Inclusion of Caregiver Supports and Services in Home- and Community-Based Service Programs: Recent Reports from State Units on Aging

Abstract

Caregivers have an important role in assisting frail and/or disabled individuals to maintain their independence in the community. Support to assist caregivers in this often stressful and demanding role is critical to sustaining the caregivers' health and ability to provide care. This paper reviews federal policy changes since 2000 that have expanded and enhanced services for informal caregivers. Next, data collected from State Units on Aging and other state agencies are presented to describe the extent to which caregiver services are included in home- and community-based programs under three funding streams (Medicaid waivers, Centers for Medicare and Medicaid Services–funded programs, and state-funded programs). Program characteristics, such as eligibility and consumer-directed options, are included. Finally, the accomplishments and initiatives reported by state respondents related to supporting informal caregivers are also explained. Results indicate that services for informal caregivers are receiving greater attention and are frequently offered under home- and community-based service programs by the states that participated in this study.

Keywords:

• Aging Strategic Alignment Project
• caregiver services
• home- and community-based services
• informal caregiver
• rebalancing

INTRODUCTION

It is estimated that there are approximately 65.7 million caregivers of persons of all ages with special needs in the United States (National Alliance for Caregiving & AARP, 2009). A profile of the average caregiver is a woman approximately 49 years of age caring for someone approximately 69 years of age for a little less than 5 years (National Alliance for Caregiving & AARP, 2009). Many caregivers provide and/or assist with activities of daily living such as eating, bathing, dressing, and toileting and/or instrumental activities of daily living, such as transportation, meal preparation, medication management, shopping, and housework. Informal caregiving, which typically refers to unpaid care, was valued at $375 billion in 2007 (Houser & Gibson, 2008). Informal caregivers can be anyone from a spouse, sibling, son, or daughter to a friend or neighbor. While there is often overlap between informal caregivers and paid direct care workers, the focus of this study is on the informal caregiver.

Similar to care recipients who need services and supports to remain in the community, informal caregivers are also likely to need services and supports to function in their sometimes stressful and demanding caregiver roles (Brazil et al., 2005; Casado, 2008; Dellasega, 1991). Examples of caregiver services and supports are information and referral services, individual counseling and support groups, training and education, family consultations, and respite care. These services are important because they have been found to provide caregivers with new knowledge, a sense of community, a sense of renewal and, notably, a belief that the services they receive benefit their care recipient as well (Winslow, 2003). The utilization of caregiver services has been shown to have a wide range of benefits to caregivers, including an increase in general health and vitality (Korn et al., 2009), reduced perception of burden, increased social support, and lower levels of depression (Burgio et al., 2009; Wolff et al., 2009).

Furthermore, caregiver services are important because research has demonstrated that when caregivers utilize supports and services, the institutionalization of the care recipient is often delayed (Mittelman, Haley, Clay, & Roth, 2006; Zarit, Gaugler, & Jarrott, 1999). Conversely, when caregivers are overburdened by their responsibilities, institutional care is more likely to be sought for the care recipient (McFall & Miller, 1992; Yaffe et al., 2002). Miller, Allen, and Mor (2009) make a strong argument that if more home- and community-based service (HCBS) programs are going to be available as alternatives to institutional care, services and supports for informal caregivers are a necessity. Further, many scholars emphasize the importance of services and supports for caregivers and care receivers in need of long-term care (Feinberg & Newman, 2005; Feinberg, Newman, & Fox-Grage, 2005; Miller et al., 2009; Moscovice, Davidson, & McCaffrey, 1988; Muramatsu et al., 2007).

In this paper, the following issues related to supports and services for informal caregivers of older adults and adults with disabilities are addressed: (1) the major policy changes since 2000 that have had an effect on supports and services for informal caregivers; (2) the extent to which informal caregiver services are included under three major HCBS funding sources (Medicaid waivers, Centers for Medicare and Medicaid Services [CMS]–funded programs, and state-funded programs) as reported by the state respondents; (3) the characteristics (e.g., eligibility criteria, consumer-directed options) of the programs that provide caregiver services; and finally (4) reported state-level initiatives for expanding support to informal caregivers.

