Model law for guardianship restricts guardian rights to act on behalf of incapacitated individuals: Part 2

Monday, July 24th, 2017

See Part 1 for VOR’s comments included in a cover letter to the Uniform Law Commission (ULC) committee on guardianship.

Below are additional comments that VOR sent to the ULC committee. VOR’s concerns are summarized in this paragraph: 

“VOR is deeply concerned about any effort to weaken the protections of guardianship. Attempts to replace guardianship with technology or Supported Decision-making affect not only those with severe intellectual disabilities but also people with I/DD who are vulnerable to manipulation and coercion by others as well as individuals who lack awareness of the consequences of their own actions which may cause harm to themselves or others.”

To better understand the comments... 

The term “ward” refers to an incapacitated person who has a guardian who has been appointed through state court guardianship procedures.

The “petitioner” is the person in a guardianship procedure who is asking to be appointed guardian for an individual who is unable to make or communicate decisions in some or all aspects of his or her life. The vast majority of guardians are family members or close friends of the incapacitated person.

The “respondent” is the individual for whom a guardianship is under consideration by the state court. Here is a link to the draft proposal from the ULC "Committee on Uniform Guardianship, Conservatorship, and Other Protective Arrangements Act". The VOR comments reference sections of this document.

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VOR Comments to Proposed Guardianship, Conservatorship, and Other Protective Arrangements Act

Supported Decision making (SDM), Guardianship, and the Least Restrictive Standard The Prefatory Note and Section 314 speak in favor of the “least restrictive means” of serving the ward with a bias toward Supported Decision-making [SDM]. [We refer you to VOR’s Position Paper on SDM.] SDM does not offer a “least restrictive” means of providing support to an individual. For individuals who are incapable of participating in the decision making process due to their intellectual disabilities, the SDM team would be engaging in the substitute decision-making that SDM allegedly prevents. How is the substitute decision-making of the SDM team “less restrictive” than the decision-making of a guardian, especially when that guardian is a family member with intimate knowledge of the ward and motivated by unconditional love?

The term “least restrictive” should be defined in the Act. The “least restrictive means” should be defined in terms of what is actually least restrictive for the individual based on that person’s needs and preferences to the extent that the preferences are actually known or reasonably ascertainable by the guardian and the court.

Residential Choice The “least restrictive means” also entails a bias against congregate residential facilities. The Americans with Disabilities Act (ADA) and the U.S. Supreme Court Olmstead decision, which interpreted the ADA, recognize the unique needs of the individual with disabilities and their right of choice in accessing public accommodations for disabilities, such as residential services. In Olmstead, the justices affirmed the “States’ need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities,” Olmstead v. LC 527 US 581, 597 and stated,

“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle and benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” Olmstead at 601-602

Furthermore, the Developmental Disabilities Assistance and Bill of Rights Act of 2000 supports individual choice among residential options and recognizes families as the primary decision-makers,

“Individuals with developmental disabilities and their families are the primary decision-makers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options, and play decision-making roles in policies and programs that affect the lives of such individuals and their families.” DD Act, 42 U.S.C. 15001(c)(3)(2000).

Section 314 (c)(4) and Section 317 (a)(7) of the draft act requires guardians to take additional steps and to provide increased reporting should they choose an “institution,” “nursing home,” or “facility” as a residential placement for a ward. The language in these sections instills a bias against such settings. As these settings serve individuals requiring higher levels of care, the language works against the most severely and profoundly disabled individuals needing guardianship. Additionally, this language infringes on the right of choice of individuals and their guardians and flies in the face of the second prong of Olmstead which confirms the individual’s right “to oppose” placement in the community. Parents and guardians are the most knowledgeable about a ward’s overall needs, and therefore, their decision-making with respect to residential choice should be respected..

Sensitivity to certain terms (e.g., “ward”) The Prefatory Note speaks about the drafts’ updated terminology. The draft does not use the terms “ward,” “incapacitated,” and “incompetent”. These terms define why guardianship is needed, and as such, serve as protections for the individuals affected. The descriptive nature of the terms alert others to the fact that the affected individuals need additional assistance, and thus, stimulates compassion in others. “Person subject to guardianship” is non-descriptive and could actually cause confusion as to the degree of disability at hand.

Excessive Reporting VOR believes that responsible and caring individuals wanting to serve as guardian for an incompetent person should be encouraged, especially when those individuals are family members and close lifelong friends of the individual. We are concerned that the Guardian Plan required in Section 316 could discourage guardianship by adding unnecessary burdens. Given that a Guardianship Report is already required, a Plan in addition seems excessive and could be intimidating for some caring and loving people who would make excellent guardians, but are not comfortable with bureaucratic and legalistic-sounding paperwork. The Guardian Plan is likely to be redundant for individuals with I/DD who are receiving services. Most states require service plans that guardians and other family members participate in. These could easily be included as part of the evaluation of an individual for guardianship.

