Massachusetts Guardianship Policy Institute
Annual Report 2018-2019
Table Of Contents:
I. INTRODUCTION TO THE WORK OF THE INSTITUTE
The Massachusetts Guardianship Policy Institute (the “Institute”) was established in 2015 to educate and advocate for a stronger public commitment to persons with decisional needs, especially those who are the poorest and most socially isolated.
Over the past three years, educational, colloquial and networking events sponsored by the Institute have reached more than 1,000 professionals throughout Massachusetts, who have responded with unprecedented enthusiasm and a new message of hope for public guardianship. Legislation has been filed that has engaged lawmakers like never before with the evidence that public action is needed. The Courts have welcomed these developments with extraordinary openness and creativity of their own. The state’s social service agencies so far have been slow to respond, but we have encountered pockets of engagement and cooperation that may prove pivotal to the ultimate success of the public guardianship mission.
A. The Changing Face of Guardianship
Public policy toward guardianship always has been complex, but today it concerns an especially fast‐moving target. In 2017, for example, at least two cases of systematic exploitation of seniors by court‐appointed fiduciaries were reported in national media. These events did not happen in Massachusetts, but they involved other states with judicial processes not entirely different from ours.
It is clear from these cases that we not only must provide qualified and caring decisional support for all those who need it, but we also must do more to ensure oversight of both family and professional fiduciaries with responsibility for such individuals.
The assurance of oversight is fundamental to the task of the public guardian. This is a challenging message in an age of small government. But evidence of the need is compelling.
Guardianship laws have changed dramatically over the past 30 years, adopting greater protections and increasingly “person‐centered” approaches. The Institute has recognized this trend from the outset and strongly supports it.1
B. Supported Decision‐Making
Coinciding with other recent changes in public policy toward guardianship, a new concept of decisional help, called “supported decision‐making” (SDM), has emerged in parts of Europe, Canada and the U.S., as a non‐judicial alternative to guardianship. The idea of SDM is to allow a person who may need support to choose voluntarily a circle of supportive individuals – friends, family and/or trusted caregivers – who agree to advise the individual, without claiming to act for him or her. No court proceeding is involved, and the individual is never declared lacking in legal capacity. SDM instead relies upon a written agreement between the principal and his or her support team.
SDM promises to be a major factor in meeting decisional needs in the future, especially for persons with developmental disabilities. The Institute is doing all that it can to understand SDM and to engage its advocates in the discussion of public support for decisional needs. It is not clear whether or how SDM would fit into the concept of a Public Guardian, or the extent to which SDM as presently conceived can be made available to the most indigent and isolated persons. But This is a conversation that has only just begun.
C. Looking Ahead
(1) Special Commission to Study Guardianship. This Commission was proposed in legislation drafted in 2018, and is expected to become law by 2019. One of the Commission’s express tasks will be to assess the need for a public guardian, and it will boast a 22‐person panel of experts to help form a recommendation.
(2) Pilot Public Guardian. It is anticipated that a demonstration project will start operating in 2019, in one or two counties in Massachusetts, to show how a Public Guardian can address guardianship needs in Massachusetts. This program will represent one component – the direct services element – of the public‐private partnership model that the Institute believes can succeed in the Commonwealth. (This model is described on Pages 5 and 6 of this Report.)
(3) Evidence of the Cost of Unmet Guardianship Needs. Research sponsored by one of the Institute’s collaborating organizations, Guardian Community Trust, is closing in on the nexus between public guardianship and cost savings for hospitals, courts, towns and other institutions. 2019‐20 will see new studies that move ever closer to establishing evidence of linkage between public costs and the failure to provide public guardianship.
(4) Massachusetts Guardianship Academy. The Institute is committed to training guardians and conservators, and has developed curricula for professional and family fiduciaries that will be offered beginning in January, 2019. Many inputs into these materials developed from a Listening Tour that went on the road in the spring of 2018, visiting 18 locations and reaching more than 600 engaged professionals throughout the state.
