Michigan Court of Appeals Upholds Guardian's Right to an Injunction to Prevent the Transfer of her Ward

A recently published decision by the State of Michigan Court of Appeals upholds the right of a guardian to seek injunctive relief from the Probate Court to prevent the transfer of her ward from one facility to another, based on showing that such a transfer would be detrimental to the wellbeing of the person under guardianship.

In re Guardianship of Lisa Brosamer v. Lenawee County Community Mental Health Authority (CMH) Is a case involving Lisa Brosamer who is severely developmentally disabled. Patricia Brosamer became Lisa’s guardian in 2009. Lisa’s mother cared for Lisa in her home from 1961 to 2006, when, due to the mother’s declining health, Lisa was moved into a residential treatment facility. Lisa is severely intellectually disabled and is unable to care for herself.

On Sept. 26, 2018, the guardian filed a petition with the Probate Court to stop a planned transfer of Lisa from one group home to another. Patricia Brosamer contended that the Lenawee CMH proposed transfer would be detrimental to Lisa. Lenawee CMH argued that the agency met the requirements of the law by determining that the transfer from one facility to another would not be detrimental and that the legislature did not intend for a guardian to be able to veto a decision by CMH. 

Lenawee CMH based its case on this excerpt from the Michigan Mental Health Code:

330.1536 Transfer of resident; notice; appeal.

Sec. 536.

1. A resident in a facility may be transferred to any other facility, or to a hospital operated by the department, if the transfer would not be detrimental to the resident and the responsible community mental health services program approves the transfer. [emphasis added]
2. The resident and his or her nearest relative or guardian shall be notified at least 7 days before any transfer, except that a transfer may be effected earlier if necessitated by an emergency. In addition, the resident may designate 2 other persons to receive the notice. If the resident, his or her nearest relative, or guardian objects to the transfer, the department shall provide an opportunity to appeal the transfer.
3. If a transfer is effected due to an emergency, the required notices shall be given as soon as possible, but not later than 24 hours after the transfer.

Probate Court findings

The guardian presented four witnesses, each of whom had a history with Lisa or daily interactions with her and “…might reasonably be capable of opining as to how the proposed transfer might affect Lisa’s wellbeing.” All four concluded that transferring Lisa from her current group home placement would be detrimental.

Lenawee CMH provided affidavits from three people, none of whom had a history with Lisa comparable to that of the guardian's four witnesses. According to the Lenawee Director of CMH, the decision that there would be no detriment was based on unnamed “expert” staff.

The Probate Court granted the injunction against moving Lisa out of her current placement. Lenawee CMH appealed the decision.

Court of Appeals

The Court of Appeals stated that “Although respondent [CMH] frames its argument on appeal as one regarding statutory interpretation, respondent’s [the guardian’s] argument actually concerns the probate court’s factual findings” of detriment to Lisa.

On the CMH agency's responsibility to other clients, the Court stated:

"Being sensitive to the fact that respondent must walk the tightrope of balancing the needs of consumers—sometimes against one another—with the limited resources that it has, MCL 330.1536 is clear that respondent cannot transfer a consumer if the transfer would be detrimental to that consumer. Thus, the relative hardship on respondent that the injunction imposes is no greater than the hardship imposed by MCL 330.1536 itself. Contrarily, the hardship Lisa may endure if she were to be transferred to the detriment of her wellbeing is significant. [emphasis added] Additionally, although third parties and the public have an interest in respondent’s ability to transfer consumers and balance its resources for the benefit of the community, Lisa has the right to be free of detrimental transfers, and with respect to MCL 330.1536, the interests of third parties in transfers that might be detrimental to Lisa are not relevant to whether the transfer is permissible; and, we note that nothing bars respondent [CMH] from seeking to have the injunction lifted if a transfer that would not be detrimental to Lisa’s wellbeing arises. Finally, the injunction will not be impractical to enforce.

