Benjamin C Schwartzman, Michele A Schutz, Erik W Carter, Elise D McMillan
{"title":"Virtual Community Conversations as Catalysts for Improving Transitions for Youth With Intellectual and Developmental Disabilities.","authors":"Benjamin C Schwartzman, Michele A Schutz, Erik W Carter, Elise D McMillan","doi":"10.1352/1934-9556-62.4.306","DOIUrl":"10.1352/1934-9556-62.4.306","url":null,"abstract":"<p><p>Youth with intellectual and developmental disabilities (IDD) aspire to participate in a variety of activities after high school, such as attaining paid employment, enrolling in postsecondary education, being involved in their communities, living independently, and building friendships. However, complex and longstanding transition barriers require comprehensive solutions that are tailored to a local community's unique needs and available resources so that local youth with IDD may achieve their desired outcomes. This article presents \"virtual community conversations\" as a promising approach for bringing together local communities to tackle barriers to good outcomes for residents with IDD. Attendees were able to effectively generate innovative recommendations for addressing issues in their local communities. We offer recommendations for enhancing and extending implementation of this approach.</p>","PeriodicalId":47489,"journal":{"name":"Intellectual and Developmental Disabilities","volume":"62 4","pages":"306-322"},"PeriodicalIF":1.6,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141789422","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Reflections on How What We Say, Do, and Acknowledge as Intellectual and Developmental Disability Researchers Matters.","authors":"Karrie A Shogren","doi":"10.1352/1934-9556-62.4.247","DOIUrl":"10.1352/1934-9556-62.4.247","url":null,"abstract":"<p><p>This article highlights reflections by the author on the importance of considering what we say, do and acknowledge in intellectual and developmental disability research. The goal is to advance thinking that can lead to personal and collective change in our approaches to truly share power and elevate the expertise of people with lived experience with intellectual and developmental disabilities in the movement for equity, inclusion, and disability justice. Implications for inclusive research, policy, and practice are discussed as is the need to engage in personal reflection and build new partnerships for collective change.</p>","PeriodicalId":47489,"journal":{"name":"Intellectual and Developmental Disabilities","volume":"62 4","pages":"247-259"},"PeriodicalIF":1.6,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141789420","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Meghan M Burke, Megan Best, W Catherine Cheung, Leann Smith DaWalt, Julie Lounds Taylor
{"title":"Exploring the Involvement of Autistic Youth in Decision Making About Services.","authors":"Meghan M Burke, Megan Best, W Catherine Cheung, Leann Smith DaWalt, Julie Lounds Taylor","doi":"10.1352/1934-9556-62.4.323","DOIUrl":"10.1352/1934-9556-62.4.323","url":null,"abstract":"<p><p>Although services are critical for many transition-aged youth, it is unclear the extent to which autistic youth participate in decisions about their services. By exploring the perceptions of autistic youth about their role in services, interventions can be developed to improve their participation. In this study, we interviewed 43 transition-aged youth with autism to explore their involvement in decisions about services. Most youth reported not being involved in decision making about the types and modalities of disability services. When youth were involved in decisions, the services were often related to education. Although youth reported that their parents typically spearheaded decisions about services, youth also reported that their parents often listened to their input. Implications for research, policy, and practice are discussed.</p>","PeriodicalId":47489,"journal":{"name":"Intellectual and Developmental Disabilities","volume":"62 4","pages":"323-333"},"PeriodicalIF":1.9,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13085781/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141789418","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Andrew S Buck, Richard Chapman, Gloria L Krahn, Christine Brown, Braden Gertz, Susan M Havercamp
