Evaluation of TCARE Pilot Program Colette Browne, DrPH, Professor Myron B. Thompson School of Social Work University of Hawai`i Christy Nishita, PhD, Interim Director Center on Aging University of Hawai`i Heather Chun, MSW, Researcher Center on Aging University of Hawai`i Final Report- September 2015 An evaluation by the University of Hawai`i to explore the feasibility of implementing the evidence-based TCARE program statewide and improve the quality of services provided to caregivers in Hawai`i.
EXECUTIVE SUMMARY The ensuing report describes findings and provides recommendations from the Hawai i Tailored Caregiver Assessment and Referral (TCARE) pilot project. Supported by a grant from the Administration on Community Living (ACL), and initiated through a contract between the Hawai i Department of Health, Executive Office on Aging (EOA) and the University of Hawai i, Center on Aging and Myron B. Thompson School of Social Work (UH), hereafter referred to as the UH Team, a feasibility evaluation of the TCARE program was conducted. TCARE is a standardized care management process designed to help efficiently target resources and services (both formal and informal) available within a community to effectively and appropriately address caregivers needs. Aligning with the strategic direction of the State while capitalizing on the UH s investigations of culturally appropriate and person-centered care management programs for caregivers TCARE was identified by EOA as an evidence-based program that would enable a standardized approach to caregiver assessment and referral throughout the statewide Aging and Disability Resource Center (ADRC). The University of Hawai i team completed a comprehensive evaluation of the TCARE pilot project in partnership with the pilot site, the Maui Area Agency on Aging (AAA), the Maui County Office on Aging (MCOA). The focus of this evaluation was on the feasibility of implementing TCARE statewide. Quantitatively, the TCARE processes, specifically the timeliness and mechanics, were evaluated. To begin to better understand the characteristics of our state s caregivers, participant data was also analyzed. The Team also utilized qualitative methods to determine the feasibility of TCARE s statewide integration within the ADRC. Key informant interviews with AAA County Directors, EOA, and other states who have adopted TCARE were conducted. UH also completed participant interviews and a focus group with MCOA staff on their experiences in the TCARE pilot project. Lastly, ongoing dialogue with Tailored Care Enterprises, LLC. further informed this project s evaluation. Recommendations based on the results of this evaluation: The adoption of the TCARE model statewide offers the potential for improving care and support to older adults and families. The evaluation finds TCARE to be feasible, but statewide integration through the ADRC will require a large investment of State resources. The limited availability of affordable LTCSS remains a serious problem to the adoption of any long-term care system that aims to improve assessment and coordination of care. As such, we consider 1
and discuss the cost and sustainability of statewide implementation in a later section of this report. Table 1 below is a summary of the report s recommendations: Recommendations Feasibility of ADRC Integration Ensure TCARE included within ADRC expansion Implement TCARE screener through I&R staff Operations and Sustainability Need for Cultural Tailoring Utilize train-the-trainer approach for sustainability and provide continuing support Integrate TCARE into Harmony and create a crosswalk of resources Ongoing evaluations to strengthen caregiver support Develop a culturally tailored TCARE protocol 2
I. INTRODUCTION AND BACKGROUND Without proactive planning, our rapidly aging state will face extreme economic and social challenges. Systems change initiatives are underway, both locally and nationally, to develop infrastructures capable of supporting those who are aging and their caregivers. Nationally, federal systems for example, the Administration on Aging (AoA), a department under the Administration for Community Living (ACL) which administers Older American s Act are evolving to meet these escalating needs. Trends in funding are incentivizing state programming that has been demonstrated through rigorous evaluation to be evidence-based and effective. Enabling informed decision making that allows for individual preferences, or person-centered planning, is also being embedded within federal initiatives that strengthen long-term services and supports (LTSS) for older adults throughout the United States. One federal initiative is the development of Aging and Disability Resource Centers (ADRCs). Aligned with the rest of the nation, Hawai i is in the process of developing and implementing a statewide ADRC. The Area Agency on Aging (AAA) in each county is the operating entity for the ADRC in Hawaii. The vision of Hawai i s ADRC is to serve residents of all incomes and ages in every community in Hawai i as the highly visible and trusted source of information on the full range of long-term support options and as the single point of entry for access to public longterm support programs and benefits. As a strategic priority issue of the State Unit on Aging (SUA) the Executive Office on Aging (EOA), ADRC funding and support is being administered through EOA to the AAAs as efforts continue to fully develop ADRCs within each county. Evidence-based programming and person-centered processes are at the core of Hawai i s ADRCs, strengthening service approaches and ensuring efficient spending of public funding for services that are demonstrated to have proven outcomes. One of the major accomplishments of Hawai i s ADRC has been the adoption of a standardized intake and assessment tool for care recipients. The implementation of this tool is still underway in two counties and the natural progression of the State s efforts to standardize personcentered assessment processes with care recipients is to expand to caregivers. As a strategic direction outlined within EOA s Strategic Plan, assessment, projection of needs, and the development of sufficient family caregiver supports over the next decade will be imperative. There has been a growing recognition of the significant contribution caregivers make to care for older adults within our communities, with Hawai i s caregivers providing 144 million hours of care in 2013, an economic value of $2.1 billion 1. 3