“Based upon the above factors, and considering there was no adequate remedy at law to ensure that respondent would not be transferred, the probate court’s injunction was not outside the range of reasonable and principled outcomes.”

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This summary leaves out a number of interesting details in this case. 

For instance, at about the same time that Lisa's case manager of ten years retired in June 2018, a new case manager was brought in. This coincided with when Lenawee CMH determined that another consumer needed a bed at Lisa's current group home and concluded that moving Lisa to another group home would not be a detriment to Lisa. The guardian asked for a new case manager, “because [she] could not understand how the case manager could conclude that a transfer was appropriate while being so new and unfamiliar with Lisa.” The Court found evidence that this was true by comparing the testimony of the guardian's witnesses to the affidavits presented by Lenawee CMH.

The guardian's witnesses included:

• Lisa's doctor of 14 years who testified that, considering Lisa's age and disabilities, she lacked the "coping mechanism" to adjust to an unfamiliar setting. 
• A witness who had known Lisa for 20 years and had worked at the home where CMH wanted to transfer Lisa, said the proposed placement was not as suitable and feared that Lisa might have altercations with another resident with aggressive behaviors. 
• The guardian testified that Lisa had thrived at her current placement and had strong bonds with the staff and other residents. 
• Lisa's court-appointed attorney, who had been involved in the case since 2011, indicated that, because of the guardian's "extensive involvement with [Lisa] over the years," she was in "a superior position to any of the other witnesses or affiants know what [would] be detrimental to Lisa."

Washtenaw County, MI: Special Needs Planning

This is an announcement for a presentation on planning for the future of your DD adult. I have heard Joelle speak several times and I am impressed by her knowledge of and personal experience with people who are developmentally disabled:



The Special Needs Planning Toolbox 

Wednesday, March 20, 2019 
6:30 p.m. to 8:30 p.m. 

Washtenaw Intermediate School District 

1819 South Wagner Road, Ann Arbor 

RSVP by March 15 to Megan Kiser: kiser@mielderlaw.com, (734) 352-6950, or online at mielderlaw.com

Help your child transition to adulthood and independence with information on:

• Planning ahead to secure government benefits 
• Options for supplementing government benefits 
• Creating goals for independent living 

Presented by: Joelle Gurnoe-Adams 

Joelle focuses her practice on special needs and estate planning, trust administration, guardianship, and conservatorship, and advising families who have a loved one that is elderly or has a disability. She received her Bachelor’s degree from the University of Michigan and her Juris Doctorate with honors from Wayne State University Law School. Joelle has received several honors for her work including Washtenaw County Human Services Communication Skills Award, the Mark Weiss Endowment for Public Interest Achievement, and Bergstrom Child Welfare Law Fellowship.

"Representative Payees" and the expanded role of Protection & Advocacy Agencies

The Strengthening Protections for Social Security Beneficiaries Act of 2018 was recently passed by Congress and signed by the President. 

Protection and Advocacy (P&A) agencies will play a major role in the monitoring and oversight of the Representative Payee program under the Social Security Administration. Representative Payees are appointed by the SSA to manage Social Security benefits for people who are unable to handle them on their own. As adults, most people with DD qualify for Supplemental Security Income (SSI) and Social Security disability benefits after a parent dies, retires, or becomes disabled.

P&As are mandated by the DD Act of 2000 to protect the rights of individuals with developmental disabilities. These federally-funded agencies have different names in different states: for example, in Michigan P&A is called Michigan Protection and Advocacy Services (MPAS); in Ohio it is Disability Rights Ohio (DRO); and in Illinois it is Equip for Equality.

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This is what I have discovered so far about about the Strengthening Protections for Social Security Beneficiaries Act of 2018 and the new role for Protection and Advocacy:

The legislative history of the Act explains the changes in Social Security Administration (SSA) policy in regard to selecting and monitoring Representative Payees for beneficiaries who are unable to handle their benefits on their own. The rationale for changes to SSA policies is based on reports and reviews from the Social Security Advisory Board, the National Academy of Sciences, and the Government Accountability Office (GAO). [Links to these reports and others are in the footnotes for the legislative history]. The problem with the reports and studies that I have seen on representative payees is similar to reports on guardianship. The data available on abuse is mostly anecdotal with sensational cases being used to justify major changes to the system. In my opinion, the data is not reliable or complete enough to draw conclusions generally on what is wrong with the system and how it affects individual beneficiaries.

