By Carli Friedman, CQL Director of Research
The COVID-19 pandemic significantly impacted the quality of life of people with intellectual and developmental disabilities (IDD) and the human service industry. In recognition of the significant impact the pandemic has had on services and supports for people with IDD, many states temporarily amended their Medicaid HCBS programs for people with IDD to try to maximize the quality of services and minimize the impact on people with IDD. To make these changes, states submit Appendix K: Emergency Preparedness and Response Waivers to the Centers for Medicare and Medicaid Services. In Appendix K waivers, states outline what changes they will make to their HCBS programs during the pandemic.
The aim of this study was to examine how HCBS programs for people with IDD were changed during the pandemic. To do so, we analyzed 294 Appendix K waivers (March 2020 to April 2022) that applied to IDD HCBS.
Most Common Temporary Changes to IDD HCBS During the Pandemic
| Amendment | % of states |
| Modify provider requirements | 95.6% |
| Add remote/electronic service delivery | 93.3% |
| Expand settings where services may be provided | 93.3% |
| Increase payment rates | 88.9% |
| Modify processes for level of care re/evaluations | 82.2% |
Least Common Temporary Changes to IDD HCBS During the Pandemic
| Amendment | % of states |
| Increase the number of people with IDD eligible to receive HCBS | 4.4% |
| Modify population eligibility for waivers | 13.3% |
| Institute/expand opportunities for self-direction | 13.3% |
| Increase cost limits for entry into the waiver | 26.7% |
| Authorize case management entities to provide direct services | 28.9% |
See the full journal article to find out more about all of the changes made during the pandemic, as well as information about which changes specific states made.
“Appendix K waivers are temporary amendments to state HCBS waivers. Many of the amendments to HCBS IDD programs found in this study are scheduled to revert to pre-pandemic operations 6 months after the Public Health Emergency (PHE) is terminated [on May 11, 2023], unless approved by other authorities or implemented into the states’ actual 1915(c) waivers. Given the changes made using Appendix K waivers aimed to promote the access, continuity, and quality of HCBS, we believe it would be beneficial for many of the changes made to waivers via emergency authorizations, such as introduction of telehealth, expansion of paying family caregivers, increased reimbursement rates for DSPs, and increased flexibility in service provision, to continue… It is important to ensure quality HCBS continue for people with IDD during the pandemic and well beyond” (Friedman, 2022, p. 13).
This article is a summary of the following journal manuscript: Friedman, C. (2023). Emergency COVID-19 pandemic changes to Home-and Community-Based Services for people with intellectual and developmental disabilities. Inclusion, 11(3), 179-192. https://doi.org/10.1352/2326-6988-11.3.179
Emergency Pandemic Funding Improved the Continuity and Security of People with IDD
The aim of this study was to examine if states’ expanded pandemic payments translated to improved continuity and security among people with IDD during the pandemic. To do so, we analyzed Personal Outcome Measures® interviews from 738 people with IDD and Appendix K data reimbursement data from the 16 states the people with IDD lived in.
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What Happens to HCBS When the Public Health Emergency Ends?