This study is unique in addressing these issues because the focus of past research of this nature has been on a particular funding stream (e.g., Medicaid waivers; see Feinberg & Newman, 2005) rather than a wider array of funding sources for HCBS. The larger study from which data for this research were derived sought to provide a comprehensive description of HCBS programs from a variety of funding sources in all states and the District of Columbia, and data on caregiver services were gathered as part of this initiative. The larger study was conducted under a cooperative agreement with the Administration on Aging (AoA) for the purpose of developing profiles of HCBS programs across the 50 states, with a focus on the role of State Units on Aging (SUAs) in administering them.

PUBLIC POLICY CONTEXT FOR CAREGIVER SERVICES AND SUPPORTS

The National Family Caregiver Support Program (NFCSP) was established by the AoA through amendments to the Older Americans Act (OAA) in 2000. Through NFCSP (Title III E of the OAA), all states and territories receive funding to provide services and supports to caregivers of persons aged 60 and older. Additionally, the NFCSP provides services and supports to older adults aged 55 and older who are grandparents and serve as the primary caregivers to their grandchildren aged 18 years and younger. Caregiver services funded under NFCSP can include information and assistance, counseling, respite care, and supplemental services. Funding for NFCSP is disbursed to the states based on the states' proportion of the population aged 70 and older.

The establishment of this national program was encouraging; however, funding remains relatively low, at just over $153 million in 2008. Funding appropriated for 2009 was increased by less than $1 million (see H.R. 1105, 2009, or Family Caregiver Alliance, 2009). The value of NFCSP to caregivers is underscored by anecdotal reports from those who have received its services. For example, many attest that it has “helped a lot” and report that, “They are able to provide care longer than otherwise would have been possible” (AoA, 2009). Prior to this landmark national initiative, comprehensive benefits targeted specifically to caregivers were limited (Feinberg & Newman, 2005).

In 2001, an executive order called the New Freedom Initiative (NFI) was established. This initiative, signed by former President George W. Bush, called for action to broaden the scope of HCBS provided by states and to address directly caregiver needs in order to promote further community living (Department of Health and Human Services [DHHS], 2002). To address caregiver needs, DHHS created the NFI Subcommittee on Caregiving, which was established to work across departments as well as with other federal partners to identify gaps, duplications, and areas for enhancement and to facilitate program and policy recommendations related to caregivers (DHHS, 2010).

In recent years, however, legislation targeted specifically to caregivers has been limited, according to a report by the Family Caregiver Alliance (2009). It suggested that fiscal crises and other pressing concerns have challenged the passage of further legislation supporting caregivers. However, the report also notes several successful policies that states have implemented by means of caregiver legislation during the years 2007 and 2008. These are (1) workplace accommodation and family leave policies; (2) tax incentives for family caregivers; (3) direct services and support for caregivers; (4) HCBS for care recipients, with provisions related to Medicaid, other state-funded programs, or consumer direction; (5) policies that recommend more studies on specific caregiving issues by a task force or other body; and (6) support for injured service members, veterans, and their caregivers.

Another important development for both care recipients and informal caregivers has been the growth and expansion of consumer-directed service programs, originating with the Cash & Counseling Demonstration programs (Cash & Counseling, 2007; Foster, Brown, Phillips, & Carlson, 2005). These demonstrations began in Arkansas, Florida, and New Jersey in 1998, allowing consumers (i.e., the care recipients) to self-manage a flexible budget; determine the mix of goods and services that best met their needs; and hire, train, supervise, and fire their selected providers of services. Carlson, Foster, Dale, and Brown (2007) note that the majority of participants in the original Cash & Counseling demonstrations chose family members (i.e., informal caregivers) as their paid providers.