Visitor In Section 304, the addition of the visitor into the guardianship process adds a third party between the petitioner, the respondent, and the court. The visitor is given the responsibility to investigate, look into medical history, and make a recommendation to the court as to the appropriateness of guardianship. It raises many concerns including, what qualifications does the visitor have and how are they chosen? Do they have expertise in the myriad co-morbidities which may exist? The visitor’s feedback is purely substitute feedback, and as such, infringes upon the decision-making authority of the court and the vital and caring role the petitioner plays in the life of the respondent, especially when the petitioner is a family member and close friend.

Appointment of an Attorney Section 305, Alternative A and Alternative B, require the appointment of an attorney for the respondent, in some or all proceedings, whom the respondent must compensate. If the respondent is incapacitated, he or she is not in a position to provide direction to an attorney. The attorney would be engaging in substitute decision-making and could manipulate the respondent and work against a well-meaning and knowledgeable family guardian or close friend. Additionally, paying an attorney is a significant financial responsibility, especially for an incompetent person with limited income which in many cases may consist only of Social Security income.

Who Should Be Guardian Section 309 of the draft prioritizes the parties that can be guardian, placing family members last. A family member should be given the highest priority given their intimate knowledge of the individual and their having the greatest motivation to act in the best interest of the individual. Indeed, this is no different than the way most Americans lead their lives. When competent adults prepare their wills and estates or engage in personal and financial planning, most look to family members for advice and to help them protect their interests. Why should an incapacitated person not enjoy this same privilege? How can a law that is to protect vulnerable people be credible if it severs these individuals from their most loyal support systems? Section 310 compounds this insult by placing the “least restrictive means” to meet a respondents’ needs ahead of family members, putting technology and supported decision-making teams ahead of familial bonds. It should be noted, an incapacitated individual often requires assistance with technology, and therefore, the technology itself is subject to manipulation, and as such, so is the incapacitated individual.

When public or professional guardians are needed to protect vulnerable individuals, they must act with independence when they make decisions on behalf of their ward. For public guardians financed by the government, conflicts of interest arise. These guardians must not be pressured to make decisions that fulfill the agendas of government agencies rather than protect the interests of their wards, nor should they be pressured to adhere to an ideology that does not accept that there are individuals who cannot make decisions. VOR members have seen the adverse affects of conflicts of interests with public guardians. Model law and state courts should protect the right of all people with intellectual disabilities to be treated as individuals and not make presumptions based on their status as part of a class; nor should model law or state courts which address guardianship be unduly swayed by an ideology that does not respect the inability of some in their charge to engage in decision-making.

Termination or Modification of Guardianship Section 311 and Section 319 allows for the “adult subject to guardianship” to petition to have guardianship removed and an attorney provided. How is the incapacitated adult able to make such a determination? Such a provision potentially undermines the ability of the guardian to act in the ward’s best interest when the ward does not understand or accept the reasons for the guardians’ decisions.

Restrictions on Ability of Guardian to Protect the Ward Section 311 requires court authorization in order for a guardian to restrict communications and visitors with the ward. As the responsible party who could be held accountable if the ward is harmed, such a requirement unduly inhibits the guardian from carrying out his or her duty to protect the ward. To require the guardian to petition the court to exclude certain individuals from interacting with or visiting the ward fails to allow the guardian to use his or her best judgment in subsequent instances where contact may harm the ward. Delays caused by having to petition the court could place the ward in serious jeopardy.

In conclusion, Supported Decision-making as an alternative to guardianship does not live up to the standards for accountability and monitoring that is required in guardianship procedures. Discouraging families and close friends from taking on the responsibility of guardianship does a disservice to people with profound and severe cognitive disabilities who are not capable of speaking on their own behalf, or to individuals with mild or moderate
cognitive disabilities who are easily manipulated. Without the ability to give informed consent, these persons are unable to provide advance directives for their care or to designate a person with the authority to act on their behalf. When there is no guardian, service providers are left to make decisions that are most convenient for themselves without the oversight and protection of a caring third party without a conflict of interest.

VOR is deeply concerned about any effort to weaken the protections of guardianship. Attempts to replace guardianship with technology or Supported Decision-making affect not only those with severe intellectual disabilities but also people with I/DD who are vulnerable to manipulation and coercion by others as well as individuals who lack awareness of the consequences of their own actions which may cause harm to themselves or others.

Guardianship, SDM, and the need for better information

End of Summer

Guardianship is the legal process whereby a state court appoints a person or organization to have the care and custody of an incapacitated person who is unable to make some or all personal and/or financial decisions. 

In recent years, the federal government has funded and promoted initiatives, the most prominent being Supported Decision-Making or SDM,  to replace and limit guardianship for people with disabilities. For the most part, these initiatives are based on assertions by federal agencies and disability rights advocates that all people with disabilities are capable of making their own decisions with the appropriate supports.  These advocates assert that guardianship with the protection of the courts is neither necessary nor desirable regardless of the severity or nature of an individual’s cognitive or behavioral disabilities, except in the most extreme cases (such as when a person is in a vegetative state). 

The belief that all people are capable of making their own decisions is belied by the experiences of family members of people with severe and complex disabilities, many of whom are guardians. They are acutely aware of the degree to which their disabled family member would be harmed if he or she did not have the protection of a person who is legally authorized to act on the disabled individual’s behalf. Families generally are also aware of what happens to people who are left vulnerable and exposed to exploitation, abuse, and neglect when they do not have a family member or close friend with the authority to intervene when problems with their care and services arise.   