The SSA is attempting to improve the way it selects, oversees, and monitors representative payees by having Protection and Advocacy agencies take over this function that was previously been done by another vendor. An annual grant of not less $25 million will be distributed among P&A agencies for purposes specified in the Act.

In addition, “The SSA also would issue an annual grant to a highly-qualified national disability association to provide training and other support for the review program to the SSA and the P&A agencies. The Committee expects the SSA, P&A system, and national association to work together in partnership to ensure an effective and efficient review process, over which the SSA would retain oversight responsibilities.” The "national disability association" is not specified by name in the law.

From the legislative history:

Currently, “The SSA primarily relies on annual accounting reports and periodic on-site reviews to monitor the performance of representative payees and ensure benefits are being used properly. The Social Security Act requires on-site reviews for certain organizational and individual payees, and the SSA conducts additional discretionary reviews of other payees."

“By law, the SSA is required to conduct periodic on-site reviews for three categories of payees: individual payees with 15 or more beneficiaries; all non-profit, community-based social service organizations; and any other type of agency with 50 or more beneficiaries. The law also requires the SSA to conduct on-site reviews of state mental institutions. …”

Under the new law, accounting forms will no longer be required of individual payees who live with the beneficiary and are parents or spouses of the person receiving benefits. P&As will do on-site visits rather than rely on accounting forms to find abuse in the system. P&As may pursue additional monitoring activities based on what they find from their on-site reviews. According to the new law, in conducting reviews, a protection and advocacy system “shall have the same authorities, including access to records, facilities, and persons, as such system would have for purposes of providing services under subtitle C of title I of the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (42 U.S.C. 15041 et seq.).”

The new law also promotes information sharing between states and the SSA with agencies that have information on current or potential representative payees who may have been found untrustworthy through state Adult and Child Protective Services investigations and state hearings or investigations of court-appointed guardians.

The legislative history heaps praise on the Protection and Advocacy system that may not be deserved, considering that P&As have rarely been held to account for complaints against them by families and some advocacy organizations that object to P&As promoting an ideology of full inclusion* rather than protecting the individual rights of people with developmental and other disabilities as the law requires: 

[* full inclusion refers to the belief that people with disabilities should be completely integrated in "the community" receiving services in settings with people who are not disabled; more than 3 or 4 people with disabilities grouped or living together to receive services is considered segregated and isolating, regardless of the severity or nature of the disabilities or the need for specialized services and settings.]

“The new provision recognizes the superior training, experience, and track record of the nationwide P&A system, which began to do reviews on behalf of the SSA after the Henry’s Turkey Service abuses were uncovered. The SSA turned to the NDRN (the nationwide representative of the state P&A systems) in 2009 because of their previously-established relationship through the Protection and Advocacy for Beneficiaries of Social Security program, and NDRN’s long experience protecting and advocating for persons with disabilities.”

“Because P&A agencies are located in each state and territory, and have extensive contacts in their local communities, they receive reports from the community alerting them to beneficiaries who may be experiencing neglect or abuse. “

“The models do not incorporate other information that might indicate risk, such as housing code violations, reports of abuse of residents, high staff turnover, and so forth. Because of P&A agencies’ relationships in their local communities, in combination with their other work, they may be in a better position to identify and review risky payees.”

Whether P&A agencies would continue to promote their agenda over the rights of individuals under the new law, remains to be seen. There is nothing mentioned in the legislative history or in the law that offers protections against this. Because most representative payees, as well as guardians, are family members or personal friends of the individual beneficiaries, they (we) are a problem for the government-funded agencies and advocacy organizations because our loved-ones are more important to us than advancing their ideology.