(5) Northeastern Law School Student Project. The Institute is advising students enrolled in the Legal Skills in Social Context program, a social justice clinical offering at Northeastern University School of Law, to develop training materials for persons who wish to volunteer under an SDM agreement. This groundbreaking project promises to be a boost to those who hope to see SDM used more widely in Massachusetts.
D. To Our Supporters
The Institute is grateful to the hundreds of individuals who have made the last three years a turning point for public guardianship in Massachusetts. We are strong because you are strong. We look forward to a better, more compassionate state policy toward the most isolated and indigent who need decisional help. And for those who participate with us in this mission we look forward to a future of success and more effective public policy.
1 See State WINGS
II. ADVOCACY FOR A PUBLIC GUARDIAN: STATUS REPORT
Less than one in four of the most isolated and indigent persons with decisional impairment in Massachusetts today receives publicly‐financed guardianship or conservatorship services. The financial costs of this public policy failure are staggering. Research commissioned by the Institute in 2017 indicates that costs associated with guardianship, including chronic shortages of suitable guardians for the indigent, are costing public and private hospitals alone more than $20M annually.2 That cost is at least ten times more than Massachusetts spends on all of its public guardianship programs combined.3
The social and moral costs of neglected guardianship needs are equally serious. When decisional support is delayed, people who cannot understand or communicate their choices are treated without having a voice. Or they linger for weeks in medical units until courts can convince a volunteer to step in. Quality of life, due process and respect for the needs of the health care system all fail when society neglects the decisional needs of the poorest and most isolated of its citizens, as Massachusetts does today. The problem is demonstrated by the following graphic:
A. Legislative Efforts
State Rep. Paul Brodeur and State Sen. Cynthia Creem sponsored matching bills in the House and Senate in the 2017‐18 legislative session to establish an Office of Public Guardian. This proposed legislation had support from legislators focused on the needs of seniors, but it did not receive a strong endorsement from interest groups for younger persons. It also was challenged by the complex ethical issues that are raised by any proceeding that allows surrogate decision‐making through an involuntary process.
Rather than create a public office immediately, a consensus emerged to establish a Special Commission to study guardianship, including the need for a public guardian, and to report to the Legislature during the 2019‐20 session. This legislation, though unopposed in both the House and Senate, did not make it through the hectic negotiations around the budget in the last few days of the 2017‐18 session.
As this Report goes to print, it is anticipated that the Commission bill will be enacted either during the remaining weeks of informal session this year, or that it will be enacted early in the 2019‐20 legislative session.
B. Response to Changing Expectations
Today we know that the Public Guardian must have answers for at least three major concerns:
Intervening too much. Unnecessary or excessive imposition of guardianship causes a perceived loss of autonomy and an unjust degradation of legal status for those affected.
Intervening too little. Lack of public resources for unmet decisional needs degrades public morality ,incurs excessive health care and other public costs, and results in an objective loss of safety and well-being to those not served.
Adequate oversight of fiduciaries. Adequate oversight of fiduciaries. Inadequate systems to oversee court-appointed fiduciaries hurts public confidence in the laws, and can lead to personal or financial harm in specific cases.
A Public Guardian plays a critical role in responding to all three major concerns:
1) Excessive intervention. This is a concern especially for individuals with developmental disabilities, many of whom have become interested in supported decision-making (SDM) as an alternative to guardianship. The Public Guardian will be in a unique position to offer the SDM model as a voluntary alternative in appropriate circumstances. It long has been the experience of many seasoned guardians and conservators that their relationship with an incapacitated or protected person often evolves informally into a pattern similar to the relationship envisioned in SDM agreements.4
(2) Inadequate intervention. A Public Guardian directly will address the second problem – access to guardianship – better than almost any other solution available today. As the “guardian of last resort,” the Public Guardian will be called upon, and prepared, to serve as court‐appointed fiduciary for individuals without other options for decisional help. Courts and the Probate Bar in the Commonwealth presently do a heroic job of attending to the “unbefriended” through the “voluntold” (or “soft pro bono”) system that now exists. But neither the judges nor the volunteers, nor almost anyone impacted by this overburdened system, thinks that it’s a sufficient effort for most of those concerned.
