance of longitudinal data collection by sharing the results of the Independent Monitoring for Quality (IM4Q) program in Pennsylvania designed to collect data over time on the quality of services for adults with intellectual and developmental disabilities. In this article, we report on the history and characteristics of the IM4Q program, describe the key variables of interest, and highlight the trends in the key variables over 3 years of data collection (2013, 2016, and 2019). The descriptive results indicate mixed trends for the three areas of focus: comparable rates of people employed in community-based settings, less support-related choice, and better everyday choice-making outcomes.

Obtaining and maintaining work can be a challenge for many people with intellectual disability (ID) and parents can play an integral role in supporting their child to secure employment. The purpose of this qualitative research study was to understand factors that influence parents' decisions to create a business for their adult child with ID. Nine parents were identified through purposeful and snowball sampling. Parents participated in individual interviews and data were analyzed using thematic analysis. Our findings suggest that school experiences, expectations for work, presence of specialized support, and encouragement and suggestions from others influenced parents' decisions to create a business. In light of the findings, we discuss how parents' previous experiences and responsiveness influenced the creation of the business.

People with IDD are often denied choices based on concerns for their safety, including to prevent and reduce injuries. This study examined the relationship between the service-related choices of people with IDD and their injuries. In this cross-sectional analysis, we analyzed secondary Personal Outcome Measures® interview data and injury data from 251 people with IDD. Our findings revealed, controlling for all demographics, for every one-unit increase in service-related choice outcomes present, there was a 35% decrease in injuries. Expanding people with IDD's choice-making opportunities may result in fewer injuries. We must move beyond custodial models of care and ensure people with IDD are supported to live the lives of their choosing.

The rapid growth of inclusive higher education opportunities for young adults with intellectual and developmental disabilities (IDD) has contributed to improvements in students' academics, employment, social, and independent living outcomes. However, many college programs lack a focus on functional literacy, a critical skill for success in adulthood. This study evaluated whether a functional literacy intervention was associated with an increase in the percentage of reading comprehension strategies implemented accurately for college students with IDD. A multiple probe across functional literacy stimuli (e.g., academic assignments, employment emails, social text messages) was replicated across four students. Results indicated an association between the intervention and percentage of strategies implemented accurately. Suggestions for future research and implications for practice are provided.

Special education advocacy programs support families to secure services for their children with intellectual and developmental disabilities. Although research demonstrates the efficacy of one such program (the Volunteer Advocacy Project), its effectiveness when replicated by others is unknown. Replication research is critical to ensure that programs can remain effective. The purpose of this study was to explore the adaptation process for two agencies that replicated an advocacy program. Quantitative and qualitative data were collected to examine feasibility, acceptability, and effectiveness. Although it took resources to replicate the advocacy program, agencies reported ongoing implementation would be easier once adaptations were completed. The adapted programs were effective in increasing participants' knowledge, empowerment, advocacy, and insiderness. Implications for research and practice are discussed.

Although social groups have "insiders," this construct has not been measured within the disability advocacy community. Examining 405 individuals who applied for an advocacy training program, this study examined the nature of insiderness within the disability advocacy community and ties to individual roles. Participants showed differences in mean ratings across 10 insider items. A principal components analysis revealed two distinct factors: Organizational Involvement and Social Connectedness. Non-school providers scored highest on Organizational Involvement; family members/self-advocates highest on Social Connectedness. Themes from open-ended responses supported the factors and showed differences in motivation and information sources across insiderness levels and roles. Qualitative analysis revealed two additional aspects of insiderness not addressed in the scale. Implications are discussed for future practice and research.

This qualitative study explored employment experiences and perceived satisfaction of young adults with Down syndrome (DS) who recently exited high school, as reported by their caregivers (n = 101). We analyzed caregivers' open-ended responses about their young adults' type of employment (n = 52 were employed) and identified themes associated with reported satisfaction (for both employed and unemployed). Natural supports were key to caregiver satisfaction; few opportunities for paid, community-based employment and long waiting lists for formal services were related to caregiver dissatisfaction. Job fit (e.g., hours, responsibilities, location), socialization opportunities, and independence were related to caregiver and perceived young adult (dis)satisfaction. These findings highlight unmet service needs, including assistance with finding a job that is the right fit for the individual with DS.

Increasing employment outcomes for individuals with intellectual and developmental disabilities (IDD) remains an enduring emphasis of research, policy, and practice. Parents are often primary partners in the pursuit of meaningful work for their family members with IDD. This qualitative study examined the views of 55 parents regarding the importance of this pursuit and the features of employment that matter most to them. Participants discussed a range of reasons they valued employment for their family members with IDD, including factors that extended beyond a paycheck. Likewise, they described an array of features that they considered to be important to their family member thriving in the workplace (e.g., inclusivity, match with interests, opportunities for growth). We offer recommendations for promoting integrated employment among families and conceptualizing employment outcomes within future research.

The right to science has been identified in multiple human rights treaties; however, there has not been a clear framework for how governments or research organizations can advance this right particularly ensuring equitable engagement of people with intellectual disability (ID) in the process of scientific research. Although the feasibility and impacts of engaging people with ID in the process of science have been repeatedly demonstrated there remain systemic barriers including ableism, racism, and other systems of oppression that sustain inequities. Researchers in the ID field must take steps to dismantle systemic barriers and advance participatory approaches that advance equity in the process and outcomes of science.