How States Use Data to Inform Family Caregiving Policy

Abstract:

Family caregivers are a key part of states’ long-term care systems, and longitudinal data and evaluations on family caregivers can help states more effectively develop and implement policy to support these populations. Several states have developed data-collection initiatives and evaluations to better understand how their programs can be modified to best support caregivers and care recipients. This article highlights examples of approaches to family caregiver data collection and research at the state level.

Key Words:

caregiving, data, family caregivers, caregiving policy, long-term care

As the population of older adults and people living with disabilities continues to grow, states are thinking creatively about how they can better leverage data and analytics to strengthen long-term care systems, including services that support care recipients and their family caregivers. Family caregivers are a primary source of long-term services and supports (LTSS), with Reinhard et al. (2023a) estimating that in 2021 unpaid caregivers provided approximately $600 billion worth of care. To better support family caregivers and care recipients, states can collect data on family caregiver programs and caregivers to better understand which populations programs are reaching, identify what gaps in services exist, and conduct evaluations to understand how to improve programs and policy.

In 2022, the Recognize, Assist, Include, Support, and Engage (RAISE) Act Family Caregiving Advisory Council and the Advisory Council to Support Grandparents Raising Grandchildren released the National Strategy to Support Family Caregivers to help accelerate the adoption of a comprehensive system to support family caregivers. This strategy provides a framework for states and other organizations to use in developing and advancing family caregiver supports, including recommendations for states and other organizations to help promote family caregiver research, data collection, and evaluation.

The recommendations include:

• administer the Caregiver Module of the Centers for Disease Control and Prevention (CDC)’s Behavioral Risk Factor Surveillance System [BRFSS],
• adopt caregiver assessments that are evidence-based or evidence-informed and track outcomes to determine future resource needs and programming gaps,
• adopt the use of data sets with national-level caregiving data,
• compile inventories of family caregiver services at the state level, and
• conduct evaluations of family caregiving programs.

Although data is key to informing and sustaining programs, systematic data collection and research on state family caregiving initiatives are limited. Dedicated funding streams for program evaluation are uncommon, and often states may not have the staff capacity and expertise to frequently conduct rigorous impact studies. Yet, this research can be particularly important to demonstrating the value and effectiveness of these policies. Policymakers especially need data and evaluations to better understand programs’ cost effectiveness and return on investment, which can help inform and secure future funding for services.

Despite these challenges, states and other organizations have taken a range of approaches in developing research and data-collection efforts to understand the overall impact of programs, identify gaps in services, and develop new policies and programs to address the needs of care recipients and their caregivers.

How Do States Support Research and Evaluation Activities?

States have used partnerships with external organizations, grants, and legislation to support data collection and research. For example, some states such as California have collaborated with universities and researchers to conduct targeted evaluations to inform the development of evidence-based programs and policies to support family caregivers.

California’s Family Caregiver Alliance partnered with the Betty Irene Moore School of Nursing at the University of California, Davis, to evaluate services provided by the state’s 11 Caregiver Resource Centers (CRCs). CRCs are nonprofit centers, funded by the California Department of Aging, that serve caregivers of people with debilitating cognitive conditions such as Alzheimer’s disease and traumatic brain injury.

The Institute is conducting a California Department of Aging–funded evaluation of the implementation of CareNav in CRCs (Betty Irene Moore School of Nursing, n.d.). CareNav is an online platform designed to support family caregivers by providing access to the client’s care plan, caregiver assessment, records of client encounters, and a caregiver resource library. The goal of CareNav is to improve family caregivers’ access to support and assistance outside of a clinical setting. In addition to providing valuable support to caregivers at their convenience, CRCs reported that CareNav was a useful tool for aggregating data across all CRCs to help evaluate services and inform future planning needs (Young et al., 2022).

Using national datasets offers another opportunity to collect data to inform policy. New York uses its Alzheimer’s Disease Assistance Fund to support the administration of the Caregiver and Cognitive modules of the CDC’s BRFSS in the state (National Academy for State Health Policy, 2022). Data from these modules were analyzed and incorporated into state evaluation activities. A 2022 evaluation used caregiver demographic data to compare the demographics of caregivers reached within the state’s Alzheimer’s Disease Caregiver Support Initiative to the state’s population overall, and to national caregiver populations. This 2022 evaluation also followed up on an earlier initial evaluation from 2018, allowing for longitudinal comparisons of the program (Gallant & Riley-Jacome, 2022). These data sets provided an opportunity for the state to learn more about which populations the program reached; and can be used as baseline data for targeting outreach and services to reach diverse caregiver populations.

Other approaches include collecting demographic data on currently available caregiver programs as a baseline to inform program implementation. The Texas legislature passed Senate Bill 271 in 2009, which added Section 161.079 to Texas’s Human Resources Code. This section required the Texas Health and Human Services Commission (2020) to analyze and report data to improve the state’s informal caregiver support services.

