VOR, "a Voice Of Reason", comments on a National Council on Disability report on guardianship, Part 1

In March 2018, the National Council on Disability (NCD) published a more than 200-page report called “Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities”. The NCD promotes Supported Decision Making (SDM) and other alternatives as a replacement for court-ordered guardianship and includes recommendations for increased funding for advocacy of SDM. 

A VOR committee has read and analyzed the report and sent comments to the NCD. Overall, the report adds to the recent onslaught by some federal agencies and advocacy organizations against guardianship (including family guardians) that tends to dismiss the reality of people with intellectual and developmental disabilities who are unable to make decisions for themselves, in whole or in part. For these individuals the goal of self-determination, as that term is generally understood, is largely unattainable. 

VOR, "a Voice Of Reason", represents primarily individuals with severe and profound intellectual disabilities and their families and guardians. VOR advocates that the final determination of what is appropriate depends on the unique abilities and needs of the individual and the desires of the family and guardians for people who cannot make decisions for themselves.

This is the cover letter for the comments on the specific recommendations in the NCD report:

******************************************

November 4, 2018 

National Council on Disability (NCD)
1331 F Street, NW, Suite 850
Washington, DC 20004

Re: NCD Report, March 22, 2018, “Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities”

To: Neil Romano, Chairman, Lisa Grubb, Executive Director

For 35 years, VOR has advocated for high quality care and human rights for all people with intellectual and developmental disabilities (I/DD). Our membership is mostly comprised of families of individuals with severe or profound intellectual disabilities, often complicated by significant medical, psychological, or behavioral conditions. Many of our loved ones are non-verbal or non-ambulatory. Many engage in self-injuring behaviors. They often require 24/7 care, provided by well-trained and caring direct support professionals. Our family members constitute a minority within a minority. They represent about 5% of the entire population of individuals with I/DD. The home and community-based settings that work for many people with I/DD often fail to meet the needs of these severely disabled, vulnerable individuals.

VOR has reviewed the March 22, 2018 report “Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination”. The consideration of current guardianship law is an important issue upon which to focus. Any recommendations for changes in guardianship policy, however, should recognize that alternatives to court appointed guardianships, even with maximum assistance, are not feasible for everyone. This applies especially to the individuals and their families and friends who we represent.
As stated in the report, 75% of guardians are family members or personal friends. They are the most motivated and in the best position to advocate for the optimum outcome from the decision making process to promote the overall welfare and dignity of the person.

As guardianship alternatives are explored, it is imperative that court appointed guardianship remain an option for those who want or need it. Recognition of the varying needs of different populations who may be subject to guardianship, including people with profound and severe intellectual disabilities, will help ensure that any proposed change to guardianship law gives the appropriate assistance to each person based on individual need.

We welcome your response to our comments and urge you to take them into consideration in NCD deliberations on this important issue.

Sincerely,

Hugo Dwyer
Executive Director, VOR

***************************

VOR Comments Part 2

See also, Guardianship vs. Supported Decision Making

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.

****************************************

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.

*************************** 

See also: 

Guardianship vs Supported Decision-Making

Diluting Guardianship Rights

Issues to Consider Regarding Guardianship and Supported Decision-Making

Diluting Guardianship Rights

In the VOR archives is a 2009 letter from Sam Golden, the Chair of VOR's Government Affairs Committee, to the American Bar Association about efforts to dilute the rights of legal guardians of people with profound developmental disabilities. 

Then, as now, government agencies and federally-funded advocates were attempting to circumvent the authority of court-appointed guardians to make decisions for their wards. In most of the examples cited in the letter, guardians were ignored or their authority challenged when the guardians decisions interfered with the policy agenda of the agency or advocacy organization, usually to close congregate facilities. For their own convenience, agencies and advocates decided that profoundly disabled individuals, who had already been determined to lack the capacity to make decisions or give informed consent, did in fact did have that capability. In many instances, they discussed placement options and other issues without the guardian being present and claimed to have divined the preferences of the profoundly disabled person.

Sam Golden passed away in 2016. Sam was a truly remarkable person and a good friend to many in VOR. You can read more about him at the VOR Website. 

For more on Diluting Guardianship Rights, see "Model law for guardianship restricts guardian rights to act on behalf of incapacitated individuals" Part 1 and Part 2.

***************************************

Diluting Guardianship Rights

TO: American Bar Association Commission on Law and Aging

RE: RECENT EFFORTS TO DILUTE THE RIGHTS OF LEGAL GUARDIANS OF PERSONS WITH PROFOUND DEVELOPMENTAL DISABILITIES. 

DATE: January 14, 2009

I represent VOR, a national advocacy organization representing people with developmental disabilities, and their families.

Nearly all of our members have family members with severe and profound mental retardation and related developmental disabilities. Our loved ones need substantial support in every aspect of life including walking, communicating, bathing, eating and toileting. They function at an infant or toddler’s level although fully grown; they also endure multiple disabilities, chronic medical conditions and/or behavioral challenges. Many also have seizure disorders, mental illness, visual or hearing impairments, or have a combination of these conditions.