Michigan Guardianship Association Spring Conference 2018

Charlevoix Spring

Michigan Guardianship Association’s 2018 Spring Conference

April 12th and 13th, 2018

This event will be held at the Radisson Hotel at the Capitol: 

111 N, Grand Avenue
Lansing, MI 489333

"Curriculum includes changes in Adult Foster Care rules and updates on Veterans Benefits and the Medicaid waiver program. We are also glad to announce the return of the guardianship roundtable, judges panel, and the basics of guardianship and conservatorship. Network with professionals from all over the state and meet new vendors offering services specific to your needs. All while earning an estimated 8 continuing education credits (for guardians and social workers)."

Excerpts from the conference Agenda :

Thursday, April 12th, 2018 

Understanding the Michigan Community Mental Health System

Lynda Zellar, Senior Deputy Director Behavioral Health Administration, Michigan Department of Health and Human Services

Robert Sheehan, Chief Executive Officer Community Mental Health Association of Michigan

Guardianship Roundtable 3:30 - 4:30 p.m.

Friday, April 13th, 2018 

Judges Panel, 9 - 10 a.m. 

Presentation on the MI Choice Medicaid Waiver program, 10 - 11 p.m.The MI Choice program furnishes an array of home and community-based services to assist aged and disabled Medicaid beneficiaries to live in the community who would otherwise be institutionalized in a nursing home. Through this program, eligible adults who meet income and asset criteria can receive Medicaid-covered services like those provided by nursing homes, but can stay in their own home or another residential setting.

Guardianship roundtable, 11:20 - 12:20

Where to begin? Guardianship and the Michigan Guardianship Association

In the rush of news and events over the past few months, it is hard to know where to begin to cover issues that affect people with DD and their families. The U.S. Congress failed to pass radical reforms to our health care system but succeeded in passing radical reforms to federal tax policies that included changes to Obamacare. Both efforts were done without holding public hearings that would have allowed the public and people who actually know something about healthcare, taxes, and the economy, and how they affect our population of people with intellectual and developmental disabilities, to weigh-in before the legislation was voted on.

Recently, Congress reauthorized CHIP, the federal Children’s Health Insurance Program, that enrolled 8.9 million children in 2016. CHIP was designed to cover uninsured children whose families have modest incomes but are not poor enough to qualify for Medicaid. It is paid for with federal and state Medicaid funds. The CHIP program was enacted in 1997 and has consistently received bipartisan and popular support. Nevertheless, it was held hostage to extract concessions while Congress battled over the federal budget and immigration.

Creepy sexual misconduct allegations overwhelmed the news, exposing a broader problem of bullying and harassment, some of it anonymous and on the internet. The problem extends way beyond official government and party politics. People with disabilities and their families are among the victims.

Next on the horizon will be attempts to rein in the cost of Medicaid, Medicare, and Social Security to reduce the deficit caused by tax breaks that most significantly benefit corporations and extremely wealthy individuals.

Meanwhile, life goes on. In our case, this has meant dealing with Danny B.’s 16 trips to the Emergency Department in 2017 and five hospitalizations for aspiration pneumonia. Consider also the life of a 24/7 caregiver of a daughter with severe disabilities as portrayed on Regie’s Blog: “Why I can’t take your call…”, 1/23/18.

I have been accumulating news stories and accounts of events that I want to dig into and write about, so I will begin with guardianship and a guardianship conference that I attended in October 2017.

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Why Guardianship?

The Barker Boys, Danny (41 years old) and Ian (33 years old), have profound developmental and intellectual disabilities. They are adults, but function at the level of infants less than one year old. They can let others know generally how they feel and whether they are happy or upset, but they do not have the ability to communicate in any specific way. They need someone to represent their interests and make decisions for them, because they are not able to act on their own behalf. 