(3) Oversight and Public Advocacy. Finally, a public guardianship program materially can help to establish standards for guardians and conservators statewide. Massachusetts today has no public agency, apart from the Court itself, to review or formulate standards for all court‐appointed fiduciaries, or to assist in evaluating the individual performance of guardians and conservators not connected directly to a specific social services agency. 5 Also absent is a public resource for training, support, guidance or legal assistance for family and professional guardians of all stripes. A public guardianship program can serve all of these functions, as well as representing continuously in state government the interests of stakeholders who care about both the quality and the accessibility of guardians and conservators for those most in need.
C. Public‐Private Partnership Model
The model of Public Guardian that the Institute supports is a public‐private partnership, albeit with an unusual funding concept. All direct services will be provided by a self‐funded non‐profit organization that is subject to authorization, oversight and evaluation by a state Office of Public Guardianship, established for that purpose.
The mandate of the Office of Public Guardianship would include formulating standards for the Public Guardian in its role as guardian and/or conservator; developing tools for monitoring the work of the Public Guardian, and specifically for encouraging limited appointments whenever possible; taking input from the community about the quality of the services that are being provided; gathering reports from the Public Guardian and summarizing outcomes for the Courts or other interested agencies; issuing evaluations and imposing discipline to ensure that service standards are met by the Public Guardian.
The Office of Public Guardianship may also develop training materials for court‐appointed fiduciaries, either on its own or in collaboration with other organizations with similar missions.
Because of the delay in legislation to establish the Office of Public Guardianship, the Institute and its constituent partners have agreed to go forward with a demonstration project to show how the nonprofit Public Guardian will operate. The Probate Court has welcomed this new development and is helping materially to bring it about.
The demonstration project will add, however, to the urgency of establishing the Office of Public Guardianship. The oversight role of the state cannot be replicated by a private agency alone, nor can the long‐term viability and focus of the Public Guardian be assured without an active state partner. The onus is on the Legislature now to create the state office to support the agency that will provide the service.
D. Other Stakeholders
In addition to its own efforts, the Institute sponsors a Steering Committee that has met periodically since 2016, bringing together leaders of public and private organizations in Massachusetts who oversee projects related to access to guardianship. Through this venue, through research, and through ongoing participation in local and national conferences related to guardianship, the Institute continuously interacts with other stakeholders critical to advancing public policy toward public guardianship.
These parties include health‐care advocates, elder service providers, private attorneys, public agency personnel and individuals from other nonprofit organizations. (The similarity of this network to “WINGS” programs in 25 other states is discussed in the Education section below.)
2 Levine, E., Capitani, J., Jett, C. & Connors, H., “Costs of Guardianship‐Related Discharge Delays from Inpatient Hospitalization: A Statewide Estimate,” U. Mass. Donahue Institute, manuscript submitted for review (2018).
3 Three agencies— the Executive Office of Elder Affairs, the Department of Mental Health and the Department of Developmental Services – have limited public guardianship programs, which together provide guardians for about one fourth of the 4,000 or so indigent persons who need such help. While the state does not report a cumulative budget for these programs, it is estimated that the total spent on public guardianship services by all three agencies combined is well under $2M annually.
4SDM remains structurally different from guardianship or conservatorship, insofar as it is voluntary, and does not empower a surrogate to act for the individual. But a successful court‐appointed fiduciary relationship may develop into an ongoing conversation with the incapacitated or protected person, and the role of the fiduciary may shift from making decisions to helping the person make his or her own decision, and using the authority of court appointment to give effect to that decision.
5The Executive Office of Elder Affairs audits the work of its five vendor agencies, who together handle 170 of the 15,000 or so active guardianship cases in the Commonwealth. A more substantial contribution is made each year by Senior Lawyers for Justice, a program run by former Probate Judge Edward Ginsberg, in collaboration with the Volunteer Lawyers Project, which for years has helped the Probate Court directly to review thousands of Guardianship Reports annually.