At the conception of this project, numerous conversations and efforts to explore evidencebased caregiver interventions occurred, with a strong interest in strengthening the infrastructure of LTSS for caregivers throughout Hawai i. Aligning with these strategic directions while capitalizing on the UH s investigations of culturally appropriate, person-centered, and evidence-based care management programs for caregivers Tailored Caregiver Assessment and Referral (TCARE) was identified by EOA as an evidence-based program that would enable a standardized approach to caregiver assessment and referral throughout the statewide ADRC. Prior to this project, there was no uniformity of caregiver assessment tools between the AAAs. In addition, the caregiver assessments used by the AAAs were not person-centered, were constructed to collect the data needed for federal and state reporting, and largely focused on demographics. Between 2011 and 2013, collaborations between EOA and the University of Hawai i led to several planning meetings, discussions with TCARE founders and researchers, and grant writing efforts to enable the application and evaluation of TCARE within Hawai i s unique population. Made possible by an ADRC grant that EOA received from ACL in 2013, a contract between EOA and the University of Hawai i Center on Aging and Myron B. Thompson School of Social Work was initiated. The contract between EOA and the University of Hawai i facilitated a partnership between 2014 and 2015 to train ADRC staff on the TCARE protocol, conduct a TCARE pilot project, and to complete the proceeding feasibility evaluation. Program Description: Tailored Caregiver Assessment and Referral (TCARE Program) The Tailored Caregiver Assessment and Referral (TCARE) protocol is a standardized care management process designed to help efficiently target resources and services available within a community both formal and informal to effectively and appropriately address caregivers needs. After rigorous review of program data, TCARE was acclaimed by ACL as an evidencebased care management program. Validated through 25 years of research on family caregiving, TCARE is grounded in the Caregiver Identity Theory. 2 The Caregiver Identity Theory describes caregiving as a systemic process of identity change, for example, changing from the original role of daughter to caregiver. The identity change is recognized as a significant factor influencing the type and severity of stress the family caregiver is enduring. Theoretical Grounding. The Caregiver Identity Theory highlights three insights that describe the variations among caregivers. First, stress is multidimensional and caregivers perceive stress differently from one another. Second, the type and quantity of caregiving tasks vary greatly, as does the duration of time in which they occur, the costs they incur, and the benefits the 4
caregiver perceives. Lastly, there is great variation in service utilization among caregivers, with caregivers only utilizing services they want or need. The theory explains why caregiving interventions are not uniformly beneficial for all caregivers. For example, a son who is a new caregiver to his mother with dementia may be struggling with feeling that his mother should be doing more to care for herself, as she s always done, not understanding the progression of the disease. Rather than looking solely at publicly funded caregiver LTSS, such as respite, an evidence-based assessment will produce individualized recommendations for care planning. Through computer software that uses a decision algorithm to provide a profile of the caregiver and suggestions for a service plan, TCARE care managers work with a caregiver to develop a person-centered care plan. In this example, the TCARE protocol will highlight the identity discrepancy this caregiver is facing. Knowing that the caregiver is struggling with identity discrepancy, or his perception that he should be assuming the role of a son more than as his mother s caregiver, the care manager will be better equipped to suggest strategies to help this caregiver cope with his new and evolving role. The care manager may suggest to the caregiver that he consider education on dementia to help him learn about the disease and strategies to help him care for his mother, assisting him in identifying educational classes in the community while working collaboratively on his care plan. A support group may be suggested to help him cope with his transition from the role of a son to a caregiver for his mother. Informal supports, such as other family members, may additionally be considered to help shoulder the responsibilities of caring for his mom. TCARE Processes. Care managers and caregivers work together on the core elements of care management through a six-step TCARE process: (1) Conducting an assessment; (2) interpreting the assessment; (3) identifying appropriate goals, strategies, and services; (4) consulting with the caregiver; (5) developing person-centered care plans; and, (6) conducting follow-up and evaluating progress. The TCARE processes maximize benefits for families throughout their caregiving journey while appropriately allocating resources. The availability of a standardized care management protocol, such as TCARE, is desired at a time where public funding for LTSS is unable to meet the demand of a rapidly aging demographic and their caregivers. Interventions that support a systematic assessment of the needs and strengths of caregivers equip care managers with a more efficient way to target public funding. TCARE trains care managers (also referred to throughout this report as TCARE assessors) to explore support options available in the community or the caregiver s informal networks, such as in the example above, that extend beyond the care manager s typical set of services for which they have the most knowledge. 5