In Michigan, Guardianship is granted by a Probate Court to protect individuals who are not capable of making or communicating decisions in some or all aspects of their lives. My husband and I have co-plenary (full) guardianships for both our boys who are developmentally disabled.

According to a variety of reports and studies (see, for example, pages 3-4 of a 2014 survey of state laws and guardianship practices), about 75% of all guardianships are obtained by parents, other family members, or close friends of the individual needing guardianship. People who do not have close family members or friends to take over this responsibility may have to rely on public or professional guardians who should be held to at least the same ethical standards and oversight responsibilities as families and friends. Michigan Guardianship law for people with DD [see pages 87 to 93 of the PDF version], assures that guardians have access to all the information they need to fulfill their responsibilities. It also provides numerous protections to individuals with DD to prevent unnecessary guardianship, to limit guardianship to only those areas where it is needed, and to promote the maximum amount of independence possible for each individual.

As co-guardians, my husband and I have the authority to represent Danny and Ian when needed, including in person-centered planning through our local community mental health agency, to have a say in how they are cared for, to give consent (or not) to services in the individual service plan, to consent (or not) to medical treatment, to have access to records that are the basis for these decisions, and to disagree with judgements made by others that are not in the best interests of our sons. We can also represent them in complaint and fair-hearing procedures to assure the accountability of service providers and agencies working on their behalf.

Without the protections of guardianship, Danny and Ian would forever be at the mercy of whomever is in control of the situation they find themselves in, whether or not that person knows them or cares about them. Guardianship clearly defines the authority to make decisions, the responsibilities of the court-appointed guardian to the individual and the court, and accountability of everyone involved to act in the best interests of the person under guardianship.

Michigan Guardianship Association

I joined the Michigan Guardianship Association (MGA) and attended their Fall Conference on 10/27/17. I joined out of a desire to establish connections with an organization that provides support and education for court-appointed guardians to help them fulfill their duties under the state’s guardianship laws. The MGA also advocates for the organization to the Michigan legislature on guardianship issues.

The Fall Conference focused on issues related to professional guardians who are appointed by the court and collect a fee for providing the service, but family guardians also participated. Attendance at the conference was an opportunity for social workers involved in guardianship to earn Continuing Education Units required by state licensing.

Most of the meeting agenda was about guardianship for adults who are aging, those with traumatic brain injury, and adults with mental illness. As is usually the case in reports and studies on guardianship, there are few distinctions made between different populations that are covered by guardianship laws. The DD population is a relatively small group with many characteristics that distinguish them from other adults who need guardianship. Developmental disabilities are lifelong and most people with DD do not accumulate money or property that cause many of the disputes associated with the guardianship of aging adults.

Speakers included a physician who is also a state legislator giving the physicians perspective; elder law attorneys who discussed Medicaid and long Term Care, Medicaid “spend downs", end-of-life decisions, and how to protect an individual’s assets. Also speaking were a community mental health worker discussing the issue of hoarding as a special designation in the DSM (the Diagnostic and Statistical Manual of Mental Disorders), a Probate Judge on the financial exploitation of vulnerable adults, and an attorney with an expertise in veteran’s benefits.

The DD population was not singled out at the conference and it is obvious that it is a minority among people who need guardianship. Unfortunately, many influential advocacy organizations for people with intellectual and developmental disabilities (ID/DD), such as The ARC Michigan, oppose guardianship for people with ID/DD, regardless of the severity or nature of the individual’s disability. The rationale for this is based on a set of questionable beliefs, to say the least. Among them is the belief that everyone with ID/DD can make and communicate their own decisions, although some do this in “non-traditional ways”. These groups promote Supported Decision-Making, a method based on the idea that all people with ID/DD can make their own decisions with support from an informal network of advisors. The advisors do not need to be court-appointed and do not bear any legal responsibility for ensuring the success of outcomes. Supported Decision-Making might help those who need guardianship the least, if at all. But as a replacement for guardianship, it does not require the protections of guardianship for those who are the most vulnerable.

