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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).

PurposePeople with developmental disabilities and mental health service experiences have a right to be included in healthcare decisions, including the evaluation of their mental health services and providers. However, few self-report measures address this need. This study aimed to fill this gap by developing and evaluating the content validity, including comprehension, relevance, and comprehensiveness, of the Person Experiences Interview Survey (PEIS) with people with developmental disabilities and mental health experiences.MethodsThe research team established a measurement framework based on the Family Experiences Interview Survey (FEIS), resulting in 21 PEIS items that were written in collaboration with young adults with developmental disabilities and mental health service experiences. Comprehension, relevance, and comprehensiveness were evaluated through cognitive interviews with people with developmental disabilities and mental health service experiences (respondents; n = 9) ages 23–49 years. Comprehensiveness and relevance were also evaluated in focus groups with family caregivers (n = 9) and mental health providers (n = 10) who serve this population. Two researchers independently coded open-ended responses to the PEIS for comprehension. A content validity index (CVI), indicating relevance, was calculated for each participant group for each item, and comprehensiveness was rated for item sets.ResultsFifteen of the 21 items met the criteria of ≥80% comprehension, with 89–100% of responses containing all or some intended information. All items met the CVI ≥80% criterion in at least two of the three groups. In all item sets, between 1 and 4 family members or providers felt one question was missing. Respondents used the response scale in a manner that corresponded with their open-ended descriptions, and family caregivers and providers had positive feedback about the response scale’s visual cues and number of choices. Using these findings, four items were removed and six items were revised, resulting in a 17-item measure.ConclusionThis study presents a novel and promising measure, the Person Experiences Interview Survey (PEIS). It also demonstrates that the employment of accessible methods allows people with developmental disabilities to meaningfully evaluate mental health services and providers. The PEIS shows great promise for application in the field by engaging those directly involved in the evaluation of mental health services and providers.