Judging from reports and studies about guardianship, the headlong plunge by federal agencies to fund initiatives to replace and restrict guardianship is being done in the absence of complete and reliable information. Answers to basic questions about guardianship are hard to find: How many people are under guardianship? Who are the guardians, and who are their “wards” (the individuals for whom they serve as guardians)? What are the problems or abuses in state guardianship systems that need to be corrected? How well do states enforce protections in law that prevent guardianship from being unnecessarily imposed on individuals with disabilities? What happens to people who do not have guardians who need them? There is plenty of anecdotal evidence of guardianship abuse or harm, but there is no way to generalize from this information about solutions to reform guardianship so that these instances can be overcome or avoided. For the most part, basic questions cannot be answered in any detailed or comprehensive way because states simply do not collect sufficient data to draw conclusions about the effect of guardianship on individuals with disabilities.

There have been many attempts to fill the gaps in knowledge about guardianship and its effects on people with disabilities. A report published on December 24, 2014, entitled "SSA Representative Payee: Survey of State Guardianship Laws and Court Practices", by the Administrative Conference of the United States (ACUS) is the result of a request from the federal Social Security Administration (SSA). The SSA asked the ACUS “to study current state guardianship laws and state court practices. ACUS was charged with (1) carrying out legal research on state laws nationwide governing guardian selection, monitoring, and sanctions; (2) conducting a survey that captures information on state court practices and procedures relating to guardianships, and analyzing the results of the survey; and (3) conducting interviews with up to nine state organizations or governmental entities with expertise in, or that provides services related to, adult protective services or foster care in order to evaluate their respective practices related to guardianship and benefits monitoring…” (p. 1) [all references to page numbers are from the Final Report of the "SSA Representative Payee: Survey of State Guardianship Laws and Court Practices"]

The study was instigated in part by the need for more information and coordination between the federal Social Security Administration (SSA) and the states. For instance, the SSA appoints Representative Payees to handle federal benefits for beneficiaries who are not able to do this on their own. Often the person appointed is a guardian appointed under state law. One example of how It would be helpful to the SSA to access information on current and potential guardians is for the SSA to determine whether a person being considered as a Representative Payee has been found to have defrauded or abused the ward or has otherwise been found to be untrustworthy. 

Any study as complex as the SSA survey is going to have limitations and this one has plenty. [see p. 9]. To obtain a “representative sample” that accurately reflects the members of an entire population affected by guardianship or of court system employees with knowledge of local guardianship procedures who were surveyed for this report,  would have been too costly and time consuming and perhaps not even possible with the current state of data collection on guardianship and court practices. This survey was done using a “non-probability” or “convenience” sample, and therefore the “findings from this study are not necessarily representative of the practices of all state courts.”  [emphasis added] Despite these limitations,  “…the rich quantitative and qualitative set of data is informative of the issues studied …The strategy behind this project was to cast a broad net and seek a large respondent pool to collect a dataset that would provide a rich description of the issues. The strategy was effective…” [p. 65] 

One limitation of the study that was not discussed in the report is that no distinctions were made between guardianships and conservatorships for individuals with intellectual and developmental disabilities (IDD) and the greater population of people with disabilities related to aging, mental illness, and physical disabilities. 

There is a large quantity of information in this report and, depending on one’s perspective, some parts of it will be more relevant than others. The Table of Contents [pp. i - ii] give an overview of what the report includes. I was looking for answers to the basic questions about guardianship and here is what I found:

Start with the Definitions:  

There are clear and concise definitions for the terms used throughout the report [p. 7]

• Guardian: an individual or organization appointed by a court to exercise some or all powers over the person and/or the estate of an adult determined by a court to lack capacity to make decisions on a temporary or permanent basis. When the term "guardian" or "guardianship" is used in survey questions, it should be read broadly to cover both guardians of the person and of the estate.
• Guardian of the Person: a guardian who possesses some or all powers with regard to the personal affairs of an adult. 
• Guardian of the Estate: a guardian who possesses some or all powers with regard to the finances or property of an adult. (In many states, this type of guardian is referred to as a "conservator.")
•  Incapacitated Person: an adult who has been determined by a court to lack capacity to make some or all personal and/or financial decisions and for whom a guardian has been appointed. (Some states may refer to such individuals as "persons under guardianship," "conservatees," or "wards.") 

Here are more definitions from footnotes (p. 4): 

• Public guardians are appointed by the court, and are employed to act as guardians when no private person or agency is available or able to act in a guardianship capacity. Examples include public guardian offices or social service agencies.  
• Professional guardians are guardians who are not related to the incapacitated person, and who may receive payment for their guardianship services.  
• A non-professional guardian is a guardian who is not certified or licensed as a professional, such as a family member or friend of the incapacitated person.  

Who are the guardians?

About 75 percent of all guardians are friends, family, or acquaintances of the incapacitated person. [p.3] 

This is broken down further in Exhibit 4 on [p.16], showing that for guardians appointed for “guardianship of the person”, 74% are family or friends, 9% are professional guardians, 12% are public guardians, 8% are volunteers, and 14% are “other”.