The MGA supports guardians and maintains contacts with the state legislature to protect and improve guardianship for those who need it. The organization would benefit from having more emphasis on the needs of the population of people with intellectual and developmental disabilities and their families and more members from our community.

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See also: 

Guardianship vs Supported Decision-Making

Diluting Guardianship Rights

Issues to Consider Regarding Guardianship and Supported Decision-Making

Person-Centered Planning, Guardianship, and Supported Decision-Making

Spring in Charlevoix, MI

In March 2017, the Administration on Community Living sent out a request for comments on “Draft Principles for a Person-Centered Approach to Serious or Advanced Illness”. The announcement said:

“At ACL, we believe that every person should be able to make choices and to control their own decisions, regardless of their age, disability, or illness. [emphasis added] ACL, in consultation with stakeholders from the aging and disability communities, has drafted a set of principles to guide our work in this area, and to enhance existing programs and services related to serious or advanced illness for older adults and people with disabilities.”

What’s wrong with this picture? When you read that first sentence do you hear fingernails scraping on the blackboard or is it just me? Why is the ACL conditioning their request for public comments on the agency’s belief that age, disability, or illness do not impair anyone’s ability to make and control decisions? If you read further in the Draft Principles, you will find that this belief is reinforced and is the basis for proposed policy promulgated by the federal government.

If you live in the reality-based world of families of people with severe and profound physical, cognitive, or behavioral disabilities, you know that “belief” does not cause our loved-ones to have abilities they, in fact, do not have, any more than pixie dust allows them to fly. People with disabilities who are able to make and control decisions for themselves, with or without support from others, should be protected and encouraged in their right to do so. But acknowledging that some people do not have this ability, is the first step in protecting them from neglect, abuse, and exploitation.

Below are comments from VOR, a national organization that “advocates for a full continuum of high quality care and human rights for all people with intellectual and developmental disabilities (I/DD)”. As a member of the committee that wrote these comments for VOR, they are also my personal views.

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VOR Comments on “Draft Principles for a Person-Centered Approach 
to Serious or Advanced Illness” proposed by the 
federal Administration on Community Living

May 12, 2017

VOR is a national nonprofit organization that advocates for a full continuum of high quality care and human rights for all people with intellectual and developmental disabilities (I/DD).

VOR members include families of people with severe and profound life-long disabilities. Many of our family members with I/DD live in Intermediate Care Facilities (ICFs/IID) and other congregate settings such as skilled nursing facilities and smaller community group homes, while others live at home with their families or in supported living situations. Many function at the level of infants or toddlers or have complex behavioral problems that may endanger themselves or others. Some face serious and advanced illnesses similar to those of the aging population. As the lifetime survival of people with these severe disabilities is extended through improved medical care and other services, more and more people with severe to profound I/DD will face these challenges.

Our disabled family members are a small minority of those served in Medicaid-funded programs but their needs are great. For them to survive unharmed requires comprehensive care and understanding of their intensive needs. Most are unable to make decisions for themselves in some or all aspects of their lives. Many have legal guardians appointed by state courts. Most of the guardians are also family members or friends who know the individuals well and are committed to protecting their interests.

VOR supports the availability of a full spectrum of services and residential options appropriate to the needs of the individual including larger congregate settings as a necessary component of the long-term services and supports (LTSS) system, along with Home and Community Based services that support people in a variety of living arrangements.

Principles related to planning and decision-making:

Comment #1: “Supported decision-making principles and practices should guide those who are helping individuals who need assistance with planning and decision-making. Individual goals, decisions, and known views should take priority. “

Supported Decision-Making is a movement based on a controversial ideology that promotes the idea, that with almost no exceptions, all people with I/DD can make their own decisions with support from an informal network of advisors. With SDM, the advisors are not court-appointed nor do they bear any responsibility for ensuring the success of outcomes. SDM proponents view the “Right to Fail” as an important freedom, regardless of the individual’s ability or vulnerability.

