By Carli Friedman, CQL Director of Research
While the institutionalization of people with intellectual and developmental disabilities (IDD) peaked in 1967 (Braddock et al., 2015), people with IDD still do not have full access to the community. While they may be physically located in the community, many people with IDD are not meaningfully included in or engaged with the community. Services can be crucial for community participation of people with IDD. For community placement to be successful there not only needs to be a successful initial transition to the community but also a continuous infrastructure to facilitate social, cultural, and economic participation.
The aim of this study was to explore how Medicaid Home and Community Based Services (HCBS) waivers, the largest funder of long term services and supports (LTSS) for people with IDD, provides community support services for people with IDD. To do so, HCBS waivers for people with IDD from across the nation (fiscal year (FY) 2014) were examined to determine trends in the provision of community support services.
Approximately half of Medicaid HCBS waivers (48%) provided “community support” services in FY 2104. There were two categories of community support services provided by waivers:
- Community transition services that help people with IDD with their initial transition into the community by allowing them to purchase necessary items to set up a basic household. For example, they can pay for initial pest control or buy household items like kitchen supplies.
- Community integration services that help people with IDD be included in the community by providing services that improve the skills needed to participate in the community, such as self-advocacy, or transportation navigation.
In FY 2014, approximately 52,000 people were projected to receive community support services: 2,892 for community transition services; and, 49,073 for community integration services. In total, $448 million was projected for community support services (1.4% of 2014 total projected funding). Approximately 50 times more funding was projected for community integration services ($438.8 million) than community transition services ($8.78 million). More money was also spent per person annually for community integration services than community transition services (see figure).
Average Annual Spending Per Participant
While almost half of the waivers provided community support services in FY 2014, states often required Medicaid to be a ‘payer of last resort,’ meaning all other resources must be exhausted prior to utilization of waiver services. This is problematic as it unsustainable, and may place an unfair burden on unpaid caregivers. Moreover, community support services can be crucial to ensure there is successful meaningful community participation rather than people with IDD simply being physically located in the community.
- 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. Washington, DC: The American Association on Intellectual and Developmental Disabilities.
- Insight into concepts of community
- Guidance to help people define community
- Examples of exploring community and inclusion
- Suggestions to building social capital
- Barriers to creating community
- Tips to overcoming those barriers
Services to Support People with IDD in the Community