Introduction

Detailed data on guardianship is almost nonexistent and even basic information is largely unknown. At the macro level, it is unclear even how many adults in the United States are currently under guardianship.^[1] At the micro level, there is no data to illuminate the identity of those adults – their age, race, ethnicity, sex, gender identity and expression, sexual orientation, immigration status, or language spoken – or the factors that led to guardianship in the first place – their health issues, cognitive impairment, finances, housing and living conditions, and the like.

The reasons cited for the general lack of data are numerous: insufficient funding and resources, non-unified court systems that are locally governed, outdated technology or lack of technology, varying case management systems within a state and from state to state, and lack of standardized methodology to label and count cases, to name a few.

The reasons become more complex as the data becomes more granular and more sensitive. Court case tracking systems are typically not designed for guardianship cases, which, unlike other civil cases, might remain open and active for decades, potentially changing drastically over the life of the case. Parties might be reluctant to disclose detailed demographic information due to mistrust of the judicial system and a history of unequal treatment. Courts might refrain from collecting information to avoid accusations of improper motive or data utilization. Even if collected, courts might be unwilling to share the data based on perceived confidentiality or, again, fear of reprisal, in which case the data furthers no larger analysis beyond the court’s internal use.

This absence of data has hindered research and reform efforts across the larger guardianship system. With respect to more targeted, subset research and reform relating specifically to guardianship and marginalized communities – communities that have been excluded from, or faced barriers to, involvement in prevailing political, social, and economic structures, such as communities of color and the LGBTQ+ community – it has created a vacuum.

Marginalized Older Adults and the Need for More and Better Data

Because no data exists to shed light on who is currently under guardianship, let alone why, little to nothing is known about guardianship’s impact on marginalized communities. What is known, however, is that the systemic inequalities experienced over the life of a marginalized older adult can increase the adult’s risk of various harms, including chronic disease and death, which may contribute to an increased likelihood of guardianship.

Almost no hard data exists to elucidate why older adults end up in guardianship (i.e., what are the factors most likely to lead to guardianship) because, like other data points, the why of guardianship is simply not tracked. There is, however, substantial anecdotal evidence (from individual reported cases, news reports, and the experiences related by advocates, lawyers, family members, and the like) to spotlight various factors that seem likely to increase an older adult’s chances of coming into contact with the guardianship system. Those factors include some combination of advanced age, sex (women more likely than men), living in poverty, a decline in cognitive functions, diminished physical capacity, serious chronic health conditions, living alone and social isolation, and residing in a nursing home or other institutional health care facility.^[2] With respect to each of those factors, many marginalized older adults likely face increased risk.

For marginalized older adults, a lifetime of systemic racism and disparity in the areas of income and wealth accumulation, housing and neighborhood conditions, and availability and quality of health care combine to impact the aging process and increase various negative outcomes associated with aging. For example, a growing body of research suggests that experiencing racism damages a person’s health by triggering the release of stress hormones and a chain of biological events that cause premature aging, which in turn increases the risk of chronic disease.^[13] This increased risk is then exacerbated by disparities in health care. As a result of structural racism in the health care system, adults in some marginalized communities are less likely to have insurance than their white counterparts, more likely to rely on Medicaid or Medicare, more likely to receive health care in emergency rooms and nursing homes with fewer doctor visits, and less likely to trust the health care system because of a history of mistreatment and exploitation and more recent experiences of family and friends.^[14] In sum, mounting evidence shows that health disparities related to race, ethnicity, gender, and socioeconomic status interact, increasing health disadvantages. Significantly, “[t]he health risk of compounded disparities is not the sum of each but a multiple of all.”^[15]

The question of whether all of this translates into an increased risk of guardianship for marginalized older adults raises serious and significant issues. If members of some marginalized communities face an increased likelihood of coming into contact with the guardianship system, what does that (or should that) mean for courts, guardians, policymakers, advocates and interested parties, and guardianship reform more broadly? How does that (or should that) inform guardianship policy and efforts to bring equity to the guardianship system, to fight racial prejudice and eliminate implicit and systemic bias, and to ensure that both law and practice are steadfastly person-centered? Without data to inform research and analysis specifically relating to marginalized communities, the danger exists that policy and reform efforts will unintentionally repeat and even exacerbate that marginalization. Indeed, the lack of data and research, itself, becomes a form of systemic discrimination, another institutional and structural hurdle to be faced by marginalized older adults.