The primary goal of SDM is to move away from “substituted decision-making”, where the guardian makes decisions for the incapacitated ward. This approach would then, in fact, be doing what SDM proponents criticize: substituting the judgment of the incapacitated ward with the judgment of a “support team”. SDM is not, however, a suitable replacement for court-ordered and monitored guardianship for those unable to make or communicate decisions for themselves.

VOR does not oppose the use of Supported Decision-Making for all who voluntarily wish to use methods promoted by SDM advocates. All decisions must rest with the individual or the legal guardian as authorized by a state court and it must be understood that guardianship procedures are available to those who need them, regardless of their participation in SDM activities. As such, there is no reason to give up guardianship in order to use Supported Decision-Making.

For people who have appointed health care advocates or have made other arrangements for others to represent them if they become too ill or too disabled to make their own decisions, advance directives should be honored in the person-centered planning process. The appointed representatives should be allowed to make the decisions that the individual has asked them to make.

Comment #2: “All parties should presume that people with real or perceived cognitive, communication, or intellectual disabilities are able to make decisions.”

The presumption, that all people with cognitive, communication, or intellectual disabilities are able to make decisions, is simply false. The underlying causes of these conditions often result in a person being unable to make or communicate decisions in all or some aspects of their lives. In many instances complex decision-making that takes into account possible harmful consequences is impaired. There must be assurances that the individual’s interests are protected and that they are not subjected to abuse, neglect, or exploitation because of their disabilities.

An analysis of the Americans with Disabilities Act regulations by the U.S. Department of Justice concludes that, “…public entities are required to ensure that their actions are based on facts applicable to individuals and not on presumptions as to what a class of individuals with disabilities can or cannot do.” [This is found on Page 193 of Appendix B, a section-by-section analysis Title II of the ADA regulations ; see also The DD News Blog,"What does the ADA 'Integration Mandate' Really Mean?"]

Presumptions that people can make decisions when there is clear evidence that they cannot is a disservice to vulnerable individuals that exposes them to unacceptable risks.

Comment on Principle #4: “Individuals need access to services that enable them to manage their conditions and symptoms, live in the setting of their choice, and be integrated into the community….”

Facilities that provide a higher level of care for people with severe and profound I/DD such as ICFs/IDD and skilled nursing facilities are part of the system of Long Term Services and Supports and should be included in this statement.

These are technically considered institutional placements, but in a 2015 Survey “Giving Voice to Families and Guardians”, VOR found that people living in these facilities and smaller community homes were about equal in the degree of engagement with their communities. Respondents reported that their family members enjoyed an average to high degree of interaction with the broader community away from their ICF and Non-ICF homes (“integration”). [Page 11]

VOR supports person-centered planning principles that acknowledge the full range of needs and abilities for people with I/DD. We support family decision-making consistent with The Developmental Disabilities Assistance and Bill of Rights Act:

“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)

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See also, "Issues to Consider Regarding Guardianship and Supported Decision-Making" from VOR and "Understanding Guardianship and SDM" from The DD News Blog 

VOR position paper on Guardianship vs. Supported Decision-Making

VOR is a national organization that advocates for high quality care and human rights for people with intellectual and developmental disabilities. VOR advocates for a full range of options to address the full range of needs of people with intellectual and developmental disabilities and their families.

The following is a Position Paper  from 11/2016 on Guardianship vs. Supported Decision-Making. 

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Issues to Consider Regarding Guardianship and Supported Decision-Making
By VOR's Issues and Oversight Committee on Guardianship Rights

Individuals with intellectual and developmental disabilities (I/DD) and their parents, family members and guardians may have heard about Supported Decision-Making (SDM), an initiative that could affect their decision-making rights. Some see SDM as an alternative to guardianship, while others view it as an attempt to remove the legal instrument that provides a safety net for vulnerable individuals.  

