HCBS may be offered through Medicaid State plans or through a waiver of the established Medicaid requirements (Tables 1 and 2). States may offer a number of different HCBS waiver plans, and HCBS waiver plans may fall under different waiver types, which are referred to by the section of the Social Security Act that is being waived:
- Section 1915(c) waivers allow States to provide long-term care services in home- and community-based settings. Most HCBS-relevant waivers are Section 1915(c) waivers.
- Section 1115 waivers allow States to test broad and diverse changes to Medicaid requirements, such as limiting choice of provider through mandatory enrollment in managed care. They are less likely to be directly relevant to HCBS, but some States use Section 1115 waivers to cover long-term care under a managed care model.
- Section 1915(b/c) waivers allow States to enroll beneficiaries in a mandatory managed care program that includes HCBS waiver services. Only a few States have Section 1915(b/c) waivers.
Due to data limitations—individual encounter data are not available for managed care participants—we have restricted our analysis to Section 1915(c) waivers. These cover the vast majority of HCBS waiver participants.
We defined the HCBS population with the intent of capturing, to the extent possible, all Medicaid recipients with any indication that they use or plan to use HCBS. Using national (all States and the District of Columbia) MAX data, we defined an individual as being in the HCBS population if at least one of the following conditions was satisfied:
- The individual was enrolled in a 1915(c) waiver.
- The individual showed evidence of use of 1915(c) waiver services.
- The individual showed evidence of State plan service use for personal care, adult day care, home health for more than 90 days, residential care, at-home private duty nursing, or at-home hospice care.
We further categorized HCBS participants into several subpopulations. First, we categorized people as dually eligible for Medicare and Medicaid or eligible for Medicaid only. Second, we created four clinical subpopulations. Using MAX and MedPAR data, we defined these clinical subpopulations as follows:
- I/DD (intellectual/developmental disabilities):
- Enrollment in an I/DD waiver, use of an intermediate care facility for the mentally retarded (ICF-MR), or relevant diagnosis codes on inpatient or HCBS service records.
- SMI (serious mental illness):
- Enrollment in an MI waiver, use of an inpatient psychiatric facility, or relevant diagnosis codes on inpatient or HCBS service records.
- All HCBS participants who are 65 or older.
- Under 65 with physical disabilities:
- All others who are under age 65 (e.g., traumatic brain injury, HIV).
These subpopulations were not mutually exclusive, an individual could be classified as I/DD, SMI, and 65+ simultaneously. The under 65 with physical disabilities group is a residual category, needed to assign all HCBS participants to a subpopulation. Thus, there is no overlap between the under 65 group and the other three subpopulations.
Key Attributes of the HCBS Population
The national HCBS population is large and diverse, as described along several key dimensions in Table 3. It includes 2.2 million people, which is almost 4 percent of the total Medicaid population. Two-thirds of the HCBS population are dually eligible for Medicare and Medicaid. The overall mean age is 56. Most of the HCBS population is non-Hispanic white and the majority are female. Older adults make up the largest subpopulation (44%), with I/DD at 26 percent, SMI at 13 percent; and under 65 with physical disability at 24 percent. These categories add to more than 100 percent because of overlap among the elderly, I/DD, and SMI subpopulations.
One in 10 HCBS participants was enrolled in a Medicare or Medicaid managed acute care plan. Overall, more than half (60%) of the HCBS population used State plan services, and most of those (49% of the total HCBS population) used only State plan services. Approximately 45 percent used 1915(c) waiver services, and most of these (34% of the HCBS population) used only waiver services. Approximately 47 percent were enrolled in a 1915(c) waiver, indicating that most enrollees used services. One in 10 HCBS participants used both State plan and 1915(c) waiver services.
Characteristics of the HCBS population vary considerably by subpopulation. The overall mean age of 56 combines a very wide range of ages: The mean age among the dually eligible is 67, while the mean age among the Medicaid-only population is just 33. While the elderly (65+) subpopulation has a mean age of 79, the other subpopulations are considerably younger, with a mean age of just 34 in the I/DD subpopulation, 49 in the SMI subpopulation, and 42 among those under 65 without I/DD or SMI. The I/DD population is the only subgroup that is not majority female.
Distribution by race does not vary dramatically across subgroups nationally, but non-Hispanic whites make up a majority of the dually eligible, I/DD, SMI, and age 65+ categories. Non-Hispanic whites make up just under half of the under-65 and Medicaid-only subpopulations.
The Medicaid-only group was the most likely to be enrolled in a health maintenance organization (HMO) for acute care, and older adults were more likely to be enrolled in managed long-term care, although enrollment in managed long-term care was less than 1 percent for all subpopulations. The I/DD subpopulation is the most likely to be enrolled in a 1915(c) waiver (80%); other groups do not exceed 50 percent enrollment. Accordingly, 71 percent of the I/DD subpopulation used waiver services alone or in conjunction with State plan services, while other groups were more likely to use only State plan services.
This heterogeneity by subpopulation necessitates caution in drawing broad generalizations about the health and welfare of the HCBS population. Results in this report therefore are generally presented by subpopulation as well as overall. Although we do not present State-by-State results for most tables, the national numbers reflect substantial State-to-State variation.