Posted on January 19, 2017

By Carli Friedman, CQL Director of Research

In the United States, Medicaid Home and Community Based Services (HCBS) waivers are the largest providers of long-term services and supports (LTSS) for people with intellectual and developmental disabilities (IDD). The Centers for Medicare and Medicaid Services (CMS) allows states flexibility in designing HCBS waivers for underserved populations that might otherwise require institutionalized care, such as people with IDD. However, the flexibility granted to states can also create large disparities across states and services. For this reason, national level analyses of HCBS waivers are critical to track the waiver landscape. CQL | The Council on Quality and Leadership evaluated data online from CMS and published an article, which is available for purchase, to explore waiver utilization for people with IDD over five fiscal years (FY) to determine trends.

HCBS waivers for people with IDD from FY 2011 to FY 2015 were analyzed to determine total projected spending, unduplicated participants, and average spending per participant across fiscal years. All expenditure data was adjusted for inflation. Approximately 10,000 services were also analyzed to determine service priorities.

Findings revealed HCBS waivers projected serving approximately 565,000 participants per year. The average state projected to serve approximately 13,000 participants a year, ranging from an average of 1,052 for Delaware to 102,500 for California. States projected spending an average of $606.7 million per state per year.

“On average waivers projected spending approximately $49,000 per participant with IDD a year.”

Although it varied widely by state, on average waivers projected spending approximately $49,000 per participant with IDD a year. Across the five years there was a slight decrease in average spending per participant; however, from the data there is no way to determine if the drop was related to a shift to less expensive types of services, or increased reliance on unpaid natural supports, such as family members.

Types of services provided by HCBS IDD Waivers:

• Adult Day Health
• Care Coordination
• Community Transition Supports
• Day Habilitation
• Family Training and Counseling
• Financial Support Services
• Health and Professional Services (crisis, dental, clinical and therapeutic services, nursing and home health)
• Individual Goods and Services
• Prevocational
• Recreation and Leisure
• Residential Habilitation
• Respite
• 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)
• Transportation

Services comprising the largest proportion of spending:

• Residential Habilitation
• Day Habilitation
• Supports to live in one’s own home

These three services were projected to receive more than three-quarters of all HCBS IDD funding over the five years. However, projected spending for both residential habilitation and day habilitation reduced on average over the five years, while supports for living in ones’ own home (companion, homemaker, chore, personal assistance, supported living) increased. These trends suggest a shift towards supports provided in apartments or family homes over facility-based care. These changes may reflect the preferences of people with IDD as well as the changes required by the relatively new HCBS Final Settings Rule, which mandates states provide meaningful community opportunities where people with disabilities have access to the community to the same degree people not receiving HCBS services do.

This analysis found large discrepancies across states and fiscal years, even when contextual factors such as state population and personal income were controlled. As states redesign their waiver programs to meet the HCBS Settings Rule regulations, advocates should utilize our findings to determine areas of need and push for a redistribution of those services that best promote community inclusion.