In most cases, our loved ones and their peers have been adjudicated incompetent and a legal guardian has been appointed for them, usually a parent or close relative.

We have a serious concern which falls within the Commission’s work on legal issues relating to “capacity, guardianship and surrogate decision-making,” as well as within “disability and individual rights.”

As legal guardians for our adult family members with severe cognitive disabilities, we are facing unprecedented attacks on our legally appointed rights and responsibilities as legal guardians. Like never before, some advocacy organizations for persons with disabilities, some state officials, and even some federal entities, have infringed upon our ability to carry out our duties as guardians, or have otherwise worked to undermine our status as guardians. For example,

Illinois: In a December 2, 2008 letter to families, Lilia Teninty, Director of the Illinois Department of Human Services, writes: “I welcome the opportunity to address your question, ‘Does the Illinois DHS now ask an individual who has a legal guardian about his or her placement preference without the guardian being present?’, and my reference to the Nebraska Plan. As previously identified, we have a responsibility to recognize individual rights in exercising his or her personal choices and preferences, and with respect to this right, we believe that guardian permission is not required to discuss placement options.” (Emphasis added).

Nebraska: The referenced Nebraska plan is a July 2008 Settlement Agreement between the State of Nebraska and the U.S. Department of Justice. Instead of encouraging informed choice with regard to residential placement decisions, this federal settlement agreement instead suggests additional “education” in situations where legal guardians disagree with community placement: “Where family members and/or guardians have reservations about community placement, the State shall provide ongoing educational opportunities to such family members and/or guardians with regard to placement and programming alternatives and options.”

In New Jersey, Georgia, and Florida, and other states, advocates, some of whom are federally-funded, also visit ICFs/MR  residents to discuss placement options, without legal guardian permission. This sort of communication with our profoundly developmentally disabled family members/wards is no different, and no less offensive, than if state and federal advocates entered schools to talk to children, one-on-one, without their parents’ consent. [Intermediate Care Facilities for people with mental retardation - ICFs/MR - are now called  ICFs/IID for Individuals with Intellectual Disabilities]

Illinois: The federally-funded Illinois Council on DD published a “Blueprint for System Redesign in Illinois,” calling for the movement of people from ICF/MR settings over the objections and concerns of legal guardians, stating, “[t]heir objections should not circumvent the process.”

California: In 2002, the federally funded California Protection and Advocacy agency (PAI) filed its second lawsuit to close ICFs/MR, arguing in court against family/guardian intervention, stating, “As a matter of substantive law, parents and guardians of institutionalized persons have different and potentially conflicting interests on matters pertaining to their child’s or ward’s constitutional or statutory rights to liberty and due process.” PAI’s first lawsuit was filed despite overwhelming opposition by families and guardians. PAI’s first lawsuit closed two ICFs/MR and transferred 2,500 people to alternate settings leading to reports of abuse, neglect and death.

Wisconsin: The Wisconsin P&A filed a lawsuit on behalf of minor residents of ICFs/MR, notifying their parents (legal guardians) after the lawsuit was filed in case they “might be interested.”

Maine: A Maine P&A advocate counseled her mentally ill client, William, who was receiving inpatient psychiatric care, that his parents were a “negative force in his life” given their efforts to keep him “institutionalized” due to his severe mental illness. Her subsequent “victory” in winning his release was followed shortly by William murdering his mother.

Centers for Medicare and Medicaid Services (CMS): In 2007, CMS, an agency within the U.S. Department of Health and Human Services, published its official guidance to state governments for state Money Follows the Person programs. In this guide, CMS instructed states (not courts) to critique guardianship performance. VOR objected noting that the CMS MFP Instruction Guide,

“. . . directs states and CMS to critique and challenge the competency of each and every guardian, without regard to the existing judicial process in place, and without regard to statutory requirements relating to the role and responsibilities of guardians appointed by the individual’s state court. It further encourages states to pursue the removal of guardians, who in their standards (as directed by CMS) don’t measure up. Thus, CMS would usurp states’ guardianship authority. This is an unacceptable interference with states’ rights and would put every ward at risk of losing his or her appointed guardian.”

Developmental Disabilities Assistance and Bill of Rights Act (DD Act) Programs: The three federally created and authorized DD Act programs routinely ignore and disrespect legal guardian involvement and choice. Several examples of P&A disrespecting family/legal guardianship involvement were noted above. It is not surprising, then, that the national association for state P&As, the National Disability Rights Network, signed a letter to Congress which called families, many of whom are legal guardians, as “clueless.” In a related example, the National Association of State DD Councils proposed changes to the Act’s “primary decisionmaking” clause which would cut out completely the current legal role of family members and legal guardians of adults with developmental disabilities.

Although characterized as an attack on our rights as legal guardians, the real victims of these undermining actions are our fragile family members with severe and profound developmental disabilities, who depend on our compassion and insights to make sound decisions in their best interests. [Emphasis added] As recognized by the Supreme Court, “close relatives and guardians, both of whom likely have intimate knowledge of a mentally retarded person's abilities and experiences, have valuable insights that should be considered during the involuntary commitment process.” [Heller v. Doe, 509 U.S. 312, 329 (1993)].