For “guardianship of the estate”, 73% are family or friends, 12% are professional guardians, 12% are public guardians, 3% are volunteers, and 18% are “other”.

Available background and other information on guardians:

“Criminal Background Checks: Almost four of ten survey respondents indicated that criminal background reports are not required of prospective non-professional guardians of the estate.” [p.4]

"Credit/Financial Reports: The vast majority of court respondents (60 percent) do not review credit or financial reports on prospective guardians of the estate." [p. 4]

"SSA Representative Payee Status: Almost half of court respondents (47 percent) indicated that the court inquires about the prospective guardian’s representative payee status in relation to the incapacitated person in most or all cases." [p.4] [This information, if known by local agencies, can be helpful in determining whether individuals are receiving federal benefits]

"Public Access to Files: Over 60 percent of court respondents (62 percent) stated that all or most guardianship case files are available to the public—either electronically or in paper form." [p.5]

Misconduct and Sanctions: "Two-thirds of court respondents (64 percent) indicated that the court had taken actions against at least one guardian for misconduct, malfeasance, or serious failure to fulfill their obligations in the past three years. In these cases, the most serious sanctions applied were the removal and appointment of a successor guardian and issuing a show cause or contempt citation..."[p. 5] 

"Record-Keeping: Two-thirds of court respondents who had reported a misconduct-related case indicated that records related to the removal of the guardian were kept in individual case files; 18 percent of respondents stated that no records were kept." [p. 5]

"Coordination Needs: Respondents who indicated enhanced coordination with SSA would be beneficial described four areas in which there is a need for greater information sharing: case information; coordination and communication; monitoring; and SSA rules and administration." [p.6] 

"Dual Guardian-Representative Payee Status: Almost two-thirds of court respondents (64 percent) did not know what percentage of Guardians of the Estate also serve as representative payee for Social Security benefits." [p.5]

Estimate of Trends in Adult Guardianship Filings Over the Last 3 Years:

"The majority of court respondents (427 or 57 percent) indicated that filings have stayed about the same. A sizeable minority—281 persons or 38 percent of those who could provide a response—indicated that filings have increased. Only 41 persons (5 percent) felt that filings have decreased." [p. 36]

67% of court systems use an electronic case management system or database. [p.29]

"Courts that use electronic case management systems in guardianship cases generally have the following capabilities: recording filing and disposition of guardianship cases; capturing additional case-level data elements (such as type of guardianship, name or age of incapacitated person, nature of incapacity); generating reminders of upcoming due dates; and tracking filing status of financial accountings. Of those with case management systems, only 31 respondents indicated systems in use that have the capacity to flag anomalies, errors, or potential 'red flags' in financial accountings. Those who noted 'Other' most commonly stated that the system was not yet in operation."  [p. 30] 

Exhibit 22: Sanctions in Cases of Misconduct-Related Issues [p. 32] "In this survey, respondents were asked to select all types of sanctions used when addressing a case of misconduct, malfeasance, or serous failure to fulfill obligations. The most common sanction [for misconduct, malfeasance, or serious failure to fulfill obligations of guardians] is the removal of the guardian and appointment of a successor guardian—89 percent of court respondents had used this strategy..."

Exhibit 26: Percentage of Guardians of the Estate estimated to also serve as Representative Payee for SS Benefits [p. 37]  "Of those respondents who provided an estimate, 41 percent of estimates were in the 76 to 100 percent range. The majority of respondents who provided estimates (68 percent) indicated that dual guardianship/representative payee status applied to at least half of their caseload." 

Adult Protective Services Organizations [p. 54] were surveyed. They offered a different perspective on guardianship. Because these programs “tend to be fragmented, and investigations are often conducted by a different office or department from that which does guardian assignments or monitoring”, representatives from these agencies could only discuss the part of their job that touched on guardianship but were “relatively unfamiliar with guardian assignation, monitoring, and removal.”..."in general, interactions with the federal government are relatively rare for these organizations." [p. 57]

The most common case type in the [APS]organizations that ACUS interviewed is that of self-neglect. "In Texas, self-neglect cases are the most common cases, followed by abuse and exploitation by family members. …Self-neglect is also the most common type of case seen by the Florida APS. In fiscal year 2013/14, Florida APS investigated 47,000 cases. Over 16,000 of these cases were classified as cases of self-neglect. A further 14,000 were cases of inadequate supervision, followed by 9,000 cases of financial exploitation and 8,000 cases of physical injury." [p. 55] 

Trends over Time and Resource Constraints [p. 57] “Representatives from the Washington, Texas, and Maryland APS programs stressed the increased demands that are being placed on their systems. For instance, a Washington representative called the recent rise in cases “astronomical,” and added that this increased demand was due to greater numbers of elderly persons in need, better awareness of elder abuse, and an increased number of referrals." [emphasis added]

"Respondents and interviewees also noted that SSA officials’ strong preference to release information directly to the incapacitated individual often made it difficult for the guardian to obtain important information. Given the physical and mental limitations that incapacitated individuals often face, it can be difficult for them to obtain, or make use of, important information." [p.65] 

Database of Guardians and Incapacitated Persons: Currently, no nationwide database related to guardianship exists…[p. 66] 

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This survey report may seem like a grab bag of observations and perspectives on guardianship that sometimes only obliquely shed light on guardianship issues. It is, however, an important contribution to accumulating knowledge on the issues and showing how little we really know. 

