Reconciling the Past & Changing Future: Engaging young adults wtih IDD-MH and researchers in CER/comparative effectiveness research

2021

It is estimated that 40 to 60% of people with intellectual and developmental disabilities (IDD) experience a co-occurring mental illness, a prevalence rate that nears seven times greater than those without IDD. Despite the prevalence of mental health needs among people with IDD, little is known about the approaches that can optimize the lifelong mental health (MH) of people with IDD, leading to potential over reliance on seclusion, restraint, and medication as treatments. Repeated and extended hospitalizations/institutionalization threaten the human rights and autonomy of people with IDD, exacerbate mental and physical health problems, reduce capacity to be employed, engage in leisure/ exercise, and live within the communities of their choice. There is a critical need to provide timely, accessible, and effective MH interventions to young adults (YA) with IDD to ensure their transition to adulthood is successful from the start. There is little to no comparative effectiveness research (CER) in the field of IDD and MH. People with IDD are among the largest recipients of psychopharmacologic MH treatment, although little evidence is available to support these practices. There is a critical need to expand research in partnership with YA adults with IDD-MH and their families to provide evidence for interventions and outcomes valued by this population. Research has historically excluded people with IDD-MH, and as a consequence researchers continue to be informed by erroneous assumptions regarding the abilities, interests, and needs of YA with IDD-MH. This is further compounded by intersectionality. Individuals with IDD-MH face greater degrees of exclusion due to their membership in multiple social groups that are subjected to marginalization and discrimination because of overlapping racial, ethnic, gender, and disability identities. Increasing researcher knowledge of the harms associated with exclusion and forging a new path to rectify the past is an essential step toward reconciliation. A collaboration of the University of Florida and two UCEDDs (DC & NH), this is the first project explicitly designed to provide an innovative process, adapted from a Georgetown University National Center for Cultural Competence project, for reconciliation and meaningful involvement of YA with IDD-MH and families in CER. The goal of this project is to build capacity for researchers and YA with IDD-MH and families to engage in CER. Aim 1: In partnership with stakeholders, adapt extant Truth & Reconciliation Forum protocol and materials for YA with IDD-MH and families and develop Transforming Research Forum protocol and materials for researchers. Objectives: 1.a. Provide a process for YA with IDD-MH and families to: - Begin to reconcile experiences of marginalization and exclusion in research and practice. - Acquire knowledge and skills to partner effectively in research. - Create partnerships and dissemination approaches that are inclusive and culturally and linguistically appropriate for this population. 1.b. Facilitate researcher knowledge of: - The value of partnering with YA with IDD-MH and families in CER. - Culturally and linguistically appropriate approaches to engage, partner with, and disseminate information on CER to this population. Aim 2: Implement, evaluate, and revise the forums with stakeholders. Aim 3: Create and disseminate strategies for culturally and linguistically appropriate CER partnerships to YA with IDD-MH, families, and researchers.

MHIDD, cultural competency, CER

Training Trainees, Performing Research or Evaluation, Developing & Disseminating Information, Continuing Education/Community Training

Quality of Life, Other - Cultural Diversity, Other

Professionals and Para-Professionals, Family Members/Caregivers, Adults with Disabilities, Children/Adolescents with Disabilities/SHCN

Racial or Ethnic Minorities, Disadvantaged Circumstances, Limited English, Geographic Areas, Rural/Remote, Urban, Specific Groups

National

N/A