Moreover, Foster, Brown, Phillips, and Carlson (2003) reported that caregivers whose care recipients were consumer-directing services, compared to those receiving services through a traditional model (such as those utilizing a home care agency), experienced the following benefits: less likely to report high levels of physical, financial, and emotional strain; worried less about inadequate care; more likely to be satisfied with the care recipient's care arrangements; and more likely to self-report that they were in better health and satisfied with their own lives. The success of the three-state Cash & Counseling demonstration led to replication of the program in 12 additional states. Subsequently, the 2005 Deficit Reduction Act (§ 6087) authorized a policy modification to allow a self-directed personal care option under Medicaid State Plans.

In some consumer-directed options, the caregiver can be elected as the care recipient's “representative” and, subsequently, makes care decisions on the care recipient's behalf. Consequently, in consumer-directed services, it is not just the care recipient who is considered the consumer; rather, it is often the care recipient and caregiver dyad (Whitlatch & Feinberg, 2007). These options recognize the caregiver's critical role in consumer-directed services.

The inclusion of consumer direction in HCBS programs is important for caregivers because in some states, this enables informal caregivers to be paid for their services. While the paid benefit to the caregiver delivering consumer-directed services is often not sufficient to supplant workplace compensation, receiving financial compensation through consumer direction has reduced the financial burden or enabled the caregiver to reduce the hours worked at a place of employment (Doty, 2004; Simon-Rusinowitz, Mahoney, Loughlin, & Sadler, 2005).

METHODS

The objective of this study was to identify supports and services for caregivers of older adults and adults with physical disabilities, as reported by respondents from state agencies, funded by HCBS programs under three funding streams. This study does not, however, address the actual scope and availability of caregiver services at the local level, nor did it gather information on the funding level or expenditures for these services or how many persons were served by the programs. This study sought to understand how caregivers are supported under HCBS programs at the state level beyond the NFCSP funds, which are granted to each state and territory.

The larger study from which data for this research were derived was called the Aging Strategic Alignment Project. Its purpose was to examine the HCBS programs and services that (1) are available for older adults and/or adults with physical disabilities under three funding streams (i.e., Medicaid waivers, CMS grants and demonstrations,¹ and state-funded programs) and (2) provide direct services to individuals, in contrast to funding aimed at improving state infrastructure for HCBS. While these criteria encompass a broad range of programs, the focus of this paper pertains only to those programs and services that either specifically target informal caregivers or those that target the care recipient and also benefit the caregiver.

Details were gathered about each program including eligibility criteria (e.g., functional limitations, financial status), the availability of consumer direction, and services offered. In this study, caregiver services were self-defined by respondents from the SUAs or other government agencies involved in program oversight; they include either caregiver services as a broad concept or specific services such as family counseling and training, in-home family support, and/or respite care.

To gather the information, an e-mail describing the initiative was sent to the SUA director in each state and the District of Columbia (the latter will subsequently be referred to as a state for simplification purposes). Following the initial invitation, an electronic letter was e-mailed to all contacts, which included a link to the initial online phase of the data collection. Online data collection utilized software that included a unique identifier to enable the participants and their colleagues in each state to log in and provide the requested information. The initial information was used to populate an interview tool so that programs specific to a state could be referred to by name in the second stage of the data collection. This second stage included phone interviews using a structured interview tool and was conducted by trained research staff. These interviewers were observed during their first two interviews by project management staff to assess their adherence to interview procedures. Debriefings followed these interviews to provide further training and guidance to the interviewers. After the first two stages of data collection were completed, a profile of each state's HCBS programs for older adults and/or adults with physical disabilities was created.

