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Data Collection and Compilation Methods

Medicaid HCBS can be provided as part of State plan services or through waivers. State plan HCBS include mandatory services (all States must offer them), and optional services (offered at States' discretion). Whether the services are mandatory or optional, if they are provided under the State plan, they must be offered to all eligible individuals. Services provided under waivers may be restricted to specific groups based on geographic region, income, or type of disability. Waivers may include a wider range of service types than can be provided under State plans. Individuals may receive both State plan and waiver services.

The findings presented in this section describe State-level variation in the types of HCBS covered, populations covered, and services used under both the State plan and 1915(c) waivers. Data are presented for all States and the District of Columbia.

Most of the data on State plan HCBS were obtained from "Medicaid At-a-Glance 2005: A Medicaid Information Source," an annual CMS publication (2010b). These data were supplemented with information from other sources on the coverage of adult day care (Alteras, 2007) and residential care (Mollica, et al., 2005) under State plans.

We created a database of specific information about each 1915(c) waiver with an approval in effect in 2005. The CMS report "MAX 2005 Waiver Crosswalk" listed all waivers (1115, 1915(b), 1915(c), and 1915(b/c)) operating in 2005. We selected 1915(c) waivers from this list and used the information as the basis for our database of 1915(c) waiver characteristics.

For each waiver listed, we identified information about the qualifying level of care, populations covered, financial eligibility, and covered services. Information about the waivers was abstracted from the CMS online database of approved waiver applications (CMS, 2010d). Information for 160 of 284 waivers was available from the CMS Web site. Information for the remaining 124 waivers was obtained from the University of California-San Francisco Personal Assistance Services Web site (2010) and State Web sites.

Information from waiver application form version 3.5 or later was standardized. Information from earlier 1915(c) applications on the CMS Web site or from other sources was not standardized, making conceptual and practical expertise of the authors essential to ensuring validity of the data abstraction process. Frequent communication among those individuals helped to maintain reliability of data abstraction. Information from sources other than waiver applications may be incomplete.

Data on HCBS service use were obtained from the MAX files and include information only about services provided on a fee-for-service basis.

Availability of Home and Community Based Services

The services that may be offered under State plans or through waiver programs can be quite similar. In this section, we describe the patterns of coverage of these services in the States.

Availability of State Plan HCBS

Table 1 shows the availability of select HCBS through State plans. Mandatory HCBS include those things considered "home health" services—part-time nursing, registered nurse, health aide services—and medical supplies/appliances. Optional State plan HCBS shown in this table include some other home health services (home health therapies, private duty nursing), personal care, hospice care (which may be provided inside or outside of the home), transportation, adult day care, and residential care. "Targeted case management" is an optional service under State plans, offered to individuals who do not have access to case management services under a 1915(c) waiver plan.

It should be noted that optional State plan services may not be limited on the basis of disability group (e.g., limited only to people with brain injuries, people with developmental disabilities), nor may they be restricted to specific geographic areas within a State. However, State plan services may be restricted to groups based on Medicaid eligibility status: categorically needy, optional categorically needy, medically needy, or other populations with eligibility added through an 1115 waiver. There also may be limits placed on the amount of service (e.g., a limit on the number of home health visits). The information shown in Table 1 does not address variations in coverage. It only indicates whether the service was available to one or more of these eligible groups as a State plan service. As seen in the table, there was great variation in the number and types of optional HCBS offered under State plans:

• Nearly all States offer four optional services: home health therapies (49), targeted case management (48), hospice care (48), and transportation (49).
• Home health therapies include physical therapy, speech and language therapy, occupational therapy, and audiology services. All of the 49 States that offer home health therapies offer physical and occupational therapies. Speech and language therapy is offered by 48 States, and audiology services by 44 States (data not shown).
• Few States (8) offer adult day care as a State plan option.
• Few States (14) offer residential care as a State plan option. However, these data are drawn from a study (Mollica, et al., 2005) that was focused on residential care types that serve elders (e.g., assisted living). Other types of residential care may be used by people with developmental disabilities or other types of needs (e.g., group homes, adult family homes). The data shown here may therefore understate the extent to which residential care is provided as a State plan service.
• On average, States offer 5.5 of the 8 optional State plan services shown in this table (data calculated by authors). All States offer at least two of these optional State plan HCBS, but only two States (Massachusetts, New York) offer all of these optional State plan HCBS.

