Telehealth information and communication technology access for family caregivers of people with intellectual and developmental disabilities and mental health needs

Telehealth is increasingly used as a method to provide mental health services. Persons with intellectual and developmental disabilities and mental health service needs (IDD-MH), an estimated 40% of the population of persons with IDD1,2, may benefit from increased access to telehealth services. The flexibility to receive services in one’s everyday environment can be more accessible,3, 4, 5, 6, 7, 8 and telehealth may expand access to mental health providers that have experience providing care to persons with IDD-MH9. Given these benefits, and emerging evidence demonstrating telehealth interventions can be effective for individuals with IDD-MH, 10, 11, 12 telehealth has promise as a service delivery approach.

Effective use of telehealth requires access to information and communication technologies (ICT; e.g., high speed internet, smartphones).13,14 Factors such as gender, race, ethnicity, income, education, and age correlate with access to ICTs and their usage for the broader population. 15, 16, 17, 18, 19, 20, 21, 22 Numerous contextual factors may also magnify barriers to ICTs for people with IDD-MH and their families. Multiple studies found persons living in rural settings have reduced access to high-speed internet. 17,22, 23, 24, 25 Household composition may also influence access to ICTs. As some persons with IDD-MH may also require assistance to use ICTs, caregiver support may be needed to access telehealth.26 Families in which there is a single caregiver may have increased caregiving responsibilities and less time to provide assistance.27, 28, 29

The present study used information originally gathered through START (Systemic, Therapeutic, Assessment, Resources, and Treatment) to address the gap in knowledge about ICT access by people with IDD-MH. START programs across the United States (U.S.) provide cross- systems crisis prevention and intervention services to individuals with IDD-MH, their families, and communities.30,31 START programs provide comprehensive evaluation, training, and consultation to enhance the capacity of individuals with IDD-MH, their families, and primary service delivery system. To address the urgent needs of the START population at the onset of COVID-19, START service providers conducted telehealth outreach to families of individuals enrolled in START. While START programs had some prior experience with telehealth, most services were provided in-person prior to the COVID-19 shutdown. Therefore, and it was important to assess what was needed to provide effective START services via telehealth and to facilitate access to other services over telehealth. This retrospective analysis is guided by the question: What factors are associated with access to telehealth information and communication technologies (ICT) among family caregivers of people with IDD-MH who use START services?

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