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Telehealth in HCBS for People with Intellectual and Developmental Disabilities

By Carli Friedman, CQL Director of Research

The COVID-19 pandemic significantly increased the need for telehealth service delivery. In fact, in a previous study we found that 40% of people with disabilities used telehealth in 2021. Although telehealth technologies are not new, they had not widely been used with people with intellectual and developmental disabilities (IDD) prior to the pandemic, especially because people with IDD are less likely to have access to technology.

For these reasons, the aim of this study was to explore telehealth service delivery in Medicaid Home- and Community-Based Services (HCBS) waivers for people with IDD. To do so, we examined how states permitted telehealth service delivery within their 2021 HCBS 1915(c) programs (permanent use of telehealth). We also examined how states temporarily changed their HCBS programs to allow telehealth during the pandemic (2020-2022) through Appendix K amendments (temporary use of telehealth).

We found that a total of 185 services could be permanently delivered through telehealth, which is about 5% of HCBS IDD services (see Table). In addition, during the Public Health Emergency (PHE), 1,392 services (36% of HCBS IDD services) could temporarily be delivered by telehealth.

Permanent (2021; 1915(c) waiver)Temporary during PHE (2020-2022; Appendix K)
States19 (42.2%)42 (93.3%)
Waivers29 (27.6%)105 (98.1%)
Services185 (4.8%)1,392 (36.2%)

The most common types of services that could be delivered by telehealth – both permanently and temporarily – were: employment, day, and prevocational services; in-home and residential supports; and clinical and therapeutic services (see Figures below).

Services Permitting Telehealth Service Delivery

Permanent (n = 185)

Permanent services that could be delivered by telehealth: Employment, day, and prevocational 40.0%, In-home and residential supports 23.2%, Clinical and therapeutic 17.8%, Crisis and respite 6.5%, Community integration supports 3.8%, Support coordination 3.8%, Family support services 2.2%, Peer mentorship 2.2%, Specialized medical equipment and assistive technology 0.5%

Temporary (n = 1,392)

Temporary services that could be delivered by telehealth: Employment, day, and prevocational 31.0%, Clinical and therapeutic 29.9%, In-home and residential supports 15.7%, Community integration supports 6.3%, Crisis and respite 5.6%, Specialized medical equipment and assistive technology 5.6%, Support coordination 2.4%, Family support services 1.9%, Adult day health 1.1%, Peer mentorship 0.5%

In both HCBS 1915(c) waivers and Appendix K, states commonly stipulated requirements for the implementation of telehealth service delivery. There was often a focus on informed choice, outcomes, and privacy, which are all important practices for telehealth for people with IDD. However, many states also required people with IDD be able to independently use telehealth without supports, which will not only limit who can use telehealth, but also conflicts with people with IDD’s rights to accommodations.

While our findings indicate there was a significant increase in the implementation of telehealth in HCBS for people with IDD during the pandemic, it is important to note that only a fraction of HCBS services (5%) permanently offered telehealth service delivered. While telehealth may be one of the advances of the pandemic, currently almost all IDD HCBS telehealth delivery services are designed to revert to requiring in-person service delivery after the PHE ends unless states make permanent changes to their HCBS waiver programs.

This article is a summary of the following journal manuscript: Friedman, C. (2022). Telehealth Service delivery in Medicaid Home-and Community-Based Services for people with intellectual and developmental disabilities. International Journal of Telerehabilitation, 14(1).