See more at Understanding Guardianship and SDM

Understanding Guardianship Part 3: Public guardians and Wards of the State

A 2005 report, “Wards of the State: A National Study of Public Guardianship” by Teaster, Wood, Karp, Lawrence, Schmidt, and Mendiondo, gives this definition of public guardianship:

“Public guardianship is the appointment and responsibility of a public official or publicly funded organization to serve as legal guardian in the absence of willing and responsible family members or friends to serve as, or in the absence of resources to employ, a private guardian. Since the 1960s, states and localities have developed a variety of mechanisms to address this ‘unbefriended’ population, often serving as ‘guardian of last resort.’”

The report is written from the point of view that if a mentally incapacitated person needs a guardian and has a willing and responsible family member or friend who can take on that role, this is better for the individual and less costly for the state. But if there is no one to do this, the state must find a way to fill the need for guardians. The relevance of this report is that it highlights conflicting policies within the system of care and protection for people with disabilities. We now have federally-funded advocacy organizations and agencies that, rather than encouraging families and friends to step up to the responsibility of becoming guardians, are doing more and more to discourage guardianship. This is occurring through the promotion of less formal (and less accountable) means of making decisions for people who are mentally incapacitated through Supported Decision-Making.  

The “Wards of the State" study is a combination of an extensive literature search on the topic of public guardianship, a review of case studies, and the results of surveys involving guardianship program staff from Florida, Illinois, Indiana, Iowa, Kentucky, Missouri and Wisconsin with additional material from phone interviews and focus groups. [The page numbering of the 2005 report is inconsistent and confusing. Instead of using the page numbers at the bottom of the page, I will give you the page number of the downloaded PDF file of the report: p. 8 of the PDF]

[A more recent report from 2007, “Wards of the State: A National Study of Public Guardianship” by Teaster, Wood, Lawrence, and Schmidt, is based on the 2005 report and was published in the Stetson Law Review, Vol. 37. According to a footnote on p. 194,  “Although the data used in the study were collected in 2004, this Article includes updated statutory information added after the project report...This Article relies heavily on the results and summaries developed by the Authors in [the 2005] Public Guardianship Study…” The 2007 report is based substantially on the 2005 report and comes to similar conclusions.]

There is conflicting evidence on the effect of public guardianship on people who are disabled because of advancing age or who acquire disabilities at other stages in life for a variety of reasons. One observation of the 2005 report  is that, “In truth, we have very little data to refute or substantiate this. Statistics are scant. The number of adults under guardianship in the United States remains unknown...This paucity of research makes it difficult to assess the results of guardianship reform efforts.” [p. 21 of the PDF]

The 2005 and 2007 Public Guardianship Reports cover the recent history of guardianship, its abuses, and attempts to reform it. Here are some highlights of the report that I found interesting and relevant to todays controversies over guardianship and the promotion of Supported Decision-Making as a substitute: 

• “Wards. Individuals under guardianship appear to have shifted somewhat from the older adult population (e.g., persons aged 65+) to a younger population (e.g., persons ages 18-64). In many ways, reported anecdotally, younger wards reflect a more challenging client mix. Primary diagnoses of wards were typically  developmental disabilities, mental illness, and mental retardation [intellectual disabilities]… rather than AD [Alzheimer’s Disease] or other dementias… “
• “Public guardianship programs may be categorized into four distinct models…(1) a court model; (2) an independent state office; (3) a division of a social service agency; and (4) a county agency. [p. 180 of PDF] Most states run public guardianship programs as a division of a social service agency, although this system is the most prone to conflict of interest between the agency’s role of a guardian (monitoring and advocating for services) and the role of a social services agency (providing for services). [p.6 of the PDF]
• “Overwhelmingly, when respondents provided information on strength, weaknesses, opportunities and threats, the greatest strength was that of the public guardianship staff. Most staff members [of agencies providing public guardian services] worked under difficult conditions with less than adequate remuneration and with difficult clients. Turnover of staff was reportedly surprisingly low. The predominant weakness of programs was the lack of funding…” [p. 8 of PDF]
• “In most states, a majority of public guardianship wards are institutionalized….The Olmstead case provides a strong mandate for re-evaluation of extent of institutionalization of public guardianship clients.” [p. 180 of PDF] [This has been a contentious issue in states that are pursuing deinstitutionalization contrary to the wishes of facility residents and their families. Overzealous state guardians have at times been perceived as acting for the interests of the state to close institutions, rather than in the wards' best interests. See also, “The Olmstead Decision has been Misinterpreted”]
• “Not surprisingly, …was the assertion, by nearly every program in every state of a critical lack of funding, which translated into circumscribed services for wards and inadequate staffing to meet ward needs. This is more significant now than in the past, as the demographic imperative portends more and more individuals needing guardianship services.” [p. 9 of PDF]

These are among the conclusions of the report [p. 12 of PDF]:

• States have significant unmet needs for public guardianship and other surrogate decision-making services.
• Staff size and caseload in public guardianship programs show enormous variability.
• Public guardianship programs are frequently understaffed and underfunded.
• Although some public guardianship programs use ratios to cap the number of clients, most serve as guardian of last resort without limits on intake.
• Funding for public guardianship is from a patchwork of sources, none sufficient.
• Very little data exist on public guardianship.
• Oversight and accountability of public guardianship is uneven.