Because of the complexity of each state's apparatus for managing and administering HCBS and widespread variation in terminology, each profile was sent back to all persons in each state who contributed information in order for them to verify the compiled information. Any changes or modifications to the profiles were recorded and incorporated into the profile text and data for analysis; this final step was designed to ensure the reliability of the information. Thus, the study used a three-tiered approach to gather information: (1) online questionnaire, (2) structured telephone interview, and (3) verification of the state HCBS profile. The first two steps occurred between January 2008 and January 2009; the last step was conducted between March and October 2009.

Sample

The directors of the SUAs either participated themselves in the data collection process or designated someone to participate on their behalf. The SUAs were the main points of contact in this project because, as noted previously, the larger study was conducted through a cooperative agreement with AoA to focus on the SUAs. However, because of the breadth of the information requested, it was often the case that staff of other state departments and agencies (e.g., Medicaid departments) also provided some of the information.

The total response was 49 out of 51 states, or a 96% response rate; the two states that did not participate were South Dakota and Hawaii. The number of respondents per state ranged from 1 to 9, with an average (mean) of 3.3 respondents. After the tools were pretested in 2 of the 49 states, the total number of people contacted in the remaining 47 states was 157. In order to gather the information requested, 836 contacts (via phone or e-mail or in-person) were made with these 47 states during the three phases of data collection, with a range of 6 to 28 contacts per state.

Analysis

This study was exploratory and, therefore, the analysis of the quantitative data in this paper includes descriptive information and frequencies about the programs and services for caregivers funded in HCBS programs under the three funding streams as indicated by the state respondents. Qualitative data were content-analyzed by trained research staff, and reports of caregiver programs and initiatives were excerpted.

RESULTS

Availability of Caregiver Services

This study finds that in the 49 participating states, a total of 217 HCBS programs targeting older adults and adults with physical disabilities were reported as funded under Medicaid waivers, CMS-funded programs, and state-funded programs, and 132 of these (60.8%) were reported as including services for caregivers. Figure 1 shows the percentage of HCBS programs by funding stream that was reported to include caregiver services.

FIGURE 1 Total number of HCBS programs reported by funding source: The inclusion of caregiver services and the programs' characteristics.

When combining these three funding sources, all but 2 of the 49 states (Ohio and Connecticut) reported support for caregiver services under at least one of the three funding sources. On average, among the 47 states there were 2.8 programs per state that included caregiver services. Since the NFCSP provides funding to every state, all 49 states in this study are funded to some extent for caregiver services and supports, and most states (95.9%) are funded through more than one source.

Eligibility Criteria

In examining eligibility criteria, it is first important to specify who (the caregiver or care recipient) is screened for eligibility for HCBS programs. Some programs, such as NFCSP and certain state-funded HCBS programs, directly support and therefore screen the caregiver for program/service eligibility. However, not all programs utilize a caregiver assessment. Medicaid and CMS-funded programs have traditionally not targeted caregivers directly, but rather indirectly, through care recipients who must meet certain service eligibility criteria such as a specific level of care and financial need (Feinberg & Newman, 2005). As such, the following reported eligibility criteria typically refer to the care recipient.

Financial information on the consumer is required by most programs. It was reported that sometimes this information requires formal documentation of an individual's or family's income and assets; in other cases, self-reports suffice. Of the three funding sources, only 7 programs reported financial qualifications more permissive than Medicaid standards. This, however, is not surprising since most of the programs reported in this study are funded through Medicaid or CMS.

Looking only at state-funded programs, 15.2% report program qualifications more permissive than Medicaid financial criteria, the highest proportion among the three funding streams. For example, in Arizona's nonmedical HCBS program, it was reported that there is not a means test to qualify for the program, allowing those with incomes above the Medicaid limits to qualify financially. The following states also reported that there was not an income limit that restricted program qualification²: California, Illinois, Maine, Pennsylvania, Tennessee, and Wyoming. The importance of programs such as these are detailed in the discussion below.

