Advancing Diversity, Equity, and Inclusion in Developmental Disabilities: The Essential Role of Leadership for Cultural and Linguistic Competence

ABSTRACT There is a clear and compelling need to approach equity, diversity, and inclusion not as problems to be solved,but rather as opportunities to be realized. The Developmental Disabilities Bill of Rights and Assistance Act of 2000,states the need for cultural competence, specifically to ensure that supports and services “are provided in a manner that assure maximum participation and benefit for persons with IDD.” Cultural and linguistic competence (CLC) are evidence-based or proven practices that reduce disparities, advance diversity, and promote equity. Achieving CLC requires strong and informed leadership to spark the necessary changes within systems, organizations, and practice. It requires responding effectively to race, ethnicity, culture, and other intersecting identities in leadership development and opportunities. There is a need for leaders with the commitment, energy, knowledge, and skills to do the hard work of advancing and sustaining CLC in systems, organizations, and programs that develop policy, provide supports and services, conduct research, and advocate with persons with IDD and their families. It is important that leaders have the insight, courage, and skill to step out in the forefront of this complex set of dynamics and be the force to gather the collective will to make change. There are two distinct yet related challenges that continue to confront the IDD network: 1) the lack of capacity across all aspects of the network to develop, nurture, and support people who are prepared to lead efforts that advance and sustain CLC; and 2) there are few members of racial, ethnic, and cultural groups, including people with disabilities from these groups, presently occupying or being groomed to become leaders and assume leadership positions network-wide

Evaluation of telemental health services for people with intellectual and developmental disabilities: protocol for a randomized non-inferiority trial

Abstract Background Roughly 40% of those with intellectual/developmental disabilities (IDD) have mental health needs, twice the national average. Unfortunately, outpatient mental health services are often inaccessible, increasing reliance on hospital-based services. While telemental health services hold potential to address this gap, little is known about the effectiveness of telemental health for the diversity of persons with IDD, especially as it relates to crisis prevention and intervention services. Accordingly, the aims of this study are to: (1) compare telemental health versus in-person crisis prevention and intervention services among people with IDD; and (2) understand if outcomes vary across subpopulations, in order to identify potential disparities. Methods This study will take place within START (Systemic, Therapeutic, Assessment, Resources, and Treatment), a national evidence-based model of mental health crisis prevention and intervention for people with IDD. A total of 500 youth and adults, located across nine states, will be randomized 1:1 to telemental health vs. in-person. Participant inclusion criteria are ages 12–45 years, living in a family setting, and newly enrolled (within 90 days) to START. Outcomes will be assessed, using a non-inferiority design, for up to 1 year or until discharge. The intervention is comprised of four components: (1) outreach; (2) consultation/coping skills; (3) intake/assessment; and, (4) 24-hour crisis response. The in-person condition will deliver all components in-person. The telemental health condition will deliver components 1 & 2, via telephonic or other communication technology, and components 3 & 4 in-person. Outcomes include mental health crisis contacts, mental health symptoms, emergency psychiatric service use, perceived quality of mental healthcare, and time to discharge. Discussion To our knowledge, this will be the first trial of a telemental health crisis program for the IDD population. The study will be executed by an interdisciplinary team of experts that includes persons with lived experience of disability. Understanding the benefits of specific telemental health methods has important implications to the design of interventions. This telemental health study offers promise to address disparities in access to mental health care for people with IDD across diverse racial, ethnic, linguistic, and cultural groups. Trial Registration Clinicaltrials.gov ( #NCT05336955 ; Registration Date: 4/20/2022)