Calls for Data Reform

For decades, there have been calls for the collection of more and better data. Over the last thirty-five years, for example, four national guardianship summits have been convened to bring together advocates, judges, lawyers, scholars, and other interested parties to discuss the state of the guardianship system and develop recommendations for reform and improvement. At least one (or more) of the recommendations from each of those summits called for the systematic collection and evaluation of data.^[16] The Conference of Chief Justices and the Conference of State Court Administrators have similarly and repeatedly called for increased data collection by state courts.^[17]

At the federal level, the U.S. Government Accountability Office has highlighted the lack of meaningful guardianship data in at least two different reports to Congress,^[18] and the topic has been discussed at several Congressional hearings.^[19] There have even been legislative attempts to increase federal oversight and state-level data collection. Two bills were proposed in 2021, neither of which became law.^[20] And in 2023, the Guardianship Bill of Rights Act was introduced to, among other things, increase the collection and reporting of state-level guardianship data by gender identity, race, ethnicity, sexual orientation, income level, living situation, age, disability type, and reason for guardianship.^[21] At present, the bill appears to have stalled.

Current Data Reform Efforts

There are, however, ongoing efforts to improve data collection and distribution. For example, the National Center for State Courts (NCSC), in conjunction with the Conference of State Court Administrators, has developed the National Open Court Data Standards (NODS) to support the creation, sharing, and integration of court data.^[22] As NCSC notes, “[d]emand for court data are growing dramatically, [and] public and private organizations are aggressively putting pressure on courts to make court data . . . publicly accessible.”^[23] To that end, the standards are intended to standardize data and make it available to researchers, policymakers, the media, and the public to provide for transparency and improved public policy.^[24]

However, the project has limitations. First, utilization of the data standards is voluntary. The standards are offered to state courts, but there is no requirement that courts utilize them. Second, courts are free to determine which data elements they want to utilize. In other words, they can pick and choose what data to track, if any. Third, the project only standardizes data definitions. It does not create data sets or require any court to create a data set. Thus, each court is left to decide whether it is willing to collect the data and to publish that data once collected. Finally, the project does not independently gather data or house it and does not provide any court data to third-party requestors. Therefore, even if every court in the country agreed to collect data and standardized the data being collected, the data would still not be centrally collected or housed anywhere. To analyze a national issue or trend, researchers would need to obtain data from every court across the country individually.

Data collection initiatives are ongoing in various state courts as well.^[29] It is unclear, however, whether those initiatives collect and utilize data to inform the discussion surrounding marginalized communities and guardianship, such as detailed information regarding race, ethnicity, sexual orientation, and the like. Additionally, as mentioned above, the usefulness of state-level data collection efforts will remain constrained by the absence of any national data collection system or centralized repository for the data once collected.

As the repeated calls for data make clear, its absence hampers the ability of lawmakers, courts, service agencies, advocates, and others to identify and address issues within the guardianship system.^[30] The starting point of any reform effort is an accurate picture of the system in need of reform. Without data, reform becomes a “best guess” with no means of measuring success or failure or method for determining the need for refinement. Efforts to allocate funds, advance national standards, develop court improvement programs, and make evidence-based program improvements and policy changes are all impeded. Without data, “policymakers, advocates, and the legal and judicial system are working in the dark in assessing adult guardianship.”^[31]