Availability of Waiver HCBS

States may offer multiple waivers, each one targeting different populations, serving different geographic regions, or providing different services. Table 2 shows the availability of select HCBS that States offered through one or more 1915(c) waivers. This table shows whether any 1915(c) HCBS waiver in the State provided the type of service. The service need not have been offered through all waivers operating in the State for it to be shown in this table as available. In addition, the services shown here do not represent an exhaustive list of the types of services available under waivers. The services shown here are among those offered most often:

• Almost all States offered personal care (44) and case management (43) services through 1915(c) waivers. Several other services also were offered by most States. Durable medical equipment/supplies were covered under waivers in 39 States; adult day/health care programs were offered by 33 States; residential care was available in 32 States; and transportation was provided in 33 States.
• Thirteen States offered all of the services listed in this table, through one or more waivers. Of the services listed, Nebraska offered only residential care.
• Arizona offered none of these services under 1915(c) waivers. All of Arizona's services are provided under an 1115 waiver.

Viewing Tables 1 and 2 together gives an overview of the range of services provided to at least some portion of the State's population who are eligible for HCBS. Personal care, case management, transportation, adult day (health) care, and residential care may be covered either as optional State plan or 1915(c) waiver services. However, waiver services may not duplicate State plan services; the waiver must be fundamentally different from that available through the State plan.

Fundamental differences may include some aspect of the type of service (e.g., transportation only for medical appointments vs. transportation for community involvement), or a difference in the intensity of the service available (e.g., number of visits covered). Some States offer these services under both types of programs:

• All States offered personal care services and (targeted) case management to at least some of the people eligible for HCBS, either as an optional State plan service or 1915(c) waiver service. Twenty-nine States offer personal care under both types of programs, and 40 States offer case management under both programs.
• All States except Delaware offered transportation services as a covered service under either: the State plan, one or more 1915(c) waivers, or both.
• Adult day (health) care programs were offered either as State plan or waiver services in 37 States, and residential care was offered in 39 States.

Covered HCBS Participants

While State plan HCBS are available to all individuals who meet the State's eligibility requirement, waiver services are available only to individuals enrolled in the specific waivers. By design, waivers are available only to subgroups of individuals within States who meet the eligibility requirements of the specific waiver. These subgroups may be defined by age, type of disability (e.g., physical disability, developmental disability, traumatic brain injury), specific type of service need (e.g., technology dependent), or geographic location within the State. In addition, waivers may limit the number of people served ("slots") and may maintain a waiting list of otherwise eligible people when a slot is not available.

Table 4 shows the number of people in the HCBS population in total and by waiver use. The total column includes an unduplicated account of all individuals who were in the HCBS population (i.e., who were enrolled in any 1915(c) waiver, who used any 1915(c) waiver services, or who used any State plan HCBS services; see Definitions for further details). The waiver plan column shows only those individuals who were enrolled in any 1915(c) waiver.

Data are shown by the type of waiver in which a person was enrolled. An individual could be enrolled in more than one waiver plan, in order to gain access to a broader variety of needed services. The column labeled "Aged and Disabled" refers to waivers that target people in either of these population groups, whereas the columns labeled "Aged Only" and "Physically Disabled Only" are restricted to the people in those groups, respectively. However, these categories are not mutually exclusive.

• Nearly one-half (1.06 million out of 2.2 million) of the total HCBS population was enrolled in one or more waiver plans nationwide. The percentage of the total HCBS population enrolled in a 1915(c) waiver ranged from a low of 17.5 percent in California to 100 percent in Maine (percentages calculated by the authors). Some of these people may also have used State plan services.
• Nationally, the largest numbers of people were enrolled in waivers that served people by broad population (aged, people with physical disabilities, people with mental retardation or developmental disabilities). Many fewer were enrolled in waivers serving people with specific clinical conditions (brain injury, HIV/AIDS, mental illness) or support needs (technology dependent).
• Only four States (CO, IN, KS, VT) had waivers that were designed specifically for people with mental illness. People served through other types of waivers may also have mental illness, either alone or in conjunction with other qualifying conditions.
• People may be enrolled in more than one waiver, so the sum of the number of people across the waiver types may exceed the total with 1915(c) waiver use or enrollment. In most States, it appeared rare for people to be enrolled in multiple waivers, with the sum exceeding the reported total number of unduplicated people by less than 1 percent. Minnesota was a notable exception, with the calculated sum exceeding the reported total by more than 9 percent.

Use of Home and Community Based Services

Not all individuals who are eligible for State plan services or who are enrolled in waiver programs use all of the available services. Tables 5 and 6 show the number of individuals who used the various services offered under State plans and through 1915(c) waivers, respectively. Use of waiver and State plan services are not mutually exclusive; some of the individuals shown in Table 5 also may be reflected in Table 6.

The use of HCBS reflected in these tables is based on payments reported in the MAX data. In some cases, payments were made for services that are not generally part of the optional State plan (Table 1) or waivers (Table 2). This can result when States determine that specific services are required to meet an individual's medical needs in the most appropriate, cost-effective manner.

