By Carli Friedman, CQL Director of Research
Medicaid Home and Community Based Services (HCBS) 1915(c) waivers are the largest providers of long-term services and supports (LTSS) for people with intellectual and developmental disabilities (IDD) in the United States (Braddock et al., 2015). Recently there have been a number of changes in the LTSS landscape as states grapple with the changes required by the HCBS Settings Rule as well as the improved fiscal landscape resulting from recovery from the Great Recession (Braddock et al., 2015). The purpose of our study was to conduct an in-depth analysis of Medicaid HCBS waivers for people with IDD across the nation in order to examine spending allocation and state priorities. To do so, 111 waivers from 46 states and the District of Columbia, including over 2,850 services for people with IDD, from fiscal year (FY) 2015 were analyzed.
Findings revealed $25.6 billion was projected to be spent on approximately 630,000 people with IDD in FY 2015. The average projected spending per participant was $40,000 per year, which is significantly less than typically spent in institutional settings (see figure).
Average Annual Spending Per Participant (FY 2015)
There are two categories of waivers:
- Comprehensive waivers (also called traditional waivers) that provide a range of supports including residential supports
- Support waivers that provide a range of services but rely on unpaid natural supports, such as family members, rather than providing residential supports.
While we found support waivers projected spending only a fraction of what comprehensive waivers spent (26%), relying on unpaid supports can be problematic as supports and resources for family are already lacking (Rizzolo, Hemp, & Braddock, 2006).
Services Provided By Waivers
In FY 2015 there were 17 types of services provided to people with IDD:
- Adult Day Health
- Care Coordination
- Community Transition Supports
- Day Habilitation
- Family Training and Counseling
- Financial Support Services
- Health and Professional Services
- Individual Goods and Services
- Recreation and Leisure
- Residential Habilitation
- Self-Advocacy Training
- Specialized Medical and Assistive Technologies
- Supported Employment
- Supports to live in one’s own home (companion, homemaker, chore, personal assistance, supported living)
The service categories with the largest proportion of funding were residential habilitation, supports to live in one’s own home (companion, homemaker, personal assistant, supported living, chore), and day habilitation (see figure).
Through state profiles, we also found a lack of standardization across the states, which may produce problematic service disparities.
This is particularly concerning given the large waiting lists for access to Medicaid LTSS across the nation (approximately 250,000 people in 2013; Larson et al., 2016). However, our findings revealed growth in the spending and total participants projected for waivers for people with IDD in wake of recovery from the Great Recession, indicating waivers continue to be a critical and predominant funding system for LTSS of people with IDD.
- Braddock, D., Hemp, R., Rizzolo, M. C., Tanis, E. S., Haffer, L., & Wu, J. (2015). The state of the states in intellectual and developmental disabilities: Emerging from the great recession (10th edition). Washington, DC: The American Association on Intellectual and Developmental Disabilities.
- Bureau of Economic Analysis. (2016). Personal income and outlays, July 2016 [Press release]. Retrieved September 16, 2016 from http://www.bea.gov/newsreleases/national/pi/pinewsrelease.htm
- Larson, S. A., Hallas-Muchow, L., Aiken, F., Taylor, B., Pettingell, S., Hewitt, A., Sowers, M., & Fay, M. L. (2016). In-home and residential long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2013. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.
- Rizzolo, M. C., Hemp, R., & Braddock, D. (2006, February). Family support services in the United States. Policy Research Brief: University of Minnesota, 17(1), 1–12.