Ellen K. Mahoney, Aimee Milliken, Kevin J. Mahoney, Merle Edwards-Orr, and Danny G. Willis
ABSTRACT
The purpose of this study was to understand the value and impact of the Veteran-Directed Home and Community Based Services program (VD-HCBS) on Veteransâ lives in their own voices. Focus groups and individual interviews by telephone were conducted to elicit participant perspectives on what was most meaningful, and what difference VD-HCBS made in their lives. Transcripts were analyzed using content analysis. The sample included 21 Veterans, with a mean age of 66±14, enrolled in VD-HCBS an average of 20.8 months. All were at risk of institutional placement based on their level of disability. Five major categories captured the information provided by participants: What a Difference Choice Makes; Iâm a Person!; Itâs a Home-Saver; Coming Back to Life; and Keeping Me Healthy & Safe. Participants described the program as life changing. This study is the first time that Veterans themselves have identified the ways in which VD-HCBS impacted their lives, uncovering the mechanisms underlying positive outcomes. These categories revealed new ways of understanding VD-HCBS as an innovative approach to meeting the person-centered needs of Veterans wishing to remain at home, while experiencing quality care and leading meaningful lives, areas identified as priorities for improving long term services and supports.
The Veteran-Directed Home and Community Based Services Program (VD-HCBS) empowers Veterans at risk of institutional placement, and even those currently institutionalized, to live more independently, at home, with greater choice and control over the services they receive (National Resource Center for Participant-Directed Services [NRCPDS], n d.). Since VD-HCBS is a cooperative program between the U.S. Department of Veterans Affairs Veterans Health Administration (VHA) and the U.S. Department of Health and Human Services Administration for Community Living (ACL), Veterans work with staff from their local Aging and Disability Network Agency to manage their own flexible spending budgets for personal care services. This includes deciding what mix of goods and services will best meet their needs, hiring and supervising workers whom they choose, including family and friends, and purchasing items or services to help them live as they want.
VD-HCBS is currently available at 62 of the 154 VA Medical Centers (VAMCs), serving approximately 2000 Veterans, and has served over 3,600 Veterans since its inception in 2008 (ACL, 2017a). However, nearly two-thirds of the VAMCs have not enrolled any Veterans in the program, and in only a handful of jurisdictions is the program available statewide as start-up funding was limited and the decision to implement was left to the discretion of each local VAMC. The uncertainty of future funding seems to have slowed the take-up rate with later adopters and the Veterans Administration has commissioned an evaluation to better understand adoption and implementation practices at local VAMCs (Garrido et al., 2017). The opportunity and impetus to make VD-HCBS available to Veterans nationwide, a goal supported by VHA and ACL, depends on committed and sustainable funding (ACL, 2017c; Thomas & Allen, 2016).
One piece missing, as VAMC staff and federal legislators grapple with decisions about initiating or expanding the program, is hearing the Voices of the Veterans. Satisfaction surveys, compiled in the âVD-HCBS Veteran Experience Analysisâ by the Lewin Group from several sites, found Veterans were âhighly satisfiedâ with the program (ACL, 2017b). However, that study did not ask what Veterans thought was valuable about the program and what could be improved. Hearing the voices of Veterans being served through this program is key to evaluating its impact and discovering ways to make the home and community care system work better for Veterans and their families. This study provides a forum for Veteran input in program design and accessibility, by asking Veterans, in their own words, to discuss their experiences.
Background
VD-HCBS
âVeteran-Centered Care,â a focus in the VHA Blueprint for Excellence (Department of Veterans Affairs. Veteranâs Health Administration, 2014), emphasizes capacities and strengths, with the individualâs goals and preferences being central in determining what supports and services are needed (Hooyman, Mahoney, & Sciegaj, 2013; Scan Foundation, 2012). Ensuring that Veterans who want to be cared for at home have this option is a goal of VD-HCBS.
VD-HCBS is aimed at Veterans with chronic health conditions or disabilities who are at risk of placement in a long-term care facility. Garrido and colleagues (2017) describe Veterans referred to VD-HCBS as needing more than 20 hours of home care per week, being eligible for nursing home level of care, or having three or more activities of daily living dependencies or significant cognitive impairment. They also note that sites have flexibility in choosing whom to refer. Some local VAMCs have chosen to target those Veterans whose disabilities are service connected or who live in highly rural areas where agency-based services are limited.
Initial exploration into the sustainability of VD-HCBS programs showed that VAMC program coordinators assessed Veterans receiving this self-direction option as experiencing improved quality of life across a number of indicators while supporting remaining at home in the community (Mahoney & Kayala, 2012). Benefits of VD-HCBS were likewise endorsed by partnering Aging and Disability Network agency personnelâs perceptions that the program allowed Veteran autonomy in choosing services best matched with their needs and in the least restrictive setting (Thomas & Allen, 2016). There is also local evidence from individual VAMCs that the program saves money and leads to improved health outcomes (Administration for Community Living, 2017a; Snider-Meyer et al., 2013). In a qualitative study of caregivers of Veterans enrolled in VD-HCBS, participants reported experiencing both decreased stress and significant life improvements for both themselves and the Veterans they cared for (Milliken, Mahoney, & Mahoney, 2016).
