By Carli Friedman, CQL Director of Research
Approximately 5.3 million people in the United States have a traumatic brain injury (TBI) and need long term services and supports. While historically TBI services have been provided in rehabilitation and nursing facilities, over the last few decades there has been a shift toward more community-based service provision for people with TBI. However, many people with TBI are still often referred to skilled nursing facilities not designed for people with TBI, rather than to home and community-based settings.
The purpose of this CQL study was to explore how states across the nation provide Home and Community Based Services (HCBS) waivers for people with TBI; “doing so is critical to better understand disparities in service provision and long-term functional outcomes for this community, especially as many states shift toward greater focus on community living for people with TBI, rather than institutional care” (Friedman, & VanPuymbrouck, 2018, p. 6).
To do so, HCBS waivers for people with TBI from fiscal year (FY) 2016 were analyzed to determine total projected spending, unduplicated participants, and average spending per participant across fiscal years. Approximately 300 different services were also analyzed to determine service priorities
Waivers for People with TBI
Fifteen states provided HCBS services for people with TBI in FY 2016 through 17 different waivers. The majority of the 17 waivers served adults (71%), while fewer provided services to both children and adults.
Average Spending Per Person on Traumatic Brain Injury Waivers
In FY 2016, $334 million was projected for HCBS services for approximately 9,000 people with TBI. The average annual spending per participant ranged per state from $14,034 (Illinois) to $133,522 (Massachusetts), with a mean of $59,180 per state (see figure above).
Types of Services Provided:
- Adult day health
- Care coordination
- Clinical and therapeutic services
- Community transition supports
- Day habilitation
- Family training
- Financial support services
- Nursing and home health
- Residential habilitation
- Specialized medical equipment and assistive technology
- Supported employment
- Supports to live in one’s own home (companion, personal care, homemaker, supported living, meals, chore)
The service categories projected to receive the largest proportion of funding were: 1) supports to live in one’s own home; 2) residential habilitation; and, 3) day habilitation (see figure left).
Little funding (9%) was projected for clinical and therapeutic services, which is problematic as people with TBI in particular may need these services because of their TBI.
Moreover, little funding was directed towards services that help people with TBI integrate into the community. “Achieving the primary objectives of the HCBS waiver program requires understanding the impact a state waiver has on adequately serving a targeted population’s unique needs in order to optimize meaningful community participation. As people with TBI and professionals advocate for these changes, our findings should be utilized to understanding states’ utilization of the TBI waiver to determine areas of need and how to best promote community participation of people with TBI” (Friedman & VanPuymbrouck, 2018, p. 22).