{"title":"Research About Us, With Us: An Inclusive Research Case Study.","authors":"Andrew S Buck, Richard Chapman, Gloria L Krahn, Christine Brown, Braden Gertz, Susan M Havercamp","doi":"10.1352/1934-9556-62.4.260","DOIUrl":"10.1352/1934-9556-62.4.260","url":null,"abstract":"<p><p>Inclusive research combines the expertise of academically trained researchers with the lived experience of individuals with disabilities to render results that are more accessible, accountable, and meaningful to the disability community. In this case study, adults with intellectual and developmental disabilities (IDD) contributed as co-researchers to a series of studies on mental health of adults with intellectual disability. The research model, specific engagement strategies, and lessons learned are shared. Feedback from members of the research team suggests that including adults with IDD as co-researchers benefited investigators, co-researchers with IDD, and project outcomes. Our case study emphasizes the valuable contributions of research partners with IDD and provides a model that may be adapted and utilized by researchers to enhance their practice.</p>","PeriodicalId":47489,"journal":{"name":"Intellectual and Developmental Disabilities","volume":"62 4","pages":"260-273"},"PeriodicalIF":1.6,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141789421","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Carol Britton Laws, Amy Hewitt, Daniel A Boamah, Dorothy Hiersteiner, Julie E D Kramme, Jack Reagan
{"title":"Direct Support Professionals: Diversity, Disparities, and Deepening Crisis.","authors":"Carol Britton Laws, Amy Hewitt, Daniel A Boamah, Dorothy Hiersteiner, Julie E D Kramme, Jack Reagan","doi":"10.1352/1934-9556-62.3.174","DOIUrl":"10.1352/1934-9556-62.3.174","url":null,"abstract":"<p><p>In the United States, direct support professionals (DSPs) support people with intellectual and developmental disabilities (IDD) so they can live in the community. Thirty years of deinstitutionalization and the development of community living options would not have been possible without DSPs. Although life for people with IDD improved greatly, working conditions, wages/benefits, demands, stress/burnout, and trauma experienced by DSPs have worsened. Turnover and vacancy rates threaten the availability of community supports for too many people with IDD. DSPs from diverse racial, ethnic, linguistic, and cultural backgrounds face significant workplace disparities. These issues were discussed during the Research and Training Center on Community Living's 2022 State of the Science Conference. We propose important research questions needing solutions to continue constructively addressing these critical issues.</p>","PeriodicalId":47489,"journal":{"name":"Intellectual and Developmental Disabilities","volume":"62 3","pages":"174-185"},"PeriodicalIF":1.6,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141158422","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sheryl A Larson, Joseph Caldwell, Gregory Robinson, Quinn Oteman
{"title":"Housing and Long-Term Services and Supports for People With Intellectual or Developmental Disabilities From Racially and Culturally Minoritized Communities.","authors":"Sheryl A Larson, Joseph Caldwell, Gregory Robinson, Quinn Oteman","doi":"10.1352/1934-9556-62.3.200","DOIUrl":"10.1352/1934-9556-62.3.200","url":null,"abstract":"<p><p>This article describes research on the places people with intellectual and developmental disabilities (IDD) live and disparities in housing and long-term services and supports (LTSS) outcomes for people with IDD from racially and culturally minoritized groups. It also summarizes the conclusions and recommendations of the Housing and Long-Term Services and Supports strand of the 2022 State of the Science Conference on the Intersection of Diversity, Equity and Inclusion and Supports and Services for People with IDD, identifies limitations of the available research and recommends strategies to improve research, knowledge translation, and practices.</p>","PeriodicalId":47489,"journal":{"name":"Intellectual and Developmental Disabilities","volume":"62 3","pages":"200-210"},"PeriodicalIF":1.6,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141158424","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Criminal Justice and People With Intellectual and Developmental Disabilities.","authors":"Roger J Stancliffe, Beverly L Frantz","doi":"10.1352/1934-9556-62.3.211","DOIUrl":"10.1352/1934-9556-62.3.211","url":null,"abstract":"<p><p>People with intellectual and developmental disabilities (IDD) are overrepresented in the criminal justice system both as victims/survivors and as offenders. The needs and circumstances of individuals from underserved communities have received scant attention in the literature. Stakeholders met online at the 2022 State of the Science Conference on Community Living to discuss criminal justice and to identify goals for research involving people with IDD. The group focused more on victimization and less on offenders. Victimization issues examined included prevalence, people from underserved communities, sexual victimization, consequences of victimization, victim compensation, prevention, and risk reduction. Issues regarding offenders included prevalence, people from underserved communities, and competency to stand trial. Future directions are proposed for research on victimization and on offenders.</p>","PeriodicalId":47489,"journal":{"name":"Intellectual and Developmental Disabilities","volume":"62 3","pages":"211-224"},"PeriodicalIF":1.6,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12360897/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141158319","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