This report is a comprehensive study - I have barely scratched the surface. 

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Supported Decision-Making has been promoted as a replacement for guardianship despite a lack of standards and very little evidence of its effectiveness in protecting people who are mentally incapacitated. When advocates and federal agencies speak pejoratively about guardianship and charge that people who seek it are depriving their loved-ones of their rights, is it any wonder that state courts and public agencies have difficulty in finding family members and personal friends of the individuals involved who are willing to be guardians? If the state can’t get families and friends to take on the responsibility of guardianship, the increased use of public guardians as “the last resort”, seems inevitable. Is it not likely that the unintended consequences of the Supported Decision-Making movement will be a detriment to the people they are claiming to help?

Understanding Guardianship Part 1 : Facts and Data

Opposition to guardianship for people with developmental disabilities by disability rights advocates has been growing over the last twenty years as more funding becomes available for promoting alternatives to guardianship. Supported Decision-Making (SDM) is the most recent initiative that promotes “a process in which adults who need assistance with decision-making…receive the help they need and want to understand the situation and choices they face, so they can make life decisions for themselves, without the need for undue or over broad guardianship” [from “Supported Decision-Making: An Agenda for Action”, 2014, p.1]. The Federal Administration on Community Living (ACL), under the U.S.Department of Health and Human Services, has given millions of dollars in funding for multi-year projects to promote and do research on Supported Decision-Making. Among those receiving grants are the Quality Trust for Individuals with Developmental Disabilities for their National Resource Center for Supported Decision-Making and the Burton Blatt Institute at Syracuse University in New York.

While slogging through articles and reports on guardianship and its alternatives, I was struck by how little data is available on guardianship. Very few reports make distinctions between guardianships for people with severe developmental  disabilities, people with mental illness, physically incapacitated adults, and aging citizens who can no longer handle their own affairs or are affected by Alzheimer’s or other forms of dementia. To illustrate the importance of making these distinctions, my son Danny, who has been profoundly mentally and physically disabled since birth, has never accumulated property or wealth and is unlikely to be the target of unscrupulous probate attorneys who want to get their hands on his loot. Our guardianship is the best tool we have to make sure he is not taken advantage of and that his rights are protected. My mother, however, who lived to be 98 years old and had some degree of dementia by the time she died, was a good example of someone who had everything in place for my father and I to make decisions for her and could have been at greater risk of exploitation if she had been forced into a court-appointed guardianship.

Another question is, who are the guardians? It appears that the vast majority are close family members or friends of the person needing guardianship. Guardianship abuse from family members can occur, but it appears that corporate or state guardians with dozens of wards are far less likely to attend to the needs and wishes of people under guardianship. More stringent regulation of corporate and state guardians may be warranted, but family guardians may be overly burdened by too many requirements aimed at professional guardians and may not need the same kind of monitoring and supervision by the court. 

Much of the reporting on abuses in guardianship (see the National Association to Stop Guardian Abuse) is anecdotal. These anecdotes are rarely quantified to give an overall idea of the extent or causes of guardianship abuse. Although there are horrific stories about what can happen to people under guardianship, we rarely see stories about unpaid family guardians who defend their family members against agencies and individuals who, through neglect or the intentional desire to do harm or simply to save money, exploit vulnerable people with disabilities. And then there are advocacy organizations who claim to know better than the family what people need and are often the recipients of funds for projects that may conflict with the interests of the people the advocates claim to represent. 

Speaking of anecdotes, this has to do with guardianship procedures at our local Probate Court. In 1996, we filed a petition for guardianship for our son Danny. The Court appointed an attorney to represent him, ostensibly to protect his rights and to make recommendations as to his need for guardianship and whether he had any objection to my husband and I becoming his co-guardians. The attorney never called us to find out more about Danny. My husband and I finally met him in the hallway outside the courtroom 15 minutes before the hearing at which time the attorney thought I was the caseworker from Community Mental Health who would be submitting a report to the Court on Danny's condition. Near the end of the hearing, the attorney turned to Danny and asked Danny, who has never been able to talk or communicate in any specific way, if he had anything he would like to say to the Judge. Danny did not respond. Afterwards, we assume the attorney collected his $600 from the Court, the going rate for attorneys representing people who are too poor to pay attorney’s fees. There are lots of conclusions I could have drawn from this one instance of an attorney neglecting his duties, but I talked to other families who had good experiences with court-appointed attorneys who were both caring and fair.