II. PILOT PROJECT This evaluation project explored the feasibility of implementing TCARE statewide, thereby improving the quality of services provided to caregivers in Hawai`i. Partners, Collaborators, and Roles The Executive Office on Aging (EOA). In October 2014, the Department of Health, Executive Office on Aging (EOA), with funds from the Administration on Community Living (ACL), awarded a contract to the University of Hawai`i Center on Aging (COA) and the Myron B. Thompson School of Social Work (MBTSSW) to evaluate the TCARE pilot project in Hawai`i. Throughout the project, EOA administered and maintained the contract with the University of Hawaii, maintaining regular, ongoing, and timely communication. Additionally, EOA provided feedback as key informant during the project s evaluation. The University of Hawai i Team. Composed of faculty from COA and MBTSSW, the UH Team was responsible for overseeing the implementation and evaluation of the TCARE pilot project with the Maui County Office on Aging (MCOA), Hawai`i s TCARE pilot site. Ongoing project support to maintain close and regular support was provided to the eight TCARE care managers and leadership at the MCOA. For the project s evaluation protocol, UH focused on the fidelity of TCARE implementation, feasibility of the TCARE model for statewide replication, and if necessary, recommending changes and adaptations to the TCARE model, with particular attention to multicultural and rural populations. Maui County Office on Aging (MCOA). MCOA, one of Hawaii s four AAAs, was the site for the TCARE pilot project. MCOA s leadership in ADRC development and implementation is noteworthy, and as the first AAA in Hawaii to have their ADRC fully functioning, it was a natural fit for the piloting of TCARE. In December 2014, eight care managers became TCARE certified through MCOA; six of these care managers participated in the pilot project. During the pilot project, UH remained in close contact with MCOA for the TCARE evaluation. In July 2015, care managers provided feedback to UH on the pilot project during a focus group, and the MCOA County Executive was interviewed as a key informant. 6
Tailored Care Enterprises, LLC. In September 2014, Tailored Care Enterprises, LLC provided an in-person training to care managers with MCOA and staff at EOA. After the in-person training, Tailored Care Enterprises, LLC provided additional webinar trainings to complete Hawaii s training, led a TCARE screener training, and certified eleven care managers in December 2014. Of the eleven certified, seven care managers participated in the TCARE pilot project. Throughout the pilot project, Tailored Care Enterprises, LLC maintained regular and ongoing communication and technical assistance with UH, EOA, and MCOA. They also provided data to UH for the evaluation of the pilot project. Project Timeline The pilot project launched on February 2, 2015 and new participants included within the first phase of the project s evaluation were accepted through May 8, 2015. Moving forward, care managers completed 3-month TCARE follow-ups with each caregiver during the second phase of the project, with the pilot concluding on August 7, 2015. Concurrently, during the 3- month TCARE follow-up period, UH collected participant data, conducted additional qualitative evaluations, and analyzed the project s findings. Finally, UH completed the proceeding final report for submission to EOA, in accordance with their contract and in advance of EOA s final grant report to ACL. TCARE Pilot Protocol UH and MCOA care managers had several planning meetings and discussions to inform the protocol that would guide the implementation of the Hawaii TCARE pilot project. In an effort to recruit a diverse sample, the pilot project targeted both caregivers who were new to MCOA and those who had been working with MCOA previously. With approval from the University of Hawaii Institutional Review Board (IRB), UH developed and provided training to MCOA on the informed consent for caregivers participating in the Hawaii TCARE pilot project. Prior to participation, care managers were instructed to utilize the script developed by UH to introduce the project to caregivers, requesting each caregiver s written consent to participate. After collection, UH requested MCOA care managers to upload caregiver consent forms into the statewide secure Social Assistance Management System (SAMS) database. At the launch of the project, each care manager was asked to complete the TCARE protocol with a minimum of five caregivers. During the first phase of the project between February 2, 2015 and May 8, 2015 care managers were expected to complete the following four TCARE components with each caregiver: TCARE assessment form, TCARE assessment summary worksheet, TCARE care consultation worksheet, and TCARE care plan. To complete all four components, care managers typically required one conversation with each caregiver by phone 7
and two follow-up in-home visits, although the number of discussions varied by caregiver. The four components were to be completed within 3 weeks, which is the timeframe prescribed by Tailored Care Enterprises, LLC. Adhering to the protocol outlined by Tailored Care Enterprises, LLC, the Hawaii TCARE pilot project administered a 3-month TCARE follow-up with each caregiver. As part of the process, a short TCARE screener (developed by Tailored Care Enterprises) would be used and based on scores, a full in-home assessment would be administered. The TCARE follow-up was intended to monitor the caregiver s progress and determined whether or not the existing care plan was still appropriate or needed modifications. When warranted, updates to caregiver care plans were made together with caregivers and their care managers. All 3-month follow-ups were required to be completed by August 7, 2015 to be included within the pilot project s evaluation. Support Provided by UH Regular and ongoing communications were conducted between UH, EOA, MCOA, and all stakeholders in the TCARE pilot project. At a minimum, bi-weekly communications with the pilot project site (MCOA) occurred through conference calls during staff meetings, emails, and travel to Maui. UH provided individual technical assistance to MCOA staff and leadership weekly, on average, and occurring more often when needed. The chart in Appendix B details the major support activities conducted by UH throughout the Hawaii TCARE pilot project. 8