Social and policy context of participant direction
VD-HCBS uses a participant direction (PD) approach (Department of Veterans Affairs. Geriatrics and Extended Care, 2017). PD (also known as self-direction), a form of home and community-based services, affords participants choice and control over long-term services and supports, with the goal of remaining in their own homes. This means that participants have the ability to develop a plan of care, guided by their goals, with the assistance of a support coordinator and a Fiscal Management Service (FMS), which includes choosing caregivers, the ability to hire a spouse or adult child, and using their budget for goods and services that support independence. PD represents a paradigm shift in policy and practice in the delivery of long-term services and supports for individuals with disabilities (Hooyman et al., 2013). It has been adopted internationally, including programs in the United States, England, Germany, and the Netherlands, and in Australia (Alakeson, 2010; Department of Health and Human Services, 2014; McCaffrey et al., 2015).
VD-HCBS is a cooperative program between the VA and the Aging and Disability Network. The VA provides the funding and ultimate program oversight and sets the Veteransâ budgets. These budgets can vary widely based on where the Veteran lives and his or her needs, but the median national budget is about $2,800 per month across all levels of care need (ACL, 2017b). VAMCs contract with local Aging and Disability Network Agencies (an Area Agency on Aging or Independent Living Center, for example) to provide service coordination and FMS. The local agency is also responsible to monitor services to assure that funds are being spent appropriately and that Veteransâ care needs are being addressed.
In clinical trials, PD increased satisfaction, decreased unmet needs, and resulted in equivalent, if not superior, quality of care and clinical outcomes when compared to traditional agency-based home care programs (Benjamin, Matthias, & Franke, 2000; Carlson, Foster, Dale, & Brown, 2007; Weiner, Anderson, & Khatutsky, 2007). However, as concluded by Wysocki and colleagues (2013), âcomparative effectiveness may be less salient than understanding what makes such care effective in the first place for various client groupsâ (p. vi). This study will contribute to understanding just how PD achieves these, or additional meaningful outcomes. Thus, this is a substantive area of inquiry important to program design and analysis that must now be explored.
The unique viewpoint of Veterans enrolled in VD-HCBS provides an essential addition to knowledge of program processes and outcomes from the perspective of those being served. Three research questions guided this study: (1) what do Veterans identify as the most important and valuable aspects of VD-HCBS? (2) Which aspects of VD-HCBS have made the most difference in their lives? (3) What is life like now, compared to before VD-HCBS? In addition, Veterans were asked for their suggestions about improving the program.
Methods
Participant eligibility
After receiving institutional review board (IRB) approval from Boston College, a nonprobability, purposive sample of Veterans was identified. Participants were recruited from selected VD-HCBS sites across the United States. Sites were selected on the basis of size, with very small sites omitted. To be eligible for the study, individuals had to be currently enrolled in a VD-HCBS program and willing to consent to a focus group or individual interview by telephone. Veterans who self-identified as having a disability that interfered with hearing or speaking on the telephone were eligible to participate if they chose to include someone to assist them with communicating during the interview. This proviso allowed individuals with speech or hearing impairments to be eligible for participation and have their voices heard. Any participants who were able to participate in this conversation were considered competent to share their experiences.
Recruitment
Participants were recruited from September 2014 to March 2015. Research staff contacted local Aging and Disability Agencies, asking them to forward recruitment letters inviting VD-HCBS participants to volunteer for the study and initiate contact with the research team by e-mail or by calling a toll-free number. Agencies also had the option of contacting Veterans directly, based on the perceived level of interest in sharing experiences, and asking permission for the research team to contact them. In addition, informational materials were shared with Veteran Service Organizations, who in turn let their members know about the opportunity to take part in the study. Sixty-five people responded to recruitment efforts, including 26 who met the eligibility criterion of being a Veteran currently enrolled in VD-HCBS. The remainder of respondents were Veterans interested in the program but not currently enrolled, or caregivers of VD-HCBS participants who were not able to participate in an interview.
Data collection
To deepen the understanding of the Veteransâ experiences with VD-HCBS, focus groups and individual interviews were conducted. VD-HCBS participants were invited to share what was meaningful to them about the VD-HCBS and also to reflect upon what differentiates the VD-HCBS program from other home- and community-based services they might have used.
Focus groups were the preferred method of data collection, deemed appropriate to obtain data from a group of individuals enrolled in VD-HCBS, to explore their knowledge and understanding in a short time frame, and provide a venue for comparisons of perceptions and experiences among group participants (Cohen & Crabtree, 2006b). Focus groups were conducted via telephone to include geographically dispersed participants and those who might otherwise be marginalized by their inability to travel, and to provide the chance for participants to exchange experiences with people in similar situations whom they would otherwise not encounter (Allen, 2014; Chong, Alayli-Goebbels, Webel-Edgar, Muir, & Manson, 2015; Frazier et al., 2010). The nature of the focus groups was interactive, including opportunities for participants to share their personal needs and social life situations and provide support. While Gothberg et al. (2013) found diminished interaction among participants in telephone compared to face-to face focus groups, Frazier et al. (2010) found similar interaction across the two venues. Both of these groups reported similar scope of content and a higher level of disclosure of sensitive information when focus groups were conducted via telephone. The advantages of telephone focus groups for this group of Veterans were supplemented with strategies to increase interaction including small groups, a semistructured interview guide, and consistent moderators (Allen, 2014; Gothberg et al., 2013). To ensure that no Veterans who were eligible to participate in the research were excluded, individual interviews were conducted to accommodate Veterans who preferred this alternative and to facilitate scheduling.