With that said, this is a report from Michigan called the “Task Force on Guardianship and Conservatorships; Final Report, September 10, 1998”. The Task Force was created in 1996 by the State Court Administrative Office (SCAO) after news stories were published about abuses by a professional guardian in Wayne County. 25 people were appointed to the Task Force, including probate court judges, probate court registers and staff members, both houses of the Michigan Legislature, relevant executive  branch agencies, several advocacy groups, the State Bar Association, academia, and members of the probate bar.

The goals of the Task Force were to make recommendations on the following topics:

• Reduction in the use of guardianships and conservatorships;
• Guarantee of an appropriate number of qualified and concerned guardians;
• Guarantee of adequate monitoring of guardians and court operations; and
• Institution of needed standards, training, and education.

The report said that two-thirds of the probate courts did not keep a statistical record of the total number of guardianships and of the percentage of guardianships that are limited (or partial) as opposed to plenary (or full). Although the idea of the Task Force was instigated by abuse by a professional guardian, it found that the vast majority of people filing guardianship petitions were family members or close friends of the person. Guardians often had guardianship recommended to them by other agencies or professionals. 

Here are some of the recommendations of the Task Force:

To reduce the use of guardianships and conservatorships, it recommended that local resources be established to assess the need for guardianship and develop alternatives to guardianship. It also recommended that an effort be made to educate personnel in hospitals, nursing homes, and other medical or psychological personnel to emphasize presumption of competency and alternatives to guardianship.

To reduce the unnecessary appointments of guardians, the Task Force recommended collecting better screening information on court forms, requiring court-appointed attorneys to include an evaluation of the functional capacity of the potential ward, and more training for judges on cognitive and physical impairments, mental illness, and the aging process. It would have been helpful to know how the Task Force ascertained whether a guardianship was unnecessary and how many unnecessary guardianships were found, but that was not mentioned in the report. 

Recommendations on how to better manage guardianships and conservatorships included minimum ethical standards for professional guardians, compelling courts to comply with statutes and court rules, requiring annual review of accountings, and restrictions on real estate transactions involving the ward’s property. These recommendations seem obvious and it is surprising these were apparently not already implemented by the courts that handle guardianships.

In addition, the report recommended that the Courts should increase the recruitment and training of volunteer guardians, and more guardians who are state-agency-funded and -monitored should be provided as guardians of last resort. This is also surprising, considering that the main complaint was that too many people had court-appointed guardians. The shortage of guardians available for appointment by the court is often mentioned in other reports on guardianship.

The report also includes this statement:

“Many of the recommendations may increase costs to the local funding units or state agencies. Implementation of such recommendations must only be done with a corresponding increase in appropriations to cover costs to avoid any unfunded mandates.”

Some members of the Task Force belonged to organizations that would later become recipients of the type of funding recommended by the report. This included representatives of Michigan Protection and Advocacy Services and the director of the Washtenaw Association for Community Advocacy, a local affiliate of the ARC. They received funding from the Michigan DD Council from 2002 - 2004 for the “Preventing Guardianship” project. 

More to come….

See also Comments to the National Council on Disability on Guardianship and Supported Decision-Making

Supported Decision Making versus the protections of court-ordered guardianship

"Supported Decision Making" (SDM) is an idea that seems both obvious and benign. Who could be against a person with a disability being assisted by friends, family, and knowledgeable acquaintances in making important decisions in their lives? We all do this routinely, whether it is in anticipation of buying a car, moving to a new job in a new community, or weighing the benefits and risks of recommended medical treatments. 

But what happens when SDM is proposed as a replacement for the protections of a court-ordered guardianship for a person who is incapable of making some or all decisions on his or her own behalf? Who will be making the decisions for the person? Guardians, 75% of whom are family members or close friends of the individual, are accountable to the person and the court. Without a guardian and the ability to make or communicate decisions, how is the individual protected from abuse, neglect, and exploitation?

VOR has posed this question in the following:

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VOR on Guardianship and Supported Decision Making

By Hugo Dwyer and the VOR Issues/Oversight Committee

Guardianship is the legal process whereby the courts appoint a person “to have the care and custody of a minor or of an adult who has been legally determined to be incapacitated.” Guardianships are awarded to protect the individual from abuse, neglect, and exploitation and guardians are expected to act in the best interests of the individual concerning their residential, medical, psychiatric, behavioral, and financial needs. Legal guardianship is both a responsibility and a privilege.

VOR maintains that strong, well-monitored guardianships are essential to the protection and well-being of individuals with Intellectual and Developmental Disabilities (I/DD) who cannot make decisions for themselves. 

Our membership consists primarily of people who have family members with severe and profound intellectual and developmental disabilities, many of whom have multiple disabilities that may include chronic medical conditions, seizure disorders, visual or hearing impairments, mental illness, and/or extreme behavioral challenges. Many of these individuals function at an infant or toddler’s level although fully grown and need substantial support in every aspect of life. In most cases, our disabled family members have been adjudicated incompetent and a legal guardian has been appointed for them, most often a parent, a sibling or other close relative, or a family friend.
 