III. EVALUATION METHODS The Administration on Community Living (ACL) has designated TCARE as an evidence-based care management protocol for caregivers of older adults. In a randomized controlled trial, positive caregiver outcomes have already been demonstrated. The purpose of this pilot project, therefore, was not to evaluate the effectiveness of the TCARE intervention, rather, the aim was to explore TCARE s feasibility in Hawai`i and second, monitor the fidelity of Hawai`i s pilot. To ensure a high quality evaluation, the UH Team utilized both quantitative and qualitative methods. Quantitative Methods First, as EOA s intention was to explore the viability of integrating TCARE within the state s ADRCs, the TCARE processes were analyzed beginning with quantitative methods. The amount of time between the in-home assessment and care plan, as well as the number and types of service recommendations were examined. Further observations looked at whether or not the mechanics of TCARE were consistent with the protocol defined by Tailored Care Enterprises, LLC. To better understand the characteristics of the pilot s participants, caregiver characteristics were also analyzed. UH was given administrative access to TCAREe (the online software care managers use to complete the TCARE processes). All quantitative data for the pilot project were collected through TCAREe by UH and tracked in an excel database. Collectively, UH analyzed the data and produce the findings included within this report. Qualitative Methods UH analyzed the feedback shared by key players of the pilot project (AAA Executives, EOA, TCARE assessors, and caregivers), as well as from other states that have adopted TCARE, gathering additional information that could inform the future of the TCARE program in Hawai i. UH collected and analyzed data using standard, accepted qualitative methods. Key Informant Interview Methods AAA Executives- Understanding the perspectives of the AAA Executives/Directors who oversee the county-based ADRC operations was imperative to gauging their interest and concerns for statewide TCARE adoption. An AAA Executive questionnaire was developed by UH. Each of the four county Executives were then approached and asked to participate in a one-on-one key informant interview. Two out of the four AAA Executives participated; Honolulu County and Maui County s 9
Executives were interviewed. The interviews were conducted in June 2015 and each interview lasted approximately one hour. Interview with EOA- As the State Unit on Aging (SUA) responsible for administering funding and planning for the state s Aging Network, EOA will have a vital role in the sustainability of TCARE as the pilot project concludes. Following the conversations with AAA Executives, UH developed a questionnaire for EOA to explore areas of concern expressed by the AAA Executives as well as TCARE sustainability options. The interview was conducted in June 2015 and lasted one hour. Interviews with Michigan, Minnesota, and Washington- UH looked at other states for examples of best practices in the implementation of TCARE. Tailored Care Enterprises, LLC recommended Michigan, Minnesota, and Washington as wellestablished TCARE systems with strong leadership systems. Telephone interviews were conducted in July 2015 and lasted one hour each. Caregiver Interview Methods In July 2015, a sample of caregiver participants were interviewed by telephone about their experiences in the program. UH attempted to contact all caregivers with a signed informed consent and in total, eight (8) caregivers consented to an interview. When the researcher contacted participants, she used a script developed by UH which identified that the interview was voluntary, that the conversation would be recorded (and the recording disposed of after analysis), and that all information provided would remain anonymous. The researcher asked twelve (12) questions about the participant s experiences in the TCARE program. Focus Group Methods with MCOA Care Managers On July 1, 2015, UH researchers conducted a focus group with Maui County Office on Aging (MCOA) staff to better understand experiences implementing TCARE, discuss recommended changes, including cultural translation. The researchers chose a focus group format to allow MCOA care managers to provide both structure and unstructured comments about their experiences working with older adults and families using TCARE over the past 6 months. Researchers asked questions specific to cultural translation, as well as questions on implementation and administrative issues. All comments were recorded manually by one of the researchers, and data were reviewed by both researchers for accuracy and comprehensiveness. Data analysis followed commonly used qualitative research method analysis strategies. 10
IV. EVALUATION RESULTS Caregiver Participants Thirty-eight caregivers were approached to participate in the TCARE pilot project (see Figure 1). Of that sample, 31 participants consented and were included within the project s evaluation (n=31). Five participants were excluded from the project s evaluation (as they did not complete the four TCARE processes during the first phase of the pilot), 1 participant did not provide informed consent, and 1 participant withdrew their informed consent during the pilot project; these eight participants were not included within the evaluation of Hawai i s TCARE pilot project. Of the 31 participants included within the pilot project, 26 were caregivers previously affiliated with MCOA and 5 caregivers were new to the organization (see Figure 2). Figure 1: Caregivers Involved in the TCARE Pilot Project Included (n=31) Excluded (n=5) Revoked Consent (n=1) No Consent Obtained (n=1) 11
Figure 2: Caregiver Affiliation with MCOA New Client (n=26) Former Client (n=5) Caregiver Demographics Caregiver gender, age, ethnicity, and employment status were collected and included within this evaluation s findings (see Table 1). Table 1: Caregiver Demographics N=31 Caregiver Gender Males = 10 (32%) Females = 21 (68%) Caregiver Age Mean = 61.7 years Range = 42 years 83 years Caregiver Ethnicity White = 10 (32%) Hispanic/ Latino = 2 (7%) African American = 1 (3%) Asian = 14 (45%) Native Hawaiian/ Pacific Islander = 3 (10%) Portuguese = 1 (3%) Caregiver Employment Full Time = 9 (29%) Part Time = 5 (16%) Fully Retired = 11 (36%) Unemployed = 6 (19%) 12