Recommendations

• Congress should establish and fund a program for guardianship similar to the successful Child Welfare Court Improvement Program^[32] to provide funding directly to participating state courts for, among other things, improvements in case handling and the collection of data in guardianship cases.
  • Under the new program, state courts should be required to standardize data collection utilizing the National Open Court Data Standards.
  • State courts should be required to collect, among other things, data relevant to issues of marginalized older adults and marginalized communities, including, with respect to the person facing or subject to guardianship, their age, race, ethnicity, sexual orientation, gender identity, transgender identity, sex, language, tribal affiliation, and type of disability and factors leading to the guardianship filing.
  • State courts should be required to provide the collected data (in at least an aggregated format) to a national data repository to be created and funded by Congress as part of the new guardianship court improvement program, and all data should be made available to courts, advocates, researchers, policymakers, and other interested parties within the larger guardianship system.
  • State courts should be required to implement policies and practices that ensure collection of the above-referenced data utilizing best practices for the collection, storage, and dissemination of data in a safe, respectful, and culturally sensitive and appropriate manner.
• The NODS data standards should be revised to include sexual orientation as a data element of participant data. The recommended data elements to be collected in guardianship cases should be revised to include all of the personal participant data elements listed above.
• State high courts should create and implement court rules and policies requiring lower courts to collect the above-referenced data elements in guardianship cases, as well as rules requiring lower courts to make collected data available to researchers, advocates, and others (in at least an aggregated format).
• State courts should create and require the utilization of standardized guardianship forms (e.g., initial petitions, annual report, and the like) designed to collect the above-referenced data elements. Court forms, both existing and newly created, should be available in multiple languages and should adhere to best practices with respect to, among other things, plain language, cultural competency, and person-centeredness.

Advancing equity in guardianship and reform efforts requires looking at various parts of our systems and structures. Additional Justice in Aging publications will examine this topic by exploring the promotion of less restrictive alternatives to marginalized communities and the creation of inclusive, culturally sensitive statutory bills of rights to address the unique concerns of marginalized older adults.

Endnotes

1. Probably the two most cited numbers come from the National Center for State Courts, which estimates that 1.3 million adults are currently living under guardianship or conservatorship, and their guardians control roughly $50 billion in assets. However, those estimates are based on only a handful of states that track and report reasonably reliable data. The estimates are also over six years old. See National Council on Disability, Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 65 (2018), available at https://www.ncd.gov/assets/uploads/reports/2018/ncd_beyond_guardianship.pdf. ↑

2. See, e.g., Joseph A. Rosenberg, Poverty, Guardianship, and the Vulnerable Elderly: Human Narrative and Statistical Patterns in a Snapshot of Adult Guardianship Cases in New York City, 19 Geo. J. on Poverty L. & Pol’y 315, 322-24, 332-42 (2010). ↑

3. See Administration on Aging, 2020 Profile of Older Americans (2022), available at https://acl.gov/sites/default/files/Profile%20of%20OA/2020ProfileOlderAmericans_RevisedFinal.pdf. ↑

4. See Administration on Aging, 2020 Profile of American Indians and Alaska Natives Age 65 and Older (2020), available at https://acl.gov/sites/default/files/Profile%20of%20OA/AIANProfileReport2021.pdf. ↑

5. See National Institute on Aging, National Health and Aging Trends Study: Chart Book (2020), available at https://micda.isr.umich.edu/wp-content/uploads/2022/03/NHATS-Companion-Chartbook-to-Trends-Dashboards-2020.pdf. ↑

6. See Population Reference Bureau, Key Factors Underlying Racial Disparities in Health Between Black and White Older Americans (2021), available at https://www.prb.org/wp-content/uploads/2021/05/tra-41.pdf. ↑

7. 33.5% of all adults age 65 and older had one or more disabilities, compared to 47% of older American Indians and Alaska Natives, 38% of older African Americans, and 36% of older Hispanics. See 2020 Profile of American Indians and Alaska Natives Age 65 and Older, supra note 4; Administration on Aging, 2020 Profile of Hispanic Americans Age 65 and Older (2020), available at https://acl.gov/sites/default/files/Profile%20of%20OA/HispanicProfileReport2021.pdf; Administration on Aging, 2020 Profile of African Americans Age 65 and Older (2020), available at https://acl.gov/sites/default/files/Profile%20of%20OA/AAProfileReport2021.pdf. Black and Hispanic adults had substantially higher percentages in the lowest-functioning physical capacity groups. See National Health and Aging Trends Study: Chart Book, supra note 5. ↑

8. See National Center on Elder Abuse, Mistreatment of African American Elders (2020), available at https://drive.google.com/file/d/1a5RETiINudGt3e6nZgGuJGadVVQIn-bl/view; Institute on Aging, Aging in America, available at https://www.ioaging.org/aging-in-america/#livingalone. ↑