Most programs also require a functional (or medical) assessment of the care recipient. A set of constructs to define the functional ability and needs of an individual is commonly referred to as level of care (LOC) need determination. An assessment to determine LOC examines one or more of the following and scores them based on the assessment: medical conditions or needs; a combination of medical conditions/needs and functional impairments; or functional impairment alone (Mollica & Reinhard, 2005). Our findings show that the majority of Medicaid waivers and CMS-funded programs require nursing home LOC. Again, state-funded programs were found to be generally less restrictive than Medicaid and CMS programs, with only 8 of the 46 state-funded programs (17.4%) requiring a nursing home LOC for program qualification. This suggests that such programs provide support and services to recipients who are higher-functioning, since they have not reached the threshold of nursing home LOC (see Figure 1).

Consumer Direction

Slightly more than 40% of programs were reported to offer consumer-directed options (see Figure 1.) The questions about consumer direction were loosely constructed in order to not create definitional barriers, but rather to solicit the breadth of related concepts from respondents throughout the country. Similar to other findings documenting the wide variation in defining consumer direction (Doty, 2004), our study also found such variation. At one end of the continuum, consumer direction was reported as provider choice, and at the other end it was reported as direct cash payments to consumers, enabling them to purchase preferred services or goods without strict oversight or regulation (data not shown).

Our data describe the types of caregivers who are permitted to provide services under consumer direction, as shown in Figure 2. It should be noted that the unit of analysis in Figure 2 is the state; respondents were asked whether the following types of persons were able to provide services under any of the consumer-directed programs in the state. Furthermore, a state may have more than one type of permitted provider.

FIGURE 2 States reporting types of caregivers who are permitted to provide services under consumer-directed options (N = 44 states).

Although consumer direction was broadly defined among the state respondents, the data in Figure 2 suggest that many states model their consumer-directed options after the Cash & Counseling demonstration by allowing individuals to become paid providers. It was reported that it is more likely for friends, neighbors, and adult children than for a spouse to be permitted providers of consumer-directed services, although 15 states reported that spouses are able to serve as paid caregivers. These findings are important because of the aforementioned benefits reported by caregivers of care recipients receiving consumer-directed services (Foster et al., 2003).

Initiatives for Caregiver Services

In addition to HCBS program information, state respondents were asked to comment on their state's accomplishments in regard to HCBS in the last 2 years (2006 and 2007) and their initiatives for HCBS in the next 2 years (2009 and 2010). Activities or initiatives that related to caregivers were mentioned by respondents from 5 of the 49 states. These questions were open-ended; therefore, additional states may have had or will have caregiver initiatives, but the respondents did not comment on them.

Some examples of state-reported caregiver initiatives are illustrative. New York described the creation of a statewide caregiver council. This council was formed to organize and oversee the gathering of information in town meetings across the state from persons with Alzheimer's disease and their caregivers and to identify their specific needs and suggest better ways to provide support. In Washington, the development of a new caregiver assessment tool tailored to services specific to caregiver needs was established. A program called Project C.A.R.E. was developed in North Carolina that has provided respite for caregivers. Additional states that mentioned caregiver support initiatives in the recent past were Georgia and North Dakota. Looking ahead, New York noted a high level of demand for caregiver supports, and North Carolina mentioned initiatives to further expand caregiver and respite services.

DISCUSSION

It is clear that caregiver services are receiving attention throughout the SUAs and state government as evidenced by the fact that caregiver services (beyond those associated with NFCSP) were reported to be provided in HCBS programs by almost every state that participated in this project. While this may be noteworthy, the challenge will be maintaining support for these services in the midst of the budgetary crises that began during the latter part of the data collection period. A recent report on the economic crisis and the impact on state aging programs suggests that most states are facing both decreasing revenues and increases in the demand for services (National Association of State Units on Aging, 2009).

Nevertheless, more than half of Medicaid waiver HCBS programs in the study reported funding caregiver services. However encouraging this might be, it is important to note that Medicaid waivers target specific groups and do not have to be statewide, nor do they have to serve all those eligible for Medicaid [see Social Security Act, Title XIX § 1915 (c)(3) 42 U.S.C. 1396n(c)(3)]. By implication, the reported caregiver services under Medicaid waivers may not be available to many of those who might be in need of such support.