Caregiver Assessment Findings The following caregiver assessment findings were collected during phase 1 of the pilot project (see Table 2). Table 2: Caregiver Assessment Findings N=31 Care Recipient with Dementia Yes = 25 (81%) No = 6 (19%) Relationship Burden Low = 23 (74%) Medium = 5 (16%) High = 3 (10%) Objective Burden Low = 14 (45%) Medium = 10 (32%) High = 7 (23%) Stress Burden Low = 17 (55%) Medium = 11 (35%) High = 3 (10%) Depression Low = 16 (52%) Medium = 10 (32%) High = 5 (16%) Identity Discrepancy Low = 7 (23%) Medium = 15 (48%) High = 9 (29%) Uplifts Low = 6 (20%) Medium = 10 (32%) High = 15 (48%) Intention to Place Yes = 5 (16%) No = 26 (84%) Weekly Total Hours of Care Mean = 44.7 Range = 4 128 Caregiver self-reported health Poor = 5 (16%) Fair = 6 (20%) Good = 15 (48%) Very Good = 5 (16%) Caregiver Income Less $10k = 3 (10%) $10k 15k = 3 (10%) 13
$15k 25k = 5 (16%) $25k 35k = 3 (10%) $35k 50k = 8 (25%) $50k 75k = 6 (19%) More $75k = 3 (10%) Care Recipient Unmet ADL Low = 5 (16%) Medium = 15 (48%) High = 11 (36%) Care Recipient Unmet IADL Low = 2 (6%) Medium = 11 (36%) High = 18 (58%) Care Recipient Living Arrangements Alone = 5 (16%) With Another Relative = 2 (7%) With Caregiver = 23 (74%) Nursing Home = 1 (3%) Three Month Follow-up with Caregivers The TCARE protocol indicates that as a follow-up, care managers administer the short TCARE screener with caregivers. This follow-up period was set at 3 months. Scores from the screener determine whether a full assessment and support plan revision is needed. However, MCOA care managers elected to utilize the full in-home assessment as the follow-up instrument. This full assessment was completed with 27 out of the 31 caregivers. In other words, the TCARE protocol indicates that the screener is used to determine whether a full assessment and support plan revision is needed. However, in Hawaii s pilot, scores from the full assessment was used to determine whether a support plan revision was needed. For example: 1) If a caregiver s burden scores and identity discrepancy scores were low, and if the caregiver did not have an intention to place their care recipient in an institutional setting, a support plan revision was not needed. 2) If caregivers demonstrated high burden scores and identity discrepancy scores and did have an intention to place, then another support plan (or revision) was needed. Of the 27 participants who completed the full assessment, scores from 4 out of the 27 full assessments actually did not meet the criteria to trigger an in-person meeting to revise the support plan. Twenty three participants did meet the criteria to trigger a support plan revision. This may mean that the caregiver s situation stayed the same or even worsened. However, it is 14
more likely that the window of time (3 months) is too short; it takes time to link caregivers to services. Of the 23 participants that did meet the criteria to trigger a support plan revision, only 11 support plan revisions were completed. Care managers reported that they were unable to complete all the support plans for a variety of reasons, such as having to travel to another island to meet with the caregiver, caregiver appointment cancelations, and other work that delayed their ability to complete the processes within the required timeframe. Findings from Caregiver Interviews Two themes emerged from the telephone interviews with a sample of caregivers. 1. Increased accessibility and awareness of a Caregiver Network Seven caregivers identified that working with their care manager on TCARE helped them become more aware of services that were available to them in the community. One caregiver shared that the adult daycare her husband had been attending prior to her participation in TCARE is now providing her husband with bathing services. This caregiver went on to say, The adult day care has been more open with us and I feel that we are partners now; I guess the system is really working. Extending beyond their increased accessibility and awareness of services in the community, all participants shared that they have developed strong rapport with their care manager. Caregivers acknowledged their comfort in contacting their care manager in the future if needing additional assistance, which further extends their network of support. 2. Significance of Caregiver s Role The TCARE program s singular, person-centered focus on a caregiver is unique. For many who participated in this pilot project, this is the first program they ve participated in that has placed the emphasis on the caregiver as the center of assessment and support planning. Caregiver participation is vital to the TCARE processes. One participant exclaimed, [TCARE] gave me an opportunity to put in my thoughts on what is important as a caregiver. Moreover, caregivers acknowledged that the TCARE program was one of personal discovery, validation, and gratitude. One participant summarized her participation in the program by stating, The questionnaire at the end [of assessment] was so helpful; an eye opener. It made me realize that I m pretty lucky to be the caregiver of my husband. Lastly, another participant admitted, She specifically mentioned what I m doing okay; that s really important because caregivers are just doing the best they can. 15