Our love for our family members is what motivates our decisionmaking. When advocacy organizations, who have never even met our family members, work to undermine our legal decisionmaking authority, they are working toward an ideological end, whether or not in the best interest of our family members. Our fragile family members are mere pawns in their efforts to eliminate licensed facility care as one residential option for people with especially severe cognitive, physical and medical disabilities.

We respectfully request that the ABA Commission on Law and Aging and the ABA Commission on Mental and Physical Disability Law review our concerns and take action. We would welcome the opportunity to meet with you to further discuss this issue and explore ways that the ABA may help. Respected members of the legal community – from lawmakers, to attorneys, to judges – are in unique position to address this important issue.

Sincerely,

Sam Golden
Chair, VOR Government Affairs Committee

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.

*******************************

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.

Model Law for guardianship restricts guardian rights to act on behalf of incapacitated individuals: Part 1

The Uniform Law Commission (ULC) proposes model laws that promote consistency and uniformity in certain areas of the law among the states. A ULC committee on the “Guardianship, Conservatorship, and Other Protective Arrangements Act” has drafted a model guardianship law that, if approved by the Commission, would recommend to states extensive changes in guardianship procedures.

The proposed law embraces a controversial movement that has emerged in recent years to limit the use of guardianship and to replace it with alternatives to “substitute” decision making. Substitute decision-making occurs when a person lacks the capacity to make or communicate decisions on their own behalf, in some or all aspects of their lives, and a guardian is appointed by a state court with authority to make those decisions. Supported Decision-Making (SDM) for individuals with intellectual and developmental disabilities (I/DD) and other disabilities, promotes the idea that an informal network of advisors should be made available to the individual for support and that guardianship should be avoided at all costs. Proponents of SDM believe that all persons with disabilities, with almost no exceptions, have the ability to make decisions for themselves when given the support they need to do so.

[Read more about the Uniform Law Commission and Guardianship vs. Supported Decision-Making. Here is the draft of the proposed guardianship law.]

VOR, a national non-profit organization advocating for high quality care and human rights for people with intellectual and developmental disabilities, has submitted comments to the ULC committee on guardianship. The comments are the work of the VOR Issues Oversight Committee of which I am a member.

The Comments consist of a letter to David English, the chair of the ULC guardianship committee (Part 1) followed by specific comments on the text of the draft model guardianship law (Part 2). 

***************************

Letter to David English, the chair of the Committee on Guardianship, Conservatorship, and Other Protective Arrangements Act

Dear Mr. English:

VOR is a national advocacy organization working to protect high quality care and the human rights of all individuals with intellectual and developmental disabilities (I/DD). We support a full range of services and residential options to meet the needs of this diverse population.

VOR’s membership consists of family members and guardians of individuals with intellectual and developmental disabilities (I/DD). We understand the importance of families and guardians in helping to ensure that individuals with I/DD have choices available to them that optimize needed services and supports and honor their unique personhood.

VOR has a responsibility to its members to advocate for guardianship policies and procedures that protect the health and safety of people with I/DD and respect their civil rights. We understand that the ULC Committee on Uniform Guardianship, Conservatorship, and Other Protective Arrangements Act, chaired by David M. English, JD, is finalizing its model act. We also understand that, Uniform Acts are model statutes produced by nongovernmental bodies that may become law if they are independently adopted, in whole or in part, by state legislatures. Because of the potentially broad affect of this Act on guardianship policy, VOR is concerned with some of the proposed changes.

Specifically, we are concerned with changes that would incorporate the principles of “Supported Decision-Making” (SDM) into guardianship law and promote its use as a substitute for guardianship. SDM, as it is promoted by organizations that receive funding from the federal Administration for Community Living, is based on a belief that everyone with a disability can make his or her own decisions with almost no exceptions. Our families know better from their experiences of living with disabled family members who have complex cognitive, physical, and behavioral disabilities. Some function at the level of infants or young children or have intellectual and behavioral disabilities that prevent them from understanding the ramifications of their decisions. Although some people with less severe intellectual disabilities may find that SDM gives them the tools they need to make decisions, there are others who do not recognize or appreciate risky or dangerous situations and need guardianship to prevent them from being harmed by the consequences of their decisions.

Although SDM is meant to be an alternative to substitute decision-making, we believe that SDM is another form of substitute decision making, but without the accountability of guardianship. These concerns are outlined in VOR’s attached Position Paper on Guardianship and Supported Decision-making.

We are providing comments on the “Guardianship, Conservatorship, and Other Protective Arrangements Act.” VOR members who serve as guardians for their intellectually disabled family members consider guardianship to be an honor, a privilege, and a labor of love. Our members are representative of the people who must live up to and implement the standards and policies of this proposed model law, and as such, our input is crucial to help ensure that the model legislation reflects the real world demands and needs of individuals with intellectual disabilities in relation to guardianship. We welcome your sincere consideration of our comments and look forward to your response.

Sincerely,

Caroline Lahrmann
VOR President

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.

*******************************

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)

****************************

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. 

**********************

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] 

********************

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