9. See Mark Mather, et al., Population Reference Bureau, Fact Sheet: Aging in the United States (2019), available at https://www.prb.org/resources/fact-sheet-aging-in-the-united-states/. The likelihood of living alone increases from 26% at age 65, to 39% at age 75, and to 55% at 85 and older. See id. ↑

10. See National Academies of Sciences, Engineering, & Medicine, Social Isolation and Loneliness in Older Adults (2020), available at https://nap.nationalacademies.org/read/25663/chapter/1. ↑

11. See Center for Medicare Advocacy, The Changing Demographics of Nursing Home Care: Greater Minority Access… Good News, Bad News (2011), available at https://medicareadvocacy.org/the-changing-demographics-of-nursing-home-care-greater-minority-access%e2%80%a6-good-news-bad-news/#:~:text=Recent%20research%20regarding%20racial%20and%20ethnic%20minorities%20in,living%20in%20nursing%20homes%20increased%20by%2010.8%25.%20. ↑

12. See id. The number of Hispanic people increased by 54.9%, Asian Americans by 54.1%, and African Americans by 10.8%. See id. ↑

13. See, e.g., Key Factors Underlying Racial Disparities in Health Between Black and White Older Americans, supra note 6. ↑

14. See Key Factors Underlying Racial Disparities in Health Between Black and White Older Americans, supra note 6; see also, e.g., Tracey Gronniger, Generations Today, The Intersections of Inequity in Aging (2021), available at https://generations.asaging.org/intersections-inequity-aging; Liz Seegert, Association of Health Care Journalists, National Study Finds LGBT Seniors Face Tougher Old Age (2018), available at https://healthjournalism.org/blog/2018/07/national-study-finds-lgbt-seniors-face-tougher-old-age/. ↑

15. See Population Reference Bureau, Disparities Related to Education, Race, and Gender Compound Health Disadvantages at Older Ages (2021), available at https://www.prb.org/resources/disparities-related-to-education-race-and-gender-compound-health-disadvantages-at-older-ages/#:~:text=Intersectionality%3A%20Disparities%20Compound%20to%20Increase%20Negative%20Health%20Impacts,sum%20of%20each%20but%20a%20multiple%20of%20all. ↑

16. See Fourth National Guardianship Summit: Maximizing Autonomy and Ensuring Accountability (2021) (Recommendations 4.1 & 6.1), available at https://www.guardianship.org/wp-content/uploads/Fourth-National-Guardianship-Summit-Adopted-Recommendations-May-2021-1.pdf; Third National Guardianship Summit Standards and Recommendations (2011) (Recommendations 2.5 & 5.3), available at https://www.eldersandcourts.org/__data/assets/pdf_file/0021/8832/third-national-guardianship-summit-standards-and-recommendations.pdf; Wingspan: The Second National Guardianship Conference Recommendations, 31 Stetson L. Rev. 595, 596 (2002) (Recommendation 4), available at https://www.americanbar.org/content/dam/aba/administrative/law_aging/guardianship_wingspan_reccs.pdf; Guardianship: An Agenda for Reform (1989) (First National Guardianship Symposium recommendations, Recommendation I-C), available at https://www.americanbar.org/content/dam/aba/administrative/law_aging/2019-guard-agenda-for-reform.pdf. ↑

17. See Brenda K. Uekert & Richard Van Duizend, Adult Guardianships: A ‘Best Guess’ National Estimate and the Momentum for Reform 109-10 (2011), available at https://www.eldersandcourts.org/__data/assets/pdf_file/0017/5435/adultguardianships.pdf. ↑

18. See United States Government Accountability Office, Elder Abuse: The Extent of Abuse by Guardians Is Unknown, but Some Measures Exist to Help Protect Older Adults (2016), available at https://www.gao.gov/assets/gao-17-33.pdf; United States Government Accountability Office, Guardianships: Collaboration Needed to Protect Incapacitated Elderly People (2004), available at https://www.gao.gov/assets/gao-04-655.pdf. ↑