Summary and Discussion of Caregiver Findings Qualitative findings indicate an increased awareness of services and supports in the community as a result of their participation in the TCARE pilot project. Overwhelmingly, caregivers felt that the TCARE processes strengthened their rapport with their care manager, which largely contributed to their opinions and experiences in the program. Not only did the program foster a stronger relationship with their care manager, but it also validated the caregiver s responsibility to their care recipient, the uplifts in their life, and objectively detailed their challenges. It is difficult for evaluators to indicate whether the TCARE model improved caregiver support in this pilot project. First, care managers had difficulty completing the follow-up assessment and support plan with caregivers. However, administering the short TCARE screener over the phone may be more feasible for care managers. The majority of caregivers (23 out of 27) did need additional support at the 3-month time period. Only 4 did not need additional assessment and support, based on their scores on burden, identify discrepancy, and intention to place questions. This finding may indicate that the caregiver situation did not change, or even got worse. However, this finding can be interpreted differently, that it takes time for care managers and caregivers to connect with services. The 3-month timeframe is likely too short. Future evaluations will need a larger sample size, and a longer follow-up period to note changes in caregiver outcomes. For some, the primary challenge was a language barrier. Echoed by care managers throughout the project, the University of Hawai i researchers also experienced difficulty communicating with caregivers when interviewed during the evaluation. Often times, caregivers required questions to be repeated and rephrased several times to ensure they were able to understand what was being asked of them. In addition, some caregivers were not able to distinguish TCARE from other support services they are receiving from MCOA (e.g. the Community Living Program). Key Informant Interviews Findings from Interviews with Maui and Honolulu AAA Executives. Conversations with Hawai i s AAA directors provided evaluators with a more comprehensive assessment on the feasibility of TCARE s statewide implementation. Strongly motivating the information shared by each AAA director was their respective county s ADRCs, which are at very different stages of implementation and development. Findings from these key informant interviews are summarized into three major themes (1) developing buy-in, (2) ADRC expansion, and (3) programmatic resources which are discussed below. 16
1. Developing Buy-In Similar to the standardization of a statewide assessment for older adults, integrating a statewide evidence-based assessment and care management program such as TCARE will require a paradigm shift among staff and administrators alike. During a time where Hawai i s systems change initiative requires each AAA to dedicate their resources to developing an ADRC, the AAA directors interviewed shared that it will be important to demonstrate the value of the TCARE program to gain support. More specifically, it will be essential to convey how TCARE makes the ADRC processes more efficient and services more accessible to caregivers. Developing buy-in will also require additional training on TCARE. As the pilot site for this project, the Maui County Office on Aging is the only AAA to have received TCARE training to date. As such, Maui s AAA County Executive was well versed on TCARE prior to the key informant interview. Honolulu s AAA County Executive, however, received no training on TCARE prior to the key informant interview and therefore required some background information on the program prior to the discussion. Although Honolulu s County Executive had little information on TCARE prior to the interview, she felt that the program may be feasible for her County s ADRC moving forward. Caregiver LTSS were noted by each of the AAA County Executives as lacking in their respective counties, lending to the support for an evidence-based caregiver program such as TCARE. 2. ADRC Expansion: Consolidated Statewide Data System As the single point of entry for access to public long-term support programs, the efficiency of Hawai i s ADRCs is paramount. Both AAA County Executives identified the efficiency of TCARE as imperative to the feasibility of the program s statewide integration. Additionally, each AAA County Executive highlighted the vast resources that have been dedicated to the development of the current statewide client data system, Harmony Information System, during the ADRC system s change initiative. Investing in a new statewide data system for caregivers, through the TCAREe system, may not be prioritized as an efficient use of the limited ADRC resources moving forward. If the ADRC expansion will adopt these standardized statewide assessment tools for caregivers, the AAA County Executives discussed their interest in integrating the TCARE assessment tools within Harmony Information Systems. Consolidating all the ADRC assessment tools within one statewide data system is perceived to be more feasible and efficient. As one AAA County Executive noted, There are a lot of great pilot and standalone projects. We need to make thoughtful decisions on how everything fits together. 17
3. Programmatic Resources Not surprisingly, much of these discussions were focused on the ADRC resources that would be available and necessary to implement and sustain a statewide TCARE program. To determine whether or not their respective ADRC would be able to implement the TCARE program, the AAA County Executives would need to consider the costs of training and sustaining TCARE assessors, the availability of ongoing technical assistance, AAA access to TCARE data, and the resources available to aid the implementation and sustainability of their TCARE programs. AAA County Executives raised questions about EOA s intentions moving forward, and more specifically, whether or not funding would be available to the AAAs if TCARE were embedded within their contracts in the future. Lastly, in considering how to maximize AAA resources, Maui s AAA County Executive discussed the potential for TCARE to be a tool to aid AAAs in prioritizing public funding for caregivers in the future. She noted, I would like to make it so that anyone who receives family caregiver services is assessed through TCARE first. By doing so, Maui s AAA County Executive believes that TCARE will enable AAAs to identify at-risk caregivers (those with medium to high levels of burden or those who are considering placing their care recipient in a long-term care facility) and target limited public services to those most in need. Interview with EOA Staff In addition, UH interviewed EOA to further explore the feasibility of TCARE s statewide integration. Findings from this key informant interview are summarized into three major themes (1) programmatic resources, (2) reconceptualization of caregiver LTSS, and, (3) caregiver LTSS prioritization which are discussed below. 