III. EDUCATION AND TRAINING
The Institute’s educational mission expanded significantly during 2018. Since 2015, the Institute has sponsored a number of policy‐oriented events, both large and small, which have generated conversation about improving guardianship law and practice in Massachusetts, especially for the poorest and most isolated individuals.
In 2018, a training mission was added to the educational work of the Institute. Training programs focus less on policy than on improving knowledge and practice standards among both professionals and family or friends serving as guardians. This new mission will reach professionals, family guardians, court personnel and any other interested person.
A. Colloquia
- First Colloquium. November 10, 2015. More than 60 stakeholders affiliated with over 30 public and private social service agencies met for the first time in nearly 20 years to address public guardianship needs.
- Second Colloquium. June 13, 2016. The volunteer‐based Kansas Guardianship Program engaged with 45 Massachusetts stakeholders to discuss the Kansas experience with volunteers serving as public guardians.
- Third Colloquium. November 16, 2016. Contents of a proposed public guardianship bill were discussed with 35 stakeholders specifically interested in legislative efforts.
- Fourth Colloquium. June 21, 2017. 50 participants, many from the developmental disabilities community, discussed the effect of guardianship on their families, and considered non‐judicial alternatives.
B. Seminars
Florida Office of Public and Professional Guardians (OPPG). On September 15, 2016, Officials of the OPPG met with Institute members and colleagues to learn how public guardianship works in Florida. OPPG uses a model similar to the Institute’s recommendation for Massachusetts, in which the state agency appoints a non‐profit entity to provide direct services under the supervision of the agency. In Florida, however, state and county governments fund the service providers, whereas the model proposed for Massachusetts will use a service provider that obtains its own funding.
Washington State Office of Public Guardian (WSOPG). On November 16, 2017, Institute members met with Leesa Arthur, Executive Director of Capital Guardianship Services in Olympia, Washington, to discuss the educational requirements for Washington’s professional guardians, which Leesa developed.
Massachusetts Listening Tour. In spring, 2018, Institute members Heather Connors, Ph.D., and Traci Cucinnota, MBE, LICSW, engaged with service professionals, family guardians, lawyers and social workers at 18 locations (Senior Centers, Elder Services offices and other community locations) around the state to learn what kinds of training and support would be most valuable. More than 600 participants attended one or more of these gatherings.
C. Conferences
First Conference on Guardianship
On December 6, 2017 in Boston, MA, attended by more than 300 social workers, educators, attorneys, state agency employees and others, the 2017 Conference on Guardianship addressed clinical, legal and moral issues affecting guardianship law and practice, presented by local and national leaders on these issues.
Second Conference on Guardianship
On November 27, 2018 in Worcester, MA, attended by about 150 social workers, educators, attorneys, state agency employees and others, the 2018 Conference on Guardianship focused on risk vs. autonomy in decision‐making by guardians and conservators, including issues of sexuality, legal liability and ethical obligations.
D. Association With “WINGS” Programs
Groups similar to the Institute operate in more than 25 states in the U.S., many identifying as “Working Interdisciplinary Networks of Guardianship Stakeholders,” or “WINGS” groups. These groups support multidisciplinary efforts that advance guardianship reform, address elder abuse, and promote less restrictive decision‐making options.
The WINGS concept was formulated and recommended at the Third National Guardianship Summit in 2011. It has grown in recent years through a grant program administered by the ABA Commission on Law and Aging and the National Center for State Courts. As of 2017, five new WINGS groups had developed as a result of the grant program.
Like WINGS groups, the Institute supports better public guardianship, but attends to other guardianship issues as well. The institute considers itself in good company with the WINGS concept and presence nationwide.
E. The Massachusetts Guardianship Academy
Training for public and private fiduciaries is one of the most significant new developments in the Institute’s educational mission. The programs and offerings now supported by the Institute have been consolidated under a new umbrella, called the Massachusetts Guardianship Academy, that provides materials and training both for court‐appointed fiduciaries and for voluntary fiduciaries under non‐judicial appointments.