19. After one such hearing in 2018, the U.S. Senate Committee on Aging noted in a report that “few states appear to be able to track the total number of individuals subject to guardianship, let alone record demographic information, the types of guardianships being utilized, or the extent of a guardian’s authority.” See United States Senate Special Committee on Aging, Ensuring Trust: Strengthening State Efforts to Overhaul the Guardianship Process and Protect Older Americans (2018), available at https://www.aging.senate.gov/imo/media/doc/Guardianship_Report_2018_gloss_compress.pdf. ↑

20. See FREE Act, H.R. 4545, 117th Cong. (2021), available at https://www.congress.gov/bill/117th-congress/house-bill/4545?s=1&r=44; Guardianship Accountability Act of 2021, H.R. 5600, 117th Cong. (2021), available at https://www.congress.gov/bill/117th-congress/house-bill/5600/text?r=21&s=1; Guardianship Accountability Act of 2021, S. 2881, 117^th Cong. (2021), available at https://www.congress.gov/bill/117th-congress/house-bill/5600/text?r=21&s=1. ↑

21. See Guardianship Bill of Rights Act, S. 1148, 118th Cong. (2023), available at https://www.congress.gov/bill/118th-congress/senate-bill/1148/text?s=1&r=21. Senator Robert Casey introduced the bill on March 30, 2023, after which it was referred to the Senate Committee on Health, Education, Labor, and Pensions. No further action has been taken to date. ↑

22. See National Center for State Courts, National Open Court Data Standards (NODS) [hereinafter National Open Court Data Standards], available at https://www.ncsc.org/consulting-and-research/areas-of-expertise/data/national-open-court-data-standards-nods. NCSC has also developed the Court Statistics Project (CSP), which produces aggregate statistics for examining trends in state courts. This data is provided to CSP annually by each state. For purposes of guardianships, the aggregate data reflects only the number of total guardianship cases filed with each court. See Court Statistics Project, available at https://www.courtstatistics.org/. ↑

23. See National Open Court Data Standards, supra note 21. ↑

24. See National Open Court Data Standards, supra note 21. ↑

25. See National Center for State Courts, Data Element Spreadsheet, available at https://www.ncsc.org/consulting-and-research/areas-of-expertise/data/national-open-court-data-standards-nods. ↑

26. See State Justice Institute, “Guardianship/Conservatorship Monitoring: Recommended Data Elements” (2020), available at https://www.eldersandcourts.org/__data/assets/pdf_file/0029/54758/GuardianshipConservatorship-Monitoring-Recommended-Data-Elements.pdf. ↑

27. See id. ↑

28. See Nancy J. Knauer, LGBT Issues and Adult Guardianship in Comparative Perspectives on Adult Guardianship 299, 311 (A. Kimberley Dayton ed., 2014), available at https://cap-press.com/pdf/2506.pdf. ↑

29. See, e.g., Center for Elders and the Courts, Conservatorship Accountability Project, available at https://www.eldersandcourts.org/guardianship_conservatorship/general-information/CAP. ↑

30. Two of the cosponsors of the federal Guardianship Bill of Rights Act, Senators Casey and Warren, went so far as to make a formal request for guardianship data to the Department of Health and Human Services and the Department of Justice, stating that the lack of data hindered policymakers and advocates’ efforts to understand gaps in the system and to find ways to address them. The Senators noted that “[b]ecause of the lack of data, it is also impossible to understand potential disparities or disproportionate impacts of guardianship policies.” See Letter from Senator Elizabeth Warren & Senator Robert Casey to Xavier Bacerra & Merrick Garland (July 1, 2021), available at https://www.warren.senate.gov/imo/media/doc/2021.07.01%20Letter%20to%20DOJ%20and%20HHS%20re%20Conservatorship.pdf. ↑

31. See American Bar Association Commission on Law and Aging, State-Level Adult Guardianship Data: An Exploratory Survey 9 (2006). ↑

32. More information on the Child Welfare Court Improvement Program can be found on the Child Welfare Information Gateway website at https://www.childwelfare.gov/topics/systemwide/courts/reform/cip/ and on the Children’s Bureau website at https://www.acf.hhs.gov/cb/grant-funding/court-improvement-program. ↑