1. Programmatic Resources EOA acknowledged that developing sustainable resources for TCARE integration will require innovation and some consideration on how funding streams may be allocated to the AAAs in the future. Resources from the Older American s Act for example, administrative funds from Title III or the National Family Caregiver Support Program may present opportunities for EOA to consider redirecting funds to aid TCARE sustainability. ADRC implementation funds may afford some assistance in the initial integration of TCARE into the statewide ADRC; however, EOA noted that this was not a sustainable source of funding. Legislative funding through the state s Kupuna Care Program may also open an opportunity for future resources; however, with a lack of administrative rules for the Kupuna Care Program currently, EOA cautioned that extending this funding to TCARE may be difficult. Based on the interest of the AAA County Executives, and in addition to the additional funding for its development, EOA acknowledged 18
that consolidating the TCARE assessment tools into Harmony Information Systems would require additional conversation with Tailored Care Enterprise, LLC. To maximize the value of TCARE to AAAs, EOA discussed the need for further resources to develop a consolidated statewide ADRC resource database and a robust crosswalk of caregiver LTSS. EOA noted that this necessitates staffing at the state level, however, it may require innovative approaches to fulfilling this function (e.g. volunteers). The upfront investment in a consolidated resource database that includes a robust crosswalk of caregiver LTSS will be substantial; however, EOA highlighted that the benefits have the potential to far exceed the costs. 2. Reconceptualization of Caregiver LTSS EOA shared that a fragmented framework has largely limited the county resource databases to services that are contracted through Hawai i s Aging Network. Consequently, support planning has been limited to generally include services that are contracted or familiar. A consolidated database with a crosswalk of caregiver LTSS will foster a reconceptualization of LTSS for both caregivers and older adults. By focusing resources on the development of a consolidated ADRC resource database, the boundaries on what constitutes a LTSS will be pushed thereby evolving support planning. EOA shared that not only are resources needed to develop the ADRC resource database, but resources must be invested into training ADRC staff on the criteria for a service to be included in the database, the importance of integrating informal assistance into support planning, and maximizing the utility of the database once developed. 3. Caregiver LTSS Prioritization Aligned with all key informants interviewed, EOA noted the ongoing challenge of serving an escalating population of older adults and their caregivers with limited public resources. To meet this rising demand, EOA shared that they are working with the AAAs and ADRC operation s workgroup to develop a prioritization tool for to target public services to older adults most in need. EOA mentioned that TCARE s screening tool enables a similar approach to targeting public services, as it identifies caregivers who are most at-risk based on their burden scores and intention to place their care recipient. Interviews with TCARE Implementers in Other States All three of the states interviewed Washington, Michigan, and Minnesota have been involved with TCARE since the origin of the program. With each of the states, the interest in using TCARE was influenced by a desire to adopt an evidence-based caregiver program. Minnesota views TCARE as a service lending itself to objectivity, which was highly desired within their state. Washington s legislature wanted to see discernible outcomes for their state s 19
caregivers, and with TCARE s standardized tools, it was possible to measure the impacts of the program. Each of the three states have administered the TCARE program through their State Unit on Aging (SUA), with implementation through their AAAs. Not all of the AAAs provide the TCARE program as a direct service through their organization, however. Some AAAs subcontract the TCARE program through community organizations. In Minnesota, for example, AAAs function more as planning and advocacy organizations, contracting direct services like TCARE out to community providers. Since inception, each state s TCARE program has evolved and changed. Through this project s evaluation, conversations with each of these states has provided insights to inform the feasibility of TCARE s statewide integration in Hawai i. Findings from these key informant interviews are summarized into two major themes (1) operationalizing TCARE, and (2) sustaining TCARE which are discussed below. Operationalizing TCARE: Grass roots versus State facilitated approaches The TCARE operational models for each of the three states interviewed varied significantly. Grass roots approaches were employed by Michigan and Minnesota, both of whom did not mandate TCARE within their AAA contracts. Minnesota, however, requires their AAAs to complete assessments with all caregivers, identifying required elements (all of which are included within TCARE) yet leaving the choice of whether or not to use TCARE up to the caregiver consultant (title given to Minnesota s TCARE assessors). Michigan is looking to follow Minnesota s model, and is currently considering how to change by also requiring caregiver assessment elements, yet not mandating TCARE specifically. Washington s TCARE model had a very different evolution, as it was facilitated by the SUA through a directive from their state s legislature in 2007, and integrated as a mandatory statewide program within all the AAAs in 2009. The state of Washington has implemented TCARE statewide within each of their 13 AAAs (4 of the AAAs are also ADRCs). Mandated through their contracts with the SUA, each AAA is required to provide TCARE. Some AAAs provide TCARE internally and some contract with community organizations to operate the program. The most common pathway for a caregiver to be connected to Washington s TCARE programs is through information and assistance (I&A) with the AAAs. Washington also utilizes the TCARE screener, which is not a mandatory component of the protocol. The TCARE screener provides Washington with a tool to identify and prioritize caregivers who are most in need and whom would benefit from TCARE s in-home assessment and care planning. Mandating TCARE for a state s caregiver assessment may reduce many of the challenges identified by Michigan and Minnesota during their key informant interviews. For example, 20