The Academy developed in response to research and community outreach in 2017‐18 by Institute members Heather Connors, Ph.D., and Traci Cucinotta, MBE, LICSW, who conducted a Guardianship Roundtable through the Listening Tour (mentioned on Pages 2 and 8, above), which was held in 18 locations and reached over 600 professionals. Many guardians, especially those who are a family member or friend, felt they had received insufficient training and were unsure where to turn when making decisions on behalf of the person they were appointed to help.
(1) Training Guardians, Conservators and Health Care Professionals
The Academy presently has two trainings related to guardianship and conservatorship:
(1) A full‐day training is offered for new and established court‐appointed fiduciaries, covering everything from the basics of guardianship and conservatorship, through ethical decision making and record-keeping requirements for court reporting. The program is taught by experienced guardians and attorneys, and will give participantsthe chance to complete court forms and take home a guardianship manual.
(2) An advanced class for professionals in the healthcare, aging or disability fields will address the interactions with guardians and conservators in these settings, and will explore issues such as the needs of the health care system; expectations that commonly are placed on guardians; working with fiduciaries to obtain Medical Certifiucates; criteria, procedures and practice concerns around expanded authority for guardians and conservators; and other ways to work effectively with fiduciaries.
(2) Training Agents in Non‐Judicial Appointments
In addition to training guardians and conservators, the Academy is offering a one‐hour Advance Directives program, which may be helpful for Councils on Aging, ASAPs, Senior Centers, Assisted Living Facilities and similar settings. The program will address the purpose of advance directives, the benefits of having conversations about wishes, and will walk participants through the process of choosing a healthcare proxy.
(3) Future Programs
Other protocols being developed for 2019 include a training for new healthcare proxies, webinars on issues related to decisional support, and resources for local and regional guardians, such as Guardianship Rounds, where guardians can present a case to peers and provide insight into the unique issues it presents. Further information and registration materials for all of the Academy’s programs may be found at the Academy website, www.guardianship.academy.
RESEARCH
The Institute has sponsored research in multiple reas of guardianship and surrogate decision making over the past three years, in order to better understand and advocate for those with decisional support needs. Past and current projects include—
- Analysis of the need for a public guardian in Massachusetts;
- Analysis of the cost of not having public guardianship;
- Exploration of the experience of making end of life decisions as a guardian; and
- Analysis of the impact of limiting guardianship on the quality of life of incapacitated persons.
Research includes unfunded projects being completed by Institute members directly, and through grants that are engaging outside experts on clinical and legal aspects of guardianship from throughout the country. Substantially all funding for this research has been provided by Guardian Community Trust, Inc., one of the three collaborating non‐profit organizations that sustain the Institute’s work.
A. Needs Assessment
This multi‐phase project is directed by Jennifer Moye, Ph.D., an Associate Director at the New England Geriatric Research Education and Clinical Center, under the auspices of the Boston VA Research Institute, working with a team of locally and nationally recognized specialists. It seeks to determine the quality of, and unmet need for, guardianship within Massachusetts:
Phase I demonstrated that approximately 2,800‐3,800 adults in Massachusetts could benefit from a public guardian.
Phase II examined the quality of guardianship in the Commonwealth and found a continuum: clinicians reported some guardians were responsive, quick to action and had good relationships with IPs, while other guardians were far less attentive. Significantly, clinicians in the study reported that delays in waiting for a guardian to be appointed often resulted in unnecessary treatment, discomfort and distress for both the patient and the clinician. The report suggests the need for more guardians and better processes to get qualified guardians appointed. Reports from Phase I and II can be found in the Research tab of our website. Journal articles are being completed and can be expected to be published in 2019.
Phase III is a study of American Geriatrics Society physicians. In 2016 the Society released a statement on treatment of unbefriended adults, and this study surveys doctors to better understand their policies and practices with this population. An article is being submitted for publication in the Journal of the American Geriatrics Society based on this research.