John Butterworth, Jean E Winsor, Esther Kamau, Alberto Migliore, Danielle Mahoehney
{"title":"The State of Employment for People With IDD: Implications for Practice, Policy, and Equity.","authors":"John Butterworth, Jean E Winsor, Esther Kamau, Alberto Migliore, Danielle Mahoehney","doi":"10.1352/1934-9556-62.3.225","DOIUrl":"10.1352/1934-9556-62.3.225","url":null,"abstract":"<p><p>Meaningful progress in improving employment outcomes for people with intellectual and developmental disabilities continues to be elusive, despite 40 years of investment in research, policy, and supports. This article reviews the current state of employment for individuals with intellectual and developmental disabilities (IDD) and describes policy, practice, and individual factors that influence employment outcomes. Research suggests the need for a holistic approach to change that addresses systems-level strategy, policy, and fiscal investment while strengthening individual experiences with employment and related day services. Recommendations address strengthening the implementation of employment policy, developing pathways to employment, and engaging individuals with IDD and, in particular, individuals with diverse social characteristics in reflecting on the quality of their experiences and supports.</p>","PeriodicalId":47489,"journal":{"name":"Intellectual and Developmental Disabilities","volume":"62 3","pages":"225-240"},"PeriodicalIF":1.6,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141158508","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Matthew Bogenschutz, Khalilah Robinson Johnson, Sarah Hall, Sarah Lineberry, Joseph Rand, Zach Rossetti, Sehrish Shikarpurya, Renata Ticha
{"title":"An Equity-Based Research Agenda to Promote Social Inclusion and Belonging for People With IDD.","authors":"Matthew Bogenschutz, Khalilah Robinson Johnson, Sarah Hall, Sarah Lineberry, Joseph Rand, Zach Rossetti, Sehrish Shikarpurya, Renata Ticha","doi":"10.1352/1934-9556-62.3.186","DOIUrl":"10.1352/1934-9556-62.3.186","url":null,"abstract":"<p><p>Having a sense of social inclusion and belonging, typically characterized by our personal relationships and community participation, is the central essence of life for most people, yet it remains elusive for many people with intellectual and developmental disabilities (IDD). This article summarizes the work of a diverse group of researchers and advocates to propose 6 big-picture, equity-based goals to drive future research in the field: (1) understanding the role of intersectionality, (2) understanding intimate relationships, (3) promoting formation of communities of care to support social inclusion, (4) understanding life course trajectories of social inclusion, (5) understanding social inclusion in virtual spaces, and (6) understanding how to promote social inclusion in the entire research process.</p>","PeriodicalId":47489,"journal":{"name":"Intellectual and Developmental Disabilities","volume":"62 3","pages":"186-199"},"PeriodicalIF":1.6,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141158318","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"A Research Agenda to Support Families of People With Intellectual and Developmental Disabilities With Intersectional Identities.","authors":"Lynda Lahti-Anderson, Yoshiko Kardell, Sarah Hall, Sandra Magaña, Michelle Reynolds, Jeanette Córdova","doi":"10.1352/1934-9556-62.3.162","DOIUrl":"10.1352/1934-9556-62.3.162","url":null,"abstract":"<p><p>Family members provide significant practical and emotional support to people with intellectual and developmental disabilities (IDD) across the lifespan. In September 2022, the State of the Science Conference on Community Living: Engaging Persons With Intellectual and Developmental Disabilities From Underserved Racial, Ethnic, Linguistic, and Cultural Groups in Research was held. This article summarizes the efforts of the workgroup that developed research goals related to supporting families of people with IDD. The focus was on families with intersectional identities and minoritized communities. Recommended areas of future research include exploratory research to better understand the experiences of these families, perspectives of families with intersectional identities about the formal support system, funding for family support and services, and inclusive research strategies.</p>","PeriodicalId":47489,"journal":{"name":"Intellectual and Developmental Disabilities","volume":"62 3","pages":"162-173"},"PeriodicalIF":1.6,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11286222/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141158246","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}