The state’s report used Texas’ Caregiver Status Questionnaire (CSQ) and Caregiver Assessment Questionnaire (CAQ) as data sources. The report provided an overview of caregiver demographics in the state, including caregiver challenges, caregiver programs in the state, and plans for new caregiver services. Also, the report noted that the Commission uses data to inform policy on respite services and that the Commission identified gaps in respite services delivery by comparing available resources in the state’s respite inventory to the state’s regional needs.

Washington State has collected more than 10 years’ worth of data on its family caregiver support programs, informing program development. Based on a legislative mandate, the outcomes of expanding the state-funded family caregiver support program were evaluated in the early 2010s. This evaluation found that the care recipients of caregivers in the program post-expansion showed, over an 18-month period, an estimated 20% lower likelihood of enrolling in Medicaid long-term care (Lavelle et al., 2014).

In 2014, the state commissioned a report on the effectiveness of using the Tailored Caregiver Assessment and Referral (TCARE), an evidence-based assessment protocol, in the family caregiver support program. The report found evidence that those who completed the protocol and remained in the program for 6 months showed improved levels of caregiver mental health (Montgomery, 2014).

Based on the findings of these evaluations and reports, Washington State incorporated two programs for unpaid caregivers and their care recipients, Medicaid Alternative Care (MAC) and Tailored Supports for Older Adults (TSOA), into the state’s Medicaid Transformation Project (MTP) 1115 waiver. These programs target individuals with LTSS needs who are not using Medicaid LTSS. MAC is for those who have a family caregiver and are eligible for Medicaid, and TSOA is for those who are at-risk of financially qualifying for Medicaid and do not necessarily have an informal caregiver. Medicaid 1115 waivers include an evaluation requirement, and an interim evaluation of the programs found slow enrollment, but high satisfaction and low usage of traditional LTSS within 6 months of enrollment in the program (Center for Health Systems Effectiveness, 2020).

Most recently, Washington State developed MTP 2.0, which includes expanded financial eligibility for the TSOA program (Washington State Health Care Authority, 2023). These ongoing data-collection efforts have provided an extensive basis of evidence to understand the effectiveness of the state’s family caregiving programs, and where programs can be adjusted or developed. This data can evaluate the estimated financial savings of using these programs, providing information for the state in determining how its programs and services can best be implemented to support more people and their caregivers.

Many organizations also collect data and resources on family caregiving that states and others can use to inform policy considerations. For example, in 2023, AARP released its newest LTSS Scorecard, evaluating LTSS systems across all 50 U.S. states in five domains, including family caregiver supports. State policymakers and organizations can use the LTSS Scorecard to compare and contrast their state’s progress with other states and the national average across multiple metrics, such as nurse scope of practice, paid family leave, flexible sick days, and others. Because the scorecard contains multiple years of data, state policymakers can track development of some metrics over time.

The 2023 scorecard reported slow state progress between 2020 and 2023 on supports for family caregivers, and that there are additional opportunities to build on innovative practices (Reinhard et al., 2023b). The LTSS Scorecard also tracks the number of states that have adopted Caregiver Advise, Record, and Enable (CARE) Act legislation. This legislation requires hospitals to identify a family caregiver in the medical record; inform them when discharge is to occur; and provide them with instruction and education on how to perform necessary medical tasks at home post-discharge. As of 2023, more than 40 states and the District of Columbia have enacted CARE legislation. States can continue to oversee the implementation of the Act by collecting data, such as via monitoring hospital quality and oversight activities (Reinhart et al., 2023b).

Conclusion

Data collection, evaluation, and ongoing research is needed to better understand the value of family caregiving supports, and how caregiving programs can be refined to best meet the needs of people who require care, and their caregivers. The value of consistent data collection and targeted evaluations to inform the development of evidence-based policies to support family caregivers cannot be understated. The 2022 National Strategy’s recommendations provide states and other organizations with concrete steps they can take to strengthen their data collection efforts to aid in designing effective caregiving policies. These steps include but are not limited to using national caregiving-related data sets; and developing evaluations of current programs. Establishing a robust data collection infrastructure can help states address the evolving needs of recipients and caregivers.

This article highlights some of the innovative ways state leaders are using data to enhance and modify caregiving programs. While challenges remain, by leveraging partnerships with external entities, grant funding opportunities, and certain legislative authorities, states can expand their capacity to fund future data collection and evaluation efforts.

Acknowledgement

This article and the RAISE Act Family Caregiver Implementation and Technical Assistance Center at the National Academy for State Health Policy (NASHP) were supported by The John A. Hartford Foundation. NASHP is a nonpartisan, nonprofit organization committed to developing and advancing state health policy innovations and solutions. The authors thank Wendy Fox-Grage for input on this article.

Salom M. Teshale, PhD, is senior policy associate, Aging and Disability, at the National Academy for State Health Policy (NASHP), in Washington, DC. She may be contacted at steshale@nashp.org. Holly Stockdale, MPH, is director, Aging and Disability, at NASHP.

Photo credit: Shutterstock/NicoElNino

References

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