Finally, Phase IV of the Needs Assessment is a large scale analysis of guardianship data collected by the Boston VA with the goal of better understanding outcomes for people under guardianship. The study will compare people with guardians known to them and not known to them and review health and social outcomes, including those at end of life. This multi‐year project will begin data collection in early 2019.
B. Cost Analysis
This project consists of two major studies. First, a team at the University of Massachusetts Donahue Institute, including Eliot Levine, Ph.D. and Catherine Jett, Ph.D., working with Institute member Heather Connors, Ph.D., used an extrapolation technique to develop a statewide estimate of the cost to hospitals of discharge delays associated with guardianship. Delays, including the wait for a guardian to be appointed or act, resulted in considerable costs, some portion of which is passed to the public through charges to MassHealth and Medicare. Recommendations include the need for better guardianship processes to speed discharges for patients who are medically ready.
The second study analyzes data collected by an intensive care management program called GAL Services in Connecticut. This program provides additional case management services for high‐risk persons under guardianship, and has successfully decreased services utilization for people in the program. The study provides cost estimates for the services used by program participants before and after entry into the program, and suggests that guardianship programs that offer such case management may improve not only the quality of life for participants, but also offer cost savings to the state.
Peer reviewed articles for both studies are expected to be published in 2019.
C. End of Life Experience
This project, completed by Institute members Heather Connors, Ph.D. and Traci Cucinotta, MBE, MSW, is an analysis of the experience of Massachusetts guardians making end of life decisions for their clients. Because Massachusetts law is not clear on the authority of guardians to consent to “Do Not Resuscitate”, “Do Not Intubate” and “Comfort Measures Only” codes for persons under guardianship, guardians vary in their level of comfort making such decisions.
Guardians report that delays in the ability to change a code status may result in prolonged and more medically invasive dying processes than they see as optimal. This research will document many of these experiences, through analysis, help us to understand where the system works and where it does not. Publication of this study is expected in 2019.
D. Returning Autonomy to Persons under Guardianship
Literature suggests that being subject to guardianship can impact a person’s self‐esteem, social network and life satisfaction. Institute member Heather Connors, whose doctoral dissertation included a model for assessing the willingness of surrogates to allow persons under protection to make decisions on their own, versus feeling compelled to intervene.
Building on this model, Dr. Connors is developing a new study that builds upon this earlier work, seeking to understand whether adapting the supported decision making model into traditional guardianship relationships might create more opportunity for autonomy, and whether doing so may improve the individual’s quality of life. This study is in the design stage.
E. 2018 Presentations by Institute Members and Affiliated Researchers:
Connors, H., Cucinotta, T. & Gerhard, W. (2018, April). Educating Professional and Lay Guardians for Surrogate Decision Making. American Society on Aging, San Francisco, CA.
Connors, H., & Cucinotta, T. (2018, October). I Felt Like I Couldn’t Do What She Wanted: End of Life Experiences of Guardians. National Guardianship Association, Palm Springs, CA.
Gerhard, W., Connors, H. & Cucinotta, T. (2018, October). Making Decisions for Others. Conference of the Massachusetts Councils on Aging, Falmouth, MA.
Connors, H. (2018, November). Advocacy for Public Guardianship in Massachusetts. Gerontological Society of America Conference, Boston, MA.
Brierely‐Bowers, P., Connors, H. & Whiddon, N. (2018, November). Living Life to its Fullest. Decision Making: Balancing Autonomy & Risk, Worcester, MA
F. Published Research
Moye, J., Catlin, C., Kwak, J., Wood, E., & Teaster, P. B., “Ethical Concerns and Procedural Pathways for Patients Who are Incapacitated and Alone: Implications from a Qualitative Study for Advancing Ethical Practice,” HEC Forum, 2017 Jun; 29(2): 171‐ 189, also published online Jan. 13, 2017 in HEC Forum, pp. 1‐19 (© 2017 by Springer International Publishing AG, Netherlands (DOI: 10.1007\s10730‐ 016‐9317‐9)).