VOR is a national organization that advocates for high quality care and human rights for individuals with I/DD. We understand the valuable role that guardians play in the emotional and physical well-being of their wards. As advocates who appreciate the diversity of the I/DD community and the need for a wide array of supports, we want to ensure that guardians and family members are aware of the issues connected to Supported Decision-Making so that they can make informed decisions about the care of their loved one with disabilities.

What is Guardianship?

Guardianship is the legal process whereby a state court appoints a person or organization to have the care and custody of an adult or child who has been determined to be legally incapacitated. Parents are the assumed legal guardians of their minor children, but a guardian may be appointed for a child if the parents are not able to fulfill that role. An incapacitated adult is one 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.

Guardianships are awarded to protect the “ward,” the individual with a disability, from abuse, neglect, and exploitation. Guardians are expected to act in the best interests of the individual and to make decisions over medical, psychiatric, behavioral, and all other aspects of the person’s care that are authorized by the court based on the degree to which the individual is incapacitated. Legal guardianship is both a responsibility and a privilege.

What is Supported Decision Making?

The Supported Decision-Making movement is a new initiative that promotes the idea that, with almost no exceptions, all people with I/DD can make their own decisions with support from an informal network of advisors. Supporters of SDM claim that empowering individuals to make their own decisions would make most guardianships unnecessary. The advisors do not need to be court-appointed and do not bear any responsibility for ensuring the success of outcomes. Supported Decision-Making proponents view the “Right to Fail” as an important freedom, regardless of the individual’s ability or vulnerability.

Issues to Consider

Supported Decision-Making might help those who need guardianship the least, if at all. In the process of attempting to change guardianship laws, it could weaken protections for those who are the most vulnerable. Those protected by guardianship include people with severe intellectual disabilities, people with I/DD who are susceptible to manipulation and coercion, and people with I/DD who lack awareness of the consequences of their actions and may cause harm to themselves or to others.

The primary goal of SDM is to move away from “substituted decision-making”, where the guardian makes decisions for the incapacitated ward. Proponents of SDM make the assumption that all people with disabilities are capable of making all decisions for themselves with help from a support team. This approach would then, in fact, be doing what SDM proponents criticize: substituting the judgment of the incapacitated ward with the judgment of a “support team”.

Guardians of people with I/DD usually have an existing network of informed persons to assist them in making decisions for their wards, including other family members, direct care providers, and medical personnel. This is what SDM promotes, but without the protection of court-ordered guardianship. The more individuals are able to express their wishes and play an informed, responsible role in their own decision-making, the more their participation should be included. But, it is irresponsible to remove an individual who lacks the capacity to make his or her own decisions 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 a responsible manner should be examined at regular intervals.

VOR maintains that problems with guardianship can be avoided through strong enforcement and monitoring and better access to information on guardianship. To eliminate guardianship or make it more difficult for family members and friends to become guardians will leave people with I/DD more vulnerable to the abuse, exploitation, and neglect that guardianship is designed to prevent.

When people with I/DD and their families are presented with Supported Decision-Making, the should consider the following: 

• The Developmental Disabilities Assistance and Bill of Rights Act (DD Act) states: “individuals with developmental disabilities and their families are the primary decisionmakers regarding the services and supports such individuals and their families receive and play decisionmaking 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)
• Is the individual prepared to take on the responsibility of Supported Decision-Making?
• Is the individual’s support group prepared to address the changing needs of the individual over the course of their lifetime? How will you maintain and ensure a consistent team of advisors?
• How do you reconcile the “Right to Fail” with the safety and comfort of the individual?
• How do you determine if SDM is not working and legal guardianship would be appropriate?
• You and your loved-ones with I/DD have the right to decide what is best for your unique situation, based on individual need. Take your time in making any major decisions regarding guardianship.

VOR does not oppose the use of SDM for all who voluntarily wish to use methods promoted by advocates of SDM.  All decisions rest with the individual or the legal guardian as authorized by a state court and it must be understood that guardianship procedures are available to those who need them, regardless of their participation in SDM activities. As such, there is no reason to give up guardianship in order to use Supported Decision-Making.

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

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