As in every other branch of our legal system, there are incidents of malfeasance and abuse in guardianship: over-burdened or mismanaged court systems, probate attorneys whose primary interest is to collect fees, corporate or state guardianship systems that fail to adequately protect vulnerable individuals, isolation of wards from family or friends, and other forms of exploitation for the personal gain of guardians or guardianship agencies.

Partly as a response to these problems, new initiatives have emerged with the goal of altering, weakening, and even eliminating existing guardianship laws. Supported Decision Making (SDM) is one initiative that has been promoted by many disability rights advocates. Proponents of this system, notably the Burton Blatt Project at Syracuse University and the Quality Trust for Individuals with Disability, generally advocate on behalf of individuals with less severe levels of intellectual disability, who are usually better able to interact with their environment and can often express their own desires and articulate their needs. They have launched a campaign called “The Jenny Hatch Justice Project”, named after a young woman with Down Syndrome who challenged her parents’ request for guardianship in favor of SDM principles.

It appears that the Supported Decision Making movement would change guardianship laws to address the status of those who need guardianship the least, if at all. In the process, these changes could weaken protections for those who are the most vulnerable, the very people for whom guardianship laws were originally written. VOR is deeply concerned about any effort to weaken the protections of Guardianship.
 
We believe that guardians for individuals with severe intellectual disabilities already include a network of informed persons when making decisions for their wards. This usually includes the guardian, other family members, direct care staff and medical personnel. The more an individual is able to express his or her wishes and play an informed, responsible role in their own decision-making process, the more their participation should be included. But we believe it is irresponsible to remove the individual from the protection of the court and ongoing evaluation. Most individuals with intellectual disabilities change over time, their needs change accordingly, and their ability to make their own decisions in an informed and responsible manner should be examined at regular intervals, to make sure that they are receiving appropriate care and that all of their needs are being properly addressed.

Changes to guardianship laws in many states have already been proposed. Families should keep abreast of these changes, and advocate for their loved one if the changes could weaken the protections he or she relies upon. VOR will do its best to keep you informed. Our vulnerable family members deserve nothing less than the protections that family guardians can provide.

For more information on guardianship, visit us at our  website.

Policy Statement on Guardianship and Supported Decision Making from VOR

VOR is a national nonprofit organization that advocates for a full range of residential options and services to meet the diverse needs of people with intellectual and developmental disabilities.

VOR represents many families of people with severe and profound intellectual and related disabilities. Most of our loved-ones need substantial support in every aspect of life and many function at an infant or toddler's level although fully grown; many have multiple disabilities, chronic medical conditions and/or behavioral challenges. Some have seizure disorders, mental illness, visual or hearing impairments, or a combination of these conditions.  

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Guardianship is the legal process whereby the courts appoint a person "to have the care and custody of a minor or of an adult who has been legally determined to be incapacitated.” Guardianships are awarded to protect the individual from abuse, neglect, and exploitation and guardians are expected to act in the best interests of the individual concerning their residential, medical, psychiatric, behavioral, and financial needs. Legal guardianship is both a responsibility and a privilege.

Supported Decision Making (SDM) is a national initiative that promotes “a process in which adults who need assistance with decision-making … receive the help they need and want to understand the situations and choices they face, so they can make life decisions for themselves, without the need for undue or overbroad guardianship”. Many advocates for SDM go further in explicitly supporting the elimination of guardianship. VOR believes that SDM is not a valid replacement for legal guardianship as it lacks standards, accountability, and proven effectiveness in protecting people with significant disabilities.
 
VOR Principles:

• VOR supports guardianship for people who are determined by a court of law to be incapacitated in making decisions for themselves in some or all aspects of their lives.
• VOR supports guardians, especially relatives and close friends of the individual, who willingly take on the responsibility and duties of guardianship, as required by law, to protect the vulnerable individual from abuse, neglect, and exploitation. Most of us, including legal guardians, rely on friends, family, and trusted professionals to advise us on important decisions.
• VOR supports state courts in upholding reporting and monitoring requirements that assure the accountability of guardians to protect the rights and best interests of the individual.
• VOR opposes the granting of guardianship to anyone who has, or would have an excessive number of wards to oversee and support
• VOR opposes initiatives that are intended to eliminate legal guardianship or to make it more difficult for families and friends of vulnerable individuals to become guardians. These initiatives could result in a greater risk to people with significant disabilities for abuse, neglect, and exploitation. 
• VOR opposes Supported Decision Making as a replacement for guardianship. SDM assumes that the individual has the capacity to make decisions and give informed consent. Our disabled family members for the most part do not have this capacity.
• VOR does not oppose the use of Supported Decision Making for all who voluntarily wish to use methods promoted by advocates of SDM. However, all decisions must rest ultimately with the individual, or for those who are not capable of making decisions for themselves, with the court-appointed legal guardian. Assurances should be made that guardianship procedures are available to those who need them, regardless of their participation in SDM activities.

Federal Law Supports Family Decision Making

“Individuals with developmental disabilities and their families are the primary
decisionmakers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options, and play decisionmaking roles in policies and programs that affect the lives of such individuals and their families.” - The Developmental Disabilities Assistance and Bill of Rights Act of 2000, 42 USC 15001(c)(3)(2000)

VOR position statement