when discussing the system s impacts of TCARE with Minnesota, they shared that had the State made TCARE mandatory, they may have experienced more robust and wide reaching program impacts. Furthermore, both Michigan and Minnesota noted challenges related to program scalability. As a service intended to augment their state caregiver assessment, it can be difficult to develop sufficient buy-in to substitute TCARE for the caregiver assessment tools currently in place. Consequently, TCARE may become an outlier program, as noted by Michigan, with program sites using the TCARE protocol on a smaller scale. Once operationalized, all three states identified multiple pathways for caregivers to access their TCARE programs. Most commonly, however, caregivers are connected to these state s TCARE programs through information and assistance (I&A) with their respective AAA. Other conduits into TCARE programs were caregiver support groups, other caregiver programs such as Powerful Tools for Caregivers, or through senior helplines. TCARE Sustainability Michigan, Minnesota, and Washington all attributed the sustainability of their program largely to their investment in TCARE trainers. Attrition of TCARE assessors was an inevitable challenge noted by each state. Through TCARE s Train-the-Trainer program, however, they are able to train TCARE assessors by utilizing trainers within their respective state, reducing ongoing programmatic costs and fostering sustainability. At their program s inception, Washington s partners formed a policy oversight committee charged with developing comprehensive policies for implementation and, in response to budget constraints, establishing restrictive criteria for assessments and costlier services. Almost all of Washington s AAAs have a TCARE trainer, which enables them to train new TCARE assessors and sustain their programs. Despite the significant reduction in programmatic costs a state experiences over time through their investment in a TCARE Train-the-Trainer model, as evidenced the states interviewed during this evaluation, ongoing resources are required to sustain a state s TCARE program. For example, each TCARE assessor s certification must be renewed annually with Tailored Care Enterprise, LLC. ($500 per TCARE assessor). Creative mechanisms to finance these ongoing costs were shared by each of the states interviewed. Each state highlighted opportunities to utilize grant funding to sustain their TCARE programs at some point in time. As soft sources of funding, though, grant funding cannot permanently sustain a state s program and so other sources of funding must be secured. Michigan, for example, mentioned that they are currently exploring the use of Title IIID funding from the Older American s Act for TCARE. States must be able to demonstrate the impacts and outcomes of their programs to develop sustainability. A remarkable example of how states can use data to secure additional program 21
resources was highlighted in Washington. By utilizing TCARE research to demonstrate the need to serve caregivers before they burned out and considered long-term care placement, in 2011, Washington successfully leveraged an additional $3.45 million from their legislature to expand the state s TCARE program. This additional aid also enabled a robust review of the state s investment, as it was assumed the funding would divert seniors from entering into more costly long-term care Medicaid placements by better supporting their caregivers. The review demonstrated that individuals whose caregivers received a TCARE screening were, in fact, less likely to enroll in Medicaid long-term care services. Using TCARE data, which is collected by the AAAs and monitored by the State, Washington continues to be successful in obtaining legislative support to help sustain their program. In addition, Washington is using the data to explore additional long-term aid, such as getting a federal match through a Medicaid waiver application the state is currently working on. Findings from Focus Group with MCOA Care Managers The focus group with MCOA care managers focused on experiences piloting the TCARE program and recommendations for change and cultural tailoring. Please refer to the Appendix for the Focus Group Questions. The following section lists questions and describes major findings: Q: Primary health and other needs of Kūpuna are these similar or different from our community [state]? A number of primary health and other needs of Kūpuna were identified; some were viewed as similar to other geographic sites and others as unique to Maui County. All agreed that there were pockets of older adults and caregivers who faced social isolation. There was also agreement that Oahu [Honolulu County] has more services than are available on Maui County. Although wide ranges of older adult needs were discussed, the most common response was the need for housing. Three of the six participants stated that housing was a problem ( We do have more resources on Maui in some sense, but what s lacking is housing--senior housing, assisted living; I don t see housing needs as extensive on Lanai/ Molokai; [There is a] 2-5 year wait for senior housing on Maui after applying ). Other comments shared were around those needs related to transportation, and care for meals/shopping. Maui County is a rural community and as such health services were viewed by many as limited or in some cases non-existent, as in this comment: there is only one geriatrician on Maui in Kula. The lack of services is especially evident on Molokai and Lanai ( i.e., no emergency room care so [you] have to stabilize people and then fly them over, you cannot get a cast for a broken bone ). Others noted that there were virtually no pharmacies on these islands; and on Lanai there is no veterinary care. One participant brought up a comment about elder abuse, noting that that there are no APS offices on Molokai and Lanai. Moreover, reporting abuse to 22