Community integration of people with intellectual and developmental disabilities: A national longitudinal analysis

Medicaid Home and Community Based Services (HCBS) 1915(c) waivers are the largest providers of long-term supports and services (LTSS) for people with intellectual and developmental disabilities (IDD) in the United States. National and longitudinal analyses of HCBS 1915(c) waivers for people with IDD are critical because of changes in the fiscal landscape, the variability produced by states ability to flexibly customize their programs, and the significant changes required by the HCBS final settings rule.

The aim of this study was to determine spending allocations and state priorities for LTSS for people with IDD through Medicaid HCBS waivers over a five-year period (fiscal year 2011 to fiscal year 2015).

Medicaid HCBS 1915(c) waivers for people with IDD from fiscal year (FY) 2011 to FY 2015 were analyzed to determine total projected spending, unduplicated participants, and average spending per participant across fiscal years and states. Over 10,000 services from the five years were also analyzed to determine service priorities.

This longitudinal analysis of HCBS IDD waiver allocation revealed large fluctuation across five years in terms of total participants, total spending, and average spending per participant. Trends also revealed a shifting away from residential habilitation settings towards supports for living in one's own home.

When revising waivers to meet the Final Settings Rule, states should utilize our findings to determine areas of need and how to best apply limited funding.