Many HCBS programs in this study that were reported to include caregiver services require the care recipient to be eligible, both financially and functionally, for Medicaid. This is largely due to the fact that about two-thirds of the programs in this study are funded through CMS and Medicaid and must comply with their standards for eligibility, which can vary by state. Although many caregivers in the community do not benefit from services subsidized through the federal government, they may be able to receive services through state-funded programs or the NFCSP, which often have more lenient thresholds for service eligibility.

Furthermore, if a state reported program requirements that were more permissive than Medicaid standards, the functional, rather than the financial, requirement was likely to be less stringent. As described earlier, a majority of state-funded programs that provide caregiver services do not require nursing home LOC. This suggests that states are using their authority to expand functional eligibility requirements in order to serve more individuals in the community and to serve those near Medicaid eligibility, perhaps in hopes of preventing spend-down to Medicaid eligibility and institutionalization.

The majority of HCBS programs that reported providing caregiver services also have consumer-directed options available, with the caveat that consumer direction was ascribed various meanings by state informants. Including consumer-directed options in HCBS programs is important and supportive to caregivers in that utilizing these options has been shown to reduce caregivers' physical, financial, and emotional strain (Foster et al., 2003). Furthermore, it was reported that family members are most often permitted providers of services under consumer-directed options. Allowing families to care for their loved ones and receive a financial reimbursement for doing so might help to alleviate some of the financial burden that informal caregivers experience, for example, due to reduced workforce participation and productivity (Giovannetti, Wolff, Frick, & Boult, 2009). These HCBS delivery options are important to provide care receivers and caregivers options in the way care is provided.

This study was not without limitations, largely due to the fact that the study attempted to look at HCBS from a wide rather than detailed perspective. The study's aim was to gather general information from state respondents about HCBS for older adults and adults with physical disabilities. Although respondents were asked whether each program targeted or served caregivers and whether caregiver services were available in each program, the nature of these services was not described in detail. Future research should look to elaborate on these findings, particularly with respect to program expenditures, scope, the number of persons served, and satisfaction with service utilization.

As stated previously, informal caregivers provide an immense amount of value, estimated at $375 billion in 2007, in efforts to keep loved ones in the community through their hard work and care (Houser & Gibson, 2008). It is important that support for these services at the very least be maintained, if not increased. Caregiver services, including respite services and caregiver training and education, are essential to the success of community living initiatives and to accommodation of consumer preferences to remain living in the community independently for as long as possible.

This research was supported in part by a cooperative agreement (No. 90-AM-3142) from the U.S. Administration on Aging, Department of Health and Human Services. The report's findings and recommendations are those of the authors and do not necessarily reflect those of the Administration on Aging, its staff, or any state officials.

The authors acknowledge the following individuals for their efforts associated with this project and paper: Richard Browdie, Stefanie Schroth, Semanthie Brooks, Uma Irfan, Robert Hornyak, the Administration on Aging, and the staff of the State Units on Aging and other state agencies across the country.

As this report was going to press, the Administration on Aging announced $10 million in community-based funds for caregivers of those with Alzheimer's disease and related dementias. More information about the awards and the 22 states and territories receiving this funding can be found at http://www.aoa.gov/AoARoot/Press_Room/For_The_Press/pr/archive/2010/September/09_27_10.aspx.

Notes

1. CMS grants and demonstrations refer mainly to “Money Follows the Person” grants but could also refer to a pilot, experimental, or demonstration project that CMS has awarded to a state. These types of projects must have met the overall inclusion criteria for the study to be included in the analysis (provide direct services to individuals who are older adults and/or adults with physical disabilities).

2. This criterion is program-specific and should not be considered a generalization for all programs available in the state.