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).

Background: Telehealth is increasingly used to deliver mental health services. However, the potential benefits of telehealth for people with intellectual and developmental disabilities and mental health needs (IDD-MH) may not be fully realized. This study addresses gaps in knowledge about access to information and communication technologies (ICTs) for individuals with IDD-MH from the perspective of their family caregivers. Objective: What factors are associated with access to ICTs among family caregivers of people with IDD-MH who use START services? Methods: Retrospective analysis of cross-sectional interview data gathered for START use at the onset of COVID-19. START is a crisis prevention and intervention evidence-based model for people with IDD-MH implemented across the USA. To assess needs during COVID-19, START coordinators conducted interviews with 1455 family caregivers between March and July 2020. A multinomial regression model examined correlates of ICT access, as indicated by an index (poor, limited, and optimal access). Correlates included the level of IDD, age, gender, race, ethnicity, rural setting of the person with IDD-MH, and caregiver status. Results: Age (ages 23-30 years) and sole caregiver status were significantly associated with limited access (both p <= .001). Age (ages 23-30 years and >= 31 years, p <.001), race (Black or African American, p 1/4.001), ethnicity (Hispanic, p = .004), and sole caregiver status (p <.001) were significantly associated with poor access. Conclusions: Disparities existed in ICT access for adults, specific racial/ethnic groups, and sole caregiver households. Healthcare policy related to telehealth must consider how ICT access can be equitable for all users with IDD-MH. (c) 2023 Elsevier Inc. All rights reserved.

Introduction Quality services for persons with intellectual and developmental disabilities and mental health needs (IDD-MH) requires timely access to services that are responsive to their needs and preferences. This study explores virtual service delivery from the perspectives of family caregivers of persons IDD-MH during the onset of the COVID-19 pandemic.Methods Recorded clinical interviews from 577 family caregivers, collected as part of START (Systemic, Therapeutic, Assessment, Resources, and Treatment) service implementation between March and July 2020, were retrospectively analyzed using a qualitative content analysis approach.Results Four factors influenced quality: accessibility of teleservices for persons with IDD-MH; confluence of demands on the caregiver setting; telecommunications infrastructure; and adaptability of services. Perceptions fluctuated with the interaction of these factors.Conclusions While many may benefit from teleservices during future public health emergencies, providers should consider individual, family, community, and service system factors to ensure teleservice access, appropriateness, and accountability for family caregivers of persons with IDD-MH.

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.

Introduction Screening for dementia among individuals with ID is important to identify individuals in need of care and support. The objective of this pilot study was to identify obstacles associated with screening and assessment of dementia among older adults with ID in a crisis-prone population. Method The Early Detection Screen for Dementia (EDSD) was administered to eligible enrollees ages 50 years and older within the START (Systemic, Therapeutic, Assessment, Resources, and Treatment) program. Focus groups were carried out to understand the barriers to screening and diagnosis of dementia. Results Of the 95 eligible enrollees, 63 participants had dementia screening tools completed. Obstacles identified through focus groups included difficulty differentiating changes from baseline function, competing priorities in this crisis-prone population, lack of access to providers, and an unclear understanding of the benefit or purpose of screening among some caregivers. START coordinators noted that the EDSD provided a helpful way to collect information and document changes in the enrollee's functioning. Conclusions The EDSD may be helpful for capturing potential dementia-associated changes overtime in crisis-prone adults with ID, though obstacles remain to the access of further evaluation for dementia.

Objective: Adults with intellectual and developmental disabilities (IDD) are living longer, yet research about the medical and psychiatric needs of older adults still lags behind that of younger individuals with IDD. The aim of this study was to assess age-related differences in the mental health presentations of adults with IDD. Methods: Fully deidentified data for adults 30 years and older were extracted from the START (Systemic, Therapeutic, Assessment, Resources, and Treatment) Information Reporting System, a deidentified database housed at the Center for START Services. Caregivers and START team documents reported psychiatric diagnoses, service use, recent stressors, and challenging behaviors. t Tests, Mann Whitney U tests, x2 tests, and multinominal logistic regression models were used to compare the two age groups, 30-49 years (n = 1,188) versus 50 years and older (n = 464). Results: Older adults had more medical conditions, fewer reported psychiatric conditions, and were more likely to be taking more psychiatric medications compared to younger adults, after adjusting for demographic variables, disability level, and number of recent stressors. Conclusion: Although older individuals reported fewer psychiatric diagnoses, they were more likely to take higher numbers of psychiatric medications and have more medical conditions. Clinicians and researchers ought to devote more attention to the healthcare needs of older adults with IDD, a vulnerable group exposed to polypharmacy and at risk of adverse events. (Am J Geriatr Psychiatry 2022; 30:65-77)

People with intellectual and developmental disabilities (IDD) frequently have behavioral or mental health needs, but experience obstacles to treatment. Family caregivers are often responsible for coordinating the care of individuals with IDD. This study examined family caregiver experiences using intake data from a national tertiary crisis intervention model designed for people with IDD and mental health needs. Caregivers (n = 488) completed the Family Experiences Interview Schedule. Less than half of families reported satisfaction with the mental health services received. Notable gaps were in crisis, night and weekend services, choice of services and providers, communication and coordination between providers, and specialized training. Experiences were worse for caregiving fathers and individuals with IDD with co-occurring chronic medical conditions.

This study examined outcomes from the Systemic, Therapeutic, Assessment, Resources, and Treatment (START) program, a community-based tertiary care model for individuals with intellectual and developmental disabilities and mental health needs. The sample included 111 START service users and their family caregivers, who were receiving START Clinical Team services, located in the Northeast and Southwest regions of the United States. Results from the analyses found a significant 1-year pre-post improvement in caregiver service experiences and mental health symptoms of the service user. A significant decrease in psychiatric hospitalizations and emergency department visits was also found (all p < .01). These data suggest that START holds promise in improving outcomes, for both the caregiver and service user, while reducing dependence on costly and restrictive hospital-based services.

Individuals with intellectual disability (ID) experience high rates of psychiatric disorders, and coinciding high rates of emergency service use. The current study seeks to explore strategies to improve outcomes by reporting a one-year prospective investigation among 41 individuals (Mean age = 32 years, SD = 12) with ID and mental health needs who received specialized supports from the I-START program (Iowa Systemic, Therapeutic, Assessment, Resources and Treatment) operating in a rural region of Iowa. To supplement these data, a qualitative case study details the application of the START model. Results indicate that individuals supported by the I-START program experienced significant reductions in informant-reported problem behaviors and fewer psychiatric emergency department visits and hospitalizations over time. Findings illustrate the benefits of START in improving outcomes for individuals with ID and mental needs as well as their systems of support.