Use of State Plan HCBS

Table 5 shows the number of individuals who used various State plan HCBS. As with other data shown in this report, States vary greatly in the patterns of service use:

• Nationally, the most frequently used optional State plan HCBS was personal care, which was used by slightly more than one-third (35%) of the 2.2 million people who were eligible for any HCBS use (State plan or waiver). Almost none (<1%) of the eligible people used this service in Virginia, while nearly all (98%) eligible people in Arizona used personal care (percentages calculated by the authors).
• Transportation also was a frequently used optional State plan service, with 25 percent of eligible people nationwide making use of it. Other than Arkansas, in which 98 percent of eligible people used transportation as an optional State plan benefit, transportation was used by between 2 percent (Virginia) and 48 percent (North Carolina) of eligible people.
• Optional State plan residential care was used by 5 percent of HCBS-eligible persons nationwide, with State-level use ranging from less than 1 percent of eligible persons to nearly one-third (32%, Massachusetts). Although provided as an optional State plan service in only 14 States (Table 1), residential care was used by individuals in at least 36 States. Several of the States that were described as not covering the service, but with reported use, had significant numbers of people who used residential care. This was especially true in Maryland and South Dakota, where more than 20 percent of eligible individuals were reported to receive residential care as an optional State plan service. Given the limitations of the residential care data previously described, it is possible that the residential care services in these States are those types generally used by people with developmental disabilities or other people under age 65.
• Very few people used private duty nursing (<1% nationwide). The greatest use was in Idaho, where 4 percent of people eligible for HCBS used private duty nursing as a State plan option.
• Hospice also was used by only 1 percent of people nationwide, as a State plan option. The greatest rates of use were observed in Nevada (10%) and Utah (15%), suggesting the possibility of a regional phenomenon.

Use of Waiver HCBS

Table 6 shows the number of individuals who used each of several select HCBS offered through 1915(c) waiver programs. Not all HCBS users were enrolled in a waiver; nearly half (49%) used only HCBS provided under State plans (Table 3). In addition, not all waivers provided all of the services shown in this table.

Nationally, waiver services are used by relatively few eligible individuals. With the exception of durable medical equipment/supplies, fewer than 10 percent of eligible people used each of the waiver services shown (personal care, case management, adult day/health care, residential care, durable medical equipment/supplies, and transportation).

Durable medical equipment and supplies are an interesting exception. These were used by the greatest number of individuals (12% of all HCBS users nationwide). The number of people benefiting from durable medical equipment/supplies is likely even higher when one considers the "durable" nature of these items and the timeframe for analysis. That is, we report on use of the benefits during 1 year, while equipment such as wheelchairs, commodes, and walkers provide benefit over many years.

• While the use of waiver services shown in this table was low nationally, the same was not true at the State level, where we observed high rates of some services, varying by State. More than half of all HCBS users received durable medical equipment/supplies under waivers in some States (South Carolina, Oklahoma), while the number of people receiving these services was too small to report in other States.
• Personal care waiver services were used by 5 percent of eligible people nationwide. This service was reported to be covered by waivers in nearly all (44) States (Table 2), but only 14 States showed use by a reportable number of individuals (>10). States with the greatest share of eligible persons using personal care were Alaska (29%), Connecticut (41%), Idaho (34%), Minnesota (34%), South Carolina (62%), Virginia (34%), and Washington (47%).
• As was true for the optional State plan services, some States report service use even when it does not appear to be a covered service under the available waivers. This situation was observed with regard to residential care (15 States), adult day/health care (12 States), and durable medical equipment/supplies (11 States), as well as a small number of States in which personal care or transportation were used even when not a covered service.

To fully understand the use of Medicaid HCBS, it is helpful to consider the use of State plan and waiver services together. While there may be some differences between the specific services, in general one can think of the following pairings of services as being similar: State plan and waiver personal care services; State plan targeted case management and waiver case management; transportation under both State plan and waivers; State plan adult day/health care and waiver adult day care; and residential care under both State plans and waivers. Viewing Tables 5 and 6 together shows the extent to which these services are used within a State, regardless of the method of accessing them, and highlights the importance of these service types to individuals.

• In total numbers, most services are used more often under State plans than waivers. Because State plan services, when available, are available to all residents of a State, whereas waiver services may be limited by geographic area or type of disability/health condition, this finding is not surprising.
• When one looks only at States in which people used services under both types of programs, the pattern is more variable. In States where people received services under both programs, more people received personal care, case management, and residential care as a waiver benefit than a State plan benefit. However, adult day care and transportation were received more often as a State plan benefit than a waiver benefit.
• Although residential care was covered as both a State plan option and waiver service in only 7 States, residential care actually was used as both a State plan and waiver service in 20 States.
• Although all States offered case management either as a waiver benefit or as an optional State plan benefit (targeted case management), only 17 percent of the HCBS population used case management services. There was no use